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Responses to 2009 IACC Request for Information

Please note that all comments are provided in their original form and in their entirety with the following exceptions: 1) Spelling errors were corrected and abbreviations changed to full length words to facilitate readability and text searching and 2) profane language was redacted. Respondent numbers in the RFI are not sequential due to test cases (technical staff and others submitting dummy data to test the system, which took up a respondent number each time) and unsubmitted responses (did not hit "submit" button, despite automated reminders to do so) that were logged into the system. Also, some respondents did not provide answers to every question or subquestion. Blank responses were not posted. The comments posted reflect the opinions of members of the public who responded to the RFI. These comments are not endorsed by and do not represent the views of the Federal government.

The responses to the IACC RFI are organized by Strategic Plan question. All of the responses to each question and sub question (Parts a, b, and c where applicable) are grouped together to allow the reader to easily review all material submitted in response to each question. When reviewing the responses, it may be helpful to understand that responses were submitted sequentially. Comments such as "previous" or "see above" sometimes refer to parts a or b of a person's response for the same Strategic Plan question, but in other cases refer to parts of a response to an earlier Strategic Plan question. In the case of the latter, the earlier comment referenced can be located by navigating to the Strategic Plan question indicated and then finding the respondent number associated with the comment of interest. Similarly, respondents sometimes referenced readers to previous responses by listing a specific question number (e.g. See IIIc). These materials can be located by navigating to the question listed and locating the respondent number of interest.

Question 1: When Should I Be Concerned?

Respondent 0013

Eileen Nicole Simon
conradsimon.org This link exits the Interagency Autism Coordinating Committee Web site

a. Gaps and underrepresented research areas.
My concerns began right after the traumatic births of my first two sons. My first baby had a large cephalhematoma that covered the right side of his head for most of his first year of life. The pediatricians told us not to be concerned, and not to be concerned with his delayed motor and language development. My second son was stillborn, then brought back to life by resuscitation. He also became very jaundiced during his first week of life. His motor development was right on time, but his language developed as an increasing repertoire of phrase fragments learned in one context then applied according to Kanner's description of 'irrelevant and metaphorical' comments in new contexts. I thought birth injury had just been bad luck until Dr. George Morley responded to my website. See (1) Morley GM. Cord closure: Can hasty clamping injure the newborn? OBG Management, July 1998: 29-36, and (2) his website at http://www.autism-end-it-now.org/ This link exits the Interagency Autism Coordinating Committee Web site

b. New opportunities.
Many children with autism suffered complications at birth. Epidemiologists never make more than passing mention of how the brain might be affected, then suggest that "some defect" in the mother or child caused the difficult birth. See Windle WF. Brain damage by asphyxia at birth. Sci Am. 1969 Oct; 221(4): 76-84. Monkeys were prevented from breathing and the umbilical cord was clamped off at birth. Damage to the brain was in the inferior colliculi of the midbrain auditory pathway. There are at least 13 case reports published of people who lost the capacity to understand spoken language following bilateral injury of the inferior colliculi. See citations to these case reports at http://www.conradsimon.org/IACCMay12Comment.pdf This link exits the Interagency Autism Coordinating Committee Web site beginning at the bottom of page 8. How much more serious this would be for a human infant with damage of the inferior colliculi caused by asphyxia at birth.

c. Research priorities.
Look at (1) Odd DE et al. Resuscitation at birth and cognition at 8 years of age: a cohort study. Lancet. 2009 May 9;373(9675):1615-22, and (2) the response to Odd et al.'s article by Mercer J & Bewley S. Could early cord clamping harm neonatal stabilization? Lancet. 2009 Aug 1;374(9687):377-8. The effects of asphyxia at birth caused by umbilical cord clamping (now also to harvest placental blood) and other invasive obstetric and neonatal care protocols need to be examined for safety. Medical error must be looked for, not disregarded. See the three articles by AF Robertson, Reflections on Errors in Neonatology in the Journal of Perinatology. 2003 Jan;23(1):48-55, Mar;23(2):154-61, and Apr-May;23(3):240-9.

Respondent 0016

b. New opportunities.
There are few, if any, interventions that work for these individuals and currently there is no research to develop them. We need research to develop successful interventions for this group.

c. Research priorities.
In spite of lack of communication being their most severe deficit, there is currently no research to develop communication interventions. We need this kind of research now.

Respondent 0018

b. New opportunities.
There are several opportunities to advance the first long term goal (Identify a panel of biomarkers that separately, or in combination with behavioral measures, accurately identify, before age 2, one or more subtypes of children at risk for developing ASD by 2014. IACC Recommended Budget: $33,300,000 over 5 years). Among existing studies one recently published in Prostaglandins, Leukotrienes and Essential Fatty Acids entitled "Novel plasma phopholipid biomarkers of autism: Mitochondrial dysfunction as a putative causative mechanism " by Pastural, et al. highlights the potential for recognition of mitochondrial dysfunction as both a warning sign and treatment option for autism.

c. Research priorities.
Diagnostic methods that not only identify autism, but potential subtypes (mitochondrial vs. immune dysfunction for instance) should be stressed so that not only can autism be identified early but appropriate medical interventions can be made.

Respondent 0022

a. Gaps and underrepresented research areas.
Early diagnosis is relatively well covered at present. There is a lack of understanding of the different variants of autism and a tendency to lump everything into one label, which doe not help.

Respondent 0023

John Best
Hating Autism blog

a. Gaps and underrepresented research areas.
You failed to mention Verstraeten's first study. If you read what it said, you will have all the knowledge you need and you can stop wasting our time with all of this extraneous nonsense that you have written. You don't seem to have any men on your committee who are fathers' of autistic children. You have some women but that doesn't cut it. You need men who know how to make decisions and shove your disingenuous words back down your throats. You boneheads aren't making the slightest effort to be honest about autism and I'm bothering to write this so you know what the average citizen thinks of you. You aren't fooling anyone with your delaying tactics. All you're doing is showing parents of injured children how corrupt you are. We had all the answers we needed about autism a long time ago and you people think you can pretend you have never heard what we've been telling you all this time. So, now it's time to get your heads out of your [profane language redacted] and pay attention.

b. New opportunities.
We know how to cure autism. Your "evidence based medicine" [profane language redacted] isn't going to fly here, nitwits. You cure autism by removing the mercury that was injected into childrens' brains. Take everything else you're trying to use to con people from learning the truth and shove it up your [profane language redacted]. Tell everyone the truth.

c. Research priorities.
You don't need any research. Just tell the truth.

Respondent 0029

a. Gaps and underrepresented research areas.
Does screening for ASD improve outcomes? (as opposed to making information and assessment resources readily available and waiting for parents, teachers or doctors to request assessment? Does earlier diagnosis (before age 3) for kids whose parents don't perceive a problem improve outcomes or merely cause disruption to families during a critical family bonding period?

b. New opportunities.
Research should be practice based so that it is reality based in terms of being logistically and financially feasible.

c. Research priorities.
Do AAP's developmental screening recommendations improve outcomes compared to a less proactive approach? Diagnoses can help get kids into services earlier and they can also cause major stigmatization, depression among key caregivers, and utilize resources that might be equally effective if administered later or not at all.

Respondent 0031

a. Gaps and underrepresented research areas.
Lack of adult services

b. New opportunities.
Study what works for adults and how to support them.

Respondent 0035

a. Gaps and underrepresented research areas.
There appears to be a plethora of research regarding early warning signs of autism, more information needs to be given to parents and pediatricians so that they can start to recognize the signs and start interventions. More research should also be done regarding predictors of outcomes. For example, if a child has certain skills but not others, do they make more progress than a child who has a different skill set? Lastly, research needs to be conducted on the type of concern: did the child have skills and then lose them or has the child always been delayed? Does this make a difference in outcomes?

b. New opportunities.
-Comparing type of concern - did the child develop skills then lose them or did the child always have a delay -comparing skills present - does having certain skills predict better outcomes -increasing parent and pediatrician knowledge of concerns and what to do.

c. Research priorities.
I think the biggest priority is spreading the information to pediatricians and parents

Respondent 0037

a. Gaps and underrepresented research areas.
That train wreck has left the station and will be crashing in our lap starting in 2010.To little to late. NEXT.

b. New opportunities.
I believe that starting to look at biomarkers are the way to stop or at least slow down this tragedy.

c. Research priorities.
I believe that we can agree these kids are predisposed but there is some kind of environmental event that has stricken these kids.

Respondent 0042

c. Research priorities.
Having a standard diagnostic tool that can be given to all children starting at 12 months.

Respondent 0046

a. Gaps and underrepresented research areas.
You should be concerned if your Pediatrician suggests a Developmental Screening. You should also be concerned if your child is slow in reaching his/her developmental milestones. I had two older children, so when my third child began to show sensory issues at four months, I was very concerned!

b. New opportunities.
New opportunities include the access to Developmental Screening through your Pediatrician. I did not have this available to me 15 years ago, and it was extremely frustrating!

c. Research priorities.
If the Mother/Family, has concerns when the child is under one year those concerns should be taken seriously. A Mother knows her child, and is the best advocate!

Respondent 0047

a. Gaps and underrepresented research areas.
It is essential that the medical community be more open to the possibility that external causation, such as toxicity in the environment or immunizations, COULD be a factor in a child's development of ASD. There is no INDEPENDENT (of drug companies) research that establishes this factor one way or the other, and in fact statistics clearly seem to indicate that SOMETHING that happened about the same time the immunization schedules were accelerated CAUSED INCIDENCES OF ASD TO ESCALATE AT AN ALARMING RATE. It is disastrous for our children and criminal of us that we have turned a blind eye to the possibility that there could be a connection, and allowed the pharmaceutical-backed "research" to deny such a connection, to the detriment of tens of thousands of children.

b. New opportunities.
INDEPENDENT studies to explore the possibility of a link between accelerated immunization schedules and epidemic rates of ASD. INDEPENDENT studies to find ways to test children to see if they are predisposed to have adverse reactions to the chemical invasion of their bodies by vaccines. INDEPENDENT studies to find possible biomedical manifestations within the bodies of children affected by ASDs, such as digestive disorders and immune disorders.

c. Research priorities.
Testing for immunization links should be a first, followed by finding ways to identify kids who are predisposed to the condition.

Respondent 0049

a. Gaps and underrepresented research areas.
When a baby consistently misses developmental milestones like sitting up, rolling over, speaking, walking.

b. New opportunities.
Parents need to understand that they don't need to fear autism. So much of the autism diagnosis revolves around it being tragic...it isn't productive to grieve over reality. Parents need to know about early intervention strategies, providers, research, parent groups and advocacy organizations in their area.

c. Research priorities.
Should focus on what the child can do and work that into therapies. If the child is very spacial, incorporate that strength in fine motor therapy. Autism in a child requires neurotypical adults to think creatively.

Respondent 0052

a. Gaps and underrepresented research areas.
common warning signs - often these kids have unusual sleep patterns or eating habits (besides lack of eye contact & social interaction) from the start that basically get ignored because they aren't causing serious issues. My son, for example, has always slept far less than most of his peers- not because he was in pain, but just because he didn't need it and his eating habits have always been off as well, but since neither of these issues was causing any serious harm in and of themselves, the doctor and I both pretty much ignored them. Now that I am meeting more and more parents of these special kids, I am finding that this is far from unusual. If we could ID these signs early, perhaps many kids could be diagnosed much faster and more accurately.

b. New opportunities.
As I stated above I believe that IDing the common early warning signs is important, but just as important is that the research studies and advertising of results be done so that both doctors and parents can be aware of when to say "Hey this goes beyond basic sleep deprivation. There could be something else here." At minimum medical professionals need to be aware of these things to help ID these symptoms- and consequently these kids- as early as possible.

c. Research priorities.
Because getting help to these kids as early as possible seems to be key to their ability to adapt and overcome their disabilities, I believe that finding new ways to ID these kids as soon as possible is the obvious prioritize. After that it's simply a matter of getting the word out so that people can learn to recognize the early warning signs.

Respondent 0054

a. Gaps and underrepresented research areas.
The use of postmortem autopsies in persons with autism and research involving what could destroy mirror neurons in rhesus monkeys. Also finding autistic adults, the older the better, and persuading them to will their brains to science. Research involving norepinephrine in the brains of autistics since dorsal tegmental bundle goes through areas of autism including cerebellum and hippocampus.

b. New opportunities.
I am concerned that neurodiversity proponents such as Ari Ne'eman and Katie Miller are allowed to testify at these meetings, they should not be allowed to testify. Nor should anyone else who believes in neurodiversity

c. Research priorities.
Again, Ari Ne'eman, Katie Miller and other anticure and neurodiversity activists should not be allowed to testify before the IACC. Stephen Shore and John Robison should not be allowed to review research paid for at taxpayer expense that is supposed to find out how to cure and prevent autism. These individuals are not qualified and they are opposed to a cure for autism. Also Morton Ann Gernsbacher's funding should be discontinued immediately. She is trying to claim autism is not harmful and that no cure or prevention should be found.

Respondent 0055

a. Gaps and underrepresented research areas.
Education of pediatricians in the early signs of PDDs, what works and what doesn't in improving detection.

b. New opportunities.
The logic of early intervention is sound, but we don't have much work on what effect intervention has through the school age and adult years for those who did not receive it as young children. The assumption is that it is only effective in the very young, and that is bad news for the older kids and adults, - however there isn't much science out there.

c. Research priorities.
Education without sensationalism, take the work out of the hands of the extreme advocates and put it in the hands of the families and their physicians.

Respondent 0057

a. Gaps and underrepresented research areas.
verbal behavior

b. New opportunities.
Parents need real time intervention strategies to do at home following a hierarchy of skills to build existing skills to an age appropriate level, especially in the areas of verbal behavior (not speech per se) and social skills

c. Research priorities.
Families adapt to the skill level of their child and often don't realize how their child's skills relate to age appropriate levels...or blame the disability for the skill discrepancy rather than use a systematic strategic plan for skill building based on a true assessment of their child's current skill level. This results in a helter skelter approach by various therapeutic approaches that often misses some skill repertoire areas.

Respondent 0059

a. Gaps and underrepresented research areas.
FIRST THING is Tom Insel has family involved in making of vaccines, not right! I have three family members damaged by booster vaccines. *Daughter had Kawasaki's six weeks after DPT shot when she was 2. *Same daughter at five years old, passed out with 106 temp. thirty minutes after her fifth and last DPT shot. *Same daughter now 28 years old reacted to the third Hib vaccine a year ago and now has an inflammatory unspecified with high SED Rates, stiff like an old woman *My son reacted to a DPT shot at six months old with 105 temp and passed out *The same son at nine months old reacted to the third DPT shot six hours later with a stroke (Ped insisted). * 6 weeks later a strange fever and grand mal seizure. * Another 6 weeks a strange fever and yet another grand mal seizure. * Today he has Tourette's, epilepsy, Asperger's, fine motor skills ruined. *My husband reacted to 2 tetanus shots. He today has mitochondrial disorder not inherited but environmental acquired. O2 is low

b. New opportunities.
Vaccinated vs. unvaccinated studies needs to be done. Tom Insel (the head of this organization) his brother Richard Insel earned 4 million dollars from the Hib vaccine. Tom Insel who determines what does and does not get looked at as the cause of autism has stopped all research in looking at vaccines as the cause of the rise of autism. He used a poor metaphor of not keep looking under the same rock (vaccines) for the 16th time. Same old politics. I want Tom Insel to resign, I am concerned that Tom Insel has special interest in protecting the vaccine industry, other than preventing disease. I am concerned that with every increase of an extra booster to induce immunity to those people whose immune systems are slow to build immunity toward a certain disease, these same boosters are dooming and hurting others that have very sensitive immune systems toward the same diseases. Every one has a point of damage, this should be researched.

c. Research priorities.
*Look at how the vaccine boosters are harming and causing immune disorders, because it is. It is a waste of research dollars to look under other rocks really ---- Tom Insel! *Titers for vaccines to see if more boosters in a child is really needed. This may have to become a common practice to protect those people that have had enough of a vaccine--prevention of autism! * What is the exact pathways that are messing up the Krebs cycle, and the treatments to either improve or return the immune system to the way it was prior to a vaccination. *Some ideas on what to do with severe autistics, where they will be safe and happy and taken care of.

Respondent 0060

a. Gaps and underrepresented research areas.
Regression statement must reflect that there are individuals who regress into autism and not stated as a "maybe" occurrence. Co-occurring medical conditions mentioned without acknowledgement of the difficulty in getting medical attention subsequent to ASD diagnosis. Reports from clinicians on behavioral improvements via medical treatment of co-occurring conditions that improve an individual's functionality. Rigorous prevalence studies of adults born before 1987 compared to those born after 1987 to determine and/or confirm the contribution of the environment relative to diagnostic changes in growth of autism cases.

b. New opportunities.
Development of sensitive screening tools to detect subtle development differences to better support epidemiology and risk factor studies. Development of screening tool for co-occurring medical conditions as possible red flags and use in identifying biomarkers associated with these conditions. Prevalence measures to assess whether the adult ASD phenotype differs from teenage ASD phenotype. Development of rapid screening tools for adults to assure that appropriate and effective services are delivered.

c. Research priorities.
We anticipate that an objective that was deferred last year will be considered again this year - Effectively disseminate at least one valid and efficient diagnostic instrument (e.g., briefer, less time intensive) in general clinical practice. We would caution that the use of research funds stay exclusive to research as a better use of already limited resources and recommend that this objective, if considered this year, be designated as dissemination research and not tool dissemination.

Respondent 0063

b. New opportunities.
We need ALL pediatricians to become knowledgeable in screening for autism. I knew from the moment my son was handed to me that something wasn't right. I took him to 4 different pediatricians because he didn't eat right, sleep right, roll over, sit up. Help Me Grow was our savior at 8 months to identify milestone development delays. The state-run intervention preschool program helped to identify sensory deficiencies. It wasn't until he was 4 that we took him to a developmental pediatrician and finally had a name for it –Asperger's syndrome. NO healthcare professional EVER screened or suggested screening for autism.

Respondent 0074

a. Gaps and underrepresented research areas.
What is the interval between parents becoming concerned over their child and the date of diagnosis by a medical doctor?

b. New opportunities.
Parents know when something is wrong. Pediatricians need to take parents concern seriously and not offer false reassurance, which wastes time that a child with autism could start treatment.

Respondent 0075

a. Gaps and underrepresented research areas.
In 70 years of research, the POSITIVE ASPECTS of The Neurological Condition That Can & Does Result In Autism have been widely ignored. These HIGHLY IMPORTANT aspects are most easily identified in adults, whom historically have been abandoned and ignored by the Medical Psychological Academic Community Claiming Concern With Autism. The Medical Psychological Academic Community Claiming Concern With Autism is also very slow to admit that only 5 - 10% of their "treatees" become employed, of whom the national average annual remuneration is USD $6,000 (no typo, 6k). We need to look at the entire personality of people with ASD. We need to look at all of the real world life needs of people with ASD. We need to listen to adults living on the spectrum who have, since at least 1969, been telling the Medical Psychological Academic Community Claiming Concern With Autism that their concept of a terrible and hopeless disorder is NOT as the Medical Psychological Academic Community Claiming Concern With Autism has historically assumed. If the research and treatments continue ignoring the above, concentrating on deficits, then the Medical Psychological Academic Community Claiming Concern With Autism's lack of success will remain.

b. New opportunities.
Listen to the many communicating adults. Compile and follow their experience and guidance as to what is actually needed. Organize a way to learn, understand and organize a personality outline, including ALL TRAITS positive and negative of a person with the neurological condition that can and does result in autism. Organize a way to learn and understand the complete Life Needs of a person with the neurological condition that can and does result in autism, and how their complete personality interacts with their Life Needs. We can furnish a very useful and effective framework to do just that, if no one else can. See: Part I c, for a brief glimpse; II b, for acronyms; IV b, and VI c for more brief discussion.

c. Research priorities.
Looking at and understanding the personality traits and how they function in autistic individuals of all ages, is of MAJOR importance (holistic approach). Because 70 yrs of concentrating only upon misunderstood behavior of frustrated, apprehensive, and worn-down children, has resulted in notably poor results in adulthood, where individuals spend 80% of life. An understanding of people with autism is best organized, in this hierarchy: Sensory Issues, Perception Issues, Reaction Issues (to S&P), Ability Issues, and then Thinking-System issues. Also looking at and understanding the individual's Mind/ Body LIFE Needs, and how the personality interacts, is also of MAJOR importance. This is best organized in this hierarchy: Respiration, Hydration, Nutrition, Sleep, Elementary Harborage, Understanding Abnormalities, Elementary Horizon Expansion, Esteem of Self and Capability, Identifying Friends, Advanced Harborage, Developed Horizon Expansion, and Establishing Best Independence.

Respondent 0077

a. Gaps and underrepresented research areas.
I am not certain if I have any questions in this regard. Perhaps, some information regarding the chances of neurotypical vs. spectrum should be provided to newly wed couples, considering their family histories. However, this should not be singled out, rather, as a part of many other genetic risks.

b. New opportunities.
What is the best way of educating couples considering children (either NT or AS) about the likelihood of having a child on the spectrum?

c. Research priorities.
N/A

Respondent 0095

a. Gaps and underrepresented research areas.
I think the question about who is vaccine-sensitive has NOT been adequately addressed. Whether it is the adjuvant, the preservative or the actual mechanism of the shots themselves, I would like to see this issue put back into the recommendations. I have a 9 year old son with Autism who was NOT a vaccine-injured case, but whose immune system and biology suggests that perhaps the schedule would could have been changed a bit. Luckily, I had a pediatrician who realized some of the biological deficits my son was experiencing and did not push all the vaccines on the mandatory schedule. Please add some money back into this. We need to help our citizens vaccinate their children and at-risk populations and the longer there are no clear answers, the harder it is for parents to chose what is best.

b. New opportunities.
1. Is the current schedule really necessary? Could the vaccines be spread out? Is there a population that should be identified as "sensitive?" 2. What kinds of biological i.e. GI, nutritional, infectious issues might be more related to the autism population than to others?

Respondent 0105

a. Gaps and underrepresented research areas.
Information needs to be gathered to compile a database (booklet) detailing the early signs observed as early as from day one after birth by sensitive parents (mainly mothers) or relatives and caregivers; signs that later proved to be associated with ASD, and that are frequently ignored by pediatricians, particularly if babies look smart. The early signs are a "warning" for special care and research and should not prompt unnecessary anxiety. Maybe it is time to start the implementation of the Obama's Administration electronic health-medical record, for every child with early signs of ASD.

b. New opportunities.
The abundance of many different surveys, research protocols and publications, on the topic of ASD proliferating like "mushrooms", several of which are so grossly lacking in even the basic rules of protocol specifications, as to place their credibility in question. As "publish or perish" is the rule in academia, researchers, in their eagerness to produce as many scientific papers as possible, to gain grants and promotions, fail to adequately collaborate with each other to compare and produce more comprehensive protocols, surveys and research articles. The outcome of an incomplete or partial survey or study, could lead to incomplete or misleading conclusions, unintentionally deceiving both the medical field and parents. We still have a long way to go before we can safely say that we have evidence based medicine, research and medical treatments for ASD. But TIME is of the essence, as our children are growing.

c. Research priorities.
In general, although ASD has a very strong genetic background, fathers are excluded from even the most advanced and comprehensive cohort studies that explore the interplay of environmental and genetic risk factors. It is not unusual for the autistic traits of a father to render them successful professionals, such as university professors, as some obsessions and compulsive behaviors are key to success. Unfortunately, this factor is rarely taken into consideration causing the fathers to be left out of most studies, which can then lead them to hold "refrigerator" mothers accountable. Studies on fathers and their extended family's mental health problems are rare and their autistic traits, overlooked.

Respondent 0116

a. Gaps and underrepresented research areas.
I think the information is becoming more well known. I am concerned with the level of information that most pediatricians seem to have about initial symptoms in babies, though. I have parents coming to me asking about symptoms because their pediatricians are not catching the symptoms.

b. New opportunities.
I believe more grassroots education for pediatricians and staff.

Respondent 0125

a. Gaps and underrepresented research areas.
To my untrained eye, the Baby Siblings Early Surveillance Project is a great project to increase our understanding on early detection and signs. I would urge the IACC to support this research project and then focus on the other strategic plan questions.

Respondent 0131

a. Gaps and underrepresented research areas.
Because of the challenge of identifying very young children with ASD there is currently very limited research on the accuracy of broadband screeners to identify young children at risk for ASD. Autism-specific screeners use parent report and/or interactive observational measures. Screeners with high sensitivity and specificity that identify early signs of behavioral, cognitive, and communication impairments (e.g., those sensitive to identifying nonverbal signals, lack of interest in faces, and lack of joint attention) are critical to accurate and early diagnosis.

b. New opportunities.
Although research indicates that having families play a critical role in the intervention process is an important part of effective programs for children with autism, insufficient research is available to provide clear indications regarding which services and support strategies or combinations are most effective (NRC, 2001). Concerns, priorities, and perspectives of the family need to actively shape educational planning. All of the comprehensive intervention programs with the best treatment outcomes include a strong family component. Family members should be supported to be effective members of the educational team and provided with the opportunity to learn strategies for teaching their child new skills and reducing problem behaviors (NRC, 2001).

c. Research priorities.
Support research designed to assess the sensitivity and specificity of existing assessment screeners/tools to improve the accuracy of early identification of individuals with ASD. Research regarding the development of outcome measurement instruments for the ASD population is also greatly needed, especially for preschool and school-aged children. Support research designed to assess the efficacy of behavioral treatment approaches to determine which intervention(s) yield clinically significant improvements in speech, language, and social communication. Develop at least five measures of behavioral and biological heterogeneity in children or adults with ASD beyond variation in intellectual disability that clearly relate to etiology and risk, treatment response and/or outcome by 2015. ASHA would strongly encourage a focus on the behavioral research specifically in the realm of effectiveness of speech and language treatment.

Respondent 0133

a. Gaps and underrepresented research areas.
The M-CHAT (Modified Checklist for Autism in Toddlers) as a basic screening tool is not being fully utilized to provide early identification, and standards of early ID are difficult to provide (research shows us early is better, but there are very early markers that may be present and show a need for intervention, and because the diagnosis is a moving target, services cannot be provided (it is currently hard to prove an ASD diagnosis in a 17 month old). Research needs to consolidate early markers and agree upon the need for very early identification.

b. New opportunities.
See above

c. Research priorities.
Early markers, early diagnosis, and appropriate interventions for families (some treatment modalities that may be appropriate for older children with autism are NOT appropriate for infants and toddlers. Look at modalities that have working documentation (like DIR) as opposed to those who, because they can be quantified, look like they are "proven," re: ABA.

Respondent 0137

a. Gaps and underrepresented research areas.
A number of studies have documented abnormal plasma levels of sulfur metabolites. Here are 3: 1. Novel plasma phospholipid biomarkers of autism: Mitochondrial dysfunction as a putative causative mechanism. Pastural E, Ritchie S, Lu Y, Jin W, Kavianpour A, Khine Su-Myat K, Heath D, Wood PL, Fisk M, Goodenowe DB. Prostaglandins Leukot Essent Fatty Acids. 2009 Jul 14. [Epub ahead of print] 2. One Carbon Metabolism Disturbances and the C667T MTHFR Gene Polymorphism in Children with Autism Spectrum Disorders. Paşca SP, Dronca E, Kaucsár T, Craciun EC, Endreffy E, Ferencz BK, Iftene F, Benga I, Cornean R, Banerjee R, Dronca M.J Cell Mol Med. 2008 Aug 9. [Epub ahead of print] 3. Metabolic endophenotype and related genotypes are associated with oxidative stress in children with autism. James SJ, Melnyk S, Jernigan S, Cleves MA, Halsted CH, Wong DH, Cutler P, Bock K, Boris M, Bradstreet JJ, Baker SM, Gaylor DW. Am J Med Genet B Neuropsychiatr Genet. 2006 Dec 5;141B(8):947-56.

b. New opportunities.
Autism appears to be a reflection of interrupted epigenetic regulation of gene expression during development that especially affects the brain. Specifically, it appears to reflect impaired methylation associated with oxidative stress. Sulfur metabolism is the key source of antioxidant resources. It is therefore critical to recognize abnormal reduction-oxidation reaction and methylation status as early as possible so that normal epigenetic regulation of development can resume. Plasma levels of sulfur metabolites should be routinely measured in "at risk" children and in children with early signs of autism. At the earliest possible stage, individuals with abnormal levels should be provided with metabolic treatments which have been shown to normalize their levels.

c. Research priorities.
Research efforts should be directed toward facilitating routine clinical measurement reduction-oxidation reaction and methylation-related metabolites. Clinical laboratory methods should be brought on-line to make this testing a routine part of early screening. The metabolic research is convincing and it now needs to be translated into clinical practice.

Respondent 0140

a. Gaps and underrepresented research areas.
-Impact of full schedule of vaccines in the oxidative stress, inflammatory answer, potential mitochondrial dysfunction- in a causative way or in an aggravating mode, and systemic impact of the combination of them in genetically susceptible children -Impact of full schedule of vaccines in the oxidative stress, inflammatory answer, potential mitochondrial dysfunction and systemic impact of the combination of them in (epi) genetically susceptible children- even if they are not properly detected. That is children with malabsorption- and minerals (Ca/Mg/Zn/Fe),essential fatty acids (EPA and EFA), amino acids and vitamins deficiencies ( A- as cis retinol-, B, D3, C and E)deficiencies in the management of xenobiotics- including vaccines -Impact of combination of use of antibiotics for non-preventable diseases of the infancy with the vaccines , especially without the replenishment of gut flora -Impact of coexposures in time first 3 years of life and role of glutathione and antioxidants.

b. New opportunities.
-The proteomics is under strong development. The (mis)management of proteins by different subgroups of ASD should be adequately studied in the susceptible group- not in epidemiology studies -The mismanagement of proteins and the link to the xenobiotics metabolism under certain medical conditions in the first 2 years of life (inflammation, oxidative stress, Gut flora imbalances) -The mismanagement of proteins in the metabolism and excretion of xenobiotics- including gluten and casein -The role of the GFCF diet in the change of the biochemistry and metabolism of toxic and essential elements, with periodic checkings in blood, urine and FS in ASD populations -The role of the antioxidation status- not only glutathione system but also thioreduction-oxidation reactionin system- in ASD oxidative stress and inflammatory reactions to xenobiotics -The immune acquired imbalances and the cause of the adverse reactions to xenobiotics from the developmental point of view- enzymes, metabolism, physiology of ASD.

c. Research priorities.
To consider properly parental concerns about adverse reaction to vaccines To consider properly anecdotal findings about (auto)immune, mitochondrial, toxicological , gastrointestinal, endocrinological, nutritional, metabolic and biochemical imbalances found in different subgroups of autistics (children, teens and adults) and the role of co-infections of viruses, bacteria and fungus in ASD.- To analyze the shift in the paradigm of autism as a genetic condition of psychogenic nature to a biological problem related to genetic susceptibilities with neurological and behavioral manifestations- depending on the case and at an individual basis To construct research groups of toxicologists, immunologists, gastroenterologists, biochemists, experts in metabolism, specialists in mitochondrial dysfunctions, focused in the glutathione system and xenobiotics metabolism (antibiotics other) in different subgroups of autistics and the management of viral/bacterial and fungal coexposures in time.

Respondent 0141

a. Gaps and underrepresented research areas.
Research on numbers of Adults with ASD diagnosis, adults with ASD misdiagnosed with other conditions (Not ASD), under diagnosis of ASD, and co-morbid diagnoses in adults and children. Research into the numerous ways ASD presents itself in all ages across the lifespan, and all places on the spectrum. Following this, research tools to train and educate doctors and mental health professionals to properly screen for and/or diagnose ASD across the spectrum and lifespan. Right now, efforts are underway to screen in young children, such as the "Learn the signs. Act Early" campaign. However, there are many individuals who have not or will not receive an ASD diagnosis in the first few years of life. More effort needs to be taken to recognize people with ASD at all ages.

b. New opportunities.
There is an invaluable resource that is largely being ignored: Autistic adults. Many Autistic adults who are able to communicate their thoughts are eager to help advance knowledge about autism. Many adults who were nonverbal or even non-communicative as children can now describe their childhood experiences. Autistic people need to be included as an integral part of the research process. Statistics regarding the thoughts, feelings, and experiences of a large population of individuals would be enormously beneficial to research. Autistic adults (and even children) whose communication methods are accessible to the general population can help steer research into the most important directions. Survey Autistic people specifically about what helped and hurt them most as children. Make the research methods and questions accessible to all - not just those who speak or type, and not only self-advocates who know what the IACC is. Get creative! Ask autistic people if you can't figure out how.

c. Research priorities.
Currently, early childhood screening and diagnosis seems to be at the forefront. The problem is that the number of professionals capable to making the diagnosis is far less than the demand. The numbers of qualified diagnosticians get fewer and fewer to near non-existent the older the ASD individual gets. The number one priority should be research into the most effective ways to recruit and train autism specialists to properly and accurately diagnose individuals across the spectrum at all ages of life. Before training, or course, we need to know what to train for. Therefore, the first bit of research should be identifying what autism looks like in boys, girls, men, women, toddlers, children, teens, young adults, older adults, and senior citizens. We need to know just how vast the spectrum is, and what the common characteristics are of those who are on it. Obviously, there are enormous differences. But what do all Autistic people have in common?

Respondent 0146

a. Gaps and underrepresented research areas.
Recommend focusing assessments for early diagnosis on qualities of behavior and early relational patterns. For example, imitation, shared gaze, alternating gaze, joint attention, spontaneous exploration or expression are all observable in typical development and could be standardized for assessment. Children with ASD have deficits in some or all of these areas. The skills here (which are representative of the many more one could include) are not dependent on speech production or symbolic play for assessment.

b. New opportunities.
More training for doctors and pediatricians who are usually the first professional a parent turns to for support/consultation.

c. Research priorities.
I believe early identification and assessment should be the number 1 priority.

Respondent 0148

a. Gaps and underrepresented research areas.
Research needs to rapidly focus on the most promising studies and parsimonious screening measures to rank both their sensitivity and specificity with randomized, double blind assessments of ASD and control groups. Since we know it is a spectrum disorder, it would also serve to possibly use an established screening tool like the CARS that has been reviewed as somewhat over inclusive diagnosing ASD resulting in false positives. If there are studies comparing the CARS diagnostic accuracy to the ADOS/ADI-R, an investigator could create a higher CARS cutoff score that better matches ASD diagnosis by the ADOS/ADI-R. In addition, such a study could further examine the subgroup of children that are below the new, higher CARS cutoff score but above the usual CARS cutoff score to determine if this latter subgroup (also treated identically with the ASD subgroup) may be distinctly different from the ASD subgroup across core symptoms, functional levels, and response to treatment.

b. New opportunities.
Early interventionists, pediatricians, NICU, and infant nursery specialists should be educated about first "Red Flags" (derived from empirical studies of early signs of ASD in infancy). They could then track the at risk babies for developmental trajectories on a functional assessment scale. As soon as a critical set of criteria are evident, a portion of these infants would commence time-limited treatment while other subgroup would receive no immediate treatment. This approach would potentially contribute (1) Better data to assess effectiveness of "educating front line" clinicians about early symptoms (2) Comparison subgroups would provide data on the prognostic value of "early signs" screening criteria (3) Comparison groups will better establish the impact of early intervention with at risk babies.

c. Research priorities.
1. Develop efficient screening instruments by comparing their diagnostic accuracy to the ADOS/ADI-R - SHORT TERM GOAL 2. Use screening tools with biological and neurological screening protocols to discern what behaviors and constitutional markers best cross validate each other. A long term study (or follow-up of groups from #1 above) to try to establish the most reliable early behaviors (or absence thereof), biological, and neurological indicators that predict a later ASD diagnosis.

Respondent 0151

a. Gaps and underrepresented research areas.
Better education of the public is required on this epidemic. Our daughter was diagnosed at almost 5 years of age and our son at 7. We did not have the knowledge to know their delays were associated with an ASD as our knowledge was limited to movies exhibiting extreme cases. Additionally the school system is unwilling to provide diagnosis (prior to age 8 per our discussion with the counselors) and pediatricians tend to place emphasis on other possibilities without even discussing ASD as a possible cause of your child's issues. It is heartbreaking to receive a diagnosis at 5 years / 7 years and then read all the published data that indicates the critical age of 2 years for a reasonable hope of recovery with traditional treatments.

b. New opportunities.
Fill the knowledge gap via significant TV and news advertisements and preschool / primary school provided pamphlets. Also provide the public with information to challenge current "facts" presented by respected pediatricians that vaccinations (and thimeresol preserved vaccinations such as flu shots) have no potential for causing ASD. The public should realize that although it is not proven one way or the other, it remains a subject of significant research due to the very large amount of circumstantial evidence provided by those that are impacted by ASD.

c. Research priorities.
I recommend providing a clear checklist / screening criteria readily available to the public (similar to what psychologists utilize when diagnosing your child). This would be a starting point to greatly improve early detection. Also provide instructions to caregivers of young children (preschool and primary) for how to detect possible ASD cases and provide them with the latitude to information parents without risk.

Respondent 0152

a. Gaps and underrepresented research areas.
One aspect of behavior that is being used descriptively with normally developing children, but not at all with ASD youngsters is temperament. Temperament is a term applied to an individual's behavioral tendencies and attentional competence with respect to him/herself, to others, and to things in the environment. The advantage of using temperament as an additional parameter in assessing babies is that, instead of just looking at social learning and developmental change, it cuts across these systems and examines both emotional and attentional processes, as well as attempts to modulate these. Mary Rothbart et al. have been developing and evaluating temperament assessment tools for infants, young children, and adolescents alike. The present knowledge of the effect of temperament on normative development suggests that these parameters could also be applied to the description of delayed and deviant development. Thus far, this has not been done.

b. New opportunities.
There are behaviors, or lack thereof, occurring in infancy that can distinguish autism, or at least undifferentiated instances of ASDs, from other types of developmental delay. One of these is imitation. Neonates have been observed to imitate adult head movements and tongue protrusion at as early as 72 hours after age. By two to three months, infants smile back at people smiling at them. After six months, babies will imitate things like "bye-bye" and "all-gone", giving kisses and hugs, playing patty-cake and shaking their heads to indicate "no". All of these behaviors are absent or strikingly diminished in autistic babies. There are others ways in which babies interact with others. One of these is "joint attention". In other words, if an adult is looking at something, baby will look too, or baby will point to something to engage someone else to look or to speak about it. Autistic babies do not do this.

c. Research priorities.
Because of the indisputable fact that temperament traits are present at birth, it should be possible to look at them, as well as what we already know of early infant imitation and socialization, to create a new, more comprehensive early assessment tool. This tool needs to be simple to administer, so that it could be introduced for widespread use in pediatricians' offices to identify constellations of behaviors that warrant further, more in-depth evaluation. To accomplish this, further research must be done to codify early temperamental traits in normal infants. In addition, studies of imitative and interpersonal behavioral development in suspected instances of deviant development need to be investigated in-depth. With more extensive information, it should be possible to assess all babies at their regularly scheduled well-baby check-ups and flag, early on, those who might be autistic or, more broadly, at risk for any of the ASDs.

Respondent 0153

a. Gaps and underrepresented research areas.
Ultrasounds have been shown to disrupt neurogenesis in mice and delay speech onset in Canadians.

b. New opportunities.
Prenatal care records and autism evaluations exists for many people born in the last thirty years. Comparing the types and frequencies of ultrasound events with the probability of autism is an attractive field of endeavor.

c. Research priorities.
Prioritize ultrasound correlation highly. It's a likely common agent, and its increased use and intensity mirror that of the rise of autism.

Respondent 0154

a. Gaps and underrepresented research areas.
Research the extreme rise in the number of vaccines given to children today and the overuse of antibiotics. Early, early intervention is the key to helping in the recovery process with ASD kids. Evaluations need to be ramped way up from 6 months to 18 months for vaccinated children and/or children treated excessively with antibiotics during the first 2 years of life. This is a preventable condition....why are the parents of ASD kids the only people to realize this? There are way, way too many very unnecessary vaccines being pushed on parents.

b. New opportunities.
Vaccines and overuse of antibiotics is causing autism....why doesn't someone research that?

c. Research priorities.
The highest priority should be reducing the number of vaccines back down to the 1960 schedule. Too many vaccines to early.....too weak immune system....overuse of antibiotics = AUTISM

Respondent 0157

a. Gaps and underrepresented research areas.
The literature for parents about Autism tends to focus more on what could be wrong than what is right. Some children have natural learning delays and it would be useful to have some additional information in this area as well. Without this some children are subject to multiple evaluations and a diagnostic label which may not be accurate because they may have a delay that falls within normal ranges.

Respondent 0168

a. Gaps and underrepresented research areas.
Early identification of ASDs needs to be put in context of identifying a range of developmental concerns so that children with any type of developmental concern are identified and offered early intervention.

b. New opportunities.
Early identification needs to be built in to a coordinated electronic health record system that prompts the care providers to screen, follow-up, and refer for evaluation and services as needed. Also, this system should enable parents, guardians, or the person affected at the appropriate age to control and access their information and share with other providers.

Respondent 0173

a. Gaps and underrepresented research areas.
I am both a teacher and a parent. Teachers can be on the fore-front of helping parents identify or recognize indicators that may need closer investigation by a qualified evaluator. What is teacher training doing to help teachers be better able to assist parents in spotting early 'red flags'?

c. Research priorities.
There has to be a bridge between theory-research-practice. Pediatricians often seem clueless, bring the research to the understanding of real, non-medical professionals, and parents. SO much of what is published can be overwhelming and confusing.

Respondent 0176

a. Gaps and underrepresented research areas.
1. Identification of early warning signs of Autism Spectrum Disorder. 2. Criteria for Autism Spectrum Disorder diagnosis AND how this criteria is applied by diagnostic professionals to children at different ages being observed for Autism Spectrum Disorder diagnosis. 3. Benefits of diagnosis including receipt of appropriate services in school which is especially necessary once a child is no longer served by the Early Intervention Program and has transitioned to the school setting where therapeutic services are made available. 4. Where to go for diagnosis. 5. How services are rendered through the Early Intervention Program and then in the school setting once a child is no longer eligible for Early Intervention. 6. Information advocating for a child diagnosed with Autism Spectrum Disorder and suggestions for collaborating with professionals and educators regarding a child's needs for services and safety provisions inside the home and in other settings.

b. New opportunities.
Identifying the list of biological and behavioral differences expressed by infants and children with ASD including sleep disorders; gastrointestinal difficulties; difficulty/differences in bonding with parents and others; absence of normal listening and attending including joint attention; absence in eye contact; absence of shared experiences/interest in others and what they are doing in a wide range of circumstances; sensory hypersensitivity to lights, sounds, smells; "runners" (children who run) who may be a danger to themselves and others and who do not stop when instructed; inability to bond with children; fear of new places, people, or transitions therein, etc. Another necessary area for advancing research and knowledge regarding ASD is the feelings experienced by parents of children who are suspected to be on the spectrum or who have been diagnosed and suggestions for dealing with grief, fear, and advocacy issue.

c. Research priorities.
Parents often have an intuitive sense that something may be wrong with their children as early as infancy based on biological symptoms such as sleeplessness and extended bouts of inconsolable colic long before behavioral differences appear in toddlers. First priority should be be given to identifying the myriad early warning signs that are characteristic of infants and children diagnosed with ASD so that parents can obtain a diagnosis and appropriate interventions as early as possible. Second priority should be given to helping parents understand feelings of fear and grief surrounding the possibility of an ASD diagnosis. Parents would be comforted to know that interventions can ameliorate many of the manifestations of ASD and that behavioral supports can be implemented to assist a child in experiencing success in social situations. Third priority should be to inform parents that they will be taking a position as an advocate for their child. Assist them in understanding advocacy.

Respondent 0181

a. Gaps and underrepresented research areas.
Thank you for the opportunity to comment on the proposed strategic plan for the Interagency Autism Coordinating Committee (IACC). Family Voices is a national network that advocates on behalf of children with special healthcare needs; our NJ Chapter is housed at the Statewide Parent Advocacy Network (SPAN), New Jersey's federally funded Parent Training and Information Center, Family-to-Family Health Information Center, Statewide Parent to Parent program, and chapter of the Federation of Families for Children's Mental Health. Introduction in NJ, we are especially concerned with the prevalence rates of autism. Although the Centers for Disease Control (CDC) estimates that autism affects 1 in 150 children, in our state it is the highest with 1 in 94 children (source NJSA 26:2-185). Further the prevalence rate of the autism diagnosis for boys is 1 in 60. Recently our Department of Health revised our birth defects registry to include autism using disorders listed by the...continue

b. New opportunities.
Diagnostic and Statistical Manual (DSM-IV). Under this proposed definition, autism would include the following diagnoses: Asperger's Syndrome, Autistic Disorder, Childhood Disintegrative Disorder, Pervasive Development Disorder Not Otherwise Specified, and Rett Syndrome. We were pleased to see this heterogeneity acknowledged in the strategic plan. We agree with the concept of environmental factors examined under prevention but would also include further research into the vaccine controversy. As a parent of a child on the spectrum, I was pleased to see the American Academy of Pediatrics' (AAP) recommendation of removal of thimerasol as a precautionary measure. As a parent of a child who is also medically fragile due to end stage renal disease, I must balance this with taking all medical precautions, including additional vaccinations such as annual flu and pneumonia shots. As other parents have chosen not to vaccinate, there is now a cohort which can be studied for ...continue

c. Research priorities.
comparative purposes without the ethical dilemma of putting children at risk. Finally we strongly support the lifespan approach and recognize that early intervention results in better outcomes. II. When Should I be Concerned? Regarding the section Aspirational Goal: Children With or at Risk for ASD will be Identified by 24 Months and Receive Appropriate Interventions, under "short term objectives"develop at least one efficient diagnostic instrument we would highly recommend the resource First Signs at http://www.firstsigns.org This link exits the Interagency Autism Coordinating Committee Web site. We would also strongly recommend the use of the tools developed by the AAP in their national medical home webinar 4/20/09 "Developmental Surveillance, Screening, and Diagnosis" at www.medicalhomeinfo.org/training/archivescall3.html as well as their information on identification and management at www.medicalhomeinfo.org/health/Autism%20downloads/ASD%20Webinar%20FINAL.ppt (7/22/09) rather than the development of a new diagnostic tool.

Respondent 0187

a. Gaps and underrepresented research areas.
In early development, children with problems with eye contact may be at more risk to become nonverbal. Research about the link between cognitive development of socialization norms through eye contact leading to verbalization (or lack of verbalization) needs to be studied further. Recognizing early, more subtle signs of visual disengagement could be key to early diagnosis and intervention for children who are most at risk to be nonverbal.

b. New opportunities.
Include more nonverbal subjects in research on ASD. To date, no research has been done on this group and is therefore something that is missing from the autism research 'road map.'

c. Research priorities.
Again, include more nonverbal subjects in research on ASD. No research has been done on this group. This is a critical area that is missing from the autism research 'road map.' Since this is the one of most severe of the ASDs with profound consequences, with no research so far, it is important that it be made a priority. Further, anecdotal research suggests that nonverbal ASD individuals who eventually learn to communicate offer important insight and understanding in related cases including stroke, comatose and higher functioning ASD individuals, so that further research is indicated because of possibly significant, broader applications resulting from findings in the unexplored area of nonverbal ASDs.

Respondent 0190

a. Gaps and underrepresented research areas.
An emphasis on research opportunities to determine effective identification measures in school systems to identify students with ASD merits consideration. --- It is hoped the IACC will also consider further research with respect to early identification and diagnosis of co-occurring disorders, particularly among those individuals on the "higher functioning" end of the spectrum. Efforts related to this area have emerged in Ohio, as the Ohio Department of Mental Retardation and Developmental Disabilities and the Ohio Department of Mental Health have joined efforts to address the need of individuals with a dual diagnosis of a developmental disability and mental illness, to promote and demonstrate systemic and clinical best practices.

b. New opportunities.
In developing screening and diagnostic instruments, it is hoped that the IACC considers study of the most effective methodology to integrate such tools into general medical and clinical practice. Through a project, funded by the Ohio Department of Health, and administered by the Central Ohio Chapter of the American Academy of Pediatrics, Ohio is exploring ways to build the knowledge, skills, and ongoing support needed to implement developmental surveillance and screening in a standardized way. One successful method has been the formation of Developmental Screening Learning Collaboratives, promoting a simple, yet consistent developmental screening protocol. Established with pediatric/family medicine practices in regions of the state, the Collaboratives include a 16 hr. longitudinal CME program, including incentives for participation. Stand alone educational opportunities, specific for residents, are also being evaluated.

Respondent 0194

a. Gaps and underrepresented research areas.
Greater awareness of autism spectrum disorders has allowed parents to identify early signs of autism in children sometimes as young as 8-10 months of age. However, the predictive relationship between early signs of autism and later diagnosis and developmental trajectory remains poorly understood. More research on the relationship between early symptoms of autism and developmental outcome is needed, both in high-risk and general population samples.

b. New opportunities.
The Baby Siblings Research Consortium represents a collaboration of 22 investigators and over 2000 well characterized siblings of children with autism. The collection of genetic and other biomaterials on this sample would provide an opportunity for exploring whether specific risk autism risk genes or other biomarkers can be used to identify children at risk even earlier than is currently possible.

c. Research priorities.
Although we agree that early detection should be the first priority for research on this question, continued research on screening for autism spectrum disorders throughout the life span should be encouraged.

Respondent 0195

a. Gaps and underrepresented research areas.
I have a nonverbal - considered to be low-functioning ten year old boy. I am concerned that not enough research or efforts are being made to advance the nonverbal population.

b. New opportunities.
We need to find ways to reach these children who will become adults and help them function to the best of their abilities. More research must be aimed at this portion of the population.

c. Research priorities.
Much of the research is aimed at the higher functioning individuals more needs to be done for the lower functioning individuals.

Respondent 0199

a. Gaps and underrepresented research areas.
We need research and support for our nonspeaking autistic children. They are still being grouped with severely disabled persons and it is a terrible match.

Respondent 0200

a. Gaps and underrepresented research areas.
There needs to be more research for children who are nonverbal. My Grandson is very smart but he cannot speak. We can tell he wants to. There needs to be a way to help him communicate so he can succeed.

Respondent 0202

a. Gaps and underrepresented research areas.
research on "movement disorders" are unrepresented and often times pushed under the ASD umbrella, parents are left with no intervention

Respondent 0203

a. Gaps and underrepresented research areas.
More research is needed for those who are nonverbal or minimally verbal

Respondent 0210

a. Gaps and underrepresented research areas.
Adult populations who have gone undetected or misdiagnosed likely need a different tool or protocol for assessing the extent to which an individual is (or has been) on the spectrum. Research on training for professionals utilizing existing assessment tools, particularly those tools observational in nature including a project aimed specifically at assessment tools for adults. Studies should include looking at the predictive validity of findings from these tools with outcomes occurring in the adult population.

b. New opportunities.
Long term implications for adults with an ASD particularly for those who have gone undiagnosed and/or have had an inappropriate identification.

c. Research priorities.
Make sure at least one of the empirical investigations is dedicated to understanding the implications for adults that have gone unidentified or who receive a new diagnosis after age 22.

Respondent 0211

a. Gaps and underrepresented research areas.
It seems that research for nonverbal children in helping assist with communication is sadly underrepresented.

b. New opportunities.
How to assist those who have NO verbal language and especially no verbal comprehension. This seems to be the group in severest need.

c. Research priorities.
Priority should be based on functioning.

Respondent 0213

a. Gaps and underrepresented research areas.
1) Nonverbal and low-communicating individuals with autism, (often referred to as slow-functioning), have been almost entirely excluded from federally funded research. 2) The nonverbal subgroup represents about 15-20% of the autism spectrum and yet there is no research focused specifically on them. 3) When you combine the nonverbal group with those who can speak but are unable to communicate (?low-communicating?), this adds up to approximately 50% of the autism spectrum population, yet they are not represented in current research nor is there any research specifically focused on them. 4) Nonverbal and low-communicating people with autism should be included in the Strategic Plan for Autism Spectrum Disorder Research. 5) There are few interventions that have been studied and documented to help these individuals and little research. We need research to develop successful interventions for this group.

b. New opportunities.
The population of individuals with ASD has been documented as increasing. A large percentage of these individuals will be classified as "low-functioning" or nonverbal. There is a need to study interventions that improve functioning and quality of life in these individuals.

c. Research priorities.
This group must be included in funded grants to improve functioning of individuals with ASD. The stance of the NIH in general is that research demographics should reflect the population of the United States. Here is a clear instance in which research funding should be adjusted to serve the existing population.

Respondent 0220

a. Gaps and underrepresented research areas.
Start including nonverbal and low-communicating people in research NOW!

Respondent 0222

a. Gaps and underrepresented research areas.
I think there needs to be more information provided in medical school for doctors going into family practice. In small rural towns, they are often the first ones a family turns to for help, and often they know little about autism treatments or services. Because of this families may miss valuable early intervention opportunities.

b. New opportunities.
Train doctors who know more about autism

Respondent 0226

b. New opportunities.
I believe it is vitally important that the needs of nonverbal and low-communicating people with autism be addressed through research efforts. This group has been under-served, if not ignored, for years.

c. Research priorities.
It is time to devote resources to develop successful communication interventions for low or non-communicating people with autism, through more research into genetic traits, cognitive abilities, and educational needs and strategies. At this time, this population has, woefully, been ignored. It's time to be concerned. It's time for change.

Respondent 0228

a. Gaps and underrepresented research areas.
I am very concerned that very little, if any, research is being done to help nonverbal and low-communicating people on the autism spectrum. This segment of the population needs our help to become contributing members of society. Without the proper tools to communicate, they will always be dependent, their lives will be severely impacted and the cost to society enormous. I find it terribly short-sited to overlook them in the research and I am very disheartened to find out that this is the case.

Respondent 0231

a. Gaps and underrepresented research areas.
Nonverbal and low-communicating individuals with autism, (often referred to as low-functioning), have been almost entirely excluded from federally funded research. This group represents about 15-20% of the autism spectrum. When combined with those who can speak but are unable to communicate (low-communicating), this adds up to approximately 50% of the autism spectrum population. In spite of lack of communication being their most severe deficit, there is currently no research to develop communication interventions. In spite of tremendous advances in autism research in the past decade, this group has not benefited from the progress that has been made and little has changed for them.

b. New opportunities.
Study nonverbal and low-communicating individuals to learn how they differ, how they can be helped, and what interventions can assist this under-served population. There are few, if any, interventions that work for these individuals and currently there is no research to develop them. We need research to develop successful interventions for this group.

c. Research priorities.
Include nonverbal and low-communicating individuals in your research.

Respondent 0232

a. Gaps and underrepresented research areas.
There needs to be more funding for researching nonverbal autistic treatment and interventions. Nonverbal individuals need to have a voice in society and many are capable of understanding us, yet we don't understand them. They should not be classified as low-functioning many have abilities yet are unable to show us them. Once you are labeled "low-functioning" it can be very frustrating to show so many nonbelievers what you can do.

Respondent 0234

a. Gaps and underrepresented research areas.
1) Nonverbal and low-communicating individuals with autism have been almost entirely excluded from federally funded research. 2) The nonverbal subgroup represents about 15-20% of the autism spectrum and yet there is no research focused specifically on them. 3) When you combine the nonverbal group with those who can speak but are unable to communicate this adds up to approximately 50% of the autism spectrum population, yet they are not represented in current research nor is there any research specifically focused on them. 4) Nonverbal people with autism should be included in the Strategic Plan for Autism Spectrum Disorder Research.

b. New opportunities.
5) There are few, if any, interventions that work for these individuals and currently there is no research to develop them. We need research to develop successful interventions for this group. 6) In spite of lack of communication being their most severe deficit, there is currently no research to develop communication interventions. We need this kind of research now.

c. Research priorities.
7) Almost nothing is known about nonverbal individuals, yet there is no research focused specifically on better understanding this group. 8) In spite of tremendous advances in autism research in the past decade, this group has not benefited from the progress that has been made and little has changed for them.

Respondent 0241

a. Gaps and underrepresented research areas.
Nonverbal and low-communicating individuals with autism have been almost entirely excluded from federally funded research. The nonverbal subgroup represents about 15-20% of the autism spectrum and yet there is no research focused specifically on them. I believe that when a child like daughter, who has ADD NOS nonverbal comes into the world, an opportunity to realize true human nature presents itself, and it comes in the way other people treat that child. How will you treat my child? How will us and others help her?

b. New opportunities.
When you combine the nonverbal group with those who can speak but are unable to communicate (low-communicating), this adds up to approximately 50% of the autism spectrum population, yet they are not represented in current research nor is there any research specifically focused on them. Nonverbal and low-communicating people with autism should be included in the Strategic Plan for Autism Spectrum Disorder Research. Discrimination by any other name is STILL DISCRIMINATION. Ignoring this group smacks of that most hideous of crimes against humanity especially those who turn to us so completely for our kindness, assistance and support.

c. Research priorities.
There are few, if any, interventions that work for these individuals and currently there is no research to develop them. We need research to develop successful interventions for this group. In spite of lack of communication being their most severe deficit, there is currently no research to develop communication interventions. We need this kind of research now. Almost nothing is known about nonverbal and low-communicating individuals, yet there is no research focused specifically on better understanding this group. In spite of tremendous advances in autism research in the past decade, this group has not benefited from the progress that has been made and little has changed for them. Correct this injustice...

Respondent 0244

a. Gaps and underrepresented research areas.
No additional comments...

b. New opportunities.
No additional comments...

c. Research priorities.
Specify or give examples of bioethical research considerations as some funders, organizations or people may not want to support "stem-cell" research or other categories that might be included under that heading. Place Bullet # 6 (Protocols for genetic testing in routine clinical practice in order to identify people at risk for ASD...) higher on the priority list because this information could help target populations for public awareness.

Respondent 0245

a. Gaps and underrepresented research areas.
Research on the communication needs of nonverbal Autistic Children. It has now been established that the fact that a child is nonverbal doesn't mean they have corresponding intellectual deficiencies. It is no wonder I had to fight for services for my now 20 year old autistic son. I won the due process decisions and difficulties with the regional center, but the first thing I had to prove and my son had to demonstrate was he is literate and understands what is going on around him.

b. New opportunities.
You would need to understand that just because a child on the spectrum "speaks" doesn't mean they are higher functioning than a child that does not speak. Why is it that some autistic children echo speech and others do not speak? What proof exists that allows your research professionals to assume there is no need to investigate this issue? In my son's case this assumption that just because he didn't speak he did not understand the social and academic classes he attended and this caused him great harm while attending public schools. He used to cry himself to sleep until we realized he could understand and began to build a bridge that allowed us to communicate with him. How shameful that other students with ASD like him are excluded from your "research": that means other students like my son probably continue to act out and cry themselves to sleep because everyone around them assumes they don't understand what is going on around them.

c. Research priorities.
Start including autistic children who are nonverbal in your research and understand the role sensory integration has on social skills and communication.

Respondent 0246

a. Gaps and underrepresented research areas.
Persons with autism who are low- or nonverbal. My son lost all language at 15-18 months, and regressed again after booster shot vaccines at age 5. His auditory processing and discrimination are in the 1%-ile....

b. New opportunities.
Need to screen for what is going on? Sensory? Auditory processing? Auditory discrimination? Visual processing? There are a myriad of reasons, which need to be sorted out, tested, and treated.

c. Research priorities.
Heavy metal toxicity mirrors the symptoms of autism (see Sally Bernard RN - testimony to Congress on this issue) All senses are affected, as well as all body systems: endocrine, neurological, GI, immune system, etc

Respondent 0247

a. Gaps and underrepresented research areas.
I would like to see more research for nonverbal and low-communicating children. My son is a bright engaging kid who doesn't talk. I know if I could just get him to communicate effectively he would prove himself just as bright as the other kids in his class.

b. New opportunities.
There's lots of technology assisted solutions coming up but it's not clear that any of them work.

c. Research priorities.
Just more research on nonverbal/low-communicating kids

Respondent 0248

a. Gaps and underrepresented research areas.
I am the parent of a child who is able to speak but has tremendous difficulty organizing his thoughts, therefore he is very limited verbally. I would like to see more research which looks at treatments and therapies for these groups.

b. New opportunities.
pharmaceutical development, medical and neuroscience applications, stem sell research

Respondent 0249

a. Gaps and underrepresented research areas.
Why do most pediatricians encourage parents with concerns to wait until the child is three for autism testing?

b. New opportunities.
50% of autistic individuals are nonverbal or low-verbal. There are currently no good interventions for this problem. Research is needed desperately in the area of best interventions to teach language and speech to low-verbal or nonverbal autistic individuals.

c. Research priorities.
Is there a genetic similarity between non/low-verbal autistic individuals? In this population, and especially in people with ASD who were nonverbal until a more advanced age and then became verbal, what was the intervention/therapy that finally worked?

Respondent 0251

a. Gaps and underrepresented research areas.
Nonverbal individuals with ASD are underrepresented in research studies, especially through schools etc. as many of these kids are not in school.

c. Research priorities.
Include all individuals with a diagnosis in all appropriate research

Respondent 0255

a. Gaps and underrepresented research areas.
Interventions for nonverbal people with autism

c. Research priorities.
Research focused specifically on better understanding nonverbal people with autism

Respondent 0256

a. Gaps and underrepresented research areas.
1) Nonverbal and low-communicating individuals with autism, (often referred to as "low-functioning"), have been almost entirely excluded from federally funded research. 2) The nonverbal subgroup represents about 15-20% of the autism spectrum and yet there is no research focused specifically on them. 3) When you combine the nonverbal group with those who can speak but are unable to communicate (low-communicating), this adds up to approximately 50% of the autism spectrum population, yet they are not represented in current research nor is there any research specifically focused on them. 4) Nonverbal and low-communicating people with autism should be included in the Strategic Plan for Autism Spectrum Disorder Research. 5) There are few, if any, interventions that work for these individuals and currently there is no research to develop them. We need research to develop successful interventions for this group.

b. New opportunities.
6) In spite of lack of communication being their most severe deficit, there is currently no research to develop communication interventions. We need this kind of research now. 7) Almost nothing is known about nonverbal and low-communicating individuals, yet there is no research focused specifically on better understanding this group.

c. Research priorities.
In spite of tremendous advances in autism research in the past decade, this group has not benefited from the progress that has been made and little has changed for them.

Respondent 0257

a. Gaps and underrepresented research areas.
There are no biomedical markers, so, Parents, pediatricians, teachers: Better to err on the side of false positive without becoming too anxious. Instinct and awareness are valuable; also listen (family, friends), read (general and relevant media), and observe (other familiar and stranger children).

b. New opportunities.
There is a heightened awareness of early signs of autism among the above and people generally. This, hopefully, encourages follow-up of concerns and questions to allow more and earlier intervention when appropriate and necessary.

c. Research priorities.
Of course, more vigilant with high-risk. I am not a clinician. ? Increased lab work to pick up irregularities that may precede anecdotal information -- also provide insight into development. (There are scientists that can make referrals here, e.g. DRS. Jill James, P Levitt, M. Megson, etc.) Jill James: "examining inherited metabolic aberrations that may secondarily affect neurological and immunological function during pre and post development; looking at plasma levels of metabolites that are predictive of impaired methylation capacity and oxidative stress. The lab measures genetic polymorphisms that could contribute to increased risk of oxidative stress and depressed glutathione-mediated antioxidant defense..."

Respondent 0259

a. Gaps and underrepresented research areas.
My daughter has both Down Syndrome and Autism. I was told over and over that she could not have both (I've even been told "It's illegal to diagnose a child with both DS and ASD"). We need to understand how these two interact better so that people in power don't continue to put off parents and just assume that kids with DS and ASD are really low-functioning and can't be helped. My daughter is doing better, they can be helped!

c. Research priorities.
We also need to place research money into understanding how to help nonverbal and low-verbal individuals how to speak. We also need to help those in power understand that communication devices need to be used as early as possible. They should not be waiting until children are in upper elementary to recommend the use of communication devices, but we need the research to prove this.

Respondent 0262

a. Gaps and underrepresented research areas.
Although more generally covered in "behavioral" markers, I think it is important to call out the need for better diagnostic criteria and tools for nonverbal and non-communicating children. Many current behavioral tests and panels assume a level of verbal communication that is simply not present in children who are unable to speak or respond to speech. I'm sure I am not the only parent who was frustrated to find, again and again, that entire testing sequences were completely non-applicable to my child because they assumed a baseline level of verbal communication that did not exist.

b. New opportunities.
Specifically, there is a desperate need for new methods to quantify and phenotype ASD in children who are nonverbal and non-communicating. Right now, these kids all end up lumped into a low-functioning category, but it is likely (and indeed almost certain) that there are different expressions of ASD in these children.

Respondent 0263

a. Gaps and underrepresented research areas.
Nonverbal and low-communicating individuals with autism, (often referred to as"low-functioning"), have been almost entirely excluded from federally funded research. 2) The nonverbal subgroup represents about 15-20% of the autism spectrum and yet there is no research focused specifically on them. 3) When you combine the nonverbal group with those who can speak but are unable to communicate (low-communicating), this adds up to approximately 50% of the autism spectrum population, yet they are not represented in current research nor is there any research specifically focused on them. 4) Nonverbal and low-communicating people with autism should be included in the Strategic Plan for Autism Spectrum Disorder Research. 5) There are few, if any, interventions that work for these individuals and currently there is no research to develop them. We need research to develop successful interventions for this group. 6) In spite of lack of communication being their most severe deficit.

c. Research priorities.
I would like more treatments- both medical and educational/training/behavioral to be researched with a view to making them available to families.

Respondent 0268

a. Gaps and underrepresented research areas.
Research involving the anomalies I have experienced while working with nonverbal individuals with autism with severe sensory and movement impairments. There unique perceptual reality has much to teach us about consciousness. Struggling with outdated beliefs have left many with a diagnosis of severe autism at odds with themselves. Neurologically typical people have a shared reality based on similar perceptions. Individuals with autism with severely disrupted sensory channels do not share that common experience. Their altered viewpoint has so much to teach those willing to step outside the box and listen. We need to stop comparing them to ourselves, reach out and learn from them. My phone number is [redacted personally identifying information]

b. New opportunities.
An ability to receive information through non-sensory channels needs to be acknowledged and addressed. Telepathy, joining consciousness with another, an uncanny ability to pick up on imperceptible subtle cues, and or sub-vocalizations need to be addressed. I can quantitatively prove they have the capability of picking up information, not readily available to typical people. Research on this fascinating subtype is long overdue. I have much information to share and I am willing to serve in any capacity I can.

c. Research priorities.
Start with simple image sending since it can be quantitatively proved. The studies would be simple to set up and would generate interest for funding for more complex issues, such as the synergistic relationship apparent in facilitated communication or those dependent on having a partner sit in close proximity and be privy to the information. Obviously, I have opinions on where this might lead, but we need to start at the beginning.

Respondent 0269

a. Gaps and underrepresented research areas.
There needs to be money for research into communication difficulties for the nonverbal/low verbal population with ASD.

b. New opportunities.
Fund research into why 15-20% of these children are not able to speak. There is no current funding for research of this type for this segment of the population.

c. Research priorities.
fund research into why 20-50% of these children are either nonverbal or verbal but unable to actually communicate

Respondent 0270

a. Gaps and underrepresented research areas.
Please consider allocating funds for research for people with severe autism who are nonverbal. This subset is the most vulnerable group and in addition requires the most care. Please be equitable in your quest to find a cure for this dreaded affliction.

Respondent 0276

b. New opportunities.
You need to be focusing more research on individuals with autism on the lower end of the spectrum...those who are relatively or completely nonverbal. They are underrepresented in research. I am the parent of a young adult who is moderately affected by autism.

c. Research priorities.
My comments above would apply here, as well.

Respondent 0281

a. Gaps and underrepresented research areas.
Early intervention is very important. Children are left nonverbal far too long. If a child is not saying words by 18 months....something should be done....technology should be introduced and some sort of AAC should be implemented to get the communication process rolling.

b. New opportunities.
A real effort at implementing AAC/technology should be addressed. The use of technology as a way to assist the individual in becoming verbal should be formally addressed. Syracuse Facilitated Communication Institute is beginning to formally look at this...however, younger children would benefit from the immediate introduction of technology to activate the communication process and jump start speech.

c. Research priorities.
1) What benefits can be derived from the early introduction of technology as a way to jumpstart communication. 2) How does technology help activate speech. 3) How does access to technology or AAC devices support full inclusion?

Respondent 0294

a. Gaps and underrepresented research areas.
I am concerned because no money is being committed to research into how to better understand nonverbal people with autism.

b. New opportunities.
We need to understand what is going on in the minds of the nonverbal people with autism.

c. Research priorities.
I am concerned NOW as to why my son still does not communicate at the age of 51. I haven't "given up" but the research community seems to have. I started being concerned 50 years ago; still waiting.

Respondent 0297

a. Gaps and underrepresented research areas.
Until now there has not been a unified effort to advocate for those who are nonverbal or low-communicating. So now is a great time to begin our efforts to advocate for this group. Sadly, in spite of the huge gains that have been made in the past decade, our kids have not been benefited and there are still almost no interventions that work for our kids and no research to better understand the nonverbal and low-communicating population, their cognitive abilities, genetic characteristics, educational needs or to develop successful interventions. Perhaps most importantly this population needs communication interventions and at present there is no research being done in this area.

b. New opportunities.
Until now there has not been a unified effort to advocate for those who are nonverbal or low-communicating. So now is a great time to begin our efforts to advocate for this group. Sadly, in spite of the huge gains that have been made in the past decade, our kids have not been benefited and there are still almost no interventions that work for our kids and no research to better understand the nonverbal and low-communicating population, their cognitive abilities, genetic characteristics, educational needs or to develop successful interventions. Perhaps most importantly this population needs communication interventions and at present there is no research being done in this area.

c. Research priorities.
Until now there has not been a unified effort to advocate for those who are nonverbal or low-communicating. So now is a great time to begin our efforts to advocate for this group. Sadly, in spite of the huge gains that have been made in the past decade, our kids have not been benefited and there are still almost no interventions that work for our kids and no research to better understand the nonverbal and low-communicating population, their cognitive abilities, genetic characteristics, educational needs or to develop successful interventions. Perhaps most importantly this population needs communication interventions and at present there is no research being done in this area.

Respondent 0300

a. Gaps and underrepresented research areas.
- Teaching Literacy Skills to nonverbal and low-communicating individuals with autism. - Using Assistive Technology to teach literacy (reading, writing/typing, listening and speaking - text to speech options). - Communication systems and strategies for the nonverbal and low-communicating population that are literacy-based rather than just functionally based.

b. New opportunities.
For many nonverbal and low-communicating individuals with autism, motor disturbances often affect their ability to acquire verbal speech. For teachers, this becomes problematic as feedback is often needed to confirm that a student is learning and to fine-tune instruction. If an individual with autism is unable to communicate, how do teachers know what to teach? Extensive Research is needed to link literacy acquisition to those individuals with autism who are unable to communicate what they know. Research is needed to dispel the MYTH that nonverbal and low-communicating individuals with autism also have low cognitive skills. Reliable communication strategies are needed for nonverbal and low-communicating individuals with autism to access literacy opportunities.

c. Research priorities.
Use the paradigm of "presuming competence" as the least dangerous assumption from an educational standpoint, and commence a Literacy Project where individuals with autism who are nonverbal and low-communicating have the opportunity to learn powerful literacy. Use Assistive Technology for literacy acquisition rather than just for functional communication. Teach reading, writing/typing, listening and speaking using text-to-speech options and challenge the nonverbal and low-communicating population with an academic curriculum that includes powerful literacy.

Respondent 0302

a. Gaps and underrepresented research areas.
EVERYTHING FOR THE AUTISM RESEARCH AND IT'S RELEVANT TOPICS ARE UNDERREPRESENTED!! EVERY NEEDS TO BE MADE MORE AWARE OF WHAT THESE CHILDREN/PARENTS OF ARE STRUGGLING WITH! THE IGNORANCE IN THIS WORLD FROM PERSONS ON THE OUTSIDE INCLUDING SOME OF THE TEACHERS TEACHING IN THIS FIELD. THE IGNORANCE OF THE GOVERNEMT COVERING UP THE THIMEROSAL IN THE IMMUNIZATIONS WITH MANY OF US CONTRIBUTE TO ONE OF THE CAUSES NEEDS TO ADDRESSED!!!!

b. New opportunities.
EVERYTHING FOR THE AUTISM RESEARCH AND IT'S RELEVANT TOPICS ARE UNDERREPRESENTED!! EVERY NEEDS TO BE MADE MORE AWARE OF WHAT THESE CHILDREN/PARENTS OF ARE STRUGGLING WITH! THE IGNORANCE IN THIS WORLD FROM PERSONS ON THE OUTSIDE INCLUDING SOME OF THE TEACHERS TEACHING IN THIS FIELD. THE IGNORANCE OF THE GOVERNMENT COVERING UP THE THIMEROSAL IN THE IMMUNIZATIONS WITH MANY OF US CONTRIBUTE TO ONE OF THE CAUSES NEEDS TO ADDRESSED!!!!

c. Research priorities.
BCBA'S WILL BE NEEDED IS ALL SCHOOLS. EVERYTHING FOR THE AUTISM RESEARCH AND IT'S RELEVANT TOPICS ARE UNDERREPRESENTED!! EVERY NEEDS TO BE MADE MORE AWARE OF WHAT THESE CHILDREN/PARENTS OF ARE STRUGGLING WITH! THE IGNORANCE IN THIS WORLD FROM PERSONS ON THE OUTSIDE INCLUDING SOME OF THE TEACHERS TEACHING IN THIS FEILD. THE IGNORANCE OF THE GOVERNMENT COVERING UP THE THIMEROSAL IN THE IMMUNIZATIONS WITH MANY OF US CONTRIBUTE TO ONE OF THE CAUSES NEEDS TO ADDRESSED!!!!BE NEEDED IN ALL SCHOOLS.

Respondent 0305

a. Gaps and underrepresented research areas.
I think the role of ultrasounds during pregnancy should be seriously investigated. The correlation in the prevalence of autism and the use of ultrasounds appears to be significant.

Respondent 0306

a. Gaps and underrepresented research areas.
My son regressed after a virus at age 3. He lost the ability to speak, dress himself, draw, and play independently. The neurologist called it Autistic Regression Syndrome and said it's happening a lot after kids have viruses. He had a horrible yeast infection that we fought for months. I'd really like you to address regression due to poor immune function and gut dysbiosis.

b. New opportunities.
Every single parent of an ASD kid who has the regressive form of autism where they were documented as developing normally has them fall in one of a couple of categories - gut issues, immune issues, vaccine reaction (probably related to gut or immune issues, frankly), toxic environment. Please look into these.

c. Research priorities.
I think you need to look hard at autoimmune dysfunction first.

Respondent 0307

a. Gaps and underrepresented research areas.
How about a truly UNBIASED study on the safety of vaccines in children. How about a study on the rates of autism in unvaccinated children. Are you too afraid of the TRUTH?

b. New opportunities.
Again, TRULY scientific studies on vaccine rates and autism.

c. Research priorities.
How about putting some REAL money into researching the safety of vaccines and whether or not there is a relation to autism. Oh, yeah, and make sure the research isn't being funded by a drug company or vaccine maker, and the researcher isn't the brother of the guy who worked on the vaccine.

Respondent 0309

a. Gaps and underrepresented research areas.
How to get physicians to recognize the signs and symptoms of Autism earlier. Stop them from saying, "Let's give him some time." THESE KIDS CAN'T WASTE TIME! It's time to take care of their needs when they are small so they have a chance at a more independent future. It's too late for my son, and others like him, and the taxpayer will pay for that lack of care in the long run! You have to start getting treatment to these kids!

b. New opportunities.
Getting treatment to the children EARLY to increase independence!

c. Research priorities.
HURRY UP! We are losing too much time while you are adjourning early, and doing another study, and convening another panel! This has been a waste of time and money. You could have put parents in a room and they could have written this report better and MUCH FASTER, because WE ARE AGAINST THE CLOCK! Please help us or step down and let someone else!

Respondent 0310

a. Gaps and underrepresented research areas.
Parents and staff should be concerned at birth - environmental factors must be assessed - do they contribute to autism - is it wise to inject neonates with vaccines or to put chemicals in their eyes

b. New opportunities.
study environmental factors - there is no such thing as a genetic epidemic - get over your genetic bias - toxins can cause genetic damage - look at the toxins

c. Research priorities.
Study environmental factors, including vaccines - do a vaccinated, unvaccinated study.

Respondent 0312

a. Gaps and underrepresented research areas.
Dr. Dawson is an excellent choice but rather than Landa, IACC needs a medical researcher who can recognize and understand the co-morbid biological manifestations of regressive autism. Wiseman is an expert on learning behavioral signs but not important medical issues parents often deal with without any assistance: REGRESSION, constant fevers, sudden immune dysfunction, sudden loss of speech. We need a parent who has experienced this AND a parent affiliated with a large autism organization- like Wendy Fournier, NAA president and ASD parent

b. New opportunities.
When my child becomes ill and loses skills. Start being concerned and start researching this issue. IACC has so much redundancy. How many "learn the signs" people are necessary here? NEW opportunities for research are : regression, especially speech and skill loss. No where is there an expert in this category. Where is physician / parent, Dr. Bryan Jepson- author of many published articles and a book on recognizing and treating autism.

c. Research priorities.
CLINICIANS need to be included here- not only a "learn the signs campaign." Autism is a disease for so many children, not merely a brain disorder. "Should I be concerned if my child has an extremely adverse vaccine reaction?" For many of us that was the first sign of concern- no where in this category is that addressed. Where are all the parent/ advocates from large autism organizations like: TACA, NAA, SafeMinds, Generation Rescue? These groups organize and hold large conferences, mentor parents, provide assistance to families- why aren't they included?

Respondent 0315

c. Research priorities.
Please put the vaccinated/unvaccinated study back in the docket.

Respondent 0318

a. Gaps and underrepresented research areas.
Research should be focused on what type of interventions could target early symptoms, which are classically brushed off as being able to be out grown. Pediatricians may fear giving a hasty diagnosis that might cause undo stress to the parent if the child does indeed out grow these delays. However, what harm would be caused by directing parents on how to address some early noticed developmental variations instead of bushing them off or giving a diagnosis at all. Methods included in the RDI protocol address some early developmental foundations that could be missing. Research into RDI and its implications not only for children with ASD but also other development delays is advised.

b. New opportunities.
Diagnosing ASD as early as possible is ideal. However, the type of intervention recommended once a diagnosis is made that is of concern. Your aspirational goal in this section includes the desire for children to receive appropriate interventions. My definition of appropriate would be an intervention which has as its goal quality of life, such as RDI. Long term studies have shown dreadful results in number of persons with ASD who are gainfully employed or independently living. To me this means the current interventions aren't working. The field of cardiology was mentioned in the "prevention" theme. What was stated in the analogy was that due to advances in the field we don't have to wait until someone has a heart attack to provide life saving treatments. Likewise, we don't have to wait until someone has no quality of life to say our current methods aren't cutting it. Funding research to establish the efficacy of RDI as an appropriate intervention would

c. Research priorities.
Prioritize bullet point 3 under long term objectives. This objective calls for assessing response to intervention for people with ASD across a life span. Included in this objective should be RDI as one such intervention. RDI operates under the premise that the brain is placid, and thus can change. Therefore, the RDI model seeks to re-do missed developmental foundations and reinstate the typical developmental track for persons with ASD who have, due to neurological impairments, deviated from this track. It stands to reason that if typical development is reinstated and the brain is functioning as it should, then quality of life would improve and the need for long term treatment would be obsolete.

Respondent 0321

a. Gaps and underrepresented research areas.
I want someone to begin research designed to identify "pre-existing conditions" in children...PRIOR to giving them 48 doses of 14 vaccines. Indeed, how does one know if one is "sensitive" to thimerosal...or...any of the other myriad of suspect adjuvants routinely imbedded within childhood vaccines?

b. New opportunities.
I want Dr. Insel to either "resign" or "retire" from his "appointed position at IACC." From his recent comments at Sen. Harkin'a "hearing"...it is painfully obvious that Dr. Insel has a "closed mind" when the issue of funding research to seek possible link between "vaccines and autism"...indeed...."vaccines and a whole host of autoimmune disorders that were far less common in all previous...less vaccinated generations." Especially egregious is his absolute refusal to fund a "vaccinated vs. unvaccinated" INDEPENDENT, SCIENTIFIC study to determine...once and for all....if BOTH populations have suffered the same inexplicable, dramatic increase that now the CDC reports affects 1 in every 6 American child.

c. Research priorities.
#1-Vaccinated vs. unvaccinated study....MUST BE INDEPENDENT FROM ANY PUBLIC HEALTH AGENCY..RESPONSIBLE FOR RECOMMENDING AND APPROVING VACCINES. #2-Urgent research of existing children who "REGRESSED" and were diagnosed autistic to determine WHY they regressed...WHAT caused them to regress. #3-Urgent SCIENTIFIC RESEARCH of giving multiple vaccines to children during a single visit. #4-Urgent SCIENTIFIC REVIEW to determine WHY newborn infants are given the HEP B vaccine within hours of birth??????

Respondent 0322

a. Gaps and underrepresented research areas.
REINSTATEMENT OF THE PREVIOUSLY APPROVED VACCINATED/UNVACCINATED STUDY AT A COST OF $6MILLION. OBJECTIVES RELATING TO THE RESEARCH AND EVALUATION IN INFANTS OF EARLY CO-MORBID BIOLOGIC SYMPTOMS, SUCH AS GASTROINTESTINAL, ALLERGIC, DERMATOLOGIC, CHEMICAL/HEVY METAL EXPOSURE, AND MITOCHONDRIAL DYSFUNCTION AS PREDICTORS OF AUTISM. OBJECTIVES RELATING TO THE RESEARCH AND EVALUATION IN INFANTS AND CHILDREN OF MEDICAL TREATMENTS FOR SUCH CO-MORBID CONDITIONS LISTED ABOVE, AND THE EFFECTS OF SUCH TREATMENTS ON AUTISM SYMPTOMS.

b. New opportunities.
REINSTATEMENT OF THE PREVIOUSLY APPROVED VACCINATED/UNVACCINATED STUDY AT A COST OF $6MILLION. OBJECTIVES RELATING TO THE RESEARCH AND EVALUATION IN INFANTS OF EARLY CO-MORBID BIOLOGIC SYMPTOMS, SUCH AS GASTROINTESTINAL, ALLERGIC, DERMATOLOGIC, CHEMICAL/HEVY METAL EXPOSURE, AND MITOCHONDRIAL DYSFUNCTION AS PREDICTORS OF AUTISM. OBJECTIVES RELATING TO THE RESEARCH AND EVALUATION IN INFANTS AND CHILDREN OF MEDICAL TREATMENTS FOR SUCH CO-MORBID CONDITIONS LISTED ABOVE, AND THE EFFECTS OF SUCH TREATMENTS ON AUTISM SYMPTOMS.

c. Research priorities.
REINSTATEMENT OF THE PREVIOUSLY APPROVED VACCINATED/UNVACCINATED STUDY AT A COST OF $6MILLION. OBJECTIVES RELATING TO THE RESEARCH AND EVALUATION IN INFANTS OF EARLY CO-MORBID BIOLOGIC SYMPTOMS, SUCH AS GASTROINTESTINAL, ALLERGIC, DERMATOLOGIC, CHEMICAL/HEVY METAL EXPOSURE, AND MITOCHONDRIAL DYSFUNCTION AS PREDICTORS OF AUTISM. OBJECTIVES RELATING TO THE RESEARCH AND EVALUATION IN INFANTS AND CHILDREN OF MEDICAL TREATMENTS FOR SUCH CO-MORBID CONDITIONS LISTED ABOVE, AND THE EFFECTS OF SUCH TREATMENTS ON AUTISM SYMPTOMS.

Respondent 0323

a. Gaps and underrepresented research areas.
Many children are not diagnosed until they enter school. This late diagnosis results in lost opportunity for a child to receive early intervention. Many states stop providing support beyond the age of three. These children miss that window. Research needs to assess why these children miss that early intervention window and how to reach these children sooner

b. New opportunities.
The greatest need is in getting Pediatricians trained in how to assess children for red flags of autism in the visits between 18 months and three years. Many parents share stories that when they expressed developmental concerns to their pediatrician they were told to 'just wait and see" because children develop differently and don't always reach every milestone on time. This wait and see approach can be devastating to the progress that can be made when a child receives an early diagnosis

Respondent 0324

a. Gaps and underrepresented research areas.
Although I think that developing a more efficient diagnostic instrument that is valid would be great, I am skeptical that it is possible given the heterogeneity of the population and the need for differentiating ASD from other learning, developmental and psychiatric diagnoses. Comprehensive assessment is needed for accuracy. That being said, better tools are needed for diagnosis of Asperger's and PDD-NOS. Tools should align with DSM criteria. Also, research is needed on feasibility and utility of both screening and diagnostic tools in community settings.

c. Research priorities.
I agree with the focus on increased accuracy in screening and diagnosis.

Respondent 0325

a. Gaps and underrepresented research areas.
We need research in developing treatment strategies that arise from the latest research in brain development. What is the brain research telling us about how communication and socialization develop from birth onward? That is where the efforts need to go - developing strategies designed to impact brain development. This is what typically happens between a parent and child in the natural way of engaging and playing together. We need to learn more about how to repair that process with children with ASD, rather than teaching them skills that miss this crucial foundational development. It is this foundation that makes the real difference in an ASD person's ability to live life rather than execute life skills. RDI provides exactly this.

b. New opportunities.
We need to get off the treadmill of viewing autism as a skill-based disorder and focusing our treatment on skill development. We need to look at the core deficits of the disorder that arise from how the brain does or does not work, which is becoming increasingly clear in all the latest research. We need to focus the definition of autism from this brain perspective. We need to provide parents with a broad array of options (from skill development programs to developmentally based programs like RDI) and cover them through educational and health related funding sources as ASD is a medical condition. We need to keep parents' options open rather then limiting coverage to the single skills based approach of ABA.

c. Research priorities.
RDI is a promising treatment that is making a significant difference in the lives of ASD children and their families. We need more research in early brain development, in how to use that information to develop more appropriate interventions, and in how to assess outcomes of these forms of developmental treatment that do not rely on skill execution in limited and limiting environmental situations.

Respondent 0328

a. Gaps and underrepresented research areas.
Studies of vaccines as a causal agent in autism. Studies of vaccinated versus unvaccinated populations. Gastrointestinal scoping of ASD children, in lieu of O\'Leary lab and others\' biopsy findings of vaccine-strain measles in lesions lining the GI mucosa. Titers tests of children with immune dysfunction.

b. New opportunities.
Studies of vaccines as a causal agent in autism. Studies of vaccinated versus unvaccinated populations. Gastrointestinal scoping of ASD children, in lieu of O\'Leary lab and others\' biopsy findings of vaccine-strain measles in lesions lining the GI mucosa. Titers tests of children with immune dysfunction.

c. Research priorities.
Studies of vaccines as a causal agent in autism. Studies of vaccinated versus unvaccinated populations. Gastrointestinal scoping of ASD children, in lieu of O\'Leary lab and others\' biopsy findings of vaccine-strain measles in lesions lining the GI mucosa. Titers tests of children with immune dysfunction.

Respondent 0329

a. Gaps and underrepresented research areas.
vaccinated vs. unvaccinated study, mitochondrial disorders and autism

b. New opportunities.
vaccinated vs. unvaccinated study

c. Research priorities.
vaccinated vs. unvaccinated study

Respondent 0330

a. Gaps and underrepresented research areas.
Research into pre-diagnosis intervention, intervention that helps parents who are concerned address those concerns independent of diagnosis.

Respondent 0333

a. Gaps and underrepresented research areas.
NonVerbal people should be included in research and statistics! We (families) need help the most!

b. New opportunities.
All of us should be concerned RIGHT NOW! But you know when people will finally care? When they finally take notice??? When these numerous children reach the age for Social Security Disability--when all these children qualify to draw money on a system they've never paid into. When the enrollment numbers for our military are spiraling downward. When the lack of licensed motor vehicle drivers begins to impact our public transportation system. When group homes and home healthcare services have waiting lists far greater than they can service. Perhaps THEN, people will notice there's a problem.

c. Research priorities.
The time for doing something is NOW, before the above mentioned scenarios beginning to come to fruition. The numbers of children being diagnosed is staggering! Our children deserve better. If it was YOUR child, would you care then? Would you be concerned RIGHT NOW? Well, each one of the faces of autism has a parent and family behind it that is concerned every moment of the day. It rules our lives, our schedules, our vacations (or lack thereof), our mealtimes, our bedtimes, and every moment in between.

Respondent 0334

a. Gaps and underrepresented research areas.
Please start including nonverbal and low-communicating people in research now.

b. New opportunities.
I am a mother to 6 year old identical twins with autism. Kevin and Zackary are nonverbal.

Respondent 0336

a. Gaps and underrepresented research areas.
We need a vaccinated vs. unvaccinated study to compare autism rates. There are significant populations of unvaccinated kids to study. Thomas Insel testified recently at the Appropriations Subcommittee meeting saying that it would be unethical to not vaccinate a group of children for such a study. That's clearly not an issue since many parents do not vaccinate and their children could be used. If Insel truly believes that vaccines aren't the cause of autism, he should welcome such a study. It would be the proof to settle the controversy. One has to wonder why he's so opposed to doing this research.

b. New opportunities.
For Thomas Insel to testify both in 2007 and 2009 that he doesn't know for sure if more kids actually have autism is an outrage. A once rare disorder now overwhelms a generation of children and the IACC won't even admit there's a problem. This is the most basic information necessary for this country to address autism. How effective can the IACC be if they don\'t even know this much?

c. Research priorities.
I think removing Thomas Insel as chairman should be the first step toward honestly addressing the cause of autism. He refuses to investigate the claims of thousands of parents that their normally developing children were damaged by vaccines and a recent news story detailing his brother Richard's links to the vaccine industry make it clear he is not unbiased.

Respondent 0337

a. Gaps and underrepresented research areas.
- Chart the developmental process of ASD in detail - How much more effective are treatments in the long run as a function of when parents start therapy programs

Respondent 0340

a. Gaps and underrepresented research areas.
One topic not explicitly mentioned is researching common underlying medical conditions, such as gastro-intestinal issues. These issues are widespread enough (just ask parents of kids with an autism diagnosis) that they should be investigated in depth in their own right.

b. New opportunities.
Identifying individuals with autism is important, but $100 million for early detection is excessive compared to the resources allocated for finding a cause and a cure.

c. Research priorities.
I suggest less funding for genetic research - genetic research to date has become a never-ending, resource-consuming cycle of (1) The leads in the previous study didn't pan out, but (2) we found some new, promising leads, and (3) we need more money to investigate them.

Respondent 0345

a. Gaps and underrepresented research areas.
Reinstate the vaccinated/unvaccinated study that Thomas Insel took out and all autism related research recommended by NVAC be added.

b. New opportunities.
Thomas Insel needs to resign or else be disqualified/fired. It has become quite evident that he has a huge conflict of interest in this position as his brother developed the Hib vaccine and therefore is involved in potential issues related to vaccine injuries and autism (diabetes as well - http://ukpmc.ac.uk/articlerender.cgi?artid=425506) He has not been honest about these issues

c. Research priorities.
vaccinated/unvaccinated study (retrospective) - fund all autism related research recommended by NVAC

Respondent 0347

a. Gaps and underrepresented research areas.
I am the mother of a nonverbal severely cognitively impaired 24 year old man. No one took my concerns seriously when I noticed something was wrong at 14 months old. Please add the nonverbal autistic community to your research. Show us that you care now. The nonverbal community is difficult to research and test, but they are the ones who could make the biggest turn around if you can find out why some autistic individuals talk and others do not. It is very difficult to want to include someone who doesn't give much feedback back to you in a study, but we need you the most.

c. Research priorities.
Please do not forget the nonverbal community. It is time to give them priority.

Respondent 0349

a. Gaps and underrepresented research areas.
Vaccine research should be number 1. We need an independent vaccinated children vs. unvaccinated children study done now.

Respondent 0353

c. Research priorities.
Children who are at risk based on factors related to family history of immune and/or gastrointestinal disorders can be identified before birth. When these children are identified and parents are educated regarding environmental triggers that can lead to autism, most cases can be either prevented, or significantly altered in terms of the severity. Including research into the environmental factors that trigger susceptible children, including environmental, food, and medical toxin exposures, is vital to truly understanding and ameliorating the current autism rate.

Respondent 0356

a. Gaps and underrepresented research areas.
I believe in developing biomedical markers. But I'd like to see more about what kind of early therapy is needed. Sound sensitivity needs to be addressed early on. This is an understudied area. Also, for some kids, ABA does work well. But for many it doesn't. Collecting early data on so we can tell when speech is developing in a autistic child would give parents needed guidance.

b. New opportunities.
I would like to see more paths early on to help those more affected or affected with a more serious form...if autism is subtyped.

Respondent 0360

c. Research priorities.
Research into possible environmental triggers for autism must be a high priority.

Respondent 0363

a. Gaps and underrepresented research areas.
It isn't so much when parents should be concerned. Many parents miss valuable time because Doctors put off investigating. We should also be concerned that multiple vaccines given at once has never been studied, and I don't believe that physicians know this.

b. New opportunities.
Vaccinated vs. Unvaccinated studies. Volunteer based. If you asked for Volunteers to step up and try the Swine Flu vaccine. Why not this study????

Respondent 0366

a. Gaps and underrepresented research areas.
There is no research being conducted about food allergies, and the causes of food allergies. I have witnessed children recover from ASD when their food allergies are addressed. I am concerned that missing the boat on something as simple as food allergy diagnosis is trouble in a supposed well educated group of doctors. 80% of the immune system is in the GI tract. Doctors need to be re-educated in basic diagnosis and metabolics. Hellloooooo

b. New opportunities.
Every child diagnosed with ASD should be first and foremost tested for food allergies and intolerances before they receive a neurological label. IGG, IGE, IGA. That would save insurances, taxpayers, and families millions of dollars. After food allergies are diagnosed.... they need to be assessed for the cause of the food allergies through an organic acid test and yeast culture. It's very basic stuff.

c. Research priorities.
1. Change the standards of care for children at risk of getting an ASD label to read........ Before a child is sent for a neurological assessment, the child should be tested for food allergies and intolerances via IGG, IGE, IGA. 2. When food allergies and intolerances are discovered, children should be given an organic acid test of the same quality of Great Plains Laboratories and a yeast culture

Respondent 0367

a. Gaps and underrepresented research areas.
Environmental triggers (including, but not limited to vaccines). The overuse of antibiotics; the over-fluoridation of our children; food allergies in autism and where they come from.

b. New opportunities.
More vaccines are being added and there are hundreds more in the pipeline.

c. Research priorities.
Vaccines are not the only trigger for autism. I believe they really do "set the table" for damage to children. Moving the schedule ahead (in 1991) and not doing any research before this was done was really nuts. Who decided that the Hep B vaccine should be given to EVERY SINGLE BABY - no matter if the parents were not carriers and these children were going to a home environment and not to a day care center? Probably the same person who DIDN'T add up the amount of thimerasol in the shots. It is not only the vaccine and the vaccine adjuvants (aluminum, squalene, thimerasol, aborted fetal tissue), it is also the over-prescription of antibiotics, the poor quality of our food, overuse of pesticides - it will be a rare case when only ONE thing is found to cause autism. The damage is different for each child.

Respondent 0368

a. Gaps and underrepresented research areas.
The IACC needs to promote research that looks at children on the spectrum and neurotypical siblings. What are the differences (physiological, metabolic, etc.) When several children in a family are affected, why are some more severely affected than others? It is important for parents contemplating having more than one child to know what the risk factors are. Are siblings likely to be affected? How severely might they be affected?

b. New opportunities.
I understand that children who are premature or have a low birth weight have a greater risk of becoming autistic. Is this the case? If so, why? Are there particular groups of children who have greater risk (e.g. Somali immigrants in Minnesota seem to have a much higher incidence of autism than the general population). I also think it is important to determine what specific physiological or metabolic conditions (e.g. mitochondrial disorders, history of autoimmune disorders in family) predispose a child to develop autism.

c. Research priorities.
I want to de-emphasize the genetic research and focus on environmental and physiological research. My son is 19 years old and I have been watching the gene-chasing for 15 years. After millions of dollars have been spent, without any benefit in terms of prevention or treatment for autism emerging from other areas of research, I think it is time to focus on other areas of research.

Respondent 0376

a. Gaps and underrepresented research areas.
Hello -- two studies that Tom Insel had removed need to be reinstated which includes the feasibility study for a vaccinated vs. unvaccinated study and that all autism related research recommended by NVAC be added.

b. New opportunities.
Tom Insel should be replaced as the head of this committee given his obvious ties to the vaccine industry (his brother).

c. Research priorities.
Replace Insel immediately -- CONFLICT OF INTEREST Get input from other autism organizations: National Autism Association, Generation Rescue Read www.fourteenstudies.org This link exits the Interagency Autism Coordinating Committee Web site

Respondent 0379

a. Gaps and underrepresented research areas.
The vaccinated vs. unvaccinated study, as well as any and all vaccine/autism connection-related research.

c. Research priorities.

Do the original recommendations regarding the research pertaining to the vaccine/autism connection. In particular, the comparative study of the vaccinated population to the unvaccinated population is necessary to sort fact from fiction. I see this study as the most important role of the IACC Committee to get to the real science on the matter, and further, that that is the only way to restore public confidence in the vaccine program.

Respondent 0385

c. Research priorities.
Identifying ASD is especially difficult to catch early in a first child, when parents have no basis for comparison. Additionally, pediatricians need to be educated so ASD is not misdiagnosed as something such as expressive-receptive speech disorder, thus derailing and delaying helpful treatment options. First time parents should be a target of education. Social cues can also be much more telling than speech delays and that point needs to be reinforced. Lack of eye contact or willingness for any type of back and forth play, along with a lack of gesturing are important signs. Parents need to know to follow their gut and not listen to the friend/relative/etc. who try to help with the 'oh, so and so was a late talker,' or 'all boys like to line up cars' etc.

Respondent 0386

a. Gaps and underrepresented research areas.
As both a parent and a professional, I am surprised at the lack of research funded for those on the autism spectrum that are nonverbal. As an author who has interviewed many on the autism spectrum, COMMUNICATION was a life skill considered one of the most crucial, YET Nonverbal and low-communicating individuals with autism, (often referred to as 'low-functioning'), have been almost entirely excluded from federally funded research. The nonverbal subgroup represents about 15-20% of the autism spectrum and yet there is no research focused specifically on them. When you combine the nonverbal group with those who can speak but are unable to communicate (low-communicating), this adds up to approximately 50% of the autism spectrum population, yet they are not represented in current research nor is there any research specifically focused on them.

b. New opportunities.
There are few, if any, interventions that work for these individuals and currently there is no research to develop them. We need research to develop successful interventions for this group. In spite of lack of communication being their most severe deficit, there is currently no research to develop communication interventions. We need this kind of research now. Nonverbal and low-communicating people with autism should be included in the Strategic Plan for Autism Spectrum Disorder Research. Almost nothing is known about nonverbal and low-communicating individuals, yet there is no research focused specifically on better understanding this group. In spite of tremendous advances in autism research in the past decade, this group has not benefited from the progress that has been made and little has changed for them. We need to develop research into methods of communication, and WHY theses individuals are unable to communicate.

c. Research priorities.
In our of Bill of Rights, we Americans have 'Freedom of Speech.' By not representing the nonverbals in the Strategic Plan for Autism Spectrum Disorder Research, we are denying many Americans of their right to communicate, and thereby denying them freedom of Speech. Research Objective: What methods can be used to teach nonverbals to communicate?

Respondent 0388

a. Gaps and underrepresented research areas.
When your child is not communicating or responding to communication in ways that are not translatable to others. As parents we are sometimes so tuned in to our children's needs, that we are often the last to notice when others are having difficulty in translation. This can lead to socially unacceptable behaviors when our children become frustrated when not understood.

b. New opportunities.
Alternative methods of communication need to be addressed more thoroughly. The more means of expressive and receptive communication at the child's disposal, the more likely a cognitive association is eventually made. Sign language is a valid form of communication for ANY special needs child and schools and therapists need to be open to the BEST fit for the individual child.

c. Research priorities.
Too often, nonverbal children are written off or marginalized, or designated as "willfully" noncompliant. Too much emphasis is put on standardized, measurable educational goals. Personally, I don't care if my son were in secondary school until he were 19 or 20- what is the point of pushing him farther ahead in a low-functioning class because he is nonverbal. Spend the time and money on speech/communication therapy the academics will follow.

Respondent 0396

a. Gaps and underrepresented research areas.
Relationship-based therapies. I am concerned that the voluminous ABA literature is being judged as valid and more important than is based on numbers alone. Relationship-based data, while it takes longer to generate, is quite informative. It seems to me that there is a frenzy around ABA - that folks want it to hold more promise than it really does. Everyone seems to appeal to the amount of extant literature as making ABA valid.... when the relationship-based literature has much more content within it.

b. New opportunities.
1- Brain changes with development with and without intervention, and with different therapeutic approaches. 2- Adult outcomes given different developmental challenges in childhood. 3-Early identification 4- Different developmental profiles and their developmental trajectories 5-The value of understanding developmental, social and emotional, sensorimotor profiles, and family functioning profiles for understanding developmental outcomes. 6-The importance of establishing a relationship with the child and family to support and predict outcome.

c. Research priorities.
Do not let this field continue to be dominated by top-down, skill-based, and compliance-based approaches to autism. Children and more than a set of skills and many families are not establishing good emotional ties to their developmentally- fragile youngsters. Skill development is NOT what this area needs to attain a deeper understanding of the problem.

Respondent 0397

a. Gaps and underrepresented research areas.
I am concerned over any epidemic which infects 1 out of 100 people. What is an epidemic if not 1 in a 100 involved?

b. New opportunities.
We had better go over the old as well as the new ground as statistically it is easier to prove a positive than a negative, yet this has been turned around with the assertion that thimerosal is not causative to ASD. We do not know the cause, but we know what isn't the cause sounds very self-serving and wrong.

Respondent 0403

a. Gaps and underrepresented research areas.
None

b. New opportunities.
We need to heavily educate the primary care physicians in looking for the Red Flags. It has been my experience that most doctors do not have clue even when it is obvious to parents and others. I would also love to see the Red Flags passed out to all pregnant mothers to assist them in looking for the warning signs and assisting them in knowing that early intervention is the primary tool to help the children.

c. Research priorities.
None - the plan is inclusive to most areas of concern that I have.

Respondent 0406

a. Gaps and underrepresented research areas.
Why isn't there more research into regressive autism? Is there anything being done to check to see possible genetic susceptibility?

b. New opportunities.
Thomas Insel has a major conflict of interest and should not be involved with the IACC in any way. It is my belief that his own personal interests are steering research away from where it should be. More vaccine research, not just epidemiology, should be done. A study of vaccinated vs. unvaccinated children should be done. He is opposed to this.

c. Research priorities.
Vaccinated vs. Unvaccinated should be done first. This will help determine the next step. But, before that, Insel should resign.

Respondent 0408

a. Gaps and underrepresented research areas.
The pediatricians are missing this left and right because the true signs of regressive autism are not out there. My daughter smiled, made eye contact, had some language, and was physically coordinated. However, what I have since learned were warning signs, she lined up her toys and didn't play with them, she walked on her toes, she watched TV out of the corner of her eye, and she had wild mood swings and temper tantrums for no particular reason. Had my ped asked the right questions, I may have sought a diagnosis earlier. All this happened when she was 20 months but her diagnosis wasn't until 42 months.

b. New opportunities.
Look into whether pedestrians know ALL the signs and what to look for.... then TEACH them some more!

c. Research priorities.
This should be prioritized behind treatment but just slightly ahead of causation

Respondent 0411

a. Gaps and underrepresented research areas.
Many children with ASD, especially younger children, behave completely different in non-clinical settings. For this reason, parental observations and answers on screening instruments MUST be given the same or greater weight than pediatrician and other observations. Also, stakeholders that diagnose should be carefully considered. Many children are being misdiagnosed as mentally retarded when they are clearly on the Spectrum. These misdiagnoses are most often given by regional centers and school districts in an effort to "save" the expensive and "Best" treatment for the higher-functioning children. More information on such a program can be found at http://www.valleysnafu.com/eibt.htm

c. Research priorities.
Give the same or greater weight to parental and caregiver observations. Just because a child presents differently in a clinical setting does not mean the child does not have an ASD.

Respondent 0422

a. Gaps and underrepresented research areas.
My autistic daughter is 19. She is intelligent and interested in the world. She has memorized 1000s of words and can read them. Yet, she cannot communicate effectively at all. Through my training she can meet her needs at home. I know her well and we get by nonverbally, but she is essentially nonverbal. She loves McDonalds vanilla shakes and I take her for one as a special treat on occasion. I told her one day she could have one and we got into the car and drove to the drive by window. I was informed the shake machine was broken. I had no way to explain that to her. She was quite upset and I felt helpless.

b. New opportunities.
What brain research is needed to explain how a child can accumulate 1000s of words and still not be able to string them together into sentences or communicate effectively. What new methods of communication can truly and effectively help bright children with no verbal skills to express their needs. What areas of the brain determine verbal language skills. My daughter is very teachable. Can't research in software or artificial intelligence come up with some method of communication?

Respondent 0423

a. Gaps and underrepresented research areas.
The IACC, as well as other federal health agencies, had taken the firm position that the cause of autism is unknown, but there is no link between vaccinations and the autism epidemic. Unbiased research MUST be done to explore if there is a link between autism and a single vaccine, vaccine combinations, vaccine ingredients or the overall national vaccination program. The most glaring research study omission is an unbiased study comparing the autism rate of vaccinated and un-vaccinated children. There are thousands of children in this country that have not been vaccinated. The recent statement by Dr. Insel, Chair, IACC, that such a study would be unethical is absurdly false. I am extremely concerned with Dr. Insel's recent comments that no additional research funds should be spent on exploring if vaccines are causing autism. Research should not be stopped, just because you are afraid of the answer.

b. New opportunities.
1. Medical study to determine susceptibility of a subset of children to vaccination damage. 2. Study comparing autism rates between vaccinated and unvaccinated children.

c. Research priorities.
1. Medical study to determine susceptibility of a subset of children to vaccination damage. 2. Study comparing autism rates between vaccinated and unvaccinated children.

Respondent 0426

c. Research priorities.
There are so many good instruments available NOW that primary care physicians just don't bother to use. If every pediatrician had parents spend the 4 minutes it takes to fill out the MCHAT they could catch almost every blessed kid with autism. Parents can do it at home before the appt. and the doctor doesn't even need to spend office time on it. Autism in a 2 year old is NOT SUBTLE. Is seldom subtle even in an 18 month old. Why is this still an issue. Why spend a penny on developing more instruments when money is needed to find out why these children are sick?

Respondent 0430

a. Gaps and underrepresented research areas.
If you really want answers urge concerned parents to video their infants and toddlers before and after vaccinations. Only when children who regressed are studied are you going to get answers.

b. New opportunities.
Study children with regressive autism.

c. Research priorities.
Study children with regressive autism.

Respondent 0431

c. Research priorities.
Current research does not address nonverbal and low-communicating individuals: 1) Nonverbal and low-communicating individuals with autism, (often referred to as "low-functioning"), have been almost entirely excluded from federally funded research. 2) The nonverbal subgroup represents about 15-20% of the autism spectrum and yet there is no research focused specifically on them. 3) When you combine the nonverbal group with those who can speak but are unable to communicate (low-communicating), this adds up to approximately 50% of the autism spectrum population, yet they are not represented in current research nor is there any research specifically focused on them. 4) Nonverbal and low-communicating people with autism should be included in the Strategic Plan for Autism Spectrum Disorder Research. 5) There are few, if any, interventions that work for these individuals and currently there is no research to develop them. We need research to develop successful int

Respondent 0434

a. Gaps and underrepresented research areas.
Nonverbal persons with autism

b. New opportunities.
1) Nonverbal and low-communicating individuals with autism, (often referred to as "low-functioning"), have been almost entirely excluded from federally funded research. 2) The nonverbal subgroup represents about 15-20% of the autism spectrum and yet there is no research focused specifically on them. 3) When you combine the nonverbal group with those who can speak but are unable to communicate (½low-communicating), this adds up to approximately 50% of the autism spectrum population, yet they are not represented in current research nor is there any research specifically focused on them.

c. Research priorities.
4) Nonverbal and low-communicating people with autism should be included in the Strategic Plan for Autism Spectrum Disorder Research. 5) There are few, if any, interventions that work for these individuals and currently there is no research to develop them. We need research to develop successful interventions for this group. 6) In spite of lack of communication being their most severe deficit, there is currently no research to develop communication interventions. We need this kind of research now. 7) Almost nothing is known about nonverbal and low-communicating individuals, yet there is no research focused specifically on better understanding this group. 8) In spite of tremendous advances in autism research in the past decade, this group has not benefited from the progress that has been made and little has changed for them.

Respondent 0436

a. Gaps and underrepresented research areas.
We need to do research into the gastrointestinal pathology in autism spectrum disorders.

Respondent 0440

a. Gaps and underrepresented research areas.
How important is "early intervention"? If intervention happens later, what impact, if any, does this have on adult outcomes? What populations are being underserved and/or under recognized, and how can they be better reached?

b. New opportunities.
I do not understand how this question differs from the previous one. If I am not alone in my confusion, it may be worthwhile to rephrase this for greater clarity the next time the IACC seeks public feedback.

c. Research priorities.
The priority of this section relative to the others seems appropriate to me. As for objectives within this section, more priority needs to be placed on identification and outreach for females and other underrepresented minorities and on addressing the ethical questions surrounding genetic testing. It is absolutely VITAL that autistic adults and others involved in disability rights be part of the ethics decision-making process.

Respondent 0445

a. Gaps and underrepresented research areas.
Doctors should be more educated in early evaluation and especially early evaluation of children on the spectrum kids with autism or black and white there every thing in between ranging for Severe and Profound to social awkwardness.

b. New opportunities.
early intervention and looking for environmental and immunization causes

c. Research priorities.
Educating doctors and research early intervention

Respondent 0446

a. Gaps and underrepresented research areas.
We need to make sure any early childhood screening includes the question, "Do you think your baby or toddler feels a primary attachment to you?" My son met all the developmental guidelines as they were written at the time, but I always felt like if I didn't come home one day he wouldn't notice. I believe if a pediatrician had ever asked me that question he could have been diagnosed at 6 months of age rather than 3 years. It is not only about physical developmental delays, such as motor skills and speech, because the more Aspergerian children may not have those.

b. New opportunities.
We need to research the underlying biomedical illness that contribute to Autistic symptoms and not only give grant money for the researching of drugs that treat symptoms (though that needs to be researched too). Autistic children can have underlying GI conditions they suffer from. That study out of England was riddled with conflicts of interest has sold out our sick children. Please support honest, unconflicted research into the GI ailments that plague many Autistic children.

c. Research priorities.
The vaccinated vs. unvaccinated health outcomes study should be returned to the docket. There are pockets of unvaccinated children all across this country: home schooled children, Amish, Christian Scientists, children of natural health parents, etc. There is even an entire medical practice in Chicago that has seen 30,000 unvaccinated children. And, the government knows who each and every one of these children are and why they are not vaccinated because the parents have to file vaccine exemption papers with their local health departments, so they are not difficult to find.

Respondent 0454

a. Gaps and underrepresented research areas.
Environmental and vaccine research. A truly UNBIASED study on the safety of vaccines in children. A study on the rates of autism in unvaccinated children. A study on the effect of environmental pollution on autism rates.

b. New opportunities.
Vaccine safety research that is not funded by pharmaceutical companies or anyone that has any relationship or vested interest in the pharmaceutical companies. The effect of environmental pollution on autism rates.

c. Research priorities.
1) "Study the effect of vaccines, vaccine components, and multiple vaccine administration in autism causation and severity through a variety of approaches, including cell and animal studies, and understand whether and how certain subpopulations in humans may be more susceptible to adverse effects of vaccines by 2011. Proposed costs: $6,000,000 2) Determine the feasibility and design an epidemiological study to determine if the health outcomes, including ASD, among various populations with vaccinated, unvaccinated, and alternatively vaccinated groups by 2011. Proposed costs: $10,000,000

Respondent 0455

a. Gaps and underrepresented research areas.
There needs to be earlier evaluation tools and techniques for children with "high risk". I have a 3 year old son with autism. I also have a 10 month son for which I have real concerns. My developmental pediatrician does not want to evaluate my 10 month child because she feels that there would be no conclusion. The early intervention guidelines require an average 30% delay. For infants, it is very difficult to qualify with a 30% delay.

b. New opportunities.
See a.

c. Research priorities.
1. There need to be different models for infants through 3 year olds. 2. There needs to be better diagnostic tools for infants. 3. There needs to be a team approach of doctors specifically geared to children with autism that are made up of the following: -Developmental pediatrician -Neurologist -Allergist -Internist -Nutritionist -Geneticist -Therapist (occupational, developmental & speech). These doctors and therapists should work side by side to determine the earliest signs of autism.

Respondent 0458

c. Research priorities.
I believe that developing genetic screening is the most important research objective. It will allow for intervention much earlier than any other screening method.

Respondent 0459

a. Gaps and underrepresented research areas.
I think research should be done on the psychological harm done to autistic people by being labeled as part of an "epidemic." Because autistic people are labeled as defective and disordered, they face discrimination every day. Autistic children are segregated into special education classes and forced to endure 30 days out of every year listening to "autism awareness" hype every April. Autistic adults are denied jobs because of a combination of their autism labels and employers' prejudice. This is contributing to the high rate of suicide (which is now the 11th leading cause of death) in the United States. This is a mental health concern that is affecting the entire population and this should be looked into.

b. New opportunities.
A good thing to do would be to hold a study among three schools and compare the self-image of the autistic children in all three groups. In the first group, have a positively-themed "Autism Month" where successful autistic people and neurodiversity activists come in and talk about their lives. In the second group, have the usual "Autism Awareness Month" campaign where diagnostic criteria and prevalence compared to AIDS and diabetes are shown and autistic children are told to talk about their lives with autism, according to a medicalized point of view, in order to encourage the kids to donate money to organizations such as Autism Speaks. In the third group, the control group, have no advertising campaign at all. Then you compare the self-image of the autistic children in May.

c. Research priorities.
I think this should be a top priority. After all, suicide is now the 11th leading cause of death in the United States and all this anti-autism prejudice is contributing to it! And according to the latest statistics, an American takes his or her own life every eighteen minutes... There's another eighteen minutes gone, that person who just committed suicide could have been an autistic who couldn't take all the prejudice anymore... And there's yet another eighteen minutes gone. It looks like we'd better get on that before more autistic people die because of all the anti-autism prejudice stirred up by pro-cure organizations!

Respondent 0461

a. Gaps and underrepresented research areas.
Research into the amount and types of vaccines and it's affect on the immune system and as one of the possible causes of autism/autistic symptoms. Study on rates of autism in vaccinated and unvaccinated populations

b. New opportunities.
Research into the amount and types of vaccines and it's affect on the immune system and as one of the possible causes of autism/autistic symptoms. Study on rates of autism in vaccinated and unvaccinated populations. Research also needs to be done into the biomedical treatments available that are not being covered by insurance plans and therefore not being done or driving people into bankruptcy who try to help their children improve.

c. Research priorities.
This debate will never end until these studies are done. If vaccines are a leading cause, it must be made known and we'll have to bite that bullet. Please don't be afraid to face the possible outcomes of these studies, thousands of children are being affected everyday. When they become adults and out of the school system (of which the wave will be starting in 5-6 years) it is going to be a major problem for all of society in what will happen to this populations

Respondent 0463

a. Gaps and underrepresented research areas.
Clinicians who care for children with autism report a variety of co-occurring medical conditions, including metabolic abnormalities, oxidative stress, mitochondrial dysfunction, body burdens of heavy metals, gastrointestinal dysfunction and pathology (constipation, diarrhea, ulcerative colitis, esophagitis, and malabsorption), dietary allergies, and immune abnormalities as common in this population. They also report that appropriate identification and treatment of these underlying medical abnormalities often result in improved behavior and in some instances a loss of ASD diagnoses. Investigations into both the incidence of these co-occurring medical conditions and into best practices for effective treatment represent a critical unmet need and a great opportunity for improving overall health of those with ASD.

b. New opportunities.
We believe there is much information to be gained from intensive evaluations of infants and toddlers during the reported timeframe of regression, including detailed historical data, an extensive physical exam, brain imaging, and laboratory parameters that elucidate the function of a wide range of metabolic, immunologic, and toxicologic parameters. In addition, many parents have opted to bank cord blood. A secondary research opportunity is to compare cord-blood parameters to those obtained during regression in order to identify what has changed in the child over time, including genetic analysis of both samples in an effort to identify epigenetic alterations, de novo mutations, CNV aberrations, and potential environmental exposures. Existing databases of phenotype characteristics (behaviors and core deficits) should be expanded to include a list of co-occurring medical alterations including CNS, sensory/perceptual, metabolic, immune, and gastrointestinal.

c. Research priorities.
The above research opportunities should be made a high priority and added to the NIH list of short-term objectives. All research should be prioritized to reflect the urgency of the goal of restoring health to those affected with the disorder, as well as the prevention of new cases.

Respondent 0465

a. Gaps and underrepresented research areas.
I believe that nonverbal and low verbal individuals are underrepresented in current studies. These individuals are the individuals with greatest need for effective interventions.

b. New opportunities.
Research concerning the neurological assessment of autism is funded form public and private sources. While this research is important, there is unlikely to be a cure in that autism spectrum disorders manifests itself as a spectrum. It is important to treat those individuals who are on the spectrum with effective therapies which have demonstrable, evidence based research to show efficacy for a particular individual. In order to customize treatments, assessments of individuals at the spectrum of functioning levels must be conducted so that a therapeutic model may be customized for each person.

c. Research priorities.
Research should be prioritized to improve the lives of individuals' quality of life. Thereafter, funding into drug development and other therapeutic models may be developed.

Respondent 0472

a. Gaps and underrepresented research areas.
Adult issues are missing from this section. Many of us are identified well after 24 months. We are not lost causes and ought not be treated as such. We are capable of learning throughout the lifespan. Additionally, no universal screening instrument, no matter how refined, will catch every single autistic infant. There needs to be an understanding of that, and attention to issues affecting older autistics. As for early identification, we must consider the optimal purpose of early identification/diagnosis (diagnosis). Ideally diagnosis should help families understand their child and provide an appropriate education, possibly including disability accommodations. But early diagnosis for the purposes of treatments and interventions geared towards making autistic children appear normal are unethical and inconducive to true learning. Autistic children deserve to learn and to grow as autistic people, not as children labeled defective and in need of fixing. diagnosis research needs to include ethics.

b. New opportunities.
Again, I urge the IACC to consider practical and ethical implications of the research which it advocates. Genetic identification research in particular has the potential to be grossly misused for eugenics. There are also troubling concerns about other avenues of research. One way in which we can address ethical issues is to include autistic people in the process of overseeing research and determining which research gets funded. To my knowledge, there are very few if any autistic people being granted such a voice in the current government and autism research funding structure.

c. Research priorities.
Identification of under-diagnosed populations (such as females and people of color) is very important, though such identification and help should not be limited to very young children.

Respondent 0474

c. Research priorities.
We suggest an increased emphasis on research evaluating methods for early identification of behavioral symptoms of autism. We also suggest that the IACC promote research examining effective methods for training doctors, teachers, and caregivers to identify behavioral symptoms of autism.

Respondent 0476

a. Gaps and underrepresented research areas.
In 70 years of research, the POSITIVE ASPECTS of The Neurological Condition That Can & Does Result In Autism have been widely ignored. These HIGHLY IMPORTANT aspects are most easily identified in adults, whom historically have been abandoned and ignored by the Medical Psychological Academic Community Claiming Concern With Autism (abbreviated throughout form as M...). M... is also very slow to admit that only 5 - 10% of their 'treatees' become employed, of whom the national average annual salary is USD $6,000 (no typo, 6k). We need to look at the entire personality of people with ASD. We need to look at all of the real world life needs of people with ASD. We need to listen to adults living on the spectrum who have, since at least 1969, been telling M that their concept of a terrible and hopeless disorder is NOT as M has historically assumed. If the research and treatments continue ignoring the above, concentrating on deficits, then M's lack of success.

b. New opportunities.
Listen to the many communicating adults. Compile and follow their experience and guidance as to what is actually needed. Organize a way to learn, understand and organize a personality outline, including ALL TRAITS positive and negative of a person with the neurological condition that can and does result in autism. Organize a way to learn and understand the complete Life Needs of a person with the neurological condition that can and does result in autism, and how their complete personality interacts with their Life Needs. We can furnish a very useful and effective framework to do just that, if no one else can. See: Part I c, for a brief glimpse; II b, for acronyms; IV b, and VI c for more brief discussion.

c. Research priorities.
Looking at and understanding the personality traits and how they function in autistic individuals of all ages, is of MAJOR importance (holistic approach). Because 70 yrs of concentrating only upon misunderstood behavior of frustrated, apprehensive, and worn-down children, has resulted in notably poor results in adulthood, where individuals spend 80% of life. An understanding of people with autism is best organized, in this hierarchy: Sensory Issues, Perception Issues, Reaction Issues (to S&P), Ability Issues, and then Thinking-System issues. Also looking at and understanding the individual's Mind/ Body LIFE Needs, and how the personality interacts, is also of MAJOR importance. This is organized in this hierarchy: Respiration, Hydration, Nutrition, Sleep, Elementary Harborage, Understanding Abnormalities, Elementary Horizon Expansion, Esteem of Self and Capability, Identifying Friends, Advanced Harborage, Developed Horizon Expansion, and Establishing Best Independence.

Respondent 0477

a. Gaps and underrepresented research areas.
Please make low verbal and nonverbal people with autism part of the Strategic plan! It is so important. Thank you very much.

Respondent 0480

a. Gaps and underrepresented research areas.
The Agency for Health Care Administration (AHCA), Florida Medicaid response to each section is detailed below. We have reviewed the IACC Strategic Plan and concur with the plan as pertinent and relative to the issues currently facing persons with autism and their families. AHCA has added additional comments based on what is working for Florida as we deal with a large population of persons diagnosed with ASD. Much of the content below indicates processes that are being implemented in Florida with many positive results.

b. New opportunities.
As soon as characteristics of Autism are exhibited, families in Florida are encouraged to have their child tested for ASD Characteristics usually appear before the age of three such as those noted by the Autism Society of America

Respondent 0481

a. Gaps and underrepresented research areas.
I would like to see more research on best methods of promoting community acceptance and inclusion of young children who appear to have autistic characteristics. All too often, identification of these children in preschool or other community settings leads to prejudice and exclusion, which in turn may cause the parents to avoid seeking a formal diagnosis for their child out of fear that an official label will result in a lifetime of discrimination. Families should be able to seek helpful therapies and services for a child without worrying that the civil rights of the child will be put in jeopardy. The use of neutral descriptive language in explaining characteristics of autism, instead of the medical terminology of symptoms and disorders, would go a long way toward increasing community acceptance of the Autistic minority population.

b. New opportunities.
I strongly support the stated goal of inclusion of bioethics considerations into the diagnosis and screening processes, including consideration of the implications of genetic testing. Every group of people, including Autistic citizens, deserves the protection of basic ethical considerations in research.

c. Research priorities.
I would place a high priority on the objective of measures to assess responses to various therapies and outcomes. Without such measures, identification of Autistic children is not necessarily to their benefit, as they may be placed in programs that do not meet their needs or may in some instances be harmful to their development.

Respondent 0483

a. Gaps and underrepresented research areas.
I should be concerned when committee members do not declare private interests which may bear on their decisions. Using unseemly and unlawful tactics members of the IACC removed important provisions to research vaccine as a potential cause of autism in January. For this several members and particularly Chairman Insel, who had undisclosed family connections to vaccine development and manufacture owe the public their resignations.

b. New opportunities.
By now there is much evidence that unvaccinated and lesser vaccinated populations have lower incidence of ASD. It is imperative that this evidence is properly researched and assessed. It is unnecessary for this to propective, and it would save much time if it was not.

c. Research priorities.
See above.

Respondent 0484

a. Gaps and underrepresented research areas.
Adrenal glands. Females, and racial/ethnic minorities are underrepresented in the research. Prevalance in Minorities Positive aspects of Autism is also underrepresented. These positive aspects must be distinguished from the extremely complex medical issues, sensory issues and learning issues must be given primacy. Also, too many think if there is no diagnosis by the age of 3, then they have nothing to worry about. Autism is not always noticeable at the age of 3, many go undetected for years, depending on the functioning level of the individual. Additionally, many of the symptoms of autism spectrum disorders are not revealed until progressive life stage developmental challenges are met. Sexual development happens whether the mind ever catches up.

b. New opportunities.
Listen to others on the spectrum that can communicate about living on the Spectrum. Parent organizations are important but many times approach it from desperation to seek normalcy, which at times only exasperates the child and leads them into anxiety, depression and withdrawal. Children, youth and adults desperately need to experience the joy of life. The joy that they experience with provide them with the hope and energy that they need to constructively engage their great weaknesses. Well-intentioned organizations misunderstand the behavior of the child or adult on the spectrum and can lead to detrimental and unintended consequences and harm to the individual on the spectrum. This holds true for educators, doctors and other professionals who do not eliminate other variables as the reason for behaviors they don't understand.

c. Research priorities.
How the different systems of the body play a part in the symptoms of Autism. Adrenals play a very important part in many of the areas described as symptoms of Autism. Therapies that do not include drugs or changing the individual but how to help the individual constructively deal with symptoms. We also need to change the way society looks at Autism. We need to know the % rates of the differing levels of Autism "High Function Autism, Asperger's, NLD and others" not everyone with Autism is doomed to a life sentence of misery.

Respondent 0485

a. Gaps and underrepresented research areas.
Any prospective parent, aware of the increase in children with medical and neurological disabilities that fall in the continuum of Autism Spectrum Disorder should be concerned that the IACC is failing at every one of its obligations to the growing autism community. This failure has reached the point to be officially called malfeasance. Specifically, Dr Insel should resign immediately. The position that Dr. Insel mismanaged, should be filled by a physician experienced in environmental illness, biomedical and behavioral interventions. Until this happens every parent, every citizen should view the IACC as ineffective and a black hole for the necessary research that will make a difference to the ASD community. In short, the IACC as currently directed and administered is deaf, dumb, and blind, and unaccountable to the needs of the broader, medically-ill, autism community.

b. New opportunities.
New opportunities for advancing research and knowledge could be achieved by expanding the public members equal to the Federal Agency representation. Simultaneous, remove the NIMH at the lead agency in autism research. 1 in 100 children with autism are physically sick, not mentally ill. Establish an Autism Advisory Board with members from advocacy organizations. An Autism Advisory Board would provide the essential "critically lacking" role of assuring transparency and accountability. Had the Autism Advisory Board existed and the above recommendations been in place, the autism community would have been truly served, and the IACC wouldn't be viewed so inept and indifferent like FEMA, during hurricane Katrina........"Insel, your doin a heck of job!"

c. Research priorities.
Establish an Autism Advisory Board to ensure transparency and accountability!

Respondent 0492

a. Gaps and underrepresented research areas.
Nonverbal and low-communicating individuals with autism, (often referred to as low-functioning), have been almost entirely excluded from federally funded research. The nonverbal subgroup represents about 15-20% of the autism spectrum and yet there is no research focused specifically on them. This is the population that needs support. When you combine the nonverbal group with those who can speak but are unable to communicate (low-communicating), this adds up to approximately 50% of the autism spectrum population, yet they are not represented in current research nor is there any research specifically focused on them. Nonverbal and low-communicating people with autism should be included in the Strategic Plan for Autism Spectrum Disorder Research. There are few, if any, interventions that work for these individuals and currently there is no research to develop them. We need research to develop successful interventions for this group.

b. New opportunities.
See above

c. Research priorities.
See above

Respondent 0493

a. Gaps and underrepresented research areas.
We should have been concerned as soon as we started injecting known toxic chemicals into babies. We should have been concerned way before it affected 1% of the population. And we certainly should be extremely concerned with the intellectual dishonesty which is leading our efforts into finding the cause of this real and growing tragedy. Missing is the studies of the effected children and their health unvaccinated subsequent siblings. Missing is unbiased look at vaccines into the role that almost every parent with a child on the spectrum talks about. Missing is the compassion of an entire medical and government for the children and their families.

b. New opportunities.
Vaccine safety research. Actually inviting toxicologists to verify the safety of thimerasol injected into infants pregnant women or any mammal. Not allowing anyone with ties to vaccines to be a part of the studies or study design. Gene research is a total waste of money and more time if our genes are mutating this fast we don't have to worry about autism we're all going to be dead in the next 20 years

c. Research priorities.
Objective parent driven research with out the big pharma influence. Study the people affected, not the general public.

Respondent 0494

a. Gaps and underrepresented research areas.
VACCINES!! We need unbiased vaccine testing. I need to know what did this to my son so that we can medically treat him if it's an option (which I believe it is!!) I feel as if you are repeating the "efforts" or lack of research that occurred with the tobacco and cancer relationships. ALL conflict of interest must be removed from any and all research.

b. New opportunities.
Change the vaccine schedule. I am not anti-vaccine but pro safe vaccines. Research why the rates of autism coincides with the number of vaccines given to our children.

c. Research priorities.
Vaccine research. Doctors must never say "let's wait and see" when a child is showing any type of development delays.

Respondent 0495

a. Gaps and underrepresented research areas.
Research on children who are nonverbal; research on children who are older (7-11) who are nonverbal, but have age-appropriate receptive language.

Respondent 0501

a. Gaps and underrepresented research areas.
Too much focus on "labeling" children. Focus on educational and development opportunities beneficial to all children that may reduce impact of autism later in those that develop.

b. New opportunities.
Emphasize less what sets these children apart and focus more on what similarities exist. Acknowledge their humanity!!!

c. Research priorities.
Study information parents need to know to improve quality of life for their children and their families. Examples may include how to access to respite services, respecting the life of their child, how to handle stress.

Respondent 0502

a. Gaps and underrepresented research areas.
Would like to see some kind of ASD screening tool used in pediatricians offices, particularly if the parent has expressed concerns about a child's development. Perhaps some research into how medical schools can better train pediatricians to discuss concerns about a child's development with parents. If a parent is concerned and the pediatrician says "Let's just wait and see... Maybe wait until preschool starts and see how he does...", the parent will likely be comforted and end up in denial of what she knows she is seeing. Not speaking from personal experience here, of course. ;-)

c. Research priorities.
"ASD screening instruments and approaches for use in community settings to identify people who require diagnostic evaluation" is important, and some sort of mandate to require preschools and daycare centers to bring in a "child find" team to each class at least once per school year. A standard for "diagnostic evaluation" would also be helpful. Currently some kids, especially the verbal ASD kids, are being seen and diagnosed (and often misdiagnosed or over-diagnosed) by psychologists they see for behavior issues or ADHD-type activity, and some are being diagnosed by developmental pediatricians or pediatric neurologists. Other kids are only being "diagnosed" by schools, and how this is done varies from state to state! Kid A might be essentially identical to Kid B, but Kid A might have a diagnosis of ADHD + Asperger's Syndrome+ NVLD, while Kid B might just have a diagnosis of AS (with his diagnostician noting that AS generally includes ADHD-type features and NVLD).

Respondent 0505

a. Gaps and underrepresented research areas.
Prenatal and pre-conception - Mother should get vaccinations before becoming pregnant to avoid receiving a vaccine while pregnant.

b. New opportunities.
Primate research on in utero birth defects when vaccine is administered to mother during various stages of pregnancy.

c. Research priorities.
Primate research on in utero birth defects when vaccine is administered to mother during various stages of pregnancy.

Respondent 0506

a. Gaps and underrepresented research areas.
While we recognize the importance of diagnostic and behavioral screenings for early identification of ASD, it is also important to support research that addresses co-morbid medical conditions that may be present in young children with ASD (i.e. metabolic disorders, gastrointestinal disorders, nutrition and feeding issues). Identification of these conditions may lead to the development of biomarkers, interventions and treatments that may impact behavior and outcome. We would like the NIH to consider research topics of relevance with respect to medical co-morbidities.

Respondent 0507

Helen McNabb

a. Gaps and underrepresented research areas.
1. Motherly Instinct - Listen, listen, listen to the mother! They are the first to intuitively know but are ignored! God gave the mother the instinct to understand her child, especially when something is not right or if they're in danger! 2. Premies! Recognizing the core symptoms of ASD in children who were initially born prematurely weighing under 2 pounds. Their core symptoms would not emerge by age 3 if they are under 2 pounds. Therefore, the diagnosis cannot be reliably made at age 3 for premies. 3. Accurate Assessments of Children who have ASD with: Speech Language Disorder (Processing), Math Disability, Depression & Anxiety, Memory Deficiet due to premature birth, low average I.Q. 4. Testing of Parents of Children with ASD to see if they have ASD, also. 5. Free Screening - All ages (child to adult) if someone suspects ASD. A lot of adults who were not tested years ago would benefit from the services that are offered today. They need to be informed and supported.

b. New opportunities.
1. The Gilliam Asperger's Disorder Scale should be provided to the parents to complete if they suspect their child may have Asperger's Disorder. This scale should be accessible to the physicians, educators, etc. who can then make a referral for further testing. 2. ERASE STIGMA - Recognizing obvious delays in children's milestones should always be questioned and an assessment should be done immediately. Time is very important. Physicians too often are afraid of taking a risk or the time to question if a child may have ASD because of possibly insulting the parent. 3. Open Discussion/Screening - Physicians, psychologists, need to have an open discussion with the caregiver who suspects ASD and allow for screening even if they disagree! Especially with premies of low birth weight who never meet their milestones and especially when the parents and teachers see a problem in school. 4. Free Screening for anyone who suspects they have ASD.

c. Research priorities.
I would prioritize the research objectives according to age: 1. Adult population 2. Adolescent population 3. Child population because the older population has been suffering with ASD the longest and needing greater supports.

Respondent 0509

a. Gaps and underrepresented research areas.
We need research on environmental factors -- especially vaccines. A growing body of evidence points to immune system disruption as a factor in autism. Inflammation in the brain and GI tract, autoantibodies to the myelin basic protein coating nerves, inflammatory cytokines in the spinal fluid, and imbalance between Th-1 and Th-2 cells have all been found in people with autism -- in published, peer reviewed studies. The increase in autism has paralleled the increase in vaccines. Babies now receive 2 dozen vaccines by age 2 and another dozen before school starts. This is unprecedented in human history. We do not fully understand the impact of this on developing immune systems, and the impact of the immune system on the nervous system, brain, and GI tract. In addition, the increasing amount of mercury and other pollutants in our environment needs further research.

b. New opportunities.
We need: - Studies comparing health outcomes among vaccinated and unvaccinated children (observational, retrospective studies). - Studies on the impact of vaccines on animals (gold standard double-blind studies). - Studies on vaccine injured children. Inquiring minds want to know: What is the longterm, cumulative impact of our current vaccine schedule? Who is most vulnerable to vaccine injury? How can vaccine injuries best be treated? Those for whom "CYA" is the first priority do not want to know the answers to any of the above questions.

c. Research priorities.
1. Studies comparing health outcomes among vaccinated and unvaccinated children (observational, retrospective studies). 2. Studies on vaccine injured children. 3. Studies on the impact of vaccines on animals. 4. Studies on biomedical treatments for vaccine-injured people with autism.

Respondent 0510

a. Gaps and underrepresented research areas.
The AGE and/or the EARLIEST that parents could be seeing symptoms in their child. Also, how we can make the outlined concerns better flagged by the medical community (or our Pediatricians!).

b. New opportunities.
WHAT coincides with our "WHEN"????? Immunizations?? Illness?? We need answers.

c. Research priorities.
The link to IMMUNIZATIONS!!!!!!!!!!!!!!!!

Respondent 0514

a. Gaps and underrepresented research areas.
Priority = environmental and biological ischemia event prevention

b. New opportunities.
Priority = environmental and biological ischemia event prevention

c. Research priorities.
Priority = environmental and biological ischemia event prevention

Respondent 0519

a. Gaps and underrepresented research areas.
Regression must be stated as a reality. Difficulty in getting medical attention for co-occurring medical conditions subsequent to ASD diagnosis should be acknowledged. Inclusion of reports from clinicians on behavioral improvements resulting from medical treatment of medical conditions that improve an individual's functionality. Comparative prevalence studies of adults born before 1987 compared vs. those born after 1987 to determine and/or confirm the contribution of the environment relative to diagnostic changes in growth of autism cases.

b. New opportunities.
Development of sensitive screening tools detecting development differences to improve support of epidemiology and risk factor studies. Including co-occurring medical conditions as possible red flags for use in screening and identifying biomarkers in these conditions. Assessment on possible differences between the adult ASD phenotype vs. teenage ASD phenotype. Rapid screening tools for adults.

c. Research priorities.
Determining the efficacy of existing screening tools and their efficient use prior to developing additional tools that may or may not be utilized.

Respondent 0520

a. Gaps and underrepresented research areas.
Relationship Development Intervention. Both of our sons have Autism and we have started RDI with both of them. We have seen amazing progress in their ability to think for themselves and participate with us and others.

b. New opportunities.
I firmly believe that Relationship Development Intervention is the gold standard in Autism treatment, and research studies have shown that this is not an experimental treatment by any means.

c. Research priorities.
I am requesting that there be funding to study the efficacy of Relationship Development Intervention (RDI) as a viable treatment modality for individuals with ASD.

Respondent 0521

c. Research priorities.
Please make nonverbal persons with autism part of your strategic plan

Respondent 0524

a. Gaps and underrepresented research areas.
We need to explore the question, "concerned about what." I suggest that we should be concerned about autistic behaviors which lower the autistic person's quality of life, but not autistic behaviors (e.g., flapping) per se. I would love to see us move toward concern and acceptance simultaneously, rather than encouraging freak-out in families with new diagnoses. We need to fight the culture of panic.

b. New opportunities.
We need to help families identify likely ASDs and begin early intervention without panicking. That is, we need to remind people that all children develop, and that we don't treat a typical two year old's immature behavior as a predictor of adult behavior, so neither should we over signify an autistic two year old's immature behavior.

Question 2: How Can I Understand What is Happening?

Respondent 0013

Eileen Nicole Simon
conradsimon.org This link exits the Interagency Autism Coordinating Committee Web site

a. Gaps and underrepresented research areas.
Idiopathic autism is not necessarily the result of some yet to be identified genetic cause. Environmental causes must be sought for the recent increased prevalence of autism. Consider combinations of two or more environmental factors - not just gene-environment interactions. Almost all infants are subjected to invasive obstetric procedures and neonatal treatments. Clamping of the umbilical cord, vaccinations, and antibiotic treatments do not cause apparent harm to most infants, but infants unlucky enough to suffer ischemic impairment of the brain (by clamping off postnatal placental blood flow too soon) may be at greater risk for injury from postnatal treatments. Vaccination is a highly visible intervention. Most of us are completely unaware of other interventions. We need to ask and be informed of all perinatal standard treatments. See my suggestion for a vaccine research strategy at: http://www.conradsimon.org/files/IACC4feb2009strategy.pdf This link exits the Interagency Autism Coordinating Committee Web site

b. New opportunities.
Focus on the brain, and how it can be affected by all of autism's etiological causes. Blood flow and metabolism are not uniform throughout the brain. The brain is a collection of sensory and motor systems. The auditory system has greater blood flow and metabolism than any other component of the brain. The auditory system is the alerting system of the brain, and may be the essential system for general awareness at some level. Children with autism display hyperacusis and lack the normal (and expected) ability to learn language through the auditory sense. People working in the field of auditory processing should be encouraged to take an interest in the language disorder of children with autism. People working in the field of computational analysis of speech (as now in use to create subtitles for meetings) should likewise be urged to investigate what is missing in the autistic child's analysis of speech.

c. Research priorities.
See the recent paper by Russo N et al. Brain stem transcription of speech is disrupted in children with autism spectrum disorders. Dev Sci. 2009 Jul;12(4):557-67. As for greater male vulnerability see the paper I published with my dissertation advisor, Simon N, Volicer L (1976) Neonatal asphyxia in the rat: greater vulnerability of males and persistent effects on brain monoamine synthesis. J Neurochem. 1976 May;26(5):893-900. Look at effects of alcohol, Valproic Acid, Thalidomide, and other drugs on the brain. Alcohol affects brain stem centers of high metabolic rate, like the inferior colliculi and mammillary bodies, as do other drugs. See Husain K et al. Carboplatin-induced oxidative injury in rat inferior colliculus. Int J Toxicol. 2003 Sep-Oct;22(5):335-42. and Cavanagh JB & Nolan CC. The neurotoxicity of alpha-chlorohydrin in rats and mice Neuropathol Appl Neurobiol. 1993 Dec;19(6):471-9.

Respondent 0018

c. Research priorities.
We must recognize autism as a medical condition. We must learn to assess the medical condition of children with autism. We must learn to categorize children not by their level of function but by similar medical profile in order to ever hope to draw the correct conclusions from any research study looking into mechanisms or treatments.

Respondent 0023

John Best
Hating Autism blog

a. Gaps and underrepresented research areas.
We know what's happening. Mercury is preventing methylation and killing brain cells. Get the mercury out of the kids' brains.

b. New opportunities.
Try checking out studies on the APO-E4 protein as it relates to Alzheimer's. Since autism and Alzheimer's are the same thing, you might learn something.

c. Research priorities.
Call Mark Geier or Andy Cutler. They'll give you all the answers.

Respondent 0029

a. Gaps and underrepresented research areas.
What are the most effective methods and service delivery models for parent education? What are the best methods for teaching social communication and play to children and to families? What is the experience of families navigating public bureaucracies?

b. New opportunities.
Community participatory research models.

c. Research priorities.
Less emphasis on biomed and genetic research and more emphasis on service delivery, policy and cost effectiveness research.

Respondent 0035

a. Gaps and underrepresented research areas.
Teaching parents to view their child's behavior not as "autism" but as behavior that can be changed depending on how the environment is structured and the consequences that are provided. Research parent's abilities to view the diagnosis in this way and follow the necessary steps toward adjusting their child's environment and applying appropriate consequences.

b. New opportunities.
I don\'t know

c. Research priorities.
It is very important that parents understand that while their child is "autistic" there are ways to address the behavior and the behavior should not be excused as "symptoms of autism"

Respondent 0037

a. Gaps and underrepresented research areas.
You people took care of that. You backdoored the whole process which I will never forget. VACCINES ingredients,multiple shot at the same time and ones that are irrelevant.

b. New opportunities.
chelation mHBOT viral and bowel disease that is where your research should go

c. Research priorities.
environmental toxins and vaccine strain virus

Respondent 0046

a. Gaps and underrepresented research areas.
Sensory Integration, Speech & Language, Immune Deficiency, Sleeplessness, Gastrointestinal concerns, Food Allergies.

c. Research priorities.
"How can I understand what is happening?" I suggest adding: Services available at a young age, Medicaid Waivers & explanation. I would like to see Legislation for families with children who have ASD, regarding State reciprocity for Medicaid Waivers. Many families are "trapped" in one State, unable to move due to fear of losing Medicaid Waiver services. The waiting lists in States average FIVE years! This feeds into the regression of goals mastered, and is extremely difficult for both the child and the family.

Respondent 0047

a. Gaps and underrepresented research areas.
True, honest information on immunizations would have, or at least COULD have prevented my twin grandsons from becoming victims of autism. The CDC has been dragging its feet for years to avoid having to face these issues, quite possibly resulting in the current epidemic we now face, and which continues unabated while the drug companies and insurance companies pave the way for yet MORE under-tested immunizations.

b. New opportunities.
The public needs to be made aware of the current epidemic in honest and straight-forward terms, and parents should be given enough information and the right to make INFORMED DECISIONS about what immunizations their children will have until the issue of immunization safety has been HONESTLY and TRUTHFULLY RESOLVED.

c. Research priorities.
When so-called experts speak on the subject of autism and immunizations, they should be required to give full disclosure of their financial relationship with any pharmaceutical or insurance company. How else can the public trust their "expert" opinions, if they don't reveal the truth about the fact that they are receiving (LOTS OF) money from the manufacturers of the vaccines they so heartily endorse as safe?

Respondent 0049

a. Gaps and underrepresented research areas.
The anecdotal quality of autism is understressed but also undervalued. Every individual on the Spectrum displays slightly different variations of similar symptoms. These differences make consistent therapy difficult, but they also make it more important to spot the similarities. What works for one individual might not work for another, but something similar to the original strategy (tweak it just a little to eliminate background noise, make it blue instead of yellow) might yield great results.

b. New opportunities.
Parent groups and advocates are not stressed enough for HFA (High Functioning Autistic) individuals. Severe needs ASD are easier to spot, but HFA tend to be ignored or mainstreamed before they have the necessary skills. The condition is either ignored or invisible to most school officials, and SpEd staff tend not to know how to tailor their support for the HFA.

c. Research priorities.
Provide additional research for HFA individuals. In many cases, they are capable of leading relatively independent adult lives, but they need interventions and therapies starting at a young age, they need strategies for navigating the neurotypical world, probably more than their severe needs ASD peers, because their condition "looks" less like "disability" and more like a behavioral problem.

Respondent 0052

a. Gaps and underrepresented research areas.
The most common things are 1) what does this diagnosis really mean for my child?, 2)what kind of things can I do to help my child? and 3)How is an autistic child different from a "normal" child? These seem pretty basic, but because of the spectral nature of the diagnosis, these vary like crazy from person to person and it is far from helpful to have people who only seem to recognize the extreme cases try to advise parents and families on this issue. Worst case scenarios are great for preparation purposes, but for parents who are just trying to get a handle on the now, they can be thoroughly defeating. I'm convinced that that is one of the major culprits behind all of the finger pointing that so many parents waste so much time on. I would also like to see more research done on the proposed connection between Autism symptoms and allergies- many kids see improvement after food allergies are ID-ed and addressed, could other allergies have a similar effect?

b. New opportunities.
More research needs to continue on how these kids process information, how to help them do more, and how to best deal with associated issues because these are the issues that will ultimately help our kids. Research on things that affect symptoms are also helpful, but only as a means to help our kids to reach their potential, as a witch hunt for a scapegoat.

c. Research priorities.
The focus has got to be on the people currently diagnosed and how to improve their lives. Parents and families need to know how to help their family member to improve their quality of life.

Respondent 0054

a. Gaps and underrepresented research areas.
The same as number one.

b. New opportunities.
Again, discontinue Gernsbacher's funding and not allow Steve Shore and John Robison to review research. Also, I feel that you should have at least one pro cure autistic as one of your public members. Or maybe more. Stephen Shore should not be allowed to be a public member as he is opposed to curing autism and that is the purpose for which the IACC was created.

c. Research priorities.
same as above.

Respondent 0057

a. Gaps and underrepresented research areas.
Know all the skill areas and age appropriate levels. Helpful for clinicians as well.

b. New opportunities.
teenage preparation for life skills and vocational skill building is very poorly done in general.

Respondent 0059

a. Gaps and underrepresented research areas.
* What role is vaccine playing in inflammatory diseases and mitochondrial diseases? *Vaccinated vs. unvaccinated study, even studying vaccinated vs. unvaccinated in siblings of autistic children. * Are deficiency in L-carnitine levels common, and what is the role of the immune system playing in interfering in the transfer of very long chain triglycerides across the membrane of peroxisomes, before they are directed into the mitochondria *I would like to know that the people working for this agency are not involved some way in the production of vaccines and their loyalty lays with the vaccine and pharmaceutical companies instead of those with autism and their families.

b. New opportunities.
Babies and the elderly are more prone to strokes. What role do vaccines play in bringing on inflammatory diseases that causes strokes, bowel disease, Kawaskis, autism, and a host of other autoimmune diseases? Environmental factors more than gentics needs to be studied. No one can control genetics but the environment can be controlled, and if controlled we can prevent autism! * vaccinated vs. unvaccinated study *Federal agencies have stepped on citizen's constitutional right: The right in their pursuit of happiness with disregard to vaccine injuries. *Tom Insel resignation would also advance research and knowledge too.

c. Research priorities.
*First Tom Insel needs to go and someone without prejudice towards vaccine injuries needs to be given the job as head of the IAAC. I suggest Bernadine Healy if she would have this job. *Vaccinated vs. unvaccinated Study * Study of siblings with autism that have been vaccinated vs. unvaccinated, AND SURE ENOUGH MONEY TO FINISH IT AND LOOK AT THE MEDICAL RECORDS. *Help those already damaged.

Respondent 0060

a. Gaps and underrepresented research areas.
Broader use of existing scientific data on medical conditions, such as motor and sensory problems, seizures, metabolic abnormalities, gastrointestinal pathology, mitochondrial dysfunction, inflammation and cognitive disabilities that accompany ASD. There is no recognition of inquiries underway, such as those by Autism Treatment network (ATN) documenting medical features in 15 academic centers. Harnessing of existing data to facilitate identification of environmental risk factors as a means to determine their effects on human health and to chemical exposures as they relate to ASD. Studies to investigate the toxic load present in affected individuals that could contribute to the severity of ASD and functionality of the individual. Expansion of research projects on the biology of autism informing causality from 4 to 25 projects with topics that include, but are not limited to, immune and metabolic. Expansion of biobank budget to provide for appropriate controls/resources.

b. New opportunities.
Use of data from National Center for Environmental Health National Health and Nutrition Examination Survey to facilitate the establishment of reference ranges for unusually high exposure levels to a toxicant within individuals/groups, identify the proportion of the population with toxicity levels above those with known adverse health outcomes, tracking time trends in exposures to determine what changed in the environment and set priorities for research on the health effects of exposure to environmental chemicals. Conducting body burden studies on our children to investigate the toxic load of toxins like mercury and aluminum, their combined and isolated toxic synergistic effects in the presence of other toxins, as well as when present with viruses and bacterial infections.

c. Research priorities.
Greater attention given to the role of environment and corresponding increase in research objectives in environmental research to better understand autism's etiology.

Respondent 0074

a. Gaps and underrepresented research areas.
I understand exactly what is happening. My son has an autoimmune encephalopathy due to overuse of vaccines in infancy. Your agency, as far as I can see, is part of the cover-up.

Respondent 0075

a. Gaps and underrepresented research areas.
The Medical Psychological Academic Community Claiming Concern With Autism (partly due to the constant pressures for correcting abnormal and misunderstood behavior) has put off and swept aside any form of complete understanding of The Neurological Condition That Can And Does Result In Autism. Consequently, to date, the real ROOT PROBLEM SET has been predominately misunderstood and ignored rendering a solid definition of the complex condition out of reach. Negative aspects of condition have been addressed (naively), and positive aspects neglected. Without the WHOLE PICTURE, understanding is not likely. We clearly have 70 years of poor progress to prove that.

b. New opportunities.
Understanding and studying the features of the personality of a person with the neurological condition that can and does result in autism, when organized in a SPRATS hierarchy, (Introducing acronyms for the hierarchies of section I c, IV b, and VI c) and then understanding the real-world Life Needs hierarchy, of that personality organized as R-W-N-S-eHa-UA-eHoE-ESaC-IdF-aHa-DHoE-EBI and then studying how the two hierarchies interact will go a notably long way to fully understand the abnormality, and bring HUGE progress in preparing now misunderstood, (but with great obfuscated value) children for success both as a child AND as an adult. We have the best experience available to demonstrate how to start and go about this. We can also demonstrate a sample SPRATS chart.

c. Research priorities.
The condition that fosters autism is an abnormality, NO question. However, the condition also OFTEN brings with it: SPECIALIZED PERCEPTIONS AND CAPABILITIES, rare skills useful for analyzing, simplifying, and solving complex, often interactive problems in various (almost any) science, technology or art. The 70 yrs of choosing to remain tightly focused on naively attempting to normalize the misunderstood behavior of frustrated, apprehensive, and worn down children, and then abandoning them as they age, has resulted in 90-95% of the subjects of behavioral treatments remaining seriously under, or un-employed. Of those luckily employed their national average annual remuneration is USD $6,000 (no typo, 6k). I'm lead to say that the historic approach of nearly GUARANTEES FAILURE AS AN ADULT. Appropriate recognition, encouragement, development, and application of the ignored positive aspects, STOPS unnecessary anguish, wasteful expenditure of resources, AND LIVES.

Respondent 0077

a. Gaps and underrepresented research areas.
I was diagnosed at age 12, and so I wasn't very clear about what AS was or how I was different. It took several years for me to grow and learn about myself, before I was able to be truly accepting of myself.

b. New opportunities.
How can we counsel children, diagnosed at early ages, with learning how to grow and accept themselves (along with myriad of problems associated with growing up)?

c. Research priorities.
N/A

Respondent 0105

a. Gaps and underrepresented research areas.
Although there is a very strong genetic component in ASD, environmental factors must also play a crucial role in their manifestation or not. I personally think that the concerns relating to vaccination have not been allayed. Vaccination, which is mandatory at this early age, constitutes an invasive method affecting the still immature immunological as well as neurological system, both of which are involved in ASD. Metals and other chemical compounds included in vaccines, and even in foodstuffs, could intoxicate the already vulnerable nervous system in children with ASD.

b. New opportunities.
More studies related to the Brain Barrier and Gastrointestinal Barrier connection and close interrelation, must be conducted. The experimental use of animal models could be allowed for these studies alone. Detailed questionnaires and protocols regarding persons with ASD must be in place to complete this study.

c. Research priorities.
Although there is no shortage of studies on High-Functioning and verbal persons with ASD, the same cannot be said for the low-functioning and nonverbal persons, who constitute almost half of the ASD population. Even the High functioning and Asperger's who are fighting successfully for their self-advocacy rights, tend to neglect those at the low end, as if they don't exist. More in depth studies focusing on the low end of the spectrum are essential, as this is a population that may conceal immense strength and potential yet to be discovered, revealed and used. Furthermore, the low end of the ASD is the population who needs the maximum of treatment and care. Although it is more difficult to perform a study at the low end of the ASD, it is worthwhile as these persons are more in need for therapeutic interventions and for unlocking their hidden potential.

Respondent 0116

a. Gaps and underrepresented research areas.
There is so much information available; it is often hard for parents to figure out what to do first / next. I have frequently advised parents on books to read and doctors to see in the area.

b. New opportunities.
A contact person / group in each area that can help parents. Right now the information is not organized and frequently unreliable.

Respondent 0125

a. Gaps and underrepresented research areas.
I do not believe this is a particularly relevant topic and wouldn't make it a focus of research.

Respondent 0131

a. Gaps and underrepresented research areas.
Supporting the development of research that addresses the efficacy of existing interventions aimed at mitigating behavioral and medical challenges should be a top priority. Specifically, research designed to contrast highly structured treatment to approaches aimed at improving social contextually based communication and the comprehension and production of spoken language, as well as examining the change in outcomes associated with the frequency, intensity and duration of treatment. Research that investigates the common practices in screening, assessment and treatment and how those practices are impacted by state and local interpretation of federal guidelines should be included.

b. New opportunities.
No comment

c. Research priorities.
No comment

Respondent 0133

a. Gaps and underrepresented research areas.
Open and honest discussion about environmental triggers (including immunizations) and the other typical health issues which surround a child (gastrointestinal and immune). Really looking at subtypes (it isn't autism it is autisms)...and co-morbity and creating models which are holistic in nature (Greenspans model) that takes into account Sensory Processing and family functioning, as opposed to linear medical models which are cause effect.

b. New opportunities.
see above

c. Research priorities.
More research dollars into risk factors (familial and environmental). More attention paid to the experiences of families with children who have an ASD. More seriousness given to the knowledge of the child (longitudinal studies) as s/he interacts in their environment.

Respondent 0137

a. Gaps and underrepresented research areas.
Clinicians need to be educated about the role of epigenetics in development and about the influence of oxidative stress and impaired methylation on development. This needs to be added to the medical school curriculum, residency training and to continuing professional education platforms in order to increase knowledge and awareness in a short period of time. Once this level of understanding has been accomplished in the professional ranks it should be communicated to parents.

b. New opportunities.
The scientific and medical communities need to reach a consensus that there is indeed a measurably metabolic abnormality that is a part of autism and this metabolic abnormality is related to development. Thus it is a reasonable and logical contributor to developmental disorders, which is fortunately amenable to some level of treatment, especially when recognized at an early age. In other words, the "Understanding" has to start with scientists, physicians public health officials etc. before it "Understanding" can be provided to parents.

c. Research priorities.
As above, the priority is to recognize the existing scientific evidence for an abnormal metabolic state in autism. Further clinical and basic science research will help to increase the impact, but the already existing evidence is clear. However, the health community finds it difficult to accept evidence of environmental effects that might be causing autism. Specific RFAs which focus on replication of the metabolic abnormalities and gauging their occurrence in phenotypic subgroups would be useful. Programs to promote understanding of the underlying metabolic relationships among medical professionals would be helpful.

Respondent 0140

c. Research priorities.
-To construct research groups on autoimmune conditions with the focus in the findings reported in ASD subgroups- based on immunologists, virologists, specialists in autoimmune conditions and researchers on medical conditions such as diabetes, lupus, arthritis, etc. -To analyze the context of the role of accumulation of environmental insults ( in the form of introduction of food, infections- especially in repetition. treatment with antibiotics and the role of the gut flora in the management of xenobiotics exposures- in combination in time. Impact of vaccines given in the oxidative stress and inflammatory reactions beyond efficiency, especially near antibiotics treatments or other medical conditions common in childhood ( allergies, GI issues) -To construct research groups on the role of the combination of the treatment of concomitant medical problems with the use of proper educative methods to enhance learning and communication issues in ASD

Respondent 0141

a. Gaps and underrepresented research areas.
If you ask 50 Autistic people a question about their behavior, such as, why do you throw tantrums?, you might get 50 different answers. Some may not be able to answer, and for others you may not be able to understand their answer. However, even if you only got 25 responses you could use, that's 25 possible areas of research! Probably, many of the answers can be grouped into categories like, social frustration, anger, sensory issues, or lack of other forms of expression. If you find that the two most common reasons for throwing a tantrum are, for example, anger and sensory issues, then you can focus research on how to best treat anger and sensory issues in Autistic people. Of course, the alternative would be to exclude Autistic people from the process, see only the tantrum (not the reasons for it), and try to control it through aversives, restraints, behavioral modification, medication, seclusion, etc. But that doesn't get to the core of the problem, and usually creates more.

Respondent 0146

a. Gaps and underrepresented research areas.
Recommend study of the role of affect on learning and development. Also recommend further study into the brain's plasticity and adaptability, regardless of challenges or diagnosis.

b. New opportunities.
Recommend focusing on sensory processing, registering, modulating and adapting to input, and diagnosis. Is there a relationship between sensory-motor challenges observed in early infancy and later diagnosis? Do family relationships affect diagnostic and treatment outcomes?

c. Research priorities.
Recommend that priority be given to the study of individual differences, both for the child and family, rather than on forensic study/research.

Respondent 0148

a. Gaps and underrepresented research areas.
See answers to #1 above

b. New opportunities.
Same

c. Research priorities.
Same

Respondent 0151

a. Gaps and underrepresented research areas.
Additional focus should be placed on the possible causes of ASD. Consultation with Defeat Autism Now doctors / scientists reveals many potential and even likely links between autism and environmental causes (including vaccination schedule, mercury (vaccinations, fish, and mother's amalgam fillings), pesticides,).

b. New opportunities.
Don't close the door on unfavorable possibilities. If evidence indicates a likely link, then exhaust the research before ruling it out.

c. Research priorities.
Recommend international coordination of studies such that the US budget does not duplicate studies already being performed in other countries (so long as the study is being performed in a manner that will stand up to scrutiny). Additionally, much information can be attained with regards to potential environmental causes based on the region. In areas that do not have autism in the high numbers that the US has, why not / what's different?

Respondent 0153

a. Gaps and underrepresented research areas.
Do Ultrasounds treatments contribute to the possibility of Autism?

b. New opportunities.
Extensive prenatal medical records exist for autistic and non-autismtic children showing durations and intensity of ultrasound events.

c. Research priorities.
More highly prioritize ultrasounds in research.

Respondent 0154

a. Gaps and underrepresented research areas.
Parents wouldn't be dealing with this crisis and epidemic if it wasn't for the government's ignorance to examine vaccines and the overuse of them coupled with antibiotic overuse.

b. New opportunities.
Understand that autism is a treatable disorder....it is a gut disorder that affects the brain not a brain disorder solely.

c. Research priorities.
Seek out a DAN! Certified physician (Defeat Autism Now!)

Respondent 0157

a. Gaps and underrepresented research areas.
Information needs to be issued in a simple, understandable (i.e. not a lot of medical jargon) format listing factual information based upon the latest research and studies. Basic information on brain function and development and how autism impacts this process would also be useful. It would also be helpful to have information regarding efficacy research for each of the interventions.

Respondent 0168

a. Gaps and underrepresented research areas.
Practical clinical guidelines that can be implemented on a large-scale basis.

b. New opportunities.
There needs to be a focus on rapidly developing screening panels for genetic, immunologic, metabolic, and other biological issues which are either core to autism or common associated features. The goal should be to identify the range of issues and then have treatments available to address the range of core and associated conditions as rapidly as possible.

c. Research priorities.
I am not sure what all the focus on brain and tissue donation will do to help people with autism now. This seems like a lower priority than identifying biomarkers or other tangible tests to identify areas which need treatment such as metabolic or immune issues.

Respondent 0173

c. Research priorities.
Again, parents often turn to teachers and pediatricians who seem to be at the bottom of the list of stakeholders. Teachers and pediatricians need to be kept up-to-date and informed of scientifically-researched findings so that we can assist families.

Respondent 0176

a. Gaps and underrepresented research areas.
Honestly explain that while little is still known about the origin of autism, its cause(s) and cure(s), there are many types of interventions, both biological and behavioral, that assist children with ASD in making significant developmental gain. Explain that each child with ASD is an individual and as such, will require an individual approach to developing the biological and behavioral supports necessary for advancement. Explain that help is available through Early Intervention (the federally funded birth-to-three program available in all states). Explain how Early Intervention works. Explain the transition from Early Intervention to school-based therapies. Encourage parents to learn as much as they can about ASD while also learning all they can about their children as this will assist them in making suggestions to professionals and educators to help their children succeed in environments away from home.

b. New opportunities.
Perhaps the greatest need for advancing knowledge and research is understanding that parents of children with suspected or diagnosed ASD may be terrified at the prospect of facing a lifelong, invisible developmental disability and that this fear may be pervasive and/or exacerbated by the extent to which a child is able to make measurable progress ESPECIALLY IN THE AREAS MOST IMPORTANT TO THE PARENT (such as reducing or eliminating meltdowns). Parents need to know that their child's ASD will create around him a care team (parents, educators, therapists). Educators, administrators, and therapeutic professionals need to know that their full participation as part of the care team is critical and that by assisting parents in biological interventions such as dietary changes and behavioral supports such as visual schedules, children may be able to make critical developmental advances that may be otherwise unattainable. Group coordination, support, and participation is a necessity.

c. Research priorities.
Research the effectiveness of the Early Intervention Program versus school-based interventions. Determine whether school is the appropriate setting for children with ASD to receive therapies such as occupational and physical therapy, or whether children are better served by having school-aged therapy at school (appropriate for creating success in the school setting) and home therapy and/or after-school therapy (daily) for overall skill-building in critical areas affected by ASD, most notably communication and perspective-taking. Since the school setting is organized for neuro-typical children who do not have issues of social blindness, determine the extent to which children with ASD naturally lose opportunities to gain understanding of social skills and practice such skills as they age. While their peers seamlessly intuit the social fabric of situations, children with ASD cannot. Determine the extent to which the school-based curriculum excludes their social advances. Remedy this.

Respondent 0181

a. Gaps and underrepresented research areas.
II. How Can I Understand What is Happening? We support the investigation of a biological basis resulting in the development of autism. We also support the research into high risk siblings. Recent research indicates that some children, particularly those with mitochondrial myopathy, may be more susceptible to developing autism. Research indicates that in addition to genetics, environmental factors also influence with development of autism so we support this multifactorial analysis. We are also concerned that families may be unaware of common comorbid conditions such as Fragile X and epilepsy which have serious health consequences and feel strongly that parents need to be informed of these common comorbid conditions.

Respondent 0187

a. Gaps and underrepresented research areas.
Research topics that are missing: Please include more nonverbal subjects in your research. No research has been done on this group. This is a critical area that is missing from the autism research 'road map'. See also my comments in Section I.

b. New opportunities.
Of critical importance: Research on nonverbal ASD individuals for measurable cognition, and also of early signs in child development so that nonverbal ASDs can receive earlier interventions.

c. Research priorities.
Focus on nonverbal autistics. This group has not been studied. Many assumptions are made, based on outward behaviors which may or may not be accurate. For example, disengagement visually may not be an indication that the subject is anti-social. Not initiating or performing on written tests, or not being able to speak may not be an indication that the subject has low-functioning intelligence. Some interesting studies have been done on patients with head injuries who are unable to communicate, that indicate brain activity and intelligence are still functioning. Individuals with cerebral palsy exhibit physical behaviors that are often associated with a lack of cognitive development and yet, many are of average or above-average intelligence. It has been the work of researchers, with these other nonverbal groups, that has brought about discoveries about their capabilities. ASD individuals need the same research consideration.

Respondent 0194

a. Gaps and underrepresented research areas.
There are three similar aims relating to the collection of biomaterials, but no aims specifically prioritizing research with these samples. We suggest priorities 2.1/2.4/2.6 be collapsed into a single priority. Additionally, we strongly encourage adding an additional priority endorsing the study of these biomaterials to identify the basic disease mechanisms that can be targeted for autism therapeutics. For example, neuropathological characterizations of tissue defects, clinical analyses guided toward biomarker identification, and study of postmortem neuroprogenitor cells are three critically-neglected areas of research, all of which can directly reveal the cellular and molecular basis of autism. Simultaneous study of genetic, stem cell (postmortem or iPSC), and brain tissue material would greatly accelerate the rate of pharmaceutical research by providing a platform for candidate gene research followed by in-vitro (tissue) and in-vivo (stem cell assay) verifications.

b. New opportunities.
Recent advances regarding generation of patient-specific induced pluripotential stem cells (iPSC) have made biobanking of patient fibroblasts (or other sources of iPSC) even more of a priority. However, these cell lines, and all biomaterials in general, will only be meaningful in the context of extensive clinical and phenotypic characterization of the donors. Therefore, we urge coordination at the earliest planning stages with the many large-scale patient phenotyping efforts currently being launched (including the National Children's Study, the many ACE grants, etc). Inclusion of stem cell biologists to the planning committees, and upfront discussion of patient consent, will greatly hasten collection of the biomaterials necessary for achieving autism iPSC. The gastrointestinal system should be inserted into Priority 2.2, especially if study of the microbiome is a stated priority (listed in the strategic plan text accompanying this question).

c. Research priorities.
An understudied population of ASD is low-functioning individuals, especially nonverbal individuals with ASD. Because of their routine exclusion from research studies, almost the entire body of what we know about autism is from higher-functioning individuals. Therefore, we strongly suggest this priority be extended to target low-functioning individuals and other understudied populations or, similar to females with ASD, their specific needs will continue to go unrecognized. One fundamental missing item in Section II is a prioritization of model systems for autism. As the cellular and molecular underpinnings of autism are elucidated and targets identified, model systems will be required to manipulate the target, develop screening assays, and perform the necessary preclinical studies for therapeutic development. Animal and cellular model systems should be prioritized, especially those that can be used in high-throughput screening.

Respondent 0200

a. Gaps and underrepresented research areas.
Where is the research on non verbal children and adults with ASD? What is being studied as to why they can make sounds but not words? What is being done to help?

Respondent 0202

a. Gaps and underrepresented research areas.
HELP! Research on "communication and movement disorders" are unrepresented and often times pushed under the asd umbrella, parents are left with no intervention, and no experts that know anything

c. Research priorities.
Please help this population

Respondent 0203

a. Gaps and underrepresented research areas.
Focus on sensory issues - what in the environment is causing distress?

Respondent 0210

a. Gaps and underrepresented research areas.
Ensure that a comprehensive research agenda includes the biological, cognitive, and socio-emotion impact of autism spectrum disorders on adults across later years in the lifespan (early, middle, and later adulthood) as a critical component of understanding developmental needs of this population and how environment and access to resources may or may not have significant impact, including a research project specifically targeted at the adult population. Research should include studying the impact of well-rounded, qualified multidisciplinary teams tasked with assessing the areas of the suspected disability and translating findings into programmatic designs. This multidisciplinary effort likely involves a team of special educators, general educators, psychologists, speech pathologists, occupational and physical therapists, and physicians, which can be challenging for schools lacking available experts.

b. New opportunities.
Advance the literature pertaining to making the appropriate selection of instruments given the triad of the disability and using key assessment instruments to make both clinical and educational decisions. It is critical that we advance information concerning the incorporation of assessment results effectively into an individualized program for individuals on the spectrum.

c. Research priorities.
It is critical that we advance information concerning the incorporation of assessment results effectively into an individualized program needs if we are to truly meet the needs of individuals on the spectrum. Additionally, we need to explore the efficacy of individual service plans for adults on the spectrum that have access to this type of individualized program after 22 years of age. Further, the assessment instruments and eligibility criteria used to determine eligibility for social service programs for adults on the spectrum warrants examination.

Respondent 0213

a. Gaps and underrepresented research areas.
Nonverbal and low-communicating people with autism should be included in the Strategic Plan for Autism Spectrum Disorder Research. There are few, if any, interventions that work for these individuals and currently there is no research to develop them. We need research to develop successful interventions for this group. In spite of lack of communication being their most severe deficit, there is currently no research to develop communication interventions. We need this kind of research now. Almost nothing is known about nonverbal and low-communicating individuals, yet there is no research focused specifically on better understanding this group. In spite of tremendous advances in autism research in the past decade, this group has not benefited from the progress that has been made and little has changed for them.

b. New opportunities.
As the population of individuals who are nonverbal/low-functioning is increasing, there will be more subjects and applications of this research.

c. Research priorities.
Evaluation and innovation of communication instruction for nonverbal, low-functioning individuals must be included in research funding.

Respondent 0228

a. Gaps and underrepresented research areas.
I am very concerned that very little, if any, research is being done to help nonverbal and low-communicating people on the autism spectrum. This segment of the population needs our help to become contributing members of society. Without the proper tools to communicate, they will always be dependent, their lives will be severely impacted and the cost to society enormous. I find it terribly short-sited to overlook them in the research and I am very disheartened to find out that this is the case.

b. New opportunities.
Start including nonverbal & low-functioning ASD children & adults in your research right away.

Respondent 0236

b. New opportunities.
It would be helpful to know where, in what kind of setting (private, public) a diagnosis can be most quickly gotten with the most amount of follow up.

Respondent 0241

a. Gaps and underrepresented research areas.
Until now there has not been a unified effort to advocate for those who are nonverbal or low-communicating. So now is a great time to begin your efforts to include this group. Sadly, in spite of the huge gains that have been made in the past decade, our kids have not benefited and there are still almost no interventions that work for our kids and no research to better understand the nonverbal and low-communicating population, their cognitive abilities, genetic characteristics, educational needs or to develop successful interventions. Perhaps most importantly this population needs communication interventions and at present there is no research being done in this area.

b. New opportunities.
When not interfered with by outside influences, everything nature does is done with perfection.

c. Research priorities.
Simply to begin to include nonverbal low-communicating individuals in your research. How terrible a nightmare for those of us who struggle each and every day to draw the smallest bit of information, communication from nonverbal children. The turmoil one feels inside is most heartbreaking. Imagine not being able to know if the tears are reflective of pain or of a need and you simply have to use all your personal knowledge of your child's behaviors to draw a conclusion on what needs to be done. Is she hurt, hungry, angry, bored, tired. On and on it goes. Please help us help them...

Respondent 0244

a. Gaps and underrepresented research areas.
No additional comments...

b. New opportunities.
No additional comments...

c. Research priorities.
Suggest that Bullet # 3 (Human and animal studies that examine immune, infectious and environmental factors in the occurrence of ASD) be placed last in this list since a lot of people have beliefs that animal studies should not be considered as evidenced based...

Respondent 0245

a. Gaps and underrepresented research areas.
Sensory Integration and Visual differences and the role these difficulties have on social, functional and academic behavior and communication.

b. New opportunities.
Just like Helen Keller, society makes assumptions that if he cannot speak he must be retarded. What kind of research is your institute doing that would allow you to leave out nonverbal autistic children?

c. Research priorities.
Many nonverbal autistic children have written books and started speaking when they were teenagers or adults. Do you all know this? If not Google this topic so you don't make the same mistake again and start respecting the fact that Autism is a Spectrum: You can't leave out part of the spectrum.

Respondent 0246

b. New opportunities.
Test - test - test Do a study of individuals with autism Do a study of vaccinated v. unvaccinated populations Talk with parents who have treated their children successfully.

c. Research priorities.
Heavy metal toxicity auditory processing Sensory issues These issues are HUGE

Respondent 0251

a. Gaps and underrepresented research areas.
verbal communication across the ASD spectrum

Respondent 0257

a. Gaps and underrepresented research areas.
Medical care to include traditional and alternative medicine and nutrition -- level of support to vary with patient profile - capability, need and commitment to health. Good to see reduced dependence on antibiotics, access to unhealthy foods.

b. New opportunities.
Pediatricians, alternative health care providers, nutritionists, etc. QU: Vitamin D. Recent studies indicate population at large is deficient. Vit D has important role in immunity and what if any is its role in autism? Should we be measuring this -- in children, adults, etc,... how to remedy and why is this happening??

c. Research priorities.
1. GI. Gluten sensitivity has been linked to autism. Many (save the Mayo??) believe the effect is under estimated -- better tests for gluten sensitivity are needed, etc. Gluten sensitivity leads to leaky gut... leads to deficiencies which possibly in some cases have neurological features among many other things. THE AREA IS SO UNDERSTUDIED. (Dr. Hajivassiliou is the gluten-neuro expert in England; K Reichelt did gut/opiate studies in Norway; P. Levitt is working on the risk of a disruptive signaling of the MET gene, Gi + autism, in US, etc.) 2. Autoimmunity. Familial patterns; its effect, how to defer and/or manage. 3. Nutrition. Malnutrition, often asymptomatic, is rampant and very unhealthy. How to pick up, remedy and why is this happening?

Respondent 0263

a. Gaps and underrepresented research areas.
Please update me directly and I would like to be advised of the outcome of my submission. Also update organizations like Autism Speaks.

Respondent 0268

a. Gaps and underrepresented research areas.
No one has studied Facilitated communication and what I refer to as partnered typing and attempted to answer the difficult questions. to do so one must ask what is actually occurring with the individuals involved. Without accepting a type of "telepathy" or "joining at a subconscious level", it doesn't make sense. With new brain imaging technology, I would like researchers first to acknowledge that it exists. I would then like to see myself or some other strong sender, hooked up to brain imaging equipment as the exchange is occurring. What areas if any in the brain are being activated? Am I somehow serving as a grounding agent?

b. New opportunities.
When I am involved in "joining", I sense we are writing in tandem. It feels like a meditative dance where we serve as each other's intermediaries. Coming from this higher vibration, where all information is instantaneous and not dependent on sensory channels, appears to be their reality. Forming a partnership may help them subdue their own chaotic flow and lower their vibrations to a level that balances their knowing to a point where they can express a stream of consciousness. I speculate that I serve as a bridge to help them understand our communication system and they serve as my bridge for increased understanding of mystical states. But, I believe, we both have benefited from the entanglement. I speculate that it is possible that our two energies formed together could be forming a third distinct vibration that is a combination of the two, similar to binaural beats or a chemical change.

c. Research priorities.
I would start with mental prompts. When I am sending mental prompts; many of my students transcribe information without being When I am sending mental prompts; many of my students transcribe information without being able to demonstrate typical concrete awareness. Since, I am able to anticipate what they are going to type, I am fully aware that information being transcribed can be influenced by my personal bias. If I am confused and don't know the answer, they are too. I hope that remaining open to ever-evolving changes in perspective answering the difficulty questions, eliminating what doesn't work will eventually lead us to something profound and valid to explore. I speculate that our understanding of vibration connections, with the help of these remarkable people is about to evolve. It is mind-boggling stuff that demands further explanation.

Respondent 0269

a. Gaps and underrepresented research areas.
not enough research into why some of these kids are nonverbal

b. New opportunities.
research into why some of the kids are nonverbal is a wide open field.......do it now

c. Research priorities.
we had better find out why some of the kids can understand speech but aren't able to produce it

Respondent 0270

a. Gaps and underrepresented research areas.
Please consider allocating funds for research for people with severe autism who do are nonverbal. This subset is the most vulnerable group and in addition requires the most care. Please be equitable in your quest to find a cure for this dreaded affliction.

Respondent 0276

b. New opportunities.
Most definitely the need is in the area of research on relatively or completely nonverbal individuals affected by autism. As the parent of a young adult, I have seen little research that applies to my son.

Respondent 0281

a. Gaps and underrepresented research areas.
1)What role does dyspraxia play in autism. 2)What available therapies impact or remedy the challenges of Dyspraxia the most...Traditional O.T., Masgutova Method, Feldenkrais, craniosacral...etc.

b. New opportunities.
While ABA has been the traditional approach for interventions. It can only do such...It is time to look beyond Autism as a behavioral/cognitive disability. The children who are nonverbal or very limited verbal abilities are deeply affected by Dyspraxia. We need to understand how Dyspraxia manifests itself...beyond the basic explanation "its motor planning". In fact, Dyspaxia is extremely complex...and there are many newer therapies that help with this. Masgutova Method, Feldenkrais, Neurologic Music Therapy, O.T. etc. We need to look beyond ABA which leaves children with ASD therapist dependent, low self esteem, low in self confidence....and still nonverbal. It is time to make technology a mandatory component for those who remain silent.

c. Research priorities.
It is time to focus on the neuro-motor aspects of autism and how it plays a role in children who remain nonverbal.

Respondent 0294

a. Gaps and underrepresented research areas.
Verbal people appear to be easier to work with.

b. New opportunities.
The field is wide open! 50% of autistic people don't speak or communicate.

c. Research priorities.
Start by looking at receptive language in the nonverbal.

Respondent 0297

a. Gaps and underrepresented research areas.
Until now there has not been a unified effort to advocate for those who are nonverbal or low-communicating. So now is a great time to begin our efforts to advocate for this group. Sadly, in spite of the huge gains that have been made in the past decade, our kids have not been benefited and there are still almost no interventions that work for our kids and no research to better understand the nonverbal and low-communicating population, their cognitive abilities, genetic characteristics, educational needs or to develop successful interventions. Perhaps most importantly this population needs communication interventions and at present there is no research being done in this area.

b. New opportunities.
Until now there has not been a unified effort to advocate for those who are nonverbal or low-communicating. So now is a great time to begin our efforts to advocate for this group. Sadly, in spite of the huge gains that have been made in the past decade, our kids have not been benefited and there are still almost no interventions that work for our kids and no research to better understand the nonverbal and low-communicating population, their cognitive abilities, genetic characteristics, educational needs or to develop successful interventions. Perhaps most importantly this population needs communication interventions and at present there is no research being done in this area.

c. Research priorities.
Until now there has not been a unified effort to advocate for those who are nonverbal or low-communicating. So now is a great time to begin our efforts to advocate for this group. Sadly, in spite of the huge gains that have been made in the past decade, our kids have not been benefited and there are still almost no interventions that work for our kids and no research to better understand the nonverbal and low-communicating population, their cognitive abilities, genetic characteristics, educational needs or to develop successful interventions. Perhaps most importantly this population needs communication interventions and at present there is no research being done in this area.

Respondent 0306

a. Gaps and underrepresented research areas.
publicize to the world that these kids have a medical condition. Autism is a brain injury, not a developmental delay. Address the cause of these injuries - they're environmental - regardless of a genetic predisposition. If you don't find the trigger factor, it doesn't matter if a child is predisposed.

c. Research priorities.
take care of our kids. not the pharmaceutical company and not the doc. take care of the kids.

Respondent 0307

a. Gaps and underrepresented research areas.
I already understand what is happening. Tom Insel doesn't want to find out the truth that his brother's vaccine was that start of this epidemic. Tom, how about dealing with the conflict of interest you have by STEPPING DOWN and getting out of the way of legitimate research.

b. New opportunities.
Okay, this is really repetitive. LET'S DO MORE LEGITIMATE RESEARCH ON VACCINE SAFETY.

c. Research priorities.
You get nearly a billion dollars in funding. Perhaps putting at least half your budget to researching vaccine safety and the effects of vaccines on autism. You have already spent BILLIONS on genetic research and you have found NO LINK. Time to get your heads out of the sand and look at VACCINES!!

Respondent 0309

a. Gaps and underrepresented research areas.
VACCINATED VS UNVACCINATED studies. There are plenty of children who are un or under vaccinated. Until this is done, there will never be trust in the vaccination program.

b. New opportunities.
The IACC does not have enough parents and Autism Groups on the committee as stakeholders. The committee is made up mostly of government representatives. How can we see this process as transparent and really trying to help our community when there are not enough stakeholders on the committee that could out-vote the government agencies?

c. Research priorities.
Come up with a list of the top 20 or 30 priorities and ASK the Autism Community! Do the research that WE WANT done to help our kids!!!

Respondent 0310

a. Gaps and underrepresented research areas.
I understand there are many conflicts of interest among those in power at the IACC; I suggest that Dr. Insel and Joyce Chung resign. Otherwise the information eventually disseminated by the IACC will not be reliable by those who need to understand their child's diagnosis.

b. New opportunities.
I understand there are many conflicts of interest among those in power at the IACC; I suggest that Dr. Insel and Joyce Chung resign. Otherwise the information eventually disseminated by the IACC will not be reliable by those who need to understand their child's diagnosis.

c. Research priorities.
I understand there are many conflicts of interest among those in power at the IACC; I suggest that Dr. Insel and Joyce Chung resign. Otherwise the information eventually disseminated by the IACC will not be reliable by those who need to understand their child's diagnosis.

Respondent 0312

a. Gaps and underrepresented research areas.
Where is an expert in treating GI problem sin ASD kids??? For many children that is one of the first signs something is really wrong and frequently indicates the possibly of other health problems- especially immune dysfunction. Why so many clinicians and researchers who study Fragile X, Angelman's or Prader- Willi? They account for less than 5% of ASD children and have a totally different disorder. Why no focus on problems affecting at least 40% of ASD kids like regression and Gi disease? Where is a DAN! doctor? Where is Jane Johnson? Where is Peter Bell?

b. New opportunities.
Toxicology Why is my child sick all the time? Why do his blood tests indicate extremely high levels of AL? Why has IACC refused to study adverse vaccine reactions and regression? For many children these are one of the earliest clues to biological problems and regressive autism. How have these adjuvants affected his central nervous system?

c. Research priorities.
Study regression Study adverse vaccine reactions Study DIETARY interventions- which can be so simple and immediately helpful! Rather than endless studies on Fragile X which help no children- why not fund a GF/CF intervention study among regressive kids w/ GI disease?

Respondent 0318

a. Gaps and underrepresented research areas.
I believe the strengths and abilities of persons with ASD are well documented in the static realm, but I feel like explicit research into weaknesses in the dynamic areas are underrepresented. Dynamic abilities are the abilities needed for people to function in daily life and when they are lacking these abilities this has a direct impact on quality of life. RDI directly addresses deficits in these dynamic areas.

b. New opportunities.
Your aspirational goal for this section states that you'd like to discover how ASD affects development which will lead to targeted and personalized interventions. In researching the RDI program you will see that the protocol is organized into stages that correspond to typical development and each stage contains objectives that have been broken down into pieces by the process of reverse engineering. This reverse engineering process was done by looking at how we learn dynamic thinking within typical development and gradually following it back to its simplest prototypes in order to be able to make the typically intuitive process of typical development into a mindful process for whom typical development did not occur due to neurological impairment. Using these objectives it is possible to determine where any person with ASD has deviated from typical development track and the process by which to go about reestablishing typical development.

c. Research priorities.
Under long term research objectives I feel your first goal of comparing how biological, clinical, and developmental profiles of children with ASD change over time as compared with typically developing people is unnecessary as without proper interventions you are basically tracking how people with ASD brains are become more static as typically developing people's brains are becoming more dynamic. A bigger priority would be to focus on researching the RDI program and how it prohibits that from occurring

Respondent 0321

a. Gaps and underrepresented research areas.
Unfortunately, I seriously doubt I will ever "understand" why our public health agencies promote the policies they do...such as..mass vaccination of our armed forces prior to deployment that many feel "caused" Gulf War Syndrome.

b. New opportunities.
Urgent effort to undertake "precautionary" measures against "rushing" a new, untested... "swine flu" vaccine.... that will be given to millions of people to prevent a "pandemic" that has yet to occur.

Respondent 0324

c. Research priorities.
While finding the causes and potential medical interventions/prevention should receive high priority for funding of research, it seems that the amounts targeted are disproportionate to funding suggested for targeting research into intervention and support for those already living with ASD. My recommendation is to increase the amount targeted at finding effective interventions.

Respondent 0325

a. Gaps and underrepresented research areas.
See previous

b. New opportunities.
See previous

c. Research priorities.
See previous

Respondent 0328

a. Gaps and underrepresented research areas.
Studies of vaccines as a causal agent in autism. Studies of vaccinated versus unvaccinated populations. Gastrointestinal scoping of ASD children, in lieu of O'Leary lab and others' biopsy findings of vaccine-strain measles in lesions lining the GI mucosa. Titers tests of children with immune dysfunction.

b. New opportunities.
Studies of vaccines as a causal agent in autism. Studies of vaccinated versus unvaccinated populations. Gastrointestinal scoping of ASD children, in lieu of O'Leary lab and others' biopsy findings of vaccine-strain measles in lesions lining the GI mucosa. Titers tests of children with immune dysfunction.

c. Research priorities.
Studies of vaccines as a causal agent in autism. Studies of vaccinated versus unvaccinated populations. Gastrointestinal scoping of ASD children, in lieu of O'Leary lab and others' biopsy findings of vaccine-strain measles in lesions lining the GI mucosa. Titers tests of children with immune dysfunction.

Respondent 0329

a. Gaps and underrepresented research areas.
same

Respondent 0334

a. Gaps and underrepresented research areas.
Help us!

Respondent 0335

a. Gaps and underrepresented research areas.
parental support is a key feature. A recent study showed that many or most parents never come to terms with their child's autism. This leads to unhappy parents which, in turn, must be detrimental to the children.

Respondent 0336

a. Gaps and underrepresented research areas.
As Dr. Bernadine Healy stated on CBS News in 2008, we have not looked at the children who got sick shortly after being vaccinated. Epidemiological studies with ties to the drug industry will never end the controversy.

Respondent 0337

a. Gaps and underrepresented research areas.
Identify ASD categories based on endophenotypes and not solely on behaviors - Research effectiveness of instruction for parents

Respondent 0340

c. Research priorities.
The funding for this is appropriate.

Respondent 0345

a. Gaps and underrepresented research areas.
again, need for vaccinated/unvaccinated study.

c. Research priorities.
listed more to parents, researchers involved in biomedical aspects of autism

Respondent 0353

c. Research priorities.
Prioritizing research in terms of a medical, not psychiatric or behavioral, model, is key to truly understanding autism. Brain variations can exist without disability, but autism includes immune and gastrointestinal components which, when left untreated, lead to permanent disability rather than the personality quirks and social differences of high functioning persons who are neurologically on the spectrum without having suffered environmental assaults in infancy or early childhood. Research into the medical aspects of autism needs to be prioritized. Continuing to focus on the behavioral aspects when behaviors are merely manifestations of the underlying medical conditions in children who are unable to communicate medical distress in a recognizable manner is a waste of resources. We know their brains are different - but why are they developmentally disabled, instead of just "different," like in generations past?

Respondent 0360

a. Gaps and underrepresented research areas.
A large scale independent study of vaccinated vs. unvaccinated children could put to rest (one way or the other) the possible role of vaccines in the current epidemic of neurological problems in children.

c. Research priorities.
Fund the vaccinated vs. unvaccinated study immediately.

Respondent 0366

a. Gaps and underrepresented research areas.
I don't understand why so many of the people involved in autism research are related to people or are the people who have developed vaccines. I can see why so many people are afraid of the vaccines. The people who make them are easily seemed to be in some sort of monarchial or dictorial society. This type of club has not been well received by history... the research should only be driven by people without conflicts of interest and then you will see herd immunity again.

b. New opportunities.
The people in charge should have no political, corporate, or familial relationships to the vaccines developers and sellers.

c. Research priorities.
1. Rid the research community of all relatives, friends, and political connections of vaccine makers and sellers. 2. Make all autism researchers file a document stating exactly who they are related to, and what businesses they have been affiliated with and where all of their income comes from. This should be public information

Respondent 0367

a. Gaps and underrepresented research areas.
TRANSPARENCY, TRANSPARENCY, TRANSPARENCY.

b. New opportunities.
Look at the recovered children and how they were recovered. Duh.

c. Research priorities.
Stop looking at the gene pool and start looking at the recovered children. How did they recover? Why did they have an overgrowth of yeast? Why did they have metal toxicity? Why do they have such horrible bowel diseases? These children may have come into the world with a less than stellar immune system. All children were not created alike and a "one size fits all" health plan for all children obviously doesn't work.

Respondent 0368

a. Gaps and underrepresented research areas.
There is very little research done on adolescents or adults with autism.

b. New opportunities.
We need to investigate the physiology of adolescents and young adults with autism to determine the role that hormones may play in exacerbating the symptoms of autism. I say this because many young adults regress when they hit puberty; some become violent; many need to be put into residential placements. It's important to know what is happening in their bodies.

c. Research priorities.
Research on adolescents and adults with autism should be one of the priorities. So far, most of the research has focused on children. As the 1 in 150 children with autism become adults, it would be useful to know how autism will affect them through adolescence and into adulthood.

Respondent 0376

a. Gaps and underrepresented research areas.
Reinstate the vaccinated /unvaccinated study Replace Tom Insel due to his CONFLICTS OF INTEREST

Respondent 0379

a. Gaps and underrepresented research areas.
The vaccinated/unvaccinated study.

b. New opportunities.
The IACC Committee brought in parents and community interests and these recommendations, that were removed in January 2009, should be returned to the agenda.

c. Research priorities.
The vaccinated/unvaccinated study.

Respondent 0385

c. Research priorities.
While it's important to understand the cause of ASDs, an equal amount of time, money and resources need to be put towards helping the kids who already have it to have a happy and productive life.

Respondent 0388

a. Gaps and underrepresented research areas.
Support-Support-Education- and support!!!! Where is the support? Where is the "is this normal for my child?" I am one of those moms who read the first five years of development, there is no guideline for what to expect. There is only frustration at missed opportunity and odd jealousy when you encounter a parent with a now verbal ASD child. There is a tremendous feeling of missing out on some vital clue that would open the door to communication.

b. New opportunities.
new legislation and emphasis in insurance and education and research projects which provide access to services.

c. Research priorities.
Help those who are given the news to accept what has happened. Stop focusing on finding the reason and start focusing on "What Now" who knows the answer for why may come from the solution to what to do about it now. Stop writing off this generation as defectives in the pursuit to find the cause. Do we need to know the specific cause of cancer to find effective therapy, not really.

Respondent 0390

a. Gaps and underrepresented research areas.
There is too little focus on understanding individual differences in children with confirmed/suspected autism. There needs to be more attention to understanding the underlying profile of each child, including sensory and processing differences. Especially with the very youngest children, we need more information about what may be derailing their capacity to initiate and respond to the interactive exchanges that are built into the dialogue between typically developing children and their parents.

b. New opportunities.
New scientific techniques including neuro imaging can help us look in new ways at the developing nervous system, and begin to understand better the developmental course of disorders in relating and communicating. There needs to be particular emphasis on learning more about the visual system and how differences in processing of visual input can support or derail early interactive exchanges. We need to build on our understanding of typical exchanges between infants and their parents, and help find ways to modify the experiences of children having trouble with these early exchanges.

c. Research priorities.
We need to expand research on the unfolding interactions of infants and toddlers who are determined to be at risk for developing disorders of relating and communicating, and of those identified with early difficulties in this area. We need to learn more about the subtypes of these children, both in their early profiles and their developmental course.

Respondent 0391

a. Gaps and underrepresented research areas.
As to autism rates, unvaccinated cohort must be compared to vaccinated cohort

c. Research priorities.
As to autism and autism-related children, unvaccinated cohort must be compared to vaccinated cohort.

Respondent 0393

a. Gaps and underrepresented research areas.
The nonverbal subgroup represents about 15-20% of the autism spectrum and yet there is no research focused specifically on them.

c. Research priorities.
Nonverbal and low-communicating people with autism should be included in the Strategic Plan for Autism Spectrum Disorder Research. There are few, if any, interventions that work for these individuals and currently there is no research to develop them. We need research to develop successful interventions for this group.

Respondent 0396

a. Gaps and underrepresented research areas.
Relationship-based therapies. I am concerned that the voluminous ABA literature is being judged as valid and more important than is based on numbers alone. Relationship-based data, while it takes longer to generate, is quite informative. It seems to me that there is a frenzy around ABA - that folks want it to hold more promise than it really does. Everyone seems to appeal to the amount of extant literature as making ABA valid.... when the relationship-based literature has much more content within it.

b. New opportunities.
1- Brain changes with development with and without intervention, and with different therapeutic approaches. 2- Adult outcomes given different developmental challenges in childhood. 3-Early identification 4- Different developmental profiles and their developmental trajectories 5-The value of understanding developmental, social and emotional, sensorimotor profiles, and family functioning profiles for understanding developmental outcomes. 6-The importance of establishing a relationship with the child and family to support and predict outcome.

c. Research priorities.
Do not let this field continue to be dominated by top-down, skill-based, and compliance-based approaches to autism. Children and more than a set of skills and many families are not establishing good emotional ties to their developmentally- fragile youngsters. Skill development is NOT what this area needs to attain a deeper understanding of the problem.

Respondent 0397

a. Gaps and underrepresented research areas.
Longitudinal research over time is much better than snapshots in time. I do not see much long term research proposed or done.

b. New opportunities.
I am not a medical person. I do not need what causes ASD. I need how to avoid it. I know that proper weight and exercise reduces heart attacks, but I do not know what I can do to avoid ASD in the newborns.

Respondent 0403

a. Gaps and underrepresented research areas.
None

b. New opportunities.
None

c. Research priorities.
None

Respondent 0406

a. Gaps and underrepresented research areas.
Study into possible genetic susceptibility in children should be looked at. The vaccine schedule should be adjusted for that subset of children. Insel should resign

b. New opportunities.
Screening for MT dysfunction, screening for genetic susceptibility. Screening for possible allergy. Clinical studies on vaccine damaged children

c. Research priorities.
Pre-screening a possible genetic susceptibility could prevent future regression.

Respondent 0408

a. Gaps and underrepresented research areas.
This question is intrinsically tied to causation and treatment and until you figure out those two questions, there is no point in answering "what is happening". Parents are left to do all the research themselves and troll the internet looking for answers. Parents will seek out support groups that fit their needs.

c. Research priorities.
This should be at the absolute bottom of the priority list.

Respondent 0409

a. Gaps and underrepresented research areas.
Nonverbal and low-communicating individuals with autism need to be known as, very often, intelligent beings facing a long battle. More research needs to be done about how bright these individuals really are when given the right interventions and environments.

b. New opportunities.
Nonverbal and low-communicating individuals are not less of an individual because they cannot use verbal language. More opportunities should be available to exhibit the potential of these individuals. There are other means of communication such as gestural, written, pictorial, speech generating devices, etc. Additionally, more research needs to be done on curriculum and state standards regarding how to teach a nonverbal individual how to read and write.

c. Research priorities.
Of highest priority should be research to identify the individual's potential for all modes of communicating. Secondly, research for how to best teach the best mode to the individual. Lastly, how to teach reading and writing for the particular mode for that individual.

Respondent 0411

c. Research priorities.
Research by service providers that have a financial stake in the outcome of the study should be carefully considered. Autism is big business and people are making millions off of it. Consider the research studies posted on http://www.valleysnafu.com/eibt.htm (IACC Note: URL not valid.) These service providers receive between $60k on up PER CHILD WITH ASD THAT THEY SERVE. They use these children without parental INFORMED consent in their research studies. Children in these research projects must have a minimum IQ and qualify in other areas. This has slanted the research.

Respondent 0421

a. Gaps and underrepresented research areas.
a observational study must be conducted of vaccinated/unvaccinated..it is imperative to the families affected especially in regressive autism that all environmental studies be done and especially unbiased studies done on vaccines. we don't believe the studies done as they are all connected with pharm/money. or a association with vaccine makers. there is no either or. or these have been done..even the # of vaccines before 6mos. has not been done compared to the 8 or 10 shots we as parents received in 80's...we would like the resignation of conflicted members of the iacc that we as parents worked so hard to get these provisions and are being ignored. Insel should step down as he has no intention of doing the studies as he is conflicted .

b. New opportunities.
the autism community has waited, waited, and waited more our young kids are now pre-adolescent and we are still waiting for effective programs. a whole body health approach. to move away from a mental health DSM. where is the real help? insurance won't pay for ABA..or supplements..etc....families are broke with injured kids. we need progress not more meetings.

c. Research priorities.
research priority on what is environmentally causing a explosion in asd ..replace or resign people who are wasting time and money in gene research it's been years...we have lost a whole generation of kids...

Respondent 0422

b. New opportunities.
What brain research is needed to explain how a child can accumulate 1000s of words and still not be able to string them together into sentences or communicate effectively. What new methods of communication can truly and effectively help bright children with no verbal skills to express their needs. What areas of the brain determine verbal language skills. My daughter is very teachable. Cant research in software or artificial intelligence come up with some method of communication?

Respondent 0426

c. Research priorities.
The most important thing on your list is to research "mechanisms of metabolic and/or immune system interaction with the nervous system." It is lunacy to continue to study how this illness affects eye tracking or gait or anything else when what we need to know it what is causing the illness.

Respondent 0430

a. Gaps and underrepresented research areas.
Research what happened around the time a child regressed. Take all incidents seriously. Most importantly just study these children.

b. New opportunities.
Same as above. It is documented on my grandson's 12 month 3 weeks visit that he was a normally developing toddler. He was talking, pointing, and playing games. He received 9 vaccines that day. Five months later on his chart is an official autism diagnosis from a developmental pediatrician at the University of MS. Five months!! However, no one is interested in studying him or the thousands of others with similar stories. This is inexcusable. Having been a part of mainstream medicine, I know how important patient history is. Until this move to protect the vaccine program people have always been listened to when giving clues as to what happened before an illness or disorder took place.

c. Research priorities.
Same as above. Study the children with regressive autism. Vaccines are not the only cause of autism just the most common. Make environmental factors the priority. Even thought I believe there is a genetic component enough money has been spent on the elusive autism gene. Go for the environmental trigger now.

Respondent 0436

a. Gaps and underrepresented research areas.
We need to look into various diets, such as gluten free/casein free, which may help individuals with autism.

Respondent 0437

a. Gaps and underrepresented research areas.
More research into neural underconnectivity

b. New opportunities.
More research into neural underconnectivity

c. Research priorities.
I feel this is very important to prioritize neural underconnectivity.

Respondent 0440

a. Gaps and underrepresented research areas.
What impact, if any, do parental attitudes have on adult outcome, and what factors influence these attitudes? How much impact do social environment and emotional support have on outcome and quality-of-life? To what degree is it possible to predict phenotype and/or adult outcome from genotype? What implications does this have for genetic testing? Addressing the ethical concerns surrounding essentially all of the research topics covered in this section. Again, it is imperative that autistics and disability rights scholars be involved in the bioethics discussions on these subjects.

c. Research priorities.
The priority of this section relative to others is appropriate, but more concern should be given to the ethics of the sort of research being undertaken here. Bioethics scholars with no background in disability rights are inadequate to address the relevant issues alone. Additionally, more emphasis should be placed on identifying how autism spectrum conditions manifest in females and determining if (and by how much) underdiagnosis is occurring.

Respondent 0445

a. Gaps and underrepresented research areas.
A clear need exists to advance understanding of the many phenotypes of ASD, including studies that link genotype to phenotype, investigations of natural and treated history, analyses of genetic interaction with environmental exposures, and studies of co-occurring medical conditions.

b. New opportunities.
MRI cat scans EEG's etc all need to be done at an early age if suspected

c. Research priorities.
open up autism waivers with Medicaid and help parents fight insurance barriers

Respondent 0446

a. Gaps and underrepresented research areas.
Since the IACC is about curing Autism, why is the only person that has an Autistic condition, Stephen Shore, someone who opposes cure? Please also put someone on the panel who lives with Autism and finds this makes life a struggle. To not do so gives the appearance, whether intended or not, of choosing sides.

c. Research priorities.
Vaccinated vs. Unvaccinated populations comparative health outcomes study on the docket first and foremost.

Respondent 0454

a. Gaps and underrepresented research areas.
I already understand what is happening. Tom Insel doesn't want to find out the truth that his brother's vaccine whether was that start of this epidemic. Tom, how about dealing with the conflict of interest you have by STEPPING DOWN and getting out of the way of legitimate research.

b. New opportunities.
Please do more objective research and study the current vaccine schedule and its effect on the immune system of these children.

c. Research priorities.
Vaccine and environmental research that is unbiased that can determine whether the current vaccine schedule, vaccine ingredients and pollutants have a role in the ever increasing autism epidemic.

Respondent 0455

a. Gaps and underrepresented research areas.
We need to have different diagnoses for children on the spectrum. High functioning and low-functioning is not acceptable.

c. Research priorities.
There should be different diagnoses based on the variety of symptoms. There needs to be evaluation of everything (allergies, sensory, developmental, occupational, eating, physical, etc) into a large database.

Respondent 0458

a. Gaps and underrepresented research areas.
I believe the creation of "subgroups" of individuals with autism is critical. The population is so heterogeneous that unstratified studies may miss genetic, biological or behavioral interventions that have a low or moderate success with all autistic individuals but a high success rate in a subgroup such as nonverbal individuals.

c. Research priorities.
I believe that postmortem brain and tissue research should be a priority as it may lead to a medical treatment that corrects symptoms.

Respondent 0461

a. Gaps and underrepresented research areas.
Research into the amount and types of vaccines and it's affect on the immune system and as one of the possible causes of autism/autistic symptoms. Study on rates of autism in vaccinated and unvaccinated populations

Respondent 0463

a. Gaps and underrepresented research areas.
While the need for research on co-occurring medical conditions is highlighted in the "What do we need?" section of question #2, there are no short- or long-term goals indicated. Clinicians who care for children with autism report a variety of co-occurring medical conditions, including metabolic abnormalities, oxidative stress, mitochondrial dysfunction, body burdens of heavy metals, gastrointestinal dysfunction and pathology (constipation, diarrhea, ulcerative colitis, esophagitis, and malabsorption), dietary allergies, and immune abnormalities as common in this population. They also report that appropriate identification and treatment of these underlying medical abnormalities often result in improved behavior and in some instances a loss of ASD diagnoses. Investigations into both the incidence of these co-occurring medical conditions and into best practices for effective treatment represent a critical unmet need.

b. New opportunities.
It was reported at IMFAR 2009 that approximately 1 in 10 children diagnosed with an autism spectrum disorder might recover. This finding is supported by recent data released from the National Children's Health Survey, in which over 80,000 U.S. households were surveyed regarding the health of their children. Researchers found that 1% of the households surveyed had a child with autism. They also reported that 0.6% of those said that the child had the condition at some point, but not currently. Recovery from autism represents new phenomena that deserve heightened research attention. Recent research also confirms parental reports of regressive autism. We believe there is much information to be gained from intensive evaluations of infants and toddlers during the reported timeframe of regression, including detailed historical data, an extensive physical exam, brain imaging, and laboratory parameters that elucidate the function of a wide range of metabolic, immunologic, and toxico

c. Research priorities.
The above research opportunities should be made a high priority and added to the NIH list of short-term objectives. All research should be prioritized to reflect the urgency of the goal of restoring health to those affected with the disorder, as well as the prevention of new cases.

Respondent 0464

c. Research priorities.
It would be great to have some research done with the low-functioning kids with Autism. I understand that it is difficult to conduct research with nonverbal low-functioning children, but it is also discouraging as a parent to see so much focus on the high functioning kids knowing that kids like my daughter are being left behind.

Respondent 0472

a. Gaps and underrepresented research areas.
While basic research can be important, we also need to think about how such research can be applied to help autistic people (of all ages) better learn and be comfortable and successful in society. Neurological differences show the need for new educational tools which can allow autistic people to learn in a neurotypical-centric society. Hopefully research can point the way in the development of such tools and educational programs. Identification of these differences is only valuable in their capacity to help autistic people live as autistic people.

b. New opportunities.
While I support neurological research about autistic people, we should not, upon entering such research, make the biased assumption that autistic brains are innately inferior to non-autistic brains. (Just as research into the neurology of sex-differences should not assume that one sex is superior.) There is much to learn about autism and neurology in general, but we are hindered in our pursuit of knowledge if we enter it with biases and assumptions.

Respondent 0473

c. Research priorities.
Need for a "crisis-response mode" similar to that used for SARS, bird flu and other emerging epidemics. Apply models that have proven successful for other childhood diseases " polio, cystic fibrosis, childhood cancers" with high rate of family participation in research. Two lines of research suggested: 1) Short-term, clinically meaningful studies that will help currently affected children/adolescents/young adults particularly relief of core symptom domains and associated medical problems (GI disease, immune dysfunction) 2) Mechanistic studies that will yield information about the cause of autism and lead to development of appropriate prevention strategies

Respondent 0476

a. Gaps and underrepresented research areas.
M...(partly due to the constant pressures for correcting abnormal and misunderstood behavior) has put off and swept aside any form of complete understanding of The Neurological Condition That Can And Does Result In Autism. Consequently, to date, the real ROOT PROBLEM SET has been predominately misunderstood and ignored rendering a solid definition of the complex condition out of reach. Negative aspects of condition have been addressed (naively), and positive aspects neglected. Without the WHOLE PICTURE, understanding is not likely. We clearly have 70 years of poor progress to prove that.

b. New opportunities.
Understanding and studying the features of the personality of a person with the neurological condition that can and does result in autism, when organized in a SPRATS hierarchy, (Introducing acronyms for the hierarchies of section I c, IV b, and VI c) and then understanding the real-world Life Needs hierarchy, of that personality organized as R-W-N-S-eHa-UA-eHoE-ESaC-IdF-aHa-DHoE-EBI and then studying how the two hierarchies interact will go a notably long way to fully understand the abnormality, and bring HUGE progress in preparing now misunderstood, (but with great obfuscated value) children for success both as a child AND as an adult. We have the best experience available to demonstrate how to start and go about this. We can also demonstrate a sample SPRATS chart.

c. Research priorities.
The condition that fosters autism is an abnormality, NO question. However, the condition also OFTEN brings with it: SPECIALIZED PERCEPTIONS AND CAPABILITIES, rare skills useful for analyzing, simplifying, and solving complex, often interactive problems in various (almost any) science, technology or art. The 70 yrs of M... choosing to remain tightly focused on naively attempting to normalize the misunderstood behavior of frustrated, apprehensive, and worn down children, and then abandoning them as they age, has resulted in 90 - 95% of the subjects of behavioral treatments remaining seriously under, or un-employed. Of those luckily employed their national average annual remuneration is USD $6,000 (no typo, 6k). I am lead to say that the historic approach of M... nearly GUARANTEES FAILURE AS AN ADULT. Appropriate recognition, encouragement, development, and application of the ignored positive aspects, STOPS unnecessary anguish, wasteful expenditure of resources, AND LIVES.

Respondent 0477

a. Gaps and underrepresented research areas.
Please make low verbal and nonverbal people with autism part of the Strategic plan! It is so important. Thank you very much.

Respondent 0480

a. Gaps and underrepresented research areas.
Various organizations in Florida provide information and assistance for people diagnosed with ASD and their families. Many organizations house websites that provide information and support networks which families and professionals can access in order to make informed decisions about treatment options. Florida autism associations make efforts to educate lawmakers and the school system to effectively provide resources to enable people with autism to live meaningful lives. Autism advocacy groups in Florida often pursue information on a national level which includes collaborating with local educators to implement ideas for programs and treatment successfully. Some organizations make treatment clinics available, emphasizing Intensive Behavioral Intervention programs.

b. New opportunities.
Florida implemented the Governor's Task Force on Autism Spectrum Disorders under Executive Order 08-36 on March 7, 2008, Governor Charlie Crist established the Task Force on Autism Spectrum Disorders in order to set a unified agenda to address the needs of individuals with autism. The task force met initially to submit a report to the governor outlining recommendations, legislative accomplishments, and progress. The task force represented 18-22 members appointed by the governor, including parents, health care providers, representatives of state and local government agencies, advocates for autism, and other professionals with an interest in autism. The director of the Florida Agency for Persons with Disabilities, and Dan Marino, formerly with the Miami Dolphins and parent of a child with autism, served as the co-chairs.

c. Research priorities.
In Florida, students with autism are eligible to receive exceptional student education services if there is evidence of an uneven development in language, social, adaptive and/or communication skills; impairment in social interaction with people or the environment (absent, delayed, atypical); impairment in communication skills; restricted repetitive and/or stereotyped patterns of behavior; reference to evidence of onset during the first three years of life has been deleted. The Special Policies & Procedures (SP&P) content must comprise of a comprehensive evaluation of the student that includes a psychological and speech/language assessments, development, and a review of medical information. (Rule 6A-6.03023, FAC) The Florida Statute 48-1004.55 (2007) established seven regional autism centers at a state university under the direction of the Florida Department of Education to provide information, resources and training for individuals with autism and pervasive developmental disorders.

Respondent 0481

a. Gaps and underrepresented research areas.
I am pleased to see that research on the unique strengths and abilities of the Autistic population is one of the topics mentioned in this section as a research opportunity. It appears to have been thoroughly ignored, however, in formulating both short and long term goals.

b. New opportunities.
A longitudinal study could be very helpful in improving understanding of what leads to good outcomes for Autistic people. At present, many people are making assumptions and unwarranted claims that certain therapies or approaches will bring about good outcomes, without any long term data to support those claims.

c. Research priorities.
Research on Autistic strengths and abilities should be included as part of the longitudinal study suggested in the long term objectives section, with an emphasis on investigating how these strengths can lead to positive outcomes in adulthood. There should be less of a focus on brain tissue and other biomaterials, and more resources devoted to understanding how the social environment, including cultural attitudes toward Autistic people and how these attitudes are manifested in the schools and elsewhere, influences the development of a child.

Respondent 0484

a. Gaps and underrepresented research areas.
Alternatives to drugs. Individuals need to cope with being different, so they need to understand the how and why of the symptoms and how others have coped. We need to concentrate on approaches others have used that have proven to be successful and do more research on those. Individuals with Autism share coping mechanisms all the time and some are very helpful. While some have identified genes as being the cause how can anyone determine if the difference is good or bad? Perhaps the difference in the genes is a good phenomenon.

Respondent 0485

a. Gaps and underrepresented research areas.
Definitions of success are also absent, as well as mechanisms to evaluate success.

Respondent 0488

c. Research priorities.
When conducting longitudinal studies of biological, clinical and developmental profiles of children, include measures of relationship skills, family and child quality of life and complex cognitive skills. Do not restrict developmental measures to standardized IQ and language tests! These measures do not capture the dynamic nature of real world relationships.

Respondent 0493

a. Gaps and underrepresented research areas.
Ask the parents. They watched their beautiful children disappear. Pharma didn't watch their babies loose skills and then be told you don't understand science.

c. Research priorities.
Vaccinate vs. unvaccinated total health outcome

Respondent 0494

a. Gaps and underrepresented research areas.
Your report states: In the case of the immune system, a number of hypotheses concerning how disruptions might contribute to ASD and other neurodevelopmental disorders have emerged in recent years. Some recent findings suggest that the immune systems of parents and their children may affect early brain development and the onset and fluctuation of symptoms in some children with ASD (Pardo, Vargas, & Zimmerman, 2005). For example, research on the effect of maternal antibodies, proteins produced as part of the immune response, on an array of fetal brain proteins suggested that in some cases maternal antibodies could interfere with normal brain development (Braunschweig et al., 2008). The autism community has discussed immune issues for years. Why do we inject our children with so many toxins and diseases knowing there is a connection with immune disorders and autism? Once again, back to the subject of vaccines.

b. New opportunities.
Why are the rates of autism different in most states or even areas of a same state?

c. Research priorities.
Research on vaccines and anything else that goes into our bodies must be researched. The damage that is caused by antibiotics, steroids and pesticides in our foods must be researched. The usage of antibiotics in babies must be researched.

Respondent 0501

a. Gaps and underrepresented research areas.
The biological approach is offensive. Understanding what is happening isn't about the biology of the child, but what the child experiences! Researchers on autism should focus on understanding the *people*, not the disorder. Understanding the people will help develop strategies that can overcome adverse symptoms.

b. New opportunities.
Focus on the quality of life aspects involved in autism. How to handle differences in experience sensory stimuli. An example would be answering the question: "What can I do as a parent to make loud noises less painful for my autistic child?" Or "How can I help my child cope with frustration so he/she doesn't hurt herself/himself or others?"

c. Research priorities.
Biological markers should be a very low priority. Put the *people* as your top priority, not the disorder.

Respondent 0502

a. Gaps and underrepresented research areas.
More research is needed on girls and ASD, and Asperger's Syndrome in particular. Would like to see research into "selective mutism" and its relation to ASD. Still more research needed into what it means to be a "verbal autistic."

b. New opportunities.
More research about how well families of autistic people understand what is currently known about the science of autism, what facts are established, and what the open questions are. If the evidence indicates families don't understand "what is happening," what are they missing and why?

c. Research priorities.
NIH grant to Children's Hospital of Orange County re: neural stem cells donated by autistic children is a step in the right direction. "Research on the unique strengths and abilities of people with ASD" = very important. The spectrum has broadened and includes all kinds of people. Fear mongering in the media has kept some parents from getting help for their undiagnosed child, fearing stigma or blame for the condition. Needs to be more acceptance of "difference," less fear of autism.

Respondent 0505

a. Gaps and underrepresented research areas.
Lack of government trust: Topic should explain that actions by IACC leader have sabotaged public trust in government. Technologies on the horizon: Virus oligo microarray chip by Dr. Joe DeRisi could be used to screen for viruses in blood, CSF. This has merit given the evidence of a inflammatory process in brains of ASD individuals found in posthumous examination

b. New opportunities.
Should explain that Tom Insel holds closed door meetings to un-do votes to research vaccine safety that the government collectively cannot be trusted.

c. Research priorities.
Tom Insel must leave. Vaccine safety should be the first addressed and most heavily, generously and cynically scrutinized. A previously unknown viral cause should also be explored using oligo microarray screening/exploration. Primate research on common household chemicals and prescription and OTC drugs.

Respondent 0506

a. Gaps and underrepresented research areas.
While we applaud the NIH's emphasis on biobanking, we would like to emphasize the importance of leveraging large research networks and consider supporting collection of biomaterials that go beyond DNA and cell lines. Centralized methods for collection, storage, and distribution of urine and other biologic materials are sorely lacking.

b. New opportunities.
We would like to suggest that the NIH leverage their investment in the Clinical and Translational Science Awards (CTSA) to support biobanking efforts at each of these sites, especially those that support clinical and research programs for individuals with ASD and other neurodevelopmental disorders. Additional funding could support these efforts in a coordinated fashion and would significantly accelerate the pace of research.

Respondent 0507

Helen McNabb

a. Gaps and underrepresented research areas.
1. What causes ASD and Asperger's Disorder? 2. Multiple Vaccinations - possible causes of ASD 3. Baby food/formula (including additives) - possible causes of ASD 4. # of babies born during the 1980's with ASD 5. # of babies born during the 1980's with ASD who were premature and weighed less than 2 pounds. 6. The commonalities and differences of ASD and Asperger's Disorder. 7. Population of those with Asperger's Disorder, specifically, adults.

b. New opportunities.
1. Town Hall Meetings. 2. Access to Data Sharing for the public to see and part-take in.

c. Research priorities.
Age - oldest population, first, and so on.

Respondent 0509

a. Gaps and underrepresented research areas.
"Multi-disciplinary, longitudinal, biobehavioral studies of children, youths, and adults beginning during infancy" and "Complete a large-scale, multi-disciplinary, collaborative project that longitudinally and comprehensively examines how the biological, clinical, and developmental profiles of children" must include gathering data on vaccine history as one of the factors to be studied. If NIH has vested interests preventing objectively doing this research, funding must be granted through anther organization, such as SafeMinds, Generation Rescue, or National Autism Association. The vested interests of NIH must not prevent this research from happening. The IACC must fund research on vaccines in relation to autism.

b. New opportunities.
Same as section "a" above.

c. Research priorities.
STUDY VACCINES IN RELATION TO AUTISM! STUDY VACCINE HISTORIES IN EPI STUDIES. STUDY INDIVIDUAL VACCINE-INJURED CHILDREN.

Respondent 0510

c. Research priorities.
1.STUDY OUR COMMUNITIES, PLEASE!!!

Respondent 0514

a. Gaps and underrepresented research areas.
HAHAHAHAHHAHAHAHAHHAHAHAHHAHAHAHAHHAHAHAHAHHAHAHAHAHHAHAHAHHAHAHAHAHHAHAHAHAHHAHAHAHAHHAHAHAHHAHAHAHAHHAHAHAHAHHAHAHAHAHHAHAHAHHAHAHAHAHHAHAHAHAHHAHAHAHAHHAHAHAHHAHAHAHAHHAHAHAHAHHAHAHAHAHHAHAHAHHAHAHAHAHHAHAHAHAHHAHAHAHAHHAHAHAHHAHAHAHAHHAHAHAHAHHAHAHAHAHHAHAHAHHAHAHAHAHHAHAHAHAHHAHAHAHAHHAHAHAHHAHAHAHAH I don't NEED understanding - You NEED TO FIND THE CAUSE. Priority = environmental and biological ischema event prevention. WAAAAAAAAAY UNDER REPRESENTED IN COMMITTEE COMMITMENT!

b. New opportunities.
Priority = environmental and biological ischema event prevention.

c. Research priorities.
Get off your "The research has already been done" high horse. This is NOT SOCIALLY CAUSED and can be researched in the body. Priority = environmental and biological ischema event prevention.

Respondent 0519

a. Gaps and underrepresented research areas.
Use of existing scientific data on medical conditions that accompany ASD. Use of existing environmental data to identify environmental risk factors to determine effects on human health and to chemical exposures. Body burden studies on toxicity levels.

b. New opportunities.
National Center for Environmental Health National Health and Nutrition Examination Survey data should be used to establish reference ranges for unusually high exposure levels to a toxicant, identifying populations with toxicity levels above those associated with adverse health outcomes, time trend tracking of exposures to reveal changes in the environment and set to priorities for environmental research. Conducting body burden studies.

c. Research priorities.
Greater emphasis on the role of environment and corresponding increase in research objectives to better understand autism's etiology.

Respondent 0521

a. Gaps and underrepresented research areas.
true measure of intellectual and functional ability in low & nonverbal people with autism

b. New opportunities.
research into skill and knowledge competence & deficit in low and nonverbal people with autism

c. Research priorities.
research low and nonverbal people with autism. The measures of intelligence for these children are archaic. Methods like Rapid Prompting Method (RPM) and FC (Facilitated Communication) merit more thoughtful and respectful consideration

Respondent 0524

a. Gaps and underrepresented research areas.
We need to define "autism" or perhaps "autisms." This 1 in 150 number (or perhaps it is becoming 1 in 100) is very misleading as it is a catch all for everything from classic autism to PDD-NOS to Asperger's. When I protest that my son does not have a disease or need to be cured, people say, "Well, that's because he's high functioning [which is only true sometimes, by the way] so he doesn't count as really autistic." To which I reply, "Okay, fine, then don't use him in your 1 in 150 scare numbers. Because having people like my son in the world is not a problem.

b. New opportunities.
We need to research how many people are being diagnosed with what kind of autism, to see which part of the spectrum is increasing. We need to interrogate what "functioning" means and how it can vary within a single individual over short or long periods of time.

c. Research priorities.
We need to stop wasting money researching a vaccine link.

Question 3: What Caused This To Happen and Can This Be Prevented?

Respondent 0013

Eileen Nicole Simon
conradsimon.org This link exits the Interagency Autism Coordinating Committee Web site

a. Gaps and underrepresented research areas.
Autism is associated with many etiologies, including genetic metabolic disorders. What is needed is to look for a final common pathway in the brain affected by all predispositions for autism. Phenylketonuria (PKU) was a genetic cause of autism in the past. Note that discovery of the metabolic defect in PKU, and treatment by dietary restriction of phenylalanine, predate discovery of the structure of DNA. PKU is caused by a defective enzyme in the liver, not the brain. Abnormal metabolites (mainly phenylpyruvic acid) of this defective enzyme are clearly toxic to the brain. Within the brain, the auditory system has the highest rate of blood flow and aerobic metabolism and is most vulnerable to toxic abnormal metabolites like phenylpyruvic acid. Developmental language disorder is the core handicap of children with autism. The brain impairment underlying this handicap is the final common pathway of all etiologies of autism, and likely includes the auditory system.

b. New opportunities.
Folstein & Rutter (1977) reported concordance for autism in 4 of 11 pairs of monozygotic twins. Of 21 twin pairs, 17 pairs were discordant for autism and in 12 pairs autism was associated with an event likely to cause brain damage. Of the identical twins studied by Belmonte & Carper (2006), the more seriously affected twin was not breathing at birth, and at 9 months of age he failed a hearing test. Norman (1982) noted that perinatal hazards are increased for twins and that thus twins are not a good model for genetic versus environmental studies of things like intelligence. References: (1) Folstein S, Rutter M. Infantile autism: a genetic study of 21 twin pairs. J Child Psychol Psychiatry 1977 Sep;18(4):297-321. (2) Belmonte MK, Carper RA. Monozygotic twins with Asperger syndrome: differences in behavior reflect variations in brain structure and function. Brain Cogn. 2006 Jun;61(1):110-21. (3) Norman MG. Mechanisms of brain damage in twins. Can J Neurol Sci. 1982 Aug;9(3):339-44.

c. Research priorities.
Research with twins as described above provides strong evidence that genetics has less to do with causing autism than environmental causes of brain damage. What causes brain damage in the perinatal period, and what systems of the brain are more vulnerable to damage? Neurotransmitter hypotheses are currently too non-specific. Investigation of inhibitory versus excitatory neurotransmission in specific brain structures like the inferior colliculi may shed some light on how acoustic processing might be disrupted in children with autism.

Respondent 0018

b. New opportunities.
More and more research is accumulating suggesting the medical problems of children with autism. Oxidative stress. Immune dysfunction. Mitochondrial dysfunction. We need to be studying how these relate to other and we need to be studying the things that cause these problems as potential causes of autism. These are known to include heavy metals, pesticides, infections. Study those things....even if they occur in vaccines.

Respondent 0022

a. Gaps and underrepresented research areas.
Environmental interaction is poorly researched.

Respondent 0023

John Best
Hating Autism blog

a. Gaps and underrepresented research areas.
You liars know what caused this, thimerosal. Get ALL of it out of the vaccines right now. And, get rid of the squalene too.

Respondent 0024

a. Gaps and underrepresented research areas.
The concept of vaccine damage has not been fully proven. I believe that we need to look at unvaccinated children for any evidence of autism. Unvaccinated populations that show no sign of autism should give some leverage to cause. Also, we need more information on the sampling and studies of the CDC and NIH "proof" that vaccines are not involved in the epidemic of autism. These studies should be shown as unreliable or flawed.

Respondent 0029

a. Gaps and underrepresented research areas.
Is there an environmental cause? Do sonograms or reproductive technology increase rates of autism? Can the increase in autism prevalence be explained by the trend towards mothers and fathers having babies at older ages?

c. Research priorities.
Etiology and cure have gotten too much attention and is not balanced with research into how to improve the lives of individuals with autism--especially adults and their aging caregivers.

Respondent 0035

a. Gaps and underrepresented research areas.
I think a lot of research is already being done in this area but the focus should be on genetics and environmental triggers. Especially focusing on the genetics of the child that might make them vulnerable to environmental factors.

b. New opportunities.
I don't know.

c. Research priorities.
Focusing on tests that will determine vulnerability in children to environmental factors

Respondent 0038

a. Gaps and underrepresented research areas.
We simply need a vaccinated vs. unvaccinated study. Period. We also need a real study comparing children who received multiple injections of thimerosal vs. children who received NO thimerosal. The 2007 New England Journal of Medicine study was a joke because none of the children in the study received NO thimerosal. They ALL received thimerosal. The only difference was the amount they received.

b. New opportunities.
We need your committee to go through one by one and pick apart many of these flawed epidemiological studies which have supposedly exonerated thimerosal as being a culprit behind the rise in autism. The Verstratten study and the Denmark study in particular were extremely flawed and showed signs of frank manipulation. This needs to be exposed on a national level. Does your committee have the guts to expose the scandals behind these studies? Also the extreme conflicts of interest associated with these studies needs to be revealed on a national level. This will demonstrate to many involved just how deep this cover-up goes. And it IS a cover-up. There are many at the CDC who honestly deserve to be severely prosecuted for many crimes including perjury, obstruction of justice, and conspiracy to commit the before mentioned. You simply cannot understand the cause of autism until you expose the charlatans who have obfuscated and obstructed the search for the true cause.

c. Research priorities.
Again, does your committee have the courage to stand up to the likes of the CDC, AAP, Pharmaceutical industry, AMA, and the government itself? If you don't then you are wasting your time because these groups do not want a real cause to be found. They want it to remain a mystery. They want us to believe it is simply a freak of genetics. They want no blame assigned for any of this.

Respondent 0042

a. Gaps and underrepresented research areas.
Continued research into vaccines as a possible cause for autism, is a terrible waste of time and financial resources. Any discussion about prevention should ONLY be made with much input from adults with autism.

Respondent 0046

a. Gaps and underrepresented research areas.
More research into using induction with Pitocin, and the outcomes.

b. New opportunities.
Research into genetics.

c. Research priorities.
Research into genetics, and induction with Pitocin.

Respondent 0047

a. Gaps and underrepresented research areas.
There is still no INDEPENDENT, definitive evidence that immunizations are truly safe for our children, particularly the "newer" ones that have been added to the mandatory schedule over the past several years. This issue needs to be researched, funded by someone other than the drug companies and insurance companies.

b. New opportunities.
A complete separation of the research into ASD causation and treatment from the vaccine-producing pharmaceutical companies and insurance companies, who refuse to pay for any medical treatment related to autism because they consider it a "mental" disorder.

c. Research priorities.
Establish INDEPENDENT research. Be honest in informing the public of the risks of the accelerated immunization schedule. Allow parents the right to opt out of immunizations, especially if their children are already affected by ASDs.

Respondent 0049

a. Gaps and underrepresented research areas.
While it can be valuable to understand the origin of autism, too much emphasis is placed on "curing" or "preventing" autism, and more emphasis should be placed on thinking creatively and compassionately for our fellow human beings. Autism is not a tragedy. It is a learning opportunity.

c. Research priorities.
Check into GMOs Check into industrial pollutants Check into industrial agriculture Check into pharmaceutical pollution of ground water All of these factors have altered biodiversity and the human genome, and we have done little or nothing to address them.

Respondent 0052

a. Gaps and underrepresented research areas.
Autism has long been believed to be a genetic disorder, and some genetic markers have been found, but not all of the people diagnosed with Autism have these markers. I would like to see research continue on this to see if additional markers can be found or if other conditions such as unusual allergic reactions could be simply be imitating Autism.

b. New opportunities.
This topic has been the source of much dissension in the Autism community and I would like to see more collaboration between the 2 sides. I think the Bio-medical community may be onto something with their discovery of how many kids respond to diet change, but they seem to forget that this is a spectrum disorder so it may not hold true for everyone. I would like to see a collaboration to determine if more allergies than just food and mineral ingestion may be influential. I would also like to see more genetic research to continue to see if more markers can be found.

c. Research priorities.
I believe both areas that I mentioned are worthy of research and that simultaneous study should be done because ignoring either could be a huge mistake. Both have had measurable success already and that merit alone warrants more research, in my opinion, especially since both are obviously not complete yet.

Respondent 0054

a. Gaps and underrepresented research areas.
The reasons that these things happened are that political considerations overwhelm the decisions of the IACC and who gets appointed and who gets to review research. Also, the government does not do a good job in refusing to allow neurodiversity proponents to present their views before the IACC. They should not be allowed to present their anticure propaganda and the way to prevent this is to get a security guard to eject them forcibly from the premises if they enter the premises.

b. New opportunities.
same as above.

c. Research priorities.
same as above.

Respondent 0059

a. Gaps and underrepresented research areas.
Tom Insel needs to resign, his brother made 4 million dollars from the Hib vaccine. Tom Insel has special interest in hiding the truth that vaccines are causing the rise in autoimmune diseases including autism. Vaccines is the cause and we need to find out exactly what metabolic pathway has been damaged and find treatments to repair that metabolic pathway. we need to find out who is likely to react to vaccines with certain test and prevent autism/strokes from happening. We need to look at inflammatory disorders and find out the exact process of these diseases. We need to help families and adult ASD individuals be able to find suitable living arrangements to have a full and satisfying life.

b. New opportunities.
Richard Insel made millions from creating the Hib. Tom Insel needs to resign for he is too involved in the vaccine question. vaccines are causing the rise in autoimmune diseases. Please excuse yourself Dr. Insel. and save the world! Testing of people that have autism and their families. There are identical twins out there in which one has ASD and the other does not. Find the test see which individuals in the future do not need booster shots! For me this has been going on for 26 years, and it was happening even longer than that. Shame on all!

c. Research priorities.
Admitting that vaccines are the problem in the rise of autism. I think it is already known and the federal government is playing the old bait and switch game. But if more money must be spent; try the vaccinated and unvaccinated studies. Try to make sure that the ones doing the research is not involved with those that are making their living making vaccines. It is sort of like the tobacco companies that used to research if smoking was the cause of lung cancer. Tom Insel's brother Richard Insel earned millions in making vaccines. Tom Insel needs to quit and let a more honest person run the show

Respondent 0060

a. Gaps and underrepresented research areas.
Bias toward prenatal onset. Recognition of multiple trajectories in autism, including postnatal onset, regression and postnatal influences needed. Restoration of vaccine objectives vetted through IACC science workshops and strategic planning workgroups and approved in 12/2008 and removed in 1/2009 under the false pretext that HHS had conflicts of interest that precluded its pursuit, objectives where not vetted by the science community involved in the strategic planning process and that NIH did not have expertise in vaccine research all of which is demonstratively false when examining public documents within NIH and IACC transcripts. Integration of vaccine safety research objectives needed as they relate to ASD and as identified by NVAC. The plan misrepresents IOM 2004, ignores corrections from IACC SP and science workgroups, and does not cite vaccine science supporting the need for investigation - correction needed. An independent panel to undertake this research is needed.

b. New opportunities.
Funding the National Children's Health study to collect detailed medical records, (Prenatal, post natal and throughout the study) including vaccine mfg and lot number. Expansion of existing short-term objectives to identify environmental factors from 5 to 20 factors and expansion of objectives investigating/identifying biomarkers to 10. Relative to environmental factors, populations in the U.S. must be included in all environmental investigations. Expansion of long-term objectives on effect of environmental factors on risk for subtypes of ASD in the pre- and early postnatal period from 5 to 20 environmental factors and include exposure/exposure and exposure/pathogen mixtures. Expand multi-site study of the subsequent pregnancies of 1,000 women to include monitoring of environmental toxicants prenatally and for first 3 years of life. Mercury is a frequently cited environmental toxin with numerous studies indicating its role in autism - investigation is needed!

c. Research priorities.
Continued and unwarranted bias on genetics research remains in the plan. Given NIH public-private partnerships and the fact that genetic research is well funded by private organizations, monies earmarked for genetic objectives should be diverted into understudied role of environmental factors and their genetic interplay. Wording should be revised to recognize the innovative and novel approaches currently in place or being developed in environmental science, as current wording suggests that cutting edge developments are only occurring in genetics. Environmental research in ASD must build on the substantial pre-existing environmental research infrastructure and informatics, as risk factors are likely to be pertinent to both brain development and chronic systemic features, such as inflammation and oxidative stress in subgroups of ASD. Under-representation of public members allowed federal members to override critically needed research in this section, thus skewing priorities. Please remedy.

Respondent 0063

c. Research priorities.
Identify ALL the toxins we are exposed to that is increasing the risk of autism. i.e.: fluoride, vaccines, antibiotics, chemicals, food additives, pollution 2. genetics lead to a predisposition--all of us can look at our families and see the quirks here and there and mild social difficulties that are chalked up to "personality quirks"--but what toxic soup stirs these all together in one individual to cause such a disabling thing such as autism.

Respondent 0074

a. Gaps and underrepresented research areas.
Vaccines are causing childhood autism, period.

b. New opportunities.
Maybe you could look at the prevalence of ASDs in unvaccinated children, of which there are many.

Respondent 0075

a. Gaps and underrepresented research areas.
A genetic neurological abnormality has occasionally occurred in humans for at least the last 700 years. Always less than about 2% of population, these people happen to be born with a set of abnormal SPRATS. The dynamic interactions of an individual's SPRATS, control the only ways for a mind-body to relate to its environment. Such results in a sometimes-significantly different Thinking System(s), including communication(s). Our experiences indicate that IF the abnormality is more fully investigated, better understood, and applied, prevention would not even be considered. Engineering the condition would. Best applications of the capabilities would.

b. New opportunities.
See III a

c. Research priorities.
From considerable experience working with adults living on the autism spectrum, we know that many individuals will usually come to behave near normally and perform extremely well, IF they are valued in society for their uncommon capabilities and skills, treated with respect, and challenged appropriately. 1st Understand the abnormality. 2nd Learn how to use the abnormality by appropriate recognition, encouragement and application of the positive aspects. 3rd MOST IMPORTANT inform harassed parents of the utility of the abnormality AND the best way to handle it.

Respondent 0077

a. Gaps and underrepresented research areas.
I am not certain that "prevention" is an important thing. I personally believe in neurodiversity.

b. New opportunities.
N/A

c. Research priorities.
N/A

Respondent 0095

a. Gaps and underrepresented research areas.
see my answer to #1....I did not do this correctly and I apologize for the out-of-order....

Respondent 0102

a. Gaps and underrepresented research areas.
Without a doubt - VACCINES! The vast majority of valid (meaning without conflict of interest) research on this topic shows that the over-vaccination of America's children has been the main cause of the current epidemic of autism. INDEPENDENT research must be done - not funded by the CDC, the FDA, or the NIH - because these supposed regulatory agencies are captives of the industries they are charged with overseeing. The money channeled into these agencies by the drug companies effectively negates the objectivity they should have regarding vaccines.

c. Research priorities.
1. Remove the job of overseeing vaccine safety from the agency that is also responsible for the job of vaccine promotion - the CDC. This organization has become so corrupted by income from the drug companies that it is absolutely worthless to protect American children from vaccine injuries. 2. Do an INDEPENDENT research study of vaccinated vs. non-vaccinated Americans, which records the health outcomes of those in the study - including autism, asthma, allergies, autoimmune diseases, ADD/ADHD, OCD, and other neurological disorders. The answers to that study will give you the answer to your second question, which is - "Can this be prevented?"

Respondent 0105

a. Gaps and underrepresented research areas.
Study on the development and implementation of a sensitive ocular test. Despite the high genetic and psychiatric components in ASD, the neurological system is the most obviously affected, and the ocular system the first to display injury. A meticulous analysis (by instruments) of the awkward ocular motion associated with many individuals with ASD (undetected by even the best ophthalmologists), could enable us to develop an early diagnostic device, available at any hospital or health center, that would identify and reveal the first signs of ASD, long before the development of the apparent autistic symptoms, as early as just a few weeks after birth. This device would not require the active participation of the baby. Although similar studies already exist, the implementation of a handy, sensitive and reliable ocular test is a must.

b. New opportunities.
Please, NO MORE studies with ANIMAL MODELS. They must be banned. We have neither time nor money to waste for this type of research. Despite the genetic similarities between humans and mice, autism cannot be reproduced in any animal model mutant or knock-out, as the behavioral pattern and needs of a mouse or monkey, for instance, are totally different from those of the human. There are many thousands of persons with ASD verbal or nonverbal, high or low-functioning that can be used as models in research studies, according to the research ethics committees.

c. Research priorities.
Study of the pitocin (Oxytocin) levels used during labor and delivery: Despite the fact that ASD has a high genetic component, the alarming increase in incidence and prevalence suggests that other exterior factors are involved. Epidemiological studies in different countries, including States within the US, prove to have varying degrees of ASD incidence, indicating the probable implication of factors related to medical practice and everyday life, that go beyond genes. Oxytocin the hormone of socialization among others, has been overused and even abused in everyday OBGYN practice in many states, that warrants its close consideration, once more, with more accurate data and comprehensive studies.

Respondent 0116

a. Gaps and underrepresented research areas.
I do not believe enough has been done to understand the causes of autism and the developmental delays associated with the kids on the spectrum. I believe that my son's problems are associated with environmental toxins that I had in my system before conception. I have had 3 children and each child has been less affected, with the last being unaffected. This fact implies to me that I was exposed to something that cleared my system over a period of years. I have not seen any research in this area.

b. New opportunities.
We need to find the break down in the brain that is causing the symptoms and figure out, in addition to genes, what environmental factors are causing the expression of these symptoms.

Respondent 0125

a. Gaps and underrepresented research areas.
Etiology is important particularly if it leads to studies of the biology of autism.

b. New opportunities.
To my untrained eye, the most interesting research these days is that investigating the role of the immune system and oxidative stress.

Respondent 0129

a. Gaps and underrepresented research areas.
There is a firm belief among parents, advocates, clinicians, and doctors that environmental insults are severely damaging our children. I suggest that the scope of research in this area is limited. With Autism, every individual presents differently and it's very possible that Autism is really multiple disorders that manifest within a specific set of criteria (see DSM IV-TR). Just as plausible is the belief that there are multiple triggers that push the predisposed children over the edge of quirky or shy into the debilitating world of Autism. One of the most common environmental insults that children come into direct contact with are mandatory vaccinations. An in-depth review of the literature shows that the connection has clearly not been disproven. Agreeing that environmental insults play a role in the declining health of our children and the increase in Autism, it's logical to focus heavily on the most common insult all children are exposed to-Mandatory Vaccinations!!!

Respondent 0131

a. Gaps and underrepresented research areas.
No comment

b. New opportunities.
No comment

c. Research priorities.
No comment

Respondent 0133

a. Gaps and underrepresented research areas.
environmental triggers (INCLUDING IN UTERO) demographics patterns distribution and incidence reporting

c. Research priorities.
Must put to rest the questions "are we just getting better at diagnosing)before priorities can really be set.

Respondent 0134

a. Gaps and underrepresented research areas.
I am not sure that the area I am recommending research has been addressed, but I believe that Dr. John Cannell's hypothesis that a "Deficiency of Vitamin D during pregnancy may be contributing to autism" needs to be addressed. This can be addressed by looking to see if supplementing either women in general who get pregnant with "adequate" levels of vitamin D (meaning having approximately 5000 IU D3 to 7000 IU D3 during pregnancy or a level of 25 hydroxy D3 of at least above 32 ng/ml or preferably above 50 ng/ml, but below 100 ng/ml)would prevent autism or not. The breast feeding mother would also need to be supplemented with approximately 6400 IU D3 to 7000 IU D3 to ensure that the baby would be replete. If not breastfeeding the baby would need to be supplemented.

b. New opportunities.
New opportunities would include a trial of vitamin D in the general population of women who get pregnant with adequate amounts. I do not consider 400 IU D3 adequate. As an alternative, choosing mothers who already have one child with autism and are pregnant, to give that mother "adequate doses of vitamin D" at the level of 5000 IU D3 - 7000 IU D3 per day or ensuring that the level of 25 hydroxy D3 is above 32 ng/ml or preferably above 50 ng/ml, but below 100 ng/ml. This would need to be continued during breastfeeding or if not breastfeeding, the infant would need to be supplemented with vitamin D3. We are actually doing this on a small scale, but it needs to be done on a much larger scale to get meaningful results.

c. Research priorities.
Please see section a. and b. Using vitamin D during pregnancy has the potential to prevent either the onset of autism from pregnant women in general or to prevent the recurrence of autism in mothers who already have one child with autism. This is a fairly long term study--at least 5 years after delivery and the accumulation of large enough numbers to be meaningful. The difficulty would be the ethical question of whether to give control women the current recommended dose of 400 IU D3 or whether enough is now known, that dose is now considered inadequate.

Respondent 0137

a. Gaps and underrepresented research areas.
The search for purely genetic causes of the increased autism rates is a fools mission, fueled, in part, by technical advances in our ability to carry out genetic analyses, a legacy of the human genome project. However, metabolic abnormalities are far more likely to cause autism and, to my knowledge, abnormal reduction-oxidation reaction and methylation status has been demonstrated in every study that examined these endpoints. Recognizing their link to development is key, and the causation focus should centered on agents which are likely to cause abnormal reduction-oxidation reaction and methylation status across the US population.

b. New opportunities.
New opportunities arise from a deeper and more intimate understanding of the relevant biochemical and metabolic pathways which determine reduction-oxidation reaction and methylation status. These include a recognition of the role of selenium metabolism and selenoproteins. Development and stem cell differentiation are closely related topics, both of which are highly dependent upon reduction-oxidation reaction and methylation. Accordingly, there should be a thorough analysis of the effects of suspected or candidate environmental toxins on stem cell differentiation.

c. Research priorities.
The priority should be to screen environmentally encountered chemicals for their effects on cellular reduction-oxidation reaction and methylation status and for their effects on development of stem cells, especially neural stem cells.

Respondent 0139

a. Gaps and underrepresented research areas.
There is scientific evidence that prenatal ultrasound may be causing autism. A 1982 World Health Organization report documenting a symposium on the bioeffects of ultrasound, in its "Human Fetal Studies" summary, declared "animal studies suggest that neurological, behavioral (sic), [and] developmental "changes" can result from exposure to ultrasound." (http://tinyurl.com/klxcug This link exits the Interagency Autism Coordinating Committee Web site). In 2006, Yale neuroscientist Pasko Rakic showed that pregnant mice exposed to prenatal ultrasound produced offspring with brain anomalies consistent with those found in autopsied autistics (http://tinyurl.com/ofpfh3 This link exits the Interagency Autism Coordinating Committee Web site). At present, the Strategic Plan only calls for the possibility of monitoring scientific literature regarding ultrasound, which does not show due diligence in pursuing all possible causes of autism. Previous safety studies indicating prenatal ultrasound is safe no longer apply due to major changes in ultrasound applications, technology and the gestational window of exposure.

b. New opportunities.
Studies that seek environmental risk factors for autism investigate delivery complications, folic acid levels, water and air quality, plastic toys and bottles, paint, flooring, and everything under the kitchen sink -- but NONE include examining maternal ultrasound histories. This was also missing in the 2000 CDC Community Report on Brick Township, New Jersey, which sought an explanation for an apparent autism cluster. Cohort matched retrospective studies could yield telling information in a fairly short amount of time. Also, current environmental studies should be adapted and additionally funded to collect and evaluate ultrasound data. Monitoring scientific literature alone will guarantee failure, as fetal ultrasound safety experts have been repeatedly turned down for grants and have stopped applying. Of particular concern is the timing of ultrasound, which was once cautiously confined to the second trimester but now is done as early as six weeks and right up to delivery.

c. Research priorities.
Every effort should be made to spur research to discover whether ultrasound exposure increases the risk of autism, making it a top priority. In view of the number of unborn children exposed to routine ultrasound scans every day, time is of the essence. Although doctors almost universally rely upon ultrasound screening to estimate gestational age and check for obvious defects, a large randomized study of more than 15,000 pregnant women showed that among both low-risk and high-risk mothers, as well as in situations with multiple gestations or major anomalies, ultrasound screening did not result in improved pregnancy outcomes (Ewigman, B.G., et al. 1993. Effect of Prenatal Ultrasound Screening on Perinatal Outcome. N Engl J Med 329(12):821-"27). While it is believed that the thermal effects of ultrasound are not sufficient to cause birth defects, heat can change gene expression without changing the genes themselves. This would explain why genetic research has not yielded more answers.

Respondent 0140

a. Gaps and underrepresented research areas.
That same as Question 1

b. New opportunities.
-The role of bioaccumulation of toxic and the loss of essential elements in ASD -The development of an adequate testing to properly detect, diagnose and confirm bioaccumulation of toxic elements and alterations in the management of the essential ones and others(Ca/Mg/Zn/Fe/Cu/Se) beyond the known ones. -The role of protein mismanagement (including gluten and casein) in the element bioaccumulation status -The inflammatory and oxidative stress biomarkers in ASD and the connection with bioaccumulation of toxic elements -The gastrointestinal issues in ASD. not studied by phone interviews or records analysis but with the actual biochemical, metabolic and adequate and ethically appropriate testing of ASD subgroups. -The nutritional aspects in ASD beyond pica and selection of food: the role of Selenium and vitamin D3 in health status in ASD -The analysis of encephalopathies related to vaccines given in combination and/or bacterial/viral /fungal co-infections in ASD.

Respondent 0141

a. Gaps and underrepresented research areas.
Cause and prevention research should not be aimed at ASD in general, but specifically at the disabling elements of ASD. There are a lot of strengths inherent in Autistic neurology. In some individuals, it may be difficult for most people to see these strengths if challenges are more readily apparent. If Autism genes were eliminated from the gene pool, it would be a disaster for humanity. Instead of preventing autism, let's prevent suffering. Study the brain not to figure out what causes autism, but to figure out how autistic people learn best. Figure out what causes sensory, social, and communication problems, and how to lessen the disabling aspects of them, without getting rid of accompanying the gifts.

b. New opportunities.
A major cause of the suffering of Autistic people comes not from within themselves, but from society. Some Autistic people are disabled not because of who they are, but from lack of support, services, and options to live in society. It is disabling to have minimal verbal skills because people expect you to speak. If people were more aware and accepting of alternative modes of interaction, it might not be such a disability. Let's cure and prevent ignorance, hatred, and discrimination.

Respondent 0146

a. Gaps and underrepresented research areas.
Recommend study to determine whether we can identify risk factors in parents of children with ASD. For example, we know that the mother's use of alcohol during pregnancy may lead to FAS. Are there other factors, not related to genetics, that effect the rate of ASD? Are parents taking certain prescribed medications? Are there higher incidences in certain geographical areas and if so, why?

Respondent 0148

a. Gaps and underrepresented research areas.
Research topics that are underrepresented are studies of early sensory-motor dysfunction that is strongly associated with ASD. Next, we need to better understand how the primary caregiver's response to atypical infant behaviors impacts on the infants' overall development when developmental delays are better established as the infant grows.

b. New opportunities.
We can learn if neonatal care may prevent babies with sensory integration dysfunction from a later ASD diagnosis.

c. Research priorities.
Developing an efficient, standard protocol for examining infants individual differences in the sensory integration realm that can be taught, attain reliability, and be employed in the first days of life.

Respondent 0151

a. Gaps and underrepresented research areas.
It appears to cover the desired topics. I would like to see additional studies on the vaccine / ASD link in coordination with a genetic pre-disposition to autism.

b. New opportunities.
To gather genetic data to enhance the study of the likely link to ASD, I recommend the government support funding for the gathering of this data. Parents of autistic children are already spending so much and often are limited to single income. Studies that do not directly benefit the child but benefit the cause should be supplemented by government funding.

c. Research priorities.
I would like to see additional research on the vaccine / ASD link in coordination with the possibility of a genetic pre-disposition. Studies should be coordinated internationally and the Defeat Autism Now doctors and scientists should provide recommendations for study based on observations of many cases.

Respondent 0152

a. Gaps and underrepresented research areas.
The etiology of autism is not clear. Some prenatal factors are thought to be responsible for ASDs are maternal rubella during pregnancy, tuberous sclerosis, fragile X syndrome, and brain abnormalities like hydrocephalus. Few perinatal factors appear to be directly related, though one study shows that about one-quarter of babies born prematurely had signs of autism on a screening test performed between 18 and 24 months of age. Some postnatal conditions are associated with ASDs as well. These are untreated phenylkentonuria, infantile seizures, encephalitic, and rarely some kinds of focal brain lesions. There are other studies suggesting that genetics plays a causal role. In families with identical twins, if one twin is autistic, there is a 75% chance that the other will be affected as well. With fraternal twins this percentage drops to only 3%. In families with one instance of ASD the chance that the second child will be born with an ASD is between 2 and 8 percent.

b. New opportunities.
Clearly, there is much work yet to be done in determining the etiology of the Autistic Spectrum Disorders. Neuro-biological research is only beginning, and needs to be extensively and aggressively pursued. Although the hypothesis that vaccines containing thimerosal have caused ASDs has pretty much been disproven, there are still a number of other conditions, such as digestive tract changes, diet, and the effective metabolism of vitamins and minerals that have been hypothesized as contributors to ASDs, but nothing has been proven. Even geographical location has been considered as a trigger of ASDs. In California alone, the number of autistic children has more than quadrupled between 1987 and 2002. A rural town in Alabama is asking why they suddenly have ten cases of autism when there were none before. No ironclad relationship between a particular location and ASDs has been established. Is this just an artifact of our more specific definitions of ASDs or not?

c. Research priorities.
Until recently the diagnosis of the ASDs did not occur until a child turned two or possibly three even though by 18 months families usually suspect that something is wrong. Approximately 25% of children seen in any primary care practice exhibit developmental issues, but fewer than 30% of primary care providers utilize standardized screening tests at regularly scheduled well-child appointments. Pediatricians are limited in their diagnostic opportunities by the fact that they actually see the child only for brief periods and because they are used to relying on conventional classification systems such as the DSM-IV TR. Often it is the concerns of the mother that are pivotal in getting a pediatrician to assess a baby for developmental deviance. Doctors rely extensively on anecdotal reports from parents, who may or may not be accurate reporters of early communicative milestones.

Respondent 0153

a. Gaps and underrepresented research areas.
Disrupted neurogenisis due to ultrasound events and correlations with increased rates of ASD. ref: 1. Ang, E.S., Jr., et al. 2006. Prenatal exposure to ultrasound waves impacts neuronal migration in mice. PNAS 103(34): 12903-10. www.pnas.org/cgi/content/abstract/103/34/12903?maxtoshow This link exits the Interagency Autism Coordinating Committee Web site. Accessed 11 Aug 2006. 2. Keiler, H., et al. 2001. Sinistrality: a side-effect of prenatal sonography: A comparative study of young men. Epidemiology 12(6): 618-23; Campbell, J.D., et al. 1993. Case-controlled study of prenatal ultrasonography exposure in children with delayed speech. Can Med Assoc J 149: 10, 1435-40.

b. New opportunities.
A wealth of prenatal medical records and records of autistic births.

c. Research priorities.
More highly prioritize a possible link between ultrasound events and intensity and children born with Autism Spectrum Disorder.

Respondent 0154

a. Gaps and underrepresented research areas.
Too many vaccines...too many antibiotics....weak immune system = AUTISM

b. New opportunities.
Stop OVER and UNNECESSARILY vaccinating children.

c. Research priorities.
Check titers to see if kids would even need the vaccine before blindly giving it.

Respondent 0157

a. Gaps and underrepresented research areas.
Information needs to be issued in a simple, understandable (i.e. not a lot of medical jargon) format listing factual information based upon the latest research and studies. Basic information on brain function and development and how autism impacts this process would also be useful. It would also be helpful to have information regarding efficacy research for each of the interventions.

Respondent 0161

a. Gaps and underrepresented research areas.
ENVIRONMENTAL CAUSES. There is an underlying genetic basis, we know that. Knowing exactly which gene predisposes one to autism is, frankly, useless--unless a parent is able to ACT on that knowledge by taking appropriate steps to lower their child's environmental risk. It is the environmental triggers that have led to this heartbreaking surge of damaged children, because there is no such thing as a genetic epidemic.

b. New opportunities.
Vaccines. Vaccines. Vaccines. It's not just about the MMR, and it's not just about autism. ALL autoimmune diseases are skyrocketing, and the only reason the autism parents are the only ones screaming is because having a child with celiac disease, or a life-threatening peanut allergy, is just not that big a deal. (I should know, they both run in our family as well. You know, because there is a genetic basis, after all--but we all experienced certain environmental triggers that my grandmother, great-grandmother, etc. didn't live through.) It may be a lifestyle change, but you still have your kid. With autism, the child you had is gone, forever. There needs to be serious examination of each vaccine on the schedule individually, the overall aggressiveness of the schedule, and MOST IMPORTANTLY, the role of adjuvants in immune dysfunction.

c. Research priorities.
Examining the safety of the Hepatitis B shot given at birth should be the number one priority. My newborn baby wasn't having casual sex, and he wasn't an IV drug user. There is NO REASON to give a baby just hours old a shot full of Hepatitis B and immune-altering adjuvants. Babies don't even have a working immune system for weeks, that's why it's critical to breastfeed, so the mother's antibodies are passed on.

Respondent 0168

b. New opportunities.
We need better clinical guidelines to help providers screen for potential indicators or risk. For example, if a family has one child with autism, is born preterm, or has older parents, heightened screening for autism and other developmental delays should be in place.

Respondent 0173

c. Research priorities.
Keep telling them that it is not the vaccine!

Respondent 0176

a. Gaps and underrepresented research areas.
Parents understand that ASD is a lifelong disability. Parents know that the infant, toddler or young child with ASD they presently see will grow into an adult with ASD. Anxiety about raising a child with a lifelong social-cognitive disability can be ameliorated or exacerbated by the level and frequency of biological and behavioral interventions used and by their effectiveness. Additionally, since a child with ASD becomes part of a care team assembled by Early Intervention Services or by the education system, the extent to which the care team assists the child in making progress by supporting intervention efforts and making services fully available to meet the child's needs greatly impacts the child. The extent which a child receives ENOUGH services with ENOUGH frequency and ENOUGH intensity greatly impacts his ability make progress. Care teams, especially in education, need to provide enough services with enough frequency and intensity to assist in overcoming deficiencies in ASD

b. New opportunities.
Children with ASD have pervasive, complex, and critical deficiencies in social-cognitive perception and assimilation. Fortunately, they are extremely intelligent and are therefore excellent candidates for intensive, appropriate biological and behavioral interventions. Support services should maximize independence and functionality by creating and enhancing social skills and understanding. Care teams, both Early Intervention and school-based, should assess and deliver enough services with enough frequency and intensity to effect measurable, linear growth and change every month. Functional communication and social skills goals including spoken or augmentative language (such as American Sign Language) for the nonverbal and perspective-taking (normalizing spoken and intuited communication skills) for verbal children should be accomplished by age 7. Daily after-school programs and ongoing home support must be developed and coordinated to meet the needs of children with ASD.

c. Research priorities.
Determine the priorities and effectiveness of Early Intervention Services and contrast these with the priorities and effectiveness of school-based therapies for the child with ASD who is becoming an adult. Develop care teams delivering biological and behavioral interventions that have measurable, linear developmental results every month, including functional communication skills (as described above) by age 7. Age 7+, build these skills so that each child with ASD can become an independent, fully-functional member of society by age 18. Deliver services with enough frequency and intensity to overcome deficits inherent in children with ASD, even if this means creating daily after-school programs where children can be grouped by developmental capacity and taught accordingly. Provide ongoing in-home support to parents of school-age children when their children get "stuck" so that a professional can assess and develop supports to assist the child and family in moving forward again.

Respondent 0177

a. Gaps and underrepresented research areas.
I think it is absolutely necessary that all of the ingredients in vaccinations be carefully examined and that the truth be told even if the outcome is not what the general public believes or wants to hear. It is time that parents stop being treated like they are crazy for believing vaccinations are a factor. I also believe that if parents continue to vaccine despite research results they need to use a vaccine schedule that is more spread out, one shot at a time and to wait until the child is older and their immune system is more developed and stronger to handle the vaccinations. I absolutely believe this is underrepresented and it always has been. The focus should be the truth and protecting our children not protecting the companies that provide and manufacture vaccines.

Respondent 0181

a. Gaps and underrepresented research areas.
III. What Caused this to Happen and Can this be Prevented? We agree again that both genetic and environmental factors must be researched. We were pleased to see equal consideration of those who believe: 1) vaccines do not play a causal role argue against using a large proportion of limited autism research funding, 2) prior studies of the possible role of vaccines in ASD have been insufficient, and 3) those who shift focus away from vaccines and onto much-needed attention toward the development of effective treatments, services and supports for those with ASD. We disagree with only consideration of causation by vaccination through exposure to Measles Mumps Rubella (MMR)”, as autism was listed by FDA in the adverse events on the DPT (www.fda.gov/downloads/BiologicsBloodVaccines/Vaccines/ApprovedProducts/ucm101580.pdf http://tinyurl.com/klxcug). We were pleased to see recent IACC collaboration with the National Vaccine Advisory Committee. continue...

b. New opportunities.
Until this controversy is resolved, fear will cause herd immunity to decrease which is a public health risk.

Respondent 0187

a. Gaps and underrepresented research areas.
Again, research on nonverbal ASD individuals is needed, and none has been done. There are no doubt many research projects that could be utilize AGRE genetic material, involving families with nonverbal ASD children. No research is being done on nonverbal ASD. This is a critical area that needs research.

Respondent 0194

a. Gaps and underrepresented research areas.
The strategic plan not only stresses the genetic complexity of the disorder, but also the numerous environmental components that may contribute to the cause, course, severity, or complexity of ASD. Unfortunately, to date, most researchers have aimed to study one environmental factor at a time. While this is an important and key step in the search for environmental factors with the highest impact, we encourage more research to study the role of multiple genes and multiple environmental factors, both in animal and cell culture models, as the logical and much needed next step to accelerate progress. Gene x environment interactions are, at best, difficult to sort out in simple diseases. For success in autism, more research is needed on methodology or ways to design studies utilizing the knowledge in epidemiological or animal models.

b. New opportunities.
As higher resolution data on an ever increasing number of subjects are collected, there are additional scientific opportunities to explore, especially in special populations like simplex families and infant siblings of affected individuals. For instance, correlation of genetic profile with rich, longitudinal phenotypic data may yield insight about phenotype-genotype correlation. Similarly, focusing on de novo variations (e.g. CNV) in simplex families may lead to hints about gene-environment interactions.

c. Research priorities.
It is generally agreed that both genetic and environmental factors contribute to risk for autism. Although it has yet to be demonstrated, it is plausible that specific genetic or medical factors that are present in a minority of individuals of autism might also lead to susceptibility to vaccine related adverse events. Autism has been found to be associated with inherited metabolic diseases which might lead to vulnerability for adverse events. Furthermore, recent studies point to a role of innate immune abnormalities in the biology of autism, raising questions about the effects of the immune challenges associated with vaccinations. It is recommended that a research objective be included that focuses on understanding whether vaccines, alone or in combination, can increase the risk for autism in a minority of individuals with specific genetic or medical conditions.

Respondent 0200

a. Gaps and underrepresented research areas.
Is being nonverbal physical as well as mental? Why?

Respondent 0202

a. Gaps and underrepresented research areas.
What caused this? having no voice and less attention to those who cannot speak for themselves

Respondent 0203

a. Gaps and underrepresented research areas.
Environmental concerns

Respondent 0210

a. Gaps and underrepresented research areas.
Ensure studies allow for the use of mixed methodologies so that data collection allows for qualitative data such as interviews, case studies, observation, and open-ended responses to add rich, narrative and themes to the quantitative collections. Adults with ASD and the families that support and continue to support them are critical and should have adequate representation in any data set reflective of the proposed studies on causality and preventions.

Respondent 0211

c. Research priorities.
Priorities should be moved from genetic, since genes cannot be changed to environmental and medical toxicity which are rapidly changing with the increasing prevalence of autism.

Respondent 0213

a. Gaps and underrepresented research areas.
Nonverbal and low-communicating individuals with autism, (often referred to as low-functioning), have been almost entirely excluded from federally funded research. The nonverbal subgroup represents about 15-20% of the autism spectrum and yet there is no research focused specifically on them. When you combine the nonverbal group with those who can speak but are unable to communicate (low-communicating), this adds up to approximately 50% of the autismspectrum population, yet they are not represented in current research nor is there any research specifically focused on them.

b. New opportunities.
Because research on nonverbal/low-functioning individuals has been limited in the past, there is are fewer pilot studies and researchers available in this area. Offering funding for research studies and to train investigators would address this.

c. Research priorities.
Research funding MUST reflect the demographics of the populations it serves. Low-functioning individuals must be included.

Respondent 0215

a. Gaps and underrepresented research areas.
Missing is specific research conducted with nonverbal or minimally-verbal individuals with autism. I'd like to see more attention paid to this specific group with the goals of effective intervention/treatments AND possible pre-natal or genetic testing so that my typical child can make more informed child-bearing decisions.

b. New opportunities.
Same as above.

c. Research priorities.
Same as above.

Respondent 0222

a. Gaps and underrepresented research areas.
More research into causes and prevention related to nonverbal or low-communicating individuals with autism.

Respondent 0237

a. Gaps and underrepresented research areas.
There is scientific evidence that prenatal ultrasound may be causing autism. (http://tinyurl.com/ofpfh3 This link exits the Interagency Autism Coordinating Committee Web site).

b. New opportunities.
Studies that seek environmental risk factors for autism investigate delivery complications, folic acid levels, water and air quality, plastic toys and bottles, paint, flooring, and everything under the kitchen sink but NONE include examining maternal ultrasound histories.

c. Research priorities.
Every effort should be made to spur research to discover whether ultrasound exposure increases the risk of autism, making it a top priority. In view of the number of unborn children exposed to routine ultrasound scans every day, time is of the essence.

Respondent 0240

a. Gaps and underrepresented research areas.
Please consider the possibility that pre-natal ultrasound may be a risk factor for autism.

Respondent 0244

a. Gaps and underrepresented research areas.
No additional comments...

b. New opportunities.
Under Bullet # 3 add the following: Treatment and interventions should be initiated as soon as a diagnosis of ASD has been identified. An Early Intervention Program would be helpful in offering individualized care for infants and toddlers 0-3 years of age who experience a 25% delay in one or more of the five developmental areas: cognitive, vision/hearing, communication, social/emotional and adaptive. Head Start and school based services should also be available.

c. Research priorities.
No additional comments...

Respondent 0245

a. Gaps and underrepresented research areas.
Many nonverbal autistic children have written books and started speaking when they were teenagers or adults. Do you all know this? If not Google this topic so you don't make the same mistake again and start respecting the fact that Autism is a Spectrum: You can't leave out part of the spectrum.
.

Respondent 0246

a. Gaps and underrepresented research areas.
Heavy metal toxicity = symptoms of autism

Respondent 0251

a. Gaps and underrepresented research areas.
an impartial look into the impact of heavy metal burdens in susceptible sub populations.

b. New opportunities.
better diagnosis, diagnostic and testing methods.

c. Research priorities.
Look for commonalities among effected individuals.

Respondent 0257

c. Research priorities.
a. What relevant research topics are missing or underrepresented in section II. "How can I understand what i

Respondent 0258

a. Gaps and underrepresented research areas.
I have read intriguing research that indicates a possible correlation between pre-natal ultrasound and ASD. I am concerned that policy makers and health care specialists are not doing enough to investigate a link between ultrasound and ASD.

Respondent 0262

a. Gaps and underrepresented research areas.
I think your research agenda covers the relevant and likely causes.

c. Research priorities.
Vaccines are a controversial issue, complicated by the fact that there are a few well-documented and legitimate cases of vaccine injury that lead to long-term learning disorders. While I do not support major additional research into vaccine-related causes for autism, I feel that some researchers have closed their minds to the possibility of an environmentally-induced auto-immune problem. As genetic causes are rooted out, I think it is important to keep these possible mechanisms in mind, even if they are reminiscent of vaccine-related research.

Respondent 0264

a. Gaps and underrepresented research areas.
I am a family member of a 15-year-old with autism. His mother has always felt that a prolonged prenatal ultrasound performed by an inexperienced operator was probably the cause of her child's autism. A friend of mine who was a doctor with an international health agency was very interested in this idea. From my own personal reading, I am convinced that prenatal ultrasound may well be the cause of autism and should be a research priority.

b. New opportunities.
I feel that prenatal ultrasound has been in use long enough that a retrospective study, perhaps through an HMO such as Kaiser Permanente, could reveal a connection between prenatal ultrasound and autism. This area should be thoroughly explored for the benefit of millions of babies who are routinely exposed to an imaging technology that may not be reliably safe.

c. Research priorities.
The possible dangers of prenatal ultrasound should be a top research priority. The IACC should do everything within its power to encourage research in this critical area, which has been neglected for many years. Waiting for studies to review is not enough -- prenatal ultrasound research must be actively solicited and funded.

Respondent 0266

a. Gaps and underrepresented research areas.
There is scientific evidence that prenatal ultrasound may be causing autism. A 1982 World Health Organization report documenting a symposium on the bioeffects of ultrasound, in its Human Fetal Studies summary, declared animal studies suggest that neurological, behavioral (sic), [and] developmental . . . changes . . . can result from exposure to ultrasound . . . (http://tinyurl.com/klxcug This link exits the Interagency Autism Coordinating Committee Web site). In 2006, Yale neuroscientist Pasko Rakic showed that pregnant mice exposed to prenatal ultrasound produced offspring with brain anomalies consistent with those found in autopsied autistics (http://tinyurl.com/ofpfh3 This link exits the Interagency Autism Coordinating Committee Web site). At present, the Strategic Plan only calls for the possibility of monitoring scientific literature regarding ultrasound, which does not show due diligence in pursuing all possible causes of autism. Previous safety studies indicating prenatal ultrasound is safe no longer apply due to major changes in ultrasound applications, technology and the gestational window of exposure.

b. New opportunities.
Studies that seek environmental risk factors for autism investigate delivery complications, folic acid levels, water and air quality, plastic toys and bottles, paint, flooring, and everything under the kitchen sink but NONE include examining maternal ultrasound histories. This was also missing in the 2000 CDC Community Report on Brick Township, New Jersey, which sought an explanation for an apparent autism cluster. Cohort matched retrospective studies could yield telling information in a fairly short amount of time. Also, current environmental studies should be adapted and additionally funded to collect and evaluate ultrasound data. Monitoring scientific literature alone will guarantee failure, as fetal ultrasound safety experts have been repeatedly turned down for grants and have stopped applying. Of particular concern is the timing of ultrasound, which was once cautiously confined to the second trimester but now is done as early as six weeks and right up to delivery.

c. Research priorities.
Every effort should be made to spur research to discover whether ultrasound exposure increases the risk of autism, making it a top priority. In view of the number of unborn children exposed to routine ultrasound scans every day, time is of the essence. Although doctors almost universally rely upon ultrasound screening to estimate gestational age and check for obvious defects, a large randomized study of more than 15,000 pregnant women showed that among both low-risk and high-risk mothers, as well as in situations with multiple gestations or major anomalies, ultrasound screening did not result in improved pregnancy outcomes (Ewigman, B.G., et al. 1993. Effect of Prenatal Ultrasound Screening on Prenatal Outcome. N Engl J Med 329(12):821-"27. While it is believed that the thermal effects of ultrasound are not sufficient to cause birth defects, heat can change gene expression without changing the genes themselves. This would explain why genetic research has not yielded more answers.

Respondent 0268

a. Gaps and underrepresented research areas.
What caused this to happen was fear. People in positions of academic power were unwilling or unable to openly admit that something out of the ordinary or even miraculous by our current understanding of consciousness was occurring. By speaking in half-truths, and performing repetitive studies about what was occurring and refusing to address or explain the difficult questions has lead us further from the truth and been a great disservice to these magnificent teachers. It is time to listen! You will not be disappointed.

b. New opportunities.
Let me demonstrate or be part of the team. I will be able to see what you may not see. I will tell the whole truth of my experience. I will share my suppositions. I believe it will save you much time and energy as this has been field of study and my personal obsession and advocacy for the past twenty years. What I have to share is correlated experiences with many different individuals with severe nonverbal autism, who taught me way more than I could have ever taught them. I would like to share what I know for the benefit of these magnificent individuals and those determined to have a better understanding of their perceptual reality. We have so much to learn.

c. Research priorities.
Exploring an evolving form of the Telepathy is mandatory. 1. Sending words/ simple images 2. Breakdowns that occur at the concrete level 3. Partnership in FC or partner dependent typing

Respondent 0269

c. Research priorities.
If you combine the nonverbal group with the low verbal group, it is almost 50% of the kids with ASD

Respondent 0270

a. Gaps and underrepresented research areas.
Please consider allocating funds for research for people with severe autism who do are nonverbal. This subset is the most vulnerable group and in addition requires the most care. Please be equitable in your quest to find a cure for this dreaded affliction.

Respondent 0276

a. Gaps and underrepresented research areas.
Once again, there is a need to focus research on individuals in the lower end of the spectrum.

Respondent 0292

a. Gaps and underrepresented research areas.
More research on Mercury levels in food and how that relates to autism numbers rising. Not only mercury but other heavy metals as well need to be checked and compare the levels of metals to the severity of the condition. Many ways of testing need to be done. If you check only hair samples you won't find many metals in autistic people because they can't excrete them, they are staying in their bodies. Blood, fecal, urine etc. all need to be tested, doing both a pre test, then a post after using a chelator of some form. Also testing needs to be done on nonverbal autistics as well, there is a lot going on in their brains that they just can't verbalize. These people have no voice so they need focused on heavily so they can get better and be able to communicate.

b. New opportunities.
The DAN (Defeat Autism Now) group was not mentioned. Their protocol should be included and studied for effectively curing autism. It covers many aspects and should be considered for study. Also nothing is mentioned about the gut. Research on this is very important and not really ever talked about. Candida overgrowth is a problem in most asd people but i didn't see it covered. Candida is a problem that has to be researched!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!Gut health affects about 85% of the overall health of a person's body, if it is compromised then there will be lots of other problems. Also toxin levels are extremely relevant to behavior, speech, etc. That is a huge concern. More needs to be done on research of the safety of the vaccines and the need for so many so soon. The drug companies put 3(ex. mmr) together to save $$$$$$$ not to help our kids and the doctors like it because it is one visit and not 3 and the insurance companies like it for the same reasons.

Respondent 0294

a. Gaps and underrepresented research areas.
The push for getting autistic people to speak is valid. But when speech does not develop there is no planning or action to understand non-communication.

b. New opportunities.
start developing research protocols for such intense study now.

c. Research priorities.
As before, start by investigating the levels and types of receptive language in the nonverbal people with autism.

Respondent 0297

a. Gaps and underrepresented research areas.
Until now there has not been a unified effort to advocate for those who are nonverbal or low-communicating. So now is a great time to begin our efforts to advocate for this group. Sadly, in spite of the huge gains that have been made in the past decade, our kids have not been benefited and there are still almost no interventions that work for our kids and no research to better understand the nonverbal and low-communicating population, their cognitive abilities, genetic characteristics, educational needs or to develop successful interventions. Perhaps most importantly this population needs communication interventions and at present there is no research being done in this area.

b. New opportunities.
Until now there has not been a unified effort to advocate for those who are nonverbal or low-communicating. So now is a great time to begin our efforts to advocate for this group. Sadly, in spite of the huge gains that have been made in the past decade, our kids have not been benefited and there are still almost no interventions that work for our kids and no research to better understand the nonverbal and low-communicating population, their cognitive abilities, genetic characteristics, educational needs or to develop successful interventions. Perhaps most importantly this population needs communication interventions and at present there is no research being done in this area.

c. Research priorities.
Until now there has not been a unified effort to advocate for those who are nonverbal or low-communicating. So now is a great time to begin our efforts to advocate for this group. Sadly, in spite of the huge gains that have been made in the past decade, our kids have not been benefited and there are still almost no interventions that work for our kids and no research to better understand the nonverbal and low-communicating population, their cognitive abilities, genetic characteristics, educational needs or to develop successful interventions. Perhaps most importantly this population needs communication interventions and at present there is no research being done in this area.

Respondent 0300

a. Gaps and underrepresented research areas.
Understanding the relationship between Motor Planning Disturbance and communication for the nonverbal and low-communicating population.

Respondent 0306

a. Gaps and underrepresented research areas.
Its environmental, no doubt. Look at autoimmune issues, perhaps in moms who were vaccinated 25 years ago... passed down to kids, damaging their dna so that the kids were more susceptible.

b. New opportunities.
look at the kids in the Amish community who have never had vaccines in their family history.

c. Research priorities.
find what's wrong w/our kids.

Respondent 0307

a. Gaps and underrepresented research areas.
Hey, how can autism be prevented? Answer- stop injecting our children with toxic substances to "protect" them from these scary diseases, like chicken pox.

b. New opportunities.
I think I have made my point.

c. Research priorities.
GET SOME UN BIASED STUDIES ON VACCINES AND WHETHER THERE IS A LINK BETWEEN THEM AN AUTISM. Again, no drug companies or vaccine makers involved, and no vaccine scientists or family members of vaccine makers involved. IT IS SO UNETHICAL!! Right Tom?

Respondent 0309

a. Gaps and underrepresented research areas.
VACCINATED VS. UNVACCINATED COHORTS. This has not been done since all of the new vaccines were added. It needs to be done!

b. New opportunities.
Use the younger siblings of kids with ASD who are unvaccinated. That way there is no ethical dilemma, Dr. INSEL!!!

c. Research priorities.
All priorities need to be fast-tracked! The numbers continue to rise and that has not caused you to move any faster! WE NEED HELP NOW! WE ARE LOSING A GENERATION!

Respondent 0310

a. Gaps and underrepresented research areas.
Again, there is no such thing as a genetic epidemic. While mention is made of a "dialogue" with NVAC, there are no specific details nor is any study of possible vaccine injury mentioned.

b. New opportunities.
Investigate vaccines and their components and their scheduled administration

c. Research priorities.
Don't have a "dialogue." Fund the study of vaccinated versus unvaccinated children.

Respondent 0312

a. Gaps and underrepresented research areas.
Where is Defeat Autism Now? Where is TACA? Where is the National Autism Association? Autism Speaks is the biggest autism research org in the world, by far, yet IACC did not allow them a seat in a category that is essentially about what is causing autism?

b. New opportunities.
IACC must study vaccine safety, vaccine adjuavants and the effect of so many combination vaccines on an infant's central nervous system. WHY is that entire subject off the table when the vast majority of autism families want it studied by IACC. Why have Insel, Singer, etc. personal biases determined the closing of this avenue of research for every American family? Just because they have no experience with regression and adverse vaccine reactions they do not exist?

c. Research priorities.
Addressing medical conditions now! Why is Alsion Singer a liaison here rather than Lyn Redwood. Redwood is a pediatric nurse with 15 yrs experience leading autism organizations and innovating and funding medical research via SM. Singer has a classically autistic child and sibling and no experience at all dealing with a child who has regressed, a child with medical complications, a child with severely debilitating allergies. Singer was a communications specialist - she is not a scientist or a medical professional. How could Lyn Redwood- the sole public member and health professional not be chosen here? That was such an irresponsible choice. What is Story Landis' expertise in autism? During IACC meetings she seems very unfamiliar with the latest research and therapies.

Respondent 0316

a. Gaps and underrepresented research areas.
Vaccine makers haven't been held accountable. THAT is what's caused this to happen. It doesn't help that the television news media is sponsored almost exclusively by the pharmaceutical industry.

b. New opportunities.
Do a vaccinated versus unvaccinated study. Look at the incidence of ASD as well as other chronic disorders, for both populations. Make sure it's done fairly, by people without conflicts of interest!

Respondent 0318

a. Gaps and underrepresented research areas.
No Comment

b. New opportunities.
I agree with this view: A third view urges shifting focus away from vaccines and onto much-needed attention toward the development of effective treatments, services and supports for those with ASD. I believe that more research should be aimed at the RDI model specifically.

c. Research priorities.
No Comment

Respondent 0321

a. Gaps and underrepresented research areas.
I would seriously recommend all public health authorities read Dr. Charles Richet's Nobel Prize award winning speech "Anaphylaxis"...wherein Dr Richet suggests the "scientific likelihood of creating a "one size fits all vaccine" is minimal at best..more likely...undoable.

Respondent 0322

a. Gaps and underrepresented research areas.
REINSTATEMENT OF THE PREVIOUSLY APPROVED VACCINATED/UNVACCINATED STUDY AT A COST OF $6 MILLION. OBJECTIVES RELATING TO THE RESEARCH AND EVALUATION IN INFANTS OF EARLY COMORBID BIOLOGIC SYMPTOMS, SUCH AS GASTROINTESTINAL, ALLERGIC, DERMATOLOGIC, CHEMICAL/HEaVY METAL EXPOSURE, AND MITOCHONDRIAL DYSFUNCTION AS PREDICTORS OF AUTISM. OBJECTIVES RELATING TO THE RESEARCH AND EVALUATION IN INFANTS AND CHILDREN OF MEDICAL TREATMENTS FOR SUCH COMORBID CONDITIONS LISTED ABOVE, AND THE EFFECTS OF SUCH TREATMENTS ON AUTISM SYMPTOMS.

b. New opportunities.
REINSTATEMENT OF THE PREVIOUSLY APPROVED VACCINATED/UNVACCINATED STUDY AT A COST OF $6 MILLION. OBJECTIVES RELATING TO THE RESEARCH AND EVALUATION IN INFANTS OF EARLY COMORBID BIOLOGIC SYMPTOMS, SUCH AS GASTROINTESTINAL, ALLERGIC, DERMATOLOGIC, CHEMICAL/HEAVY METAL EXPOSURE, AND MITOCHONDRIAL DYSFUNCTION AS PREDICTORS OF AUTISM. OBJECTIVES RELATING TO THE RESEARCH AND EVALUATION IN INFANTS AND CHILDREN OF MEDICAL TREATMENTS FOR SUCH COMORBID CONDITIONS LISTED ABOVE, AND THE EFFECTS OF SUCH TREATMENTS ON AUTISM SYMPTOMS.

c. Research priorities.
REINSTATEMENT OF THE PREVIOUSLY APPROVED VACCINATED/UNVACCINATED STUDY AT A COST OF $6 MILLION. OBJECTIVES RELATING TO THE RESEARCH AND EVALUATION IN INFANTS OF EARLY COMORBID BIOLOGIC SYMPTOMS, SUCH AS GASTROINTESTINAL, ALLERGIC, DERMATOLOGIC, CHEMICAL/HEAVY METAL EXPOSURE, AND MITOCHONDRIAL DYSFUNCTION AS PREDICTORS OF AUTISM. OBJECTIVES RELATING TO THE RESEARCH AND EVALUATION IN INFANTS AND CHILDREN OF MEDICAL TREATMENTS FOR SUCH COMORBID CONDITIONS LISTED ABOVE, AND THE EFFECTS OF SUCH TREATMENTS ON AUTISM SYMPTOMS.

Respondent 0323

a. Gaps and underrepresented research areas.
Vaccinated vs. Unvaccinated population study. My daughter regressed immediately after a flu vaccine she received the month of her second birthday. Within days she lost potty training, began having mini seizures, developed very pronounced sound sensitivity, developed chronic ear infection 3 days after the shot, developed extreme car sickness, became afraid to engage in gross motor play activities that she had previously engaged in vigorously (playground type activities), developed severe gut pain and chronic constipation and diarrhea. Her sensory/behavioral regression continued steadily over the following 13 months until we started biomedical intervention just after her third birthday. She responded immediately to treatment and today, at almost 7, is recovered. After review of her medical records from birth to two years, there was a pattern of immediate follow-up to the doctor within one to two weeks of most well baby visits. I believe she experienced several vaccine injuries.

b. New opportunities.
My second child is completely unvaccinated. At two he is thriving both developmentally and physically. The opportunity is to reinstate the two studies Insel stripped out of the strategic plan. 1 study the effects of vaccines and their components and the multiple administration...cell and animal studies to determine adverse effects 2. the feasibility study for the vaccinated vs. unvaccinated study. Also add to the plan all autism related research recommended by NVAC. through I believe there are many potential environmental aluminum, mercury, bpa. Our children suffer environmental insults from external exposures and through medical interventions. Where vaccines are concerned, It's time we get this right...the proper control is a comparison to those who have never received vaccination and a study of the children who developed autism and their mulitfactoral conditions.

c. Research priorities.
First, Tom Insel should step down. He removed vaccine studies from the strategic plan based on conflicts of interest held by HHS and then we learn he has personal conflict. This man has lost the confidence of the great majority in the autism community. He tellsSen. Harkin that more vaccine research is a waste of money yet NVAC clearly stated the gaps and limitations in existing study and supports a vaccinated vs. unvaccinated study. His comments to Harkin were at least inexcusable and possibly criminal. Autism can be prevented. We have climbed to 1 in 100 children with autism. 1 in 65 when you account for those who have lost their diagnosis. If the rate is climbing so rapidly something is causing it and it is high time we treat this with the urgency it deserves. We need, first need vaccine research that compares the proper control, the unvaccinated and we need studies of those who got sick

Respondent 0324

c. Research priorities.
These priorities appear appropriate. I do not believe that additional research is needed regarding the link between vaccines and autism. Again, the amount of money being targeted towards discovering the cause appears disproportionate to the amounts being targeted towards effective intervention and support for those living with ASD. Recommend more balance in funding.

Respondent 0325

a. Gaps and underrepresented research areas.
See previous

b. New opportunities.
See previous

c. Research priorities.
See previous

Respondent 0326

a. Gaps and underrepresented research areas.
We need a vaccinated/unvaccinated study to fully determine the possible causal role of vaccinations in the autism epidemic as well as other chronic health issues from which our children suffer.

b. New opportunities.
Unvaccinated populations exist throughout this country, including home school populations, which could be used in such a study without creating an ethical dilemma for researchers.

c. Research priorities.
An unvaccinated/vaccinated study that looks at health outcomes, including autism, ADHD, asthma, and other chronic childhood illnesses, is top priority.

Respondent 0327

a. Gaps and underrepresented research areas.
My research on the topic indicates that an observational study of vaccinated and unvaccinated children needs to be completed in order to satisfy those groups who continue to blame vaccines for ASD. Researchers must also be cognizant of environmental conditions, such as proximity to environment toxin emitters (i.e. coal-fired power stations) and a diet high in apex predators, such as tuna.

Respondent 0328

a. Gaps and underrepresented research areas.
Studies of vaccines as a causal agent in autism. Studies of vaccinated versus unvaccinated populations. Gastrointestinal scoping of ASD children, in lieu of O'Leary lab and others' biopsy findings of vaccine-strain measles in lesions lining the GI mucosa. Titers tests of children with immune dysfunction.

b. New opportunities.
Studies of vaccines as a causal agent in autism. Studies of vaccinated versus unvaccinated populations. Gastrointestinal scoping of ASD children, in lieu of O'Leary lab and others' biopsy findings of vaccine-strain measles in lesions lining the GI mucosa. Titers tests of children with immune dysfunction.

c. Research priorities.
Studies of vaccines as a causal agent in autism. Studies of vaccinated versus unvaccinated populations. Gastrointestinal scoping of ASD children, in lieu of O'Leary lab and others' biopsy findings of vaccine-strain measles in lesions lining the GI mucosa. Titers tests of children with immune dysfunction.

Respondent 0329

a. Gaps and underrepresented research areas.
same

Respondent 0331

a. Gaps and underrepresented research areas.
We want the vaccinated vs. unvaccinated study done ASAP. It is just shameful that this is not being done.

Respondent 0334

a. Gaps and underrepresented research areas.
we don't have much time.

Respondent 0335

a. Gaps and underrepresented research areas.
Autism Parents need to listen to the research community on this subject. If the real research is telling us to look elsewhere than vaccines, we need to do that. This is the case right now. The questions raised by vaccines were thimerosal and MMR. They have been tested multiple times. We have a limited budget and a limited number of research groups. "Too many, too soon" is not a research hypothesis. Until and unless a good hypothesis about vaccines arises, we need to focus attention elsewhere. Research into vaccine causation is not without costs. The main cost isn't money and it isn't researcher time. The main cost is in giving credence to an idea which is very harmful to autistics and to public health. Research should be driven by science, not politics. At present, the vaccine question is political, not scientific.

Respondent 0337

a. Gaps and underrepresented research areas.
- Identify genotypes - Identify, if any, environmental factors that might trigger ASD

Respondent 0340

a. Gaps and underrepresented research areas.
Vaccines have to be researched. I have read the research that the CDC, FDA and others cite when they say that the vaccines question has been answered. I can see the shortcomings of this research and understand how these studies simply do not stand up to scrutiny.

b. New opportunities.
The vaccine-related studies previously removed should be restored: 1) "Study the effect of vaccines, vaccine components, and multiple vaccine administration in autism causation and severity through a variety of approaches, including cell and animal studies, and understand whether and how certain subpopulations in humans may be more susceptible to adverse effects of vaccines by 2011. Proposed costs: $6,000,000 2) Determine the feasibility and design an epidemiological study to determine if the health outcomes, including ASD, among various populations with vaccinated, unvaccinated, and alternatively vaccinated groups by 2011. Proposed costs: $10,000,000 Additionally, a primate study to replicate Hewitson's work should be performed.

c. Research priorities.
Again, I suggest less funding for genetic research - genetic research to date has become a never-ending, resource-consuming cycle of (1) The leads in the previous study didn't pan out, but (2) we found some new, promising leads, and (3) we need more money to investigate them.

Respondent 0342

a. Gaps and underrepresented research areas.
Do vaccines cause autism and can it be prevented by making safer vaccines?

b. New opportunities.
A large, unbiased, observational study of vaccinated versus unvaccinated children and their rates of autism.

c. Research priorities.
1-Do vaccines cause autism and can it be prevented by making safer vaccines? 2-Could an exposure to something in the environment lead to the development of ASD? 3-How might genetics and/or the environment influence the occurrence of ASD? 4-Is there something in my genetic or family history that poses a risk for ASD?

Respondent 0343

a. Gaps and underrepresented research areas.
* Antibodies to Myelin Basic Protein (MBP) have been found to be associated with the measles vaccine virus in the MMR in the damaged guts of children with ASD (V.K. Singh et al), thus triggering autoimmune reaction, damaging the protective lining of the cranial nerve systems. What can be causing this? One potential answer: the MBP as a contaminant in the chick embryo cells that the measles vaccine virus is cultured on, causing a molecular mimicry response in the child's immune system. The Honda/Rutter study out of Japan has been reviewed and shown to demonstrate a dose-response relationship of ASD to the MMR. This whole area needs further research. * The use of ultrasounds needs a major research initiative. Its safety is NOT established well. Its use has grown at the same time as the increase in incidence of ASD - and at earlier stages of pregnancy. This is a MUST area for further research. * The combination of thimerosal and aluminum in vaccines needs more research.

b. New opportunities.
* Another source of research needed is the effect of EMFs, particularly on the ability of cells to excrete mercury and other heavy metals. There is some evidence that that ability is hampered by the presence of EMFs, from mobile phones, etc. We need to advance our research and knowledge in this area. * The role of MSG/glutamic acid in both the diet and its presence in vaccines needs to be further researched. In the presence of vaccines, this excitotoxin comes in an inflammatory package to start with - NOT a good idea. This HAS to be putting an inflammatory load on the brain. And it is also lowered by a GF/CF diet; so that factor should be explored further. * The effect of pesticides is also an area of research need. In all this, I recommend a review of the material developed by Prof Richard Deth and Dr Russell L. Blaylock in particular. They have very important things to say about this matter; and Prof Deth should be supported in his ongoing lab research on ASD.

c. Research priorities.
Priorities: (1) The role of antibodies to MBP in relation to vaccines and their contaminants. (2) The potential role of ultrasounds (heating effect) in this tragedy. (3) The role of thimerosal/aluminum in vaccines, and their interaction with testosterone. (4) The role of MSG/glutamic acid in the development of ASD. (Glutamic acid lowers glutathione levels, which causes the body to be unable to excrete mercury/heavy metals efficiently.) (5) The role of genes coding for glutamic acid, which causes those children to be more susceptible to damage from environmental influences, like mercury/aluminum, etc. (6) The role of a genetic polymorphism that makes some children have lower levels of glutathione to start with, so that they could be spared from heavy-metal environmental influences on their development - ie, be screened from certain vaccines. (7) The role of other sources of mercury on the fetus, like amalgam fillings, fish, flu vaccines, etc. Screen pregnant women better!

Respondent 0345

a. Gaps and underrepresented research areas.
- more emphasis is needed on health outcomes of vaccinated/unvaccinated populations (retrospectively)

Respondent 0347

a. Gaps and underrepresented research areas.
This is so important. I have a nonverbal 24 year old who and a 26 year old who is nervous about having a family one day. My daughter loves her brother, but doesn't want to live my life. Please try to find out all the reasons these individuals are autistic and don't forget to look into why some have a more severe disability than others. Do not forget the nonverbal autistic.

c. Research priorities.
Don't forget the nonverbal autistic.

Respondent 0349

a. Gaps and underrepresented research areas.
My grandchildren got ASD from their vaccines. It can perhaps be prevented if vaccines and the toxins in them are truly studied and also children are tested somehow for vulnerability of damage from vaccines.

Respondent 0350

a. Gaps and underrepresented research areas.
Vaccinated vs. Unvaccinated studies need to done. And most definitely we need to examine the children who regressed after vaccination to try to find out what predisposes them to vaccine injury.

b. New opportunities.
We need to fund research into environmental triggers for autism.

c. Research priorities.
We need to stop pouring millions into genetic research and to make environmental triggers the priority.

Respondent 0353

a. Gaps and underrepresented research areas.
Environmental triggers need to be studied, including vaccines.

c. Research priorities.
My suggestions are to ensure that no one on the panel, including but not limited to the chair, have current or former ties to any of the environmental triggers that need to be thoroughly investigated - including the HiB vaccine. It is highly inappropriate for the investigation to be chaired by, or to include, the brother of a vaccine manufacturer, when one of the environmental factors that needs to be included, is childhood vaccines. http://www.ageofautism.com/2009/08/when-vaccine-development-is-family-business-thomas-insels-conflicted-role-on-vaccines-and-autism.html This link exits the Interagency Autism Coordinating Committee Web site

Respondent 0354

a. Gaps and underrepresented research areas.
Why can my son not talk but he has autism but so intelligent and has 100% understanding of receptive language and he cannot speak words? WHY NOT? If he could speak or communicate he could show how smart he is-- we NEED research for the 50% of our kids who cannot communicate or low communicators to find why and what will be cure to bring speech back

b. New opportunities.
He could speak when he was 1 and then it went away--WHY? We need research on WHY speech regresses until gone and research to BRING HIS VOICE BACK--

c. Research priorities.
If our kids with ASD would communicate basic wants and needs so many behaviors go away and they can lead more independent lives-- he NEED RESEARCH PLEASE

Respondent 0360

a. Gaps and underrepresented research areas.
The beliefs of thousands of parents that vaccines have caused the current epidemic have been totally ignored. We need unbiased leadership in determining what research should be funded. Insel should resign. His personal and professional ties to the vaccine industry should immediately disqualify him from such decision.

Respondent 0362

a. Gaps and underrepresented research areas.
This section glosses over the vaccine and autism issue and mentions the studies that have found no relationship between ASD and vaccines but does not mention the studies that HAVE found a relationship. That is worrisome, especially when parents are reporting that their children regressed into autism around the time of vaccination. When is IACC going to take these parents concerns seriously? Another worrisome factor is the conflict of interest that Tom Insel has regarding vaccines. At one point during his career, Mr. Insel worked in vaccine development. Dr. Insel's brother is also a vaccine developer. In fact, his brother helped develop one of the vaccines in question in the vaccine/autism debate.

b. New opportunities.
Parents are calling for vaccine research for several reasons. The first reason is that parents are reporting vaccine reactions in their children that is followed by a change in their child's development. The fact that these anecdotal are not taken seriously by IACC, AAP, and CDC is deeply concerning to parents. Perhaps years ago this stance could have been considered fringe, but no longer. There are simply too many parents that have witnessed the vaccine reaction followed by developmental regression. Secondly, most of these families are reporting the same type of medical problems once their children go through this regression. It would be easy to study these children to try to figure out why their health has suffered since vaccination. Third, many of these families have similar genetic familial backgrounds. Most report a history of autoimmune issues in their families. The goal to figure out which babies are at risk for vaccine reactions should be a priority.

c. Research priorities.
There has been millions spent on genetic research without much to show for it. I feel that some day we will be dealing with Autism(s) vs. Autism. There is evidence that we are, at the very least, dealing with two types of autism. One type that is evident at birth or soon thereafter. The other is a regressive type, which seems to account for most of the new cases. The first type may be the "classic" type that has reported on for 60 + years. And perhaps that is genetic or is due to a prenatal exposure of some sort. What is evident is that this classic type is getting all of the research dollars. The regressive type of autism accounts for most of the new cases and is most likely environmental. It makes more sense to spend the bulk of the research money on environmental causes of autism, including vaccines.

Respondent 0364

a. Gaps and underrepresented research areas.
A vaccinated versus unvaccinated study should be done. All autism related research recommended by the NVAC should be done.

Respondent 0366

a. Gaps and underrepresented research areas.
The cause of so many children being labeled is that too many doctors are not assessing children for medical conditions. They are lazy and send behavioral issues to the psyches instead of doing their job. The other cause is the standards of care. Too many doctors are using the poorly thought out standards of care as a way to be lazy and refuse assessment and treatment for medical issues. Insurance companies are depending on neurological labels to prevent payment on medical treatments. So, Greed and laziness is the problem

b. New opportunities.
1. change the standards of care to include a medical assessment for food allergies and intolerances and do not allow insurance companies to use a neurological label to prevent medical treatment.

c. Research priorities.
1. change the standards 2. put legislation on the books to prevent insurance corruption 3. train doctors to look for medical issues such as food allergies before they send a kid up for psychiatric assessment

Respondent 0367

a. Gaps and underrepresented research areas.
Change the vaccine schedule.

b. New opportunities.
Change the vaccine schedule.

c. Research priorities.
Change the vaccine schedule. Better yet, why don't you research the health of the children under the care of Mayer Eisenstein in Chicago.

Respondent 0368

a. Gaps and underrepresented research areas.
There needs to be research done on the role that vaccines play in autism. There has been no study on a vaccinated vs. an unvaccinated population. An unvaccinated population exists (e.g. homeschoolers) and could be studied without ethical problems. There has also been no study on the effects of multiple vaccines given at once. Why not? Doctors are careful when prescribing drugs that will be taken together because of possible interactions -- it seems that at least some study should be done on the effects of multiple vaccines given at the same time.

b. New opportunities.
What vaccine research has been done has been epidemiological in nature. We need to investigate vaccines from a biological, toxicological, immunological standpoint.

c. Research priorities.
Vaccine research is critically important. It should be a number one priority. Thousands of families have watched their children regress after vaccination. Science begins with observation. Why haven't the observations of these families (who know their children best) been taken into consideration?

Respondent 0370

a. Gaps and underrepresented research areas.
In multigenerational autistic families are the subsequent generations more severely affected and if so why?

b. New opportunities.
Do genes and environment interact to cause autism?

c. Research priorities.
We are a family with two generations of autistic persons, probably at high risk for a third generation. A very early in utero test is needed for our sons and daughters. For those raised with an autistic sibling having an autistic child is especially emotionally difficult.

Respondent 0373

a. Gaps and underrepresented research areas.
VK Singh's research on Myelin Basic Protein autoantibody testing. Vaccinated/Unvaccinated study of existing populations of children, studying all health outcomes.

Respondent 0376

a. Gaps and underrepresented research areas.
The cumulative amount of mercury in multiple injections on the same day has NEVER been studied -- some vaccines have been studied independently, but not the cumulative load.

Respondent 0377

c. Research priorities.
The two studies that Insel removed need to be reinstated: the feasibility study for a vaccinated vs. unvaccinated study and all autism related research recommended by NVAC

Respondent 0379

a. Gaps and underrepresented research areas.
Research is needed into vaccine safety and the role vaccines play in potentially causing, triggering or worsening autism. We also need the vaccinated/unvaccinated study, as recommended and deemed to be possible by Dr. B. Healy among others.

b. New opportunities.
The vaccinated/unvaccinated study.

c. Research priorities.
The vaccinated/unvaccinated study.

Respondent 0385

a. Gaps and underrepresented research areas.
Again, determining the cause of ASDs is important, but helping the children and adults that are currently on the spectrum is of equal importance. Prevention is no longer an issue once your child is diagnosed.

Respondent 0388

a. Gaps and underrepresented research areas.
This is the one area that is not underrepresented. The prevailing wisdom has been de-ontilogical if we find the reason, then we can find the cure. Okay- if a person nearly drowns or is struck by a car, we know the cause, but does that really lead to breakthroughs in medicine, or is the understanding of what is actively happening in the body and brain the means to the effective treatment

b. New opportunities.
It's being done.

c. Research priorities.
Till we have effective treatments, move on!!!!

Respondent 0391

a. Gaps and underrepresented research areas.
Unvaccinated cohort must be compared to vaccinated cohort.

c. Research priorities.
Unvaccinated cohort must be compared to vaccinated cohort.

Respondent 0396

a. Gaps and underrepresented research areas.
immune response total load with toxins use of antibiotics over generations to create problematic immune systems food sources

b. New opportunities.
no opinion in this regard. I think these are epidemiology questions.

c. Research priorities.
no opinion. I think these are epidemiology questions

Respondent 0399

a. Gaps and underrepresented research areas.
You must look at vaccinated vs. NEVER-vaccinated children for autism, pdd, adhd, add, etc. You don't need to do an experimental study which Insel says is unethical. Look at the LARGE population of already unvaccinated kids. This issue will NEVER go away until this study is done by INDEPENDENT researchers. Stop wasting time and money. I'm ashamed of Insel and this committee.

Respondent 0403

a. Gaps and underrepresented research areas.
Looks great to me

b. New opportunities.
None

c. Research priorities.
None

Respondent 0406

a. Gaps and underrepresented research areas.
Vaccines need to be further studied. The question has not been asked and answered, no matter how much Tom Insel wishes it was.

Respondent 0408

a. Gaps and underrepresented research areas.
There MUST be studies comparing vaccinated vs. completely unvaccinated children. There MUST be studies of multiple vaccines given on the same day. The pharmaceutical industry's influence on regulations and vaccine schedules has to examined and laid bare for the public to see. There must be studies about the damage we are doing to our food supply with hormones, preservatives, pesticides, etc.

b. New opportunities.
There is already a large part of the population out there who are not vaccinating and eliminating toxins from their lives. Start a study NOW so that five, ten, fifteen years down the road we've not missed the opportunity to compare the effects of the filth we've been putting in our bodies. Also look at the veterinary world and see the discoveries that they've made about hyper-vaccinating animals and how some breeds are more susceptible to ill-effects from vaccinations than others.

c. Research priorities.
This needs to be third in line. Treatment first, Education of Pediatricians to aid early diagnosis 2nd, Causation a VERY close third.

Respondent 0411

a. Gaps and underrepresented research areas.
Cumulative effects of vaccines need to be studied. Although I do not know what caused my son's autism, I know MANY parents who have clear evidence that vaccines caused their child's autism. For example, a video of a child at his birthday party engaging like a typical child. Less than a week later, the child receives vaccines. The child begins crying immediately after the vaccine is administered, which is entirely normal. However the child continues to cry for hours after they arrive home, develops a fever, becomes quiet which is typical for an ill infant but after the fever goes away, the child never snaps out of being quiet, stops talking, begins to rock in the corner on a daily basis and is identified with autism. How can you dispute that?

b. New opportunities.
Make sure there are no conflicts of interest when studying the effects of vaccines and the environment. Parents have lost trust in organizations like the CDC, NIMH and big-pharmaceutical because these conflicts of interest come out after the fact. Mistrust is expensive. This group of parents with ASD children is growing. Something must be done before an all-out revolution erupts.

Respondent 0419

a. Gaps and underrepresented research areas.
The Vaccine Court awarded Amy Poling a financial settlement stating that her autism was caused by the MMR vaccine. She was said to have an underlying mitochondrial disorder that was a precipitating factor. Children should be screened for this mitochondrial disorder prior to vaccinations. Also, it is a question of the chicken and the egg. Before and after tests should be conducted. Do children who don't have mitochondrial disorders later develop them after receiving a series of vaccines? There might be two causation scenarios: genetically inheriting the disorder from the parent, or, acquiring it from vaccines. The incidence of autism is higher in those children living near power plants. Does that proximity, coupled with vaccines, make their autism and health symptoms worse than those in the general population? Are the symptoms and health problems (gut, immune, metabolic, allergies) more severe in children who are heavily immunized as opposed those who receive less immunizations? Or, imm

b. New opportunities.
In a study, macaque monkeys received the same regime of vaccinations as would human babies with the doses adjusted proportionately for their little monkey size.(Based on the vaccine loads our kids were subjected to in the 1990s. The vaccinated versus the unvaccinated monkeys showed autism-like signs and symptoms in infant monkeys vaccinated the same way. The study's principal investigator, Laura Hewitson from the University of Pittsburgh, reports developmental delays, behavior problems and brain changes in macaque monkeys that mimic "certain neurological abnormalities of autism..." The researchers also reported that "vaccinated animals exhibited progressively severe chronic active inflammation [in gastrointestinal tissue] whereas unexposed animals did not. We have found many significant differences in the GI tissue gene expression profiles between vaccinated and unvaccinated animals." Scientific studies as well as many parents report severe GI ailments in children with regressive autis

c. Research priorities.
Congress, as part of the "Combating Autism Act" of 2008, specifically set aside money to research a possible connection between vaccines and autism. Yet, on January 12, 2009, and without prior public notice, the IACC majority voted to remove those allotted moneys. This was a totally ILLEGAL maneuver for which they must be made accountable. The conflict-of-interest riddled IACC Chair, Tom Insell, and the IACC government members of the committee seem overly interested in studying genetic causes of autism and hostile to studying environmental causes. They also dismiss assessing the biomedical treatments which are helping so many of our kids. THE MONIES SET ASIDE BY CONGRESS FOR THE TWO STUDIES THAT THE IACC ILLEGALY DITCHED MUST BE USED IMMEDIATELY IN THE PURSUIT OF SAID STUDIES.

Respondent 0420

a. Gaps and underrepresented research areas.
It's frustrating for me a parent that recovered my child and hundreds others from autism and organizations like the AAP does not endorse biomedical treatment for ASD. Why is there a confusion on the toxicity of mercury and aluminum? Our children have the same symptoms as mad hatters disease which was proven to be caused by mercury. We have children being chelated of heavy metals and they excreting mercury and are getting better. I have come to the conclusion that the causes autism are known but it is not convenient to uncover the mystery of it. There are so many people accountable for the explosion of autism, asthma, diabetes, learning disorders, and other immune related problems. Yes, there is a genetic predisposition to autism. We know genes can be manipulated through environment and diet. None of this is easy for the pharmaceutical companies and the government that has allowed them to poison our children; nor is it easy for the food industry or industries that pollute or

b. New opportunities.
I have helped hundreds maybe thousands of families and I have not heard or seen on mother have another autistic child; once she has become proactive and researched vaccines. Started eating whole foods and foods rich in probiotics.

Respondent 0421

a. Gaps and underrepresented research areas.
environmental studies vaccinated/unvaccinated number of increased vaccination earlier in infancy vs. smaller # in previous generation we have a cohort of 5,000 kids with medical records in vaccine court..find the Chicago group and do the research with non-biased researchers

Respondent 0422

a. Gaps and underrepresented research areas.
No one has been able to create a communication system that is useful in the real world for intelligent, nonverbal children. This will limit my daughter greatly and increase the cost to the social system for her care and protection. This child is very social and loves to be in the company of others. But I see her frustration at times when she is left out of the conversation because she just doesn't understand.

Respondent 0426

a. Gaps and underrepresented research areas.
Just do the vaccine research. Everyone already knows, as you write, that a link between autism and vaccines is unsupported by the research literature, but everyone ALSO knows that the research to date on vaccines and ASD would not highlight many relationships were they to exist. Ask the most educated advocacy groups what study design they would consider authoritative, and just do it. People are not stupid. They know that vaccines are vitally important, they want to get their kids and themselves vaccinated. But they need to know which kinds of vaccines (e.g. what formulations, components, etc.) are safe for which people during what period of development.

b. New opportunities.
Autoimmune disease. Viral infections. Chronic inflammation. It is shocking how much research money is still going to describing the features of autism, when there is ample evidence that the features are only a downstream result of some long on-going disease process.

c. Research priorities.
Do the vaccine research. Do a lot of it and do it right. You are the only people with the money to get this cleared up.

Respondent 0429

a. Gaps and underrepresented research areas.
Research into environmental triggers such as everyday chemicals and toxins (pesticides, mercury in light bulbs, etc.) and vaccines.

b. New opportunities.
"Study the effect of vaccines, vaccine components, and multiple vaccine administration in autism causation and severity through a variety of approaches, including cell and animal studies, and understand whether and how certain subpopulations in humans may be more susceptible to adverse effects of vaccines by 2011" and "Determine the feasibility and design an epidemiological study to determine if the health outcomes, including ASD, among various populations with vaccinated, unvaccinated, and alternatively vaccinated groups by 2011."

c. Research priorities.
1. Vaccines 2. Other environmental triggers: pesticides, mercury in everyday household items, etc.

Respondent 0430

a. Gaps and underrepresented research areas.
Study the children with regressive autism.

b. New opportunities.
Study the children with regressive autism.

c. Research priorities.
Study the children with regressive autism. Study vaccinated vs. unvaccinateded children. Dr. Insel needs to step down as there appears to be a conflict of interest surrounding this type of study. I do not believe this is a perceived conflict, I believe it is real.

Respondent 0432

a. Gaps and underrepresented research areas.
The two programs of vaccine research that were part of the approved draft plan last December must be restored. This is of the greatest urgency as these will examine the role vaccines play in the chronic diseases of childhood, especially autism, and lead to either focusing on other environmental triggers or changes in the schedule/screening in order to reduce vaccine-caused chronic illness. These two initiatives are: 1) Study the effect of vaccines, vaccine components, and multiple vaccine administration in autism causation and severity through a variety of approaches, including cell and animal studies, and understand whether and how certain subpopulations in humans may be more susceptible to adverse effects of vaccines by 2011. Proposed costs: $6,000,000 2) Determine the feasibility and design an epidemiological study to determine if the health outcomes, including ASD, among various populations with vaccinated, unvaccinated, and alternatively vaccinated groups by 2011. $10,000,000

b. New opportunities.
"Cause" research should also include the intensive real-time study of children as they first manifest symptoms of autism. As long as the bulk of the research dollars is going to research such as eye gaze studies and autism father's mate's body type preferences, and single genetic markers we will never get any closer to conducting meaningful research which recognizes that autism is a medical disease that effects whole body systems and not just a "mysterious behavior disorder" that can only be addressed by psychiatrists with psychotropic drugs. Three years after the CAA's passage, there has been no relevant research nor any new treatment funding that addresses my daughter's debilitating GI pain, failure to gain weight and absorb nutrients, ability to sleep through the night, extreme self-injurious behavior, compromised immune system, etc., etc., etc.

c. Research priorities.
Although the present plan claims autism is a national health emergency, it must contain specific steps to address autism with the same urgency as, e.g., SARS, H1N1, Chinese toys, and E. Coli. At a minimum, the funding process must be revamped to move research quickly into the lab and out into the field. The budget must be increased substantially to reflect the astronomical cost to families and society and the benefits of preventing new cases and implementing treatments leading to practical recovery.

Respondent 0436

a. Gaps and underrepresented research areas.
My son had a test three weeks after his birth to determine whether there was any retardation present. There was none. When he was three, he was diagnosed with autism. I believe the childhood immunizations caused his regression into autism. We need to research vaccine injury in children with autism.

b. New opportunities.
We also need to research environmental factors in causing autism. There are more incidents of autism where children live around landfills. Also living too close to agricultural areas where they're using pesticides causes increases in autism.

Respondent 0439

a. Gaps and underrepresented research areas.
Environmental Research! Both the scientific and education communities know there has been exponential growth in the number of children with autism. That is a clear indication of an environmental exposure causing the increase. You must do a vaccinated vs. unvaccinated study. There are thousands of families currently not vaccinating their children available for the study. This study is mandatory. My son regressed into autism following his vaccinations. I know it was his vaccinations because I treated his various medical problems caused by vaccination and now, he no longer has autism. His health has returned. Study the children who have fully complied with the current CDC recommended vaccination schedule and those who have never been vaccinated. Then compare health outcomes. The American children and families deserve this study.

c. Research priorities.
Please, please stop with the extensive genetic research. You cannot have a genetic epidemic. Yes, there is a genetic predisposition in our children to regress after an environmental insult. Your time and our money would be better spent on finding and eliminating that environmental insult thus providing prevention. That is what I hope for, preventing additional injuries to children. No one wants to watch their child and or any child live daily with pain - preventable pain. Please use my money efficiently.

Respondent 0440

c. Research priorities.
This section of research is vastly over prioritized relative to other sections. Research into prevention should be of lower priority than ensuring that the people who are already here right now are receiving adequate and effective services and assistance. A significant amount of the funding dedicated to this section needs to be shifted, preferably to sections 5 and 6. Additionally, bioethics discussion (again, including adult autistics and other disability rights proponents) should take place regarding much of the research in this section.

Respondent 0442

a. Gaps and underrepresented research areas.
There needs to be a "conflict of interest free" study done of fully vaccinated vs. unvaccinated children to determine the rate of autism spectrum disorder in both groups. Also, a study of current full vaccine schedule (2009) vs. the old vaccine schedule (circa 1989) to determine whether the increase of the number of vaccines administered to children under the age of 2 has impacted the rates of autism. These studies have not been done. Studies done tonight are flawed or rife with conflicts of interest.

b. New opportunities.
There are many parents of unvaccinated children who are willing to participate in the study. The IACC just needs to reach out to the community. There is no ethical dilemma in conducting such a study because there are so many parents not vaccinating who are already willing to participate in the study. A lot of these kids are the ones who have genetic markers as well. Our oldest son was fully vaccinated through age 2.5, he has Autism. Our second son was vaccinated only through age 6 months, he is neurotypical. Our daughter who will be born this month will receive no vaccines at all. My wife's mother has Lupus a suspected genetic marker. We are happy to participate in a study. We have many friends who have not vaccinated at all, or very limited vaccines, who will also participate in the study.

c. Research priorities.
My suggestions are listed above. I want to make it clear that parents of ASD kids all want children to be safe from disease, but just not at the cost of causing autism. Autism is worse than most of the diseases we try to prevent with vaccines. Just come live at my house for a week. While genetic predisposition should be studied, the role the increase in the number of vaccines administered over the last 20 years from 11 to almost 40 now needs to be adequately studied. We still can have heard immunity by spreading out the vaccines over time if it is determined that rates of autism are higher in the fully vaccinated. IF the CDC is so concerned with dropping vaccine rates the only way to stop the drop is to conduct the study all parents want done. The studies done to date have flaws. The science is not complete. Be smart. Be neutral. Honor your commitment to the children and next generation of Americans.

Respondent 0443

a. Gaps and underrepresented research areas.
This area is dramatically under-funded, especially on the question of environmental cause. Although there is a strong consensus in the scientific literature that autism is caused by environmental triggers in genetically susceptible individuals, most of the cause money is devoted to searching for the elusive autism gene and not for the environmental triggers that might actually lead to prevention. Autism cannot be solely genetic, since it has gone from 1 in 10,000 to 1 in 100 in just over a decade.

b. New opportunities.
We need more vaccine research- research on vaccines in combination, since that's how they are always given nowadays; research on single spaced-out vaccines (alternative schedule) versus the current schedule; research on vaccinated vs. unvaccinated; research on ingredients in combination, such as thimerosal and aluminum; research on pregnant women receiving vaccines; research on preemies receiving vaccines; etc.

c. Research priorities.
Vaccine/environmental research should be the highest priority.

Respondent 0453

a. Gaps and underrepresented research areas.
Epidemics are not genetic. They are environmental. It is misguided to channel so much funding into discovering the elusive autism gene, when this does not explain the dramatic rise in autism. Yes, there is a genetic component. But much more important would be to fund research into the environmental triggers that are causing the epidemic so that we can prevent further children from being so tragically injured.

b. New opportunities.
The two programs of vaccine research that were part of the approved draft plan last December must be restored, as these will examine the role vaccines play in the chronic diseases of childhood, especially autism, and lead to either focusing on other environmental triggers or changes in the schedule/screening in order to reduce vaccine-caused chronic illness. These two initiatives are: 1) "Study the effect of vaccines, vaccine components, and multiple vaccine administration in autism causation and severity through a variety of approaches, including cell and animal studies, and understand whether and how certain subpopulations in humans may be more susceptible to adverse effects of vaccines by 2011. Proposed costs: $6,000,000 2) Determine the feasibility and design an epidemiological study to determine if the health outcomes, including ASD, among various populations with vaccinated, unvaccinated, and alternatively vaccinated groups by 2011. Proposed cost: 10,000,000

c. Research priorities.
I have researched the causes of my son's condition for thousands of hours. I am convinced that the excessiveness of the vaccine schedule in infancy caused my son's tragic regression into the bizarre world of autism. The vast majority of other parents of children with autism are similarly convinced of their child's regression following vaccination. Why is this being continually ignored?! We are now up to 1 in 100 children being diagnosed with autism. How many more children must be injured before this epidemic be haulted?! It is of great concern that the chairman of the IACC, Tom Insel, who has ties to the vaccine industry, and CDC, were permitted to cancel out the above named carefully crafted measures that the autism community had advocated for which would have addressed the role of vaccines in the dramatic rise of autism.

Respondent 0454

a. Gaps and underrepresented research areas.
Although there is a strong consensus in the scientific literature that autism is caused by environmental triggers in genetically susceptible individuals, most of the cause money is devote to searching for the elusive autism gene and not for the environmental triggers that might actually lead to prevention. Please restore these 2 initiatives to the plan: These two initiatives are: 1) "Study the effect of vaccines, vaccine components, and multiple vaccine administration in autism causation and severity through a variety of approaches, including cell and animal studies, and understand whether and how certain subpopulations in humans may be more susceptible to adverse effects of vaccines by 2011. Proposed costs: $6,000,000 2) Determine the feasibility and design an epidemiological study to determine if the health outcomes, including ASD, among various populations with vaccinated, unvaccinated, and alternatively vaccinated groups by 2011. Proposed costs: $10,000,000

b. New opportunities.
The two programs of vaccine research that were part of the approved draft plan last December must be restored. This is of the greatest urgency as these will examine the role vaccines play in the chronic diseases of childhood, especially autism, and lead to either focusing on other environmental triggers or changes in the schedule/screening in order to reduce vaccine-caused chronic illness. 1) "Study the effect of vaccines, vaccine components, and multiple vaccine administration in autism causation and severity through a variety of approaches, including cell and animal studies, and understand whether and how certain subpopulations in humans may be more susceptible to adverse effects of vaccines by 2011. Proposed costs: $6,000,000 2) Determine the feasibility and design an epidemiological study to determine if the health outcomes, including ASD, among various populations with vaccinated, unvaccinated, and alternatively vaccinated groups by 2011. Proposed costs: $10,000,000

c. Research priorities.
environmental and vaccine research areas are dramatically under-funded, especially on the question of environmental cause. Although there is a strong consensus in the scientific literature that autism is caused by environmental triggers in genetically susceptible individuals, most of the cause money is devote to searching for the elusive autism gene and not for the environmental triggers that might actually lead to prevention. The two programs of vaccine research that were part of the approved draft plan last December must be restored. This is of the greatest urgency as these will examine the role vaccines play in the chronic diseases of childhood, especially autism, and lead to either focusing on other environmental triggers or changes in the schedule/screening in order to reduce vaccine-caused chronic illness.

Respondent 0455

a. Gaps and underrepresented research areas.
Vaccination studies need to be done. Environmental studies need to be done (water, plastics, lead, mercury, frequencies from satellite, radio, cell phone, etc.) Additional genetic and autoimmune studies need to be done for parents with multiple children with autism.

c. Research priorities.
Vaccination studies need to be done. Environmental studies need to be done (water, plastics, lead, mercury, frequencies from satellite, radio, cell phone, etc.) Specific test should be done to test the following: -Drinking water -Bottled water -Baby & toddler toys -Baby formula -Ultrasounds Additional genetic and autoimmune studies need to be done for parents with multiple children with autism.

Respondent 0458

a. Gaps and underrepresented research areas.
This is so important. The genetic and environmental factors that contribute to autism should be a primary focus of research dollars. We could learn how to protect some or all of autistic individuals from developing symptoms.

b. New opportunities.
I think that large scale studies of environmental exposures in autistic and non-autistic individuals should be conducted. For example, a research study that including blood and urine analysis of thousands of individuals from birth to compare the results of those who develop severe autism to those that develop high functioning autism and those do not develop autism symptoms. The lack of large, well conducted studies of environmental toxins (including those that come from vaccines) is the root of the belief that vaccines may not be safe.

c. Research priorities.
These objects are all so important they are difficult to prioritize. We should be spending the majority of research money on section III research goals.

Respondent 0459

a. Gaps and underrepresented research areas.
I think we should do more research into how anti-autism bigotry can be prevented.

b. New opportunities.
First off, I would suggest rounding up the leading members of organizations such as Autism Speaks and collecting a DNA sample from each of them.

c. Research priorities.
I think this should be a top priority because their bigotry caused the widespread anti-autism prejudice epidemic to happen. If bigots like them could be prevented from existing, less autistics would be suffering from depression and millions of lives would be saved from the decreased suicide rate. Also, millions of dollars would be saved from families being less pressured to spend money on quack treatments for their autistic children.

Respondent 0461

a. Gaps and underrepresented research areas.
Research into the amount and types of vaccines and it's affect on the immune system and as one of the possible causes of autism/autistic symptoms. Study on rates of autism in vaccinated and unvaccinated populations

Respondent 0463

a. Gaps and underrepresented research areas.
Concerns voiced by parents, physicians, and the scientific community regarding vaccine injury must be addressed with thoughtful, complete, and unbiased investigations. The Vaccine Injury Compensation Program has compensated 1322 cases on the basis of vaccine-induced brain damage, seizure disorder, acute disseminated encephalomyelitis, and encephalopathy. Many of these cases were also diagnosed with autism after suffering the vaccine injury. Since vaccines are universally recommended and mandated in most states for all infants starting at birth, they should be subjected to the highest level of safety standards and research. Vaccine safety issues, including issues of a temporal nature, deserve to be investigated to the fullest extent possible. Therefore, we strongly urge that the two research initiatives to investigate vaccines, which were removed from the strategic plan by the committee in January, be restored.

b. New opportunities.
Build on promising immune system findings in order to more clearly understand the role of immune alterations in ASD. Create animal models based on single exposures, multiple exposures, and multiple pre- and postnatal exposures to substances and viruses that ASD children have been exposed to, reflecting the doses to which they were exposed. Use these animal models to understand genetic susceptibility, pharmacokinetics, mechanisms (including effects at the cellular level and systems level such as GI, immune, and brain), retention and localization of body burden, and response to potential treatments. Evaluate neurodevelopmental and neuroimmunological outcomes, longitudinal structural and functional imaging of the CNS, and tissue pathology, including gene expression and proteomic profiling, in response to the combined early infant immunization schedule (including prenatal exposure to influenza vaccine) in non-human primates.

c. Research priorities.
The above research opportunities should be made a high priority and added to the NIH list of short-term objectives. All research should be prioritized to reflect the urgency of the goal of restoring health to those affected with the disorder, as well as the prevention of new cases.

Respondent 0466

a. Gaps and underrepresented research areas.
Relevant research topics that are underrepresented are studies that identify sensitive populations that is people at risk for adverse reaction to vaccines based on family history. This would include individuals with a family history of auto immune or psychiatric disorders, a sensitivity to allergens, metabolic or mitochondrial disorders and the effect of multiple stressors (vaccines, illness) on these populations. Because the CDC has publically stated on its web site that immune response varies widely and that they have no way of predicting how an individual's immune system will respond to vaccines, this plan should fund clinical studies that examine more thoroughly the immune response of sensitive populations to multiple vaccines. That is individuals with family history of auto-immune disorders, allergen sensitivities and mitochondrial related disorders. Also need to do safety studies that examine the cumulative effects of multiple vaccines on an immature immune system.

b. New opportunities.
More research on sensitive populations and immune response. More research is needed on the relationship between autism, mitochondrial dysfunction and environmental stressors including illness and multiple vaccines. Studies that look at adverse effects of vaccines that can develop over the long term (months later). The CDC's immunization schedule needs to be safety tested. I don't believe this has ever been done in fact there seems to be a complete lack of clinical safety studies on the schedule or, if they exist, they have never been made available to the public.

c. Research priorities.
1. Identying sensitive populations and examining the immune response of multiple vaccines those sensitive populations 2. Effect of multiple vaccines on immatuire immune system (children 0-2 years) and long term effects on the immune system and neuro-development 3. Safety test the CDC immunization schedule that is the cumulative effects of the current vaccine load and how the immune system responds.

Respondent 0472

a. Gaps and underrepresented research areas.
There is the topic of why the very existence of autistic people should be "prevented." Clearly many people believe so, but this is not a fair view conducive to providing autistic people with rights and respect. Autistic people exist and have always existed. Our presence is not in need of "prevention"--but we do need actual services and support. Overly focusing on cause and prevention wastes money which could be used to provide concrete help to autistic people who are already here, as well as those who will exist in the future.

c. Research priorities.
With the federal budget being what it is, I find it amazing that anyone could possibly justify more research into the vaccine causation hypothesis, when such a "link" has already been so thoroughly discredited by reputable scientists. Funding yet another study about this should not be a high priority. Practical research which examines which factors are associated with a higher quality of life for autistic people (as perceived by autistic people) are far more relevant.

Respondent 0473

a. Gaps and underrepresented research areas.
Investigating the role of vaccines in the etilogy of autism. Examine large populations of autistic individuals to identify cohorts with homogeneous patterns (behavioral, medical and/or biological factors) Study role of mitochondrial defects in autism. How could environmental factors trigger dysfunction. Document abnormalities of the immune system. What are these and how can they be treated? What are the common susceptibilities between the nervous system and immune system? Investigate the role of oxidative stress in the etiology of autism, as well as identifying factors that negatively impact reduction-oxidation reaction state (cellular to systems level analyses, as well as animal studies) and developmental course of changes in oxidative burden across various brain regions. Is timing of insult more important than nature of stressor? What role do methylation defects play in the etiology of autism? Is there evidence for a fragile homeostasis in autism?

b. New opportunities.
Investigate the neurotoxicity and immunogenecity of constituent components and additives, the number/combinations of vaccines, and timing of administration on development in animal models and non-human primates. Independent analyses of risk (vs. benefit) as well as comparisons of vaccinated/non-vaccinated populations or cross-national comparisons of different vaccine schedules. Identify susceptibilities and triggers genetic, environmental and developmental (Nature+Nurture+Timing) Is a prenatal insult necessary/sufficient to produce symptoms or are postnatal insults required for disease onset (or are there multiple pathways to symptom expression?) Examine new and different categories of environmental exposures microorganisms, neurotoxicants and other environmental factors; identify common pathways of symptom expression Identify the etiologic neurotoxicants and eliminate them from the child's environment (from prenatal period through childhood)

c. Research priorities.
Caution that continuing to support a "supplier-driven" approach (investigator-initiated) would only yield the "same old-same old" studies and results. Need "customer-driven" approach that would utilize RFA's/set-aside funds to transform the portfolio, including a greater emphasis on treatment trials (development of biomedical interventions for core symptoms of autism) and mechanistic studies. Support for basic science research must be continued, but it should be directed towards investigations that inform us about the cause of autism: 'what we need to know, not what is nice to know'. Public-private partnerships will be essential to ensure that the overall portfolio is balanced and that "venture capital" types of research (i.e. high risk of failure but high impact if successful) can be supported.

Respondent 0476

a. Gaps and underrepresented research areas.
A genetic neurological abnormality has occasionally occurred in humans for at least the last 700 years. Always less than about 2% of population, these people happen to be born with a set of abnormal SPRATS. The dynamic interactions of an individual's SPRA, control the only ways for a mind-body to relate to its environment. Such results in a sometimes-significantly different Thinking System(s), including communication(s). Our experiences indicate that IF the abnormality is more fully investigated, better understood, and applied, prevention would not even be considered. Engineering the condition would. Best applications of the capabilities would.

b. New opportunities.
See section IIIa.

c. Research priorities.
From considerable experience working with adults living on the autism spectrum, we know that many individuals will usually come to behave near normally and perform extremely well, IF they are valued in society for their uncommon capabilities and skills, treated with respect, and challenged appropriately. 1st Understand the abnormality. 2nd Learn how to use the abnormality by appropriate recognition, encouragement and application of the positive aspects. 3rd MOST IMPORTANT inform harassed parents of the utility of the abnormality AND the best way to handle it.

Respondent 0477

a. Gaps and underrepresented research areas.
Please make low verbal and nonverbal people with autism part of the Strategic plan! It is so important. Thank you very much.

Respondent 0480

a. Gaps and underrepresented research areas.
The IACC Strategic Plan appears to be asking if ASD is genetic or a factor of the environment or both. Currently Florida defines Autism as a developmental disability under the Florida Statutes. Chapter 393.063 Defines "Autism" as a pervasive, neurologically based developmental disability of extended duration which causes severe learning, communication, and behavior disorders with age of onset during infancy or childhood. Individuals with autism exhibit impairment in reciprocal social interaction, impairment in verbal and nonverbal communication and imaginative ability, and a markedly restricted repertoire of activities and interests.

Respondent 0481

a. Gaps and underrepresented research areas.
Everything in this section needs to be considered in light of the bioethics considerations mentioned in Question 1. Prevention of autistic characteristics should not automatically be assumed to be a good thing. All research in this area should include meaningful consultation with the Autistic community regarding our concerns.

b. New opportunities.
I recommend that no new studies in this area be undertaken at present and that funding should be shifted into areas of more pressing importance such as studies of community services and supports, long-term outcome studies, and cognitive research to help improve the education of Autistic students.

c. Research priorities.
No more vaccine studies; they are a waste of taxpayer money and are repetitive of past research showing no association between autism and vaccines. Funding should go toward research that will actually help the existing Autistic population.

Respondent 0484

a. Gaps and underrepresented research areas.
Accentuating the positive and accommodating or remediating the weaknesses, will go a long way in helping individuals with Autism a sense of value and take part in becoming productive citizens of society.

Respondent 0485

a. Gaps and underrepresented research areas.
There needs to be a dramatic shift in research: 90% environmental; 10% genetics. New cases in autism should be prevented by identifying environmental etiology.

c. Research priorities.
Return the vaccinated vs. unvaccinated outcome study to the highest priority for research and funding. Short of doing this, the IACC will continue to be regarded as a politically and not scientifically motivated.

Respondent 0493

a. Gaps and underrepresented research areas.
Vaccinated vs. unvaccinated amount of thimerasol at what ages and severity of ASD pregnant mom don't eat tuna but let us load you up with the flu shot loaded with thimerasol.

Respondent 0494

a. Gaps and underrepresented research areas.
VACCINES!!! I know that all autism is not caused by vaccines. I don't think anyone will argue that genetics play a role in autism. Looking back...I believe my son could have gone either way. He did typical things but did not progress normally. We did not go thru regressions. I truly believe vaccines played a part in my son's autism.

b. New opportunities.
Vaccines & environment.

c. Research priorities.
Vaccines & environment.

Respondent 0499

c. Research priorities.
We commend the Committee for acknowledging the weighty evidence against the proposition that thimerosal-containing vaccines could cause autism. The Committee's position on a connection between MMR vaccine and autism is less clear, and we recommend that the Committee clarify in the Strategic Plan that the evidence against such a connection is strong. The Committee seems to be contemplating a study to compare vaccinated against unvaccinated children. We recommend that the Committee carefully consider the scientific feasibility of carrying out such a study in light of the potential for confounding that is inherent in retrospective research. We believe that federal resources would be put to better use studying hypotheses of autism's etiology for which biological plausibility has been demonstrated.

Respondent 0500

a. Gaps and underrepresented research areas.
More research into environmental effects on sensitive individuals. More research on harmful side effects of vaccines More research on harmful side effects of overuse of antibiotics and other prescription medications. Return vaccinated/unvaccinated studies to priority list.

c. Research priorities.
Prioritize research on vaccines, prescription medications, and environmental triggers.

Respondent 0501

a. Gaps and underrepresented research areas.
Focus on causation implies these people are broken. They're not broken. They're different. My children, and I have three autistic children, are not broken. They're different. Focus on how you can make their lives better, not how you can fix them! Please don't waste this research money on causation.

b. New opportunities.
Research the very likely possibility that autism is a normal human difference. That's why it's a spectrum disorder with some people being mostly "normal" by society's terms.

c. Research priorities.
Causation should be a very, very low priority.

Respondent 0502

b. New opportunities.
I would like more family studies and genetic research, esp. to show that autism has been around forever, goes way back in family histories, is not the end of the world, has not come out of nowhere due to the "environment," etc. Genetic research focus should be educating the population on autism as a natural variation, and not something that needs to be exterminated.

c. Research priorities.
There have been plenty of studies showing that vaccines do not cause autism. I would like to see this issue put at the very, very bottom of any list of priorities. Same thing for the vinyl flooring theory, random "toxins," etc. Would also like more research into the "autism epidemic," and if it really is true that there are more autistic kids now than ever. When I look at charts/graphs of department of education stats, it looks to me like "mental retardation" has gone down while "autism" has gone up. It seems like one diagnosis/label has been substituted for another.

Respondent 0505

a. Gaps and underrepresented research areas.
Vaccine safety has been cynically addressed. This must be thoroughly studied in earnest, including but not limited to observational studies of vaccinated vs. unvaccinated and primate research studies. Viral causes should be explored using oligo microarray chips, CSF from possibly vaccine-injured patients and patients with ongoing problems. Differentiation is key to increasing the signal to noise ratio but has been previously used to rig research to produce a pre-arranged answer. More thorough research grouping children in to groups with comorbid issues is needed.

b. New opportunities.
Vaccine safety has been cynically addressed. This must be thoroughly studied in earnest, including but not limited to observational studies of vaccinated vs. unvaccinated and primate research studies. Viral causes should be explored using olio microarray chips, CSF from possibly vaccine-injured patients and patients with ongoing problems. Differentiation is key to increasing the signal to noise ratio but has been previously used to rig research to produce a pre-arranged answer. More thorough research grouping children in to groups with comorbid issues is needed.

c. Research priorities.
1) Vaccine safety has been cynically addressed. This must be thoroughly studied in earnest, including but not limited to observational studies of vaccinated vs. unvaccinated and primate research studies. 2) Viral causes should be explored using oligo microarray chips, CSF from possibly vaccine-injured patients and patients with ongoing problems. Differentiation is key to increasing the signal to noise ratio but has been previously used to rig research to produce a pre-arranged answer. More thorough research grouping children in to groups with comorbid issues is needed.

Respondent 0506

a. Gaps and underrepresented research areas.
Novel phenotyping strategies that go beyond a description of behavioral symptoms are needed for the identification of biomarkers and biologic profiles for individuals with ASD. The integration of biologic information in phenotype selection algorithms that can be used to identify ideal samples for research trials, may help to guide the development and evaluation of more targeted and effective therapeutics and significantly improve the prediction of a therapeutic response.

Respondent 0507

Helen McNabb

a. Gaps and underrepresented research areas.
Vaccinations? Baby Food/Formula (additives)? Environment - Nuclear fall out unknown to the public?

b. New opportunities.
Data Sharing, DNA Research Free Screening

c. Research priorities.
Oldest population of those with ASD to youngest.

Respondent 0509

a. Gaps and underrepresented research areas.
In the topics "Exposure assessment -- efficient and accurate measures of key exposures for use in population and clinic based studies" and "Initiate studies on at least five environmental factors" and "Determine the effect of at least five environmental factors", include vaccines as one of the exposures to be assessed.

b. New opportunities.
STUDY VACCINES! Study the immune system. Study digestion. Study metabolic and mitochondrial disorders.

c. Research priorities.
Vaccines should be the number one priority. Thousands of parents have witnessed their children's descent into autism following a round of vaccines. Mercury in the environment is another important subject for study.

Respondent 0510

a. Gaps and underrepresented research areas.
Immunizations and environmental risks.

b. New opportunities.
Immunizations and environmental risks.

c. Research priorities.
Vaccines and environmental risks.

Respondent 0512

a. Gaps and underrepresented research areas.
I think environmental causes should be investigated exhaustively since the autism rates are skyrocketing. Vaccines, their individual components and the cumulative effects should be studied. Also, pesticides and heavy metals should be investigated.

Respondent 0514

a. Gaps and underrepresented research areas.
My child has infant stroke caused by pitocin, toxin coated with immunizations Brain mush. Priority = environmental and biological ischema event prevention. WAAAAAAAAAY UNDER REPRESENTED IN COMMITTEE COMMITMENT! Forget Psychiatric evaluations. We experience this every DANG DAY! This is biologically caused.

b. New opportunities.
Priority = environmental and biological ischema event prevention. WAAAAAAAAAY UNDER REPRESENTED IN COMMITTEE COMMITMENT! Forget Psychiatric evaluations. We experience this every DANG DAY! This is biologically caused. Do the nonvaccinated study vs. vaccinated. And cut out all the toxins the CDC and governments are pimping.

c. Research priorities.
Well, we could fire this committee and use the money to research environmental and biological ischemia events. This is biologically caused. Do the nonvaccinated study vs. vaccinated. And cut out all the toxins the CDC and governments are pimping.

Respondent 0518

a. Gaps and underrepresented research areas.
The 2 programs referring to vaccine research that were part of the approved draft plan (that were deleted in Jan '09) MUST be restored. 1. Study the effects of vaccines, vaccine components and multiple vaccine administration in autism causation. Gain understanding to which subpopulations are more susceptible to adverse vaccine reactions. (I haven't seen ANY research into safety of multiple vaccine administration--at least in the way the current vaccine schedule is administered) 2. Determine feasibility and design of various health outcome, including autism, among various populations with vaccinated, unvaccinated, and alternatively vaccinated groups.

b. New opportunities.
It's time to REALLY seek out what environmental triggers are associated with autism--it's time to move past the elusive "autism" gene.

Respondent 0519

a. Gaps and underrepresented research areas.
remove bias toward prenatal onset of autism and include postnatal onset, regression and postnatal influences. Restoration of vaccine objectives vetted IACC through science workshops and strategic planning workgroups and approved in 12/2008 and removed in 1/2009. Integration of autism specific vaccine safety research objectives identified by NVAC and as they relate to ASD. Correction to misrepresentation of IOM 2004 and inclusion of existing vaccine research supportive of increased investigation inclusive of thimerosal. An independent panel to undertake this research is needed due to acknowledged HHS conflicts of interest.

b. New opportunities.
Funding the National Children's Health study to collect detailed medical records including vaccine information. Quadruple short-term objectives to identify environmental factors from 5 to 20 factors. Increase objectives investigating/identifying biomarkers to 20. Objectives must include US populations relative to environmental factor investigation. Expand objectives on effect of environmental factors on risk for subtypes of ASD to 20 environmental factors. Monitoring of environmental toxicants prenatally and for first 3 years of life. Investigate mercury in all its various forms and its relation to autism.

c. Research priorities.
Remove bias on genetics research and divert monies earmarked for genetic objectives into environmental factors and their genetic interplay. Include breakthroughs and understandings in environmental science to balance perspectives in the plan. Build on existing environmental research.

Respondent 0521

a. Gaps and underrepresented research areas.
examine children with late age regression and the diversity of subtypes

b. New opportunities.
better differentiation at the cell level as well genetic variants

c. Research priorities.
please make research into issues of brain inflammation and the association abnormal CSF levels have to do with autism subtypes..

Respondent 0524

a. Gaps and underrepresented research areas.
We need to look more at genetic factors and the way that the spectrum extends all the way into "normal" society. I object to the very framework of this question--we need to interrogate whether we want to live in a society that is trying to "prevent" all neurological difference. I concede that some neurological differences are very difficult for the subject and those around him/her, but others are not. We need to be precise about exactly what we're trying to "prevent" here, and the moral sacrifices we're willing to make for such prevention.

b. New opportunities.
Look at family trees of those with ASDs. How many have relatives who share a diagnosis or have gone undiagnosed because of shifting DSM standards?

Respondent 0525

a. Gaps and underrepresented research areas.
Research on vaccine injury MUST be fully studied. Where is the study examining vaccinated/unvaccinated children

Question 4: Which Treatments and Interventions Will Help?

Respondent 0013

Eileen Nicole Simon
conradsimon.org This link exits the Interagency Autism Coordinating Committee Web site

a. Gaps and underrepresented research areas.
Every effort must be made to promote language development. Deaf sign language was helpful for my son who was resuscitated at birth. My son who suffered head trauma learned to read before he learned to speak. He could read single words at age two, but did not speak in sentences with grammatical innovations until he was almost six. Until then he was fluently echolalic his speech appeared metaphorical and irrelevant to those who did not know him well. His speech was pragmatic for those of us who did know him well. Medications should not be used until the dysfunctional brain systems that cause autism are understood. Vitamins might be useful, especially vitamin B1 (thiamine an essential co-enzyme for aerobic enzymes), especially in cases where mitochondrial disorder is suspected. When my children were young we tried all the fads plus megavitamins that made us burp (and I ate and took what they did). We thought our oldest son was cured. Sadly he is not.

b. New opportunities.
Language is the most characteristic difference of humans from all other animal species. Linguists should be encouraged to take an interest in the characteristic language disorder of children with autism. Memory for the musical envelope of speech is preserved, as is pronunciation. Linguists have studied things like "distinctive phonological features" and "syntactic transformations." My son who was resuscitated at birth had no delays in motor milestones or beginning speech. By age two he was singing all the Christmas carols, including The Twelve Days of Christmas, with clear pronunciation and perfect pitch. At age four, he finally made his first "grammatical transformation," saying, "I'm a good idea," at the door wiping his feet ? derived from having been told many times, "That's a good idea" or "That's a good boy," for wiping his feet on the doormat. What prevented normal development from single words to baby-talk and progressive mastery of syntax?

c. Research priorities.
Can children with autism be helped to hear syllable boundaries, and taught to use baby talk? Brown and Bellugi (1964) determined that children first recognize stressed syllables before beginning to speak. Stressed syllable word fragments are then used in unique syntactic arrangements. The ability to make syntactic transformations appears to be an innate human capacity from an early age. The results are what Brown and Bellugi referred to as telegraphic speech e.g. Apple, I want or Mommy go store. The echolalic autistic child would instead say something like, you want the apple or Mommy has to go to the grocery store. Can autistic children be taught to hear and use single syllables and make syntactic rearrangements? References: (1) Brown R, Bellugi U. Three processes in the child's acquisition of syntax. Harv Educ Rev. 1964; 34:133-151. (2) Brown R. A First Language: The Early Stages. Cambridge, MA: Harvard University Press, 1973.

Respondent 0014

a. Gaps and underrepresented research areas.
Of individuals with Autism Spectrum Disorders (ASD), 80-90% demonstrate problematic sensory behaviors such as self-stimulating behaviors (excessive rocking or spinning), avoiding behaviors (such as placing hands over ears in response to typical levels of auditory input), sensory seeking behaviors (twirling, chewing, etc), tuning out behaviors (such as not responding to their name or other environmental cues), and difficulty enacting purposeful plans of action (Rogers, Hepburn & Wehner, 2003; Ornitz, 1974; Tomcheck & Dunn, 2007). Families report that these sensory behaviors significantly restrict full participation in daily activities for them and their child and consequently, interventions to address them are among the most often requested services (Mandell, et al, 2005; Green,) Despite this, there is no evidence based treatment for these sensory behaviors, and there is limited data on the efficacy of this widely-used treatment.

b. New opportunities.
We need Randomized Control Trials that will evaluate the feasibility, applicability and efficacy of interventions for sensory behaviors. Recent pilot data on early intensive behavioral interventions (EIBI) (T. Smith, et al. 2009) suggests that EIBI DO NOT reduce sensory behaviors and that additional intervention that is specifically directed toward these behaviors is needed. Occupational therapists have the clinical expertise to address these sensory behaviors, but studies are needed to determine the extent, scope and focus of these interventions.

c. Research priorities.
Interventions to address sensory behaviors are a critical need. We know that this is one of the most sought after areas of intervention by families because these behaviors interfere with daily routines and activities of the family and child. Therefore, this area should be a high priority in the research objectives of the IACC.

Respondent 0016

a. Gaps and underrepresented research areas.
There are few interventions that work for these individuals and currently there is no research to develop them. We need research to develop successful interventions for this group. Focus on how to help instead of just how to prevent. WE are here and we need support! In spite of lack of communication being my son's most severe deficit, there is currently no research to develop communication interventions. We need this kind of research now. Almost nothing is known about nonverbal and low-communicating individuals, yet there is no research focused specifically on better understanding this group. In spite of tremendous advances in autism research in the past decade, this group has not benefited from the progress that has been made and little has changed for them.

b. New opportunities.
Supporting people to type has not received adequate research.

c. Research priorities.
Help my son to communicate better! He is highly intelligent, highly literate, but unless it is his thought, he has difficulty answering open ended questions. We must understand why this is before we "judge" them as low-functioning.

Respondent 0017

b. New opportunities.
Scientists must outrun charlatans. Every year billions of dollars are spent by parents who are buying hope from purveyors of services and treatments which are at best suspect and at worst dangerous. Hyperbaric oxygen, IVIG, and chelation are among the prime suspects. If these treatments are effective in treating symptoms of autism, then parents have a right to know and access them. If, however, they are harmful or ineffective, then parents have a right to be warned. While genetic research can tell us where autism comes from, it does little to mitigate the emotional, financial, and immediate dangers that stem from investing limited resources into quack science.

c. Research priorities.
Examine what popular treatments for autism are being undertaken and evaluate which ones are most likely to do harm: Harm in a biological sense and harm in an economic sense to families. Also, look to see what oversights providers of treatments to individuals with autism have. There seems to be no safety net for families or regulatory bodies which can have an impact on these providers of autism snake oil.

Respondent 0018

a. Gaps and underrepresented research areas.
In order to successfully evaluate biomedical interventions we must be able to divide children with ASD into the proper diagnostic subtypes. We must design research studies that make an attempt to identify those likely to respond to the diet (or other interventions) prior to initiating the study. Not one approach will work for all kids but research to date has worked under that assumption.

Respondent 0022

a. Gaps and underrepresented research areas.
Work on those aging with autism is ignored

Respondent 0023

John Best
Hating Autism blog

a. Gaps and underrepresented research areas.
The only reason no controlled trials have shown anything is because you won't do any trials. The study you planned on chelation was designed to fail because you were not going to use Alpha Lipoic Acid (ALA). You must be aware that the only thing that can take mercury past the blood brain barrier is ALA. We already know it works because that is how we have cured kids. IF you want to honest about this, that is the study you have to do and you should only use Andy Cutler's protocol because it is safe.

b. New opportunities.
Behavioral treatments are useless for kids who can't pay attention to anything because their brains are full of mercury. You have to remove the mercury or you're just wasting time and money.

c. Research priorities.
Do chelation with Cutler's protocol. Don't bother with anything else.

Respondent 0024

a. Gaps and underrepresented research areas.
Chiropractic methods and other alternative methods such as acupressure and jin shin jyutsu need to be explored. Also, we need to look at the hormone levels of ASD children as it seems many of the girls/women have similar imbalances.

b. New opportunities.
Chiropractic practices which address neurology have proven helpful with my daughter. Our chiropractor does the Neural Organization Technique which addresses many deficits in the body.

c. Research priorities.
Not all behavior modification techniques work with all people. These methods may only be useful for youngerchildren but can cause problems with older children and adults, as was the case with my daughter. I believe that other alternative methods need exploration.

Respondent 0029

a. Gaps and underrepresented research areas.
What alternative and augmentative communication technologies are effective in autism? What are the long term effects of Risperdal in people with autism? Compare the effectiveness of intensive behavioral treatments to medication treatments for symptoms of autism?

c. Research priorities.
Behavioral methods are easy to study and therefore have gotten most of the attention. Social communication and play interventions should receive more study to determine effectiveness.

Respondent 0031

a. Gaps and underrepresented research areas.
Use competent information from adult and parents of adults with autism to find out what is needed and what works. All too often academics don't have a clue as to what is needed and what works.

b. New opportunities.
Get parents and adults with autism involved with works for treatment.

Respondent 0035

a. Gaps and underrepresented research areas.
Numerous studies exist to support the use of behavioral interventions with children on the autism spectrum. Research for other treatments either don't exist, is not well designed, or is not made available to parents. Parents need to learn how to examine and objectively determine what treatments are right for their child. Places that provide resources to parents about treatments for autism should be required to present parents with the data/literature supporting those treatments. A lot of places just know what treatments people are using and automatically present those to the parents without looking at if the treatments have been studied and/or proven effective.

b. New opportunities.
-well designed research on biomedical, nutritional, and other interventions -studies that examine the validity of tests used by DAN doctors to determine if a child has low or high levels of a substance -studies that examine the likelihood of a child responding to treatments - what factors predict how well a child will respond to the treatment, especially biomedical and nutritional. Some children may respond to those treatments because they truly have a nutritional or biomedical issue but that doesn't mean ALL children will respond. We need to determine what factors predict responding to these treatments and take that into account when studying the treatments.

c. Research priorities.
-Studying biomedical and nutritional treatments more in depth. Controlling for factors that may predict responding. Do not group together children who have gastrointestinal issues and those who do not because they probably will not respond the same

Respondent 0038

a. Gaps and underrepresented research areas.
We need more focus on chelation, biomedical, etc.

Respondent 0046

a. Gaps and underrepresented research areas.
Interventions: Parent questionnaires, including information concerning when they first noticed something different about their child. This may have been at a very young age.

b. New opportunities.
Educating the public and the pediatricians regarding symptoms and signs of ASD.

c. Research priorities.
Education and therapies which are mandatory during the first two years. IE: Occupational Therapy, Speech & Language, Vision, Physical Therapy, ABA.

Respondent 0047

a. Gaps and underrepresented research areas.
Biomedical intervention, dietary restrictions (such as a gluten-free, casein-free diet), and homeopathic remedies to cleanse the body of toxins... all have made an enormous difference for my twin grandsons, both of whom are now making amazing progress in their communications and developmental skills.

b. New opportunities.
The last paragraph does mention these possible treatments, and then says "these treatments involve more than minimal risks". I don't know what "risks" there are for giving a child a diet free of fast food & processed sugar, and feeding him or her fruits, vegetables, and organic meat. It is certainly not as much risk as pumping more chemicals into them via more prescribed drugs. The people who caution against such "natural" solutions are (once again) related to the manufacturers of the vaccines and drugs, who only want to sell us more of the same.

c. Research priorities.
Stop listening to only the drug companies and insurance companies and their paid "experts" and start using some common sense. Do the INDEPENDENT research into the natural, healthful possibilities, and give our kids a break from the cycle that says there's a pill for whatever ails you.

Respondent 0049

a. Gaps and underrepresented research areas.
Completely underrepresented: Teaching neurotypicals to think like autistics. ASD individuals are not "in their own world." They are in ours and we are in theirs. Those strange noises or repetitive behaviors are communication, make no mistake, and our vocabulary and hand gestures are just as strange to them as their choice of communication is to us. We need to reach out, too. They don't understand how to communicate effectively and appropriately with us. We need to take it upon ourselves to understand them first, and then teach them how neurotypicals expect to give and receive communication. We can't expect them to understand us...we have to reach out to them on their terms because they don't know what our terms are. We have the advantage. We need to use that advantage with more sympathy and compassion.

b. New opportunities.
Teach neurotypicals what it's like to be autistic. Imagine a world without filters: colors have sound, tastes feel, sound has mass, and every noise has an equal priority, from the delivery truck outside to your teacher reading a story to the airplane overhead to the buzzing of the fluorescent lights. Sensory input is constant, pervasive, intrusive and sometimes physically painful. We need to understand that before we start to address behavioral issues.

c. Research priorities.
Start with us. Then move on to them.

Respondent 0052

a. Gaps and underrepresented research areas.
This area tends to be one of the hardest to get reliable data on just because of how many people are trying a whole slew of treatments all at the same time, backed up by all the "studies" that have been unprofessionally or immorally carried out and/or presented by many special interest groups. Still, I think more structured and well documented studies would be advisable, especially with many of the commonly proscribed bio-medical treatments and many of the mind altering drugs often thrown in and some updated studies on the effectiveness of many of the behavioral therapies out there. I worry that improper training and execution of many of the common treatments being used today may be leading many parents to unintentionally cause more harm than good to their kids.

b. New opportunities.
Everyone who works with ASD seems to agree that early diagnosis and treatment is the key, but that seems to be where they stop agreeing. We have the Bio-med crowd that has a million and one "cures" that they want you to try all at once, the part of the medical community that wants to just throw medications at it till it gets better or goes away, the part of the medical community that is reluctant to do much more than therapy, and the confused and frustrated patients and family that don't want to make things worse but often can't find enough information to do much more than make a semi-educated guess and take a leap of faith. There needs to be some real comparisons done and made available that actually look at all of it that families can use to examine these treatments side by side and make better choices faster.

c. Research priorities.
There are plenty of studies already about the effectiveness of many of these on Autism, but there are some still needing to be studied and I have yet to see any one that has effectively compared and contrasted them to each other. So the focus should be to complete and organize them into an accessible and usable format so that when a family gets told which treatments the doctor would suggest, they can easily access information on the suggestion and compare it to what else is available. Doing research is great, but if you don't know what to search for it is far too easy to be misled.

Respondent 0054

a. Gaps and underrepresented research areas.
Ivar Lovaas has received considerable funding from the NIMH to publish the adult outcomes of his research subjects, nearly half he claims have completely recovered from their autism. If he and the people whom he has worked with do not publish these findings, discontinue all funding for ABA research immediately.

b. New opportunities.
There are no interventions that are helpful.

c. Research priorities.
None right now, just look for a cure.

Respondent 0055

a. Gaps and underrepresented research areas.
There is no mention of treatments or interventions for adults. This is all about children. The majority of people with autism will become adults, the majority will be untreated as adults, and their "programs" are more expensive than their schooling was.  Therefore, Research ways to identify adults and find ways to help them.

b. New opportunities.
Conduct trials on the real effects and side effects of psychotropics. Adults with severe autism are typically taking multiple medications in off label uses. Do the trials; find what works, what doesn't, what is good, what is harmful. Right now we have a national uncontrolled experiment with adults with severe ASD, living in controlled settings as the guinea pigs.

c. Research priorities.
Establish effective practices for intervention with adults. Establish the prevalence of severe ASD in adults who were diagnosed with other disabilities in the years before DSM 1, II which did not include ASD and III and IV which had widening definitions. Such a discussion would also inform the "epidemic" debate.

Respondent 0057

a. Gaps and underrepresented research areas.
Stick to the scientifically validated methods to prevent wasting families' time and limited resources

Respondent 0059

a. Gaps and underrepresented research areas.
Tom Insel is the brother of Richard Insel who helped invent the Hib vaccine; I do not think he should be the one to decide where the research dollars should go to find the cause of autism since the cause is VACCINES. Does that sound like an honest thing to you?

b. New opportunities.
* The John Hopkins University- Modified Atkins diet or low glycemic diet for those with vaccine injuries needs to go public, and doctors need to be trained in its use and its importance. *Hyperbaric chambers do work soon after a stroke reaction to a vaccine. *Inflammatory diseases researched and learn how to stop it. *Doctors needs to be trained how to treat vaccine injuries, and how to prevent them. *Tom Insel has a vested interest in keeping the real cause of autism (vaccines hidden) because his brother help invent the Hib vaccine.

c. Research priorities.
*Titer test or other tests to see who already has immunity and not over-dose those that do have immunity and end of giving them autoimmune diseases. * Get rid of Tom Insel who has special interest in keeping the reason of the increase of autism hidden. His brother is Richard Insel who helped develop the Hib vaccine and earned over 4 million in the sale of this product.

Respondent 0060

a. Gaps and underrepresented research areas.
Improvements in the review process for conducting treatment research are needed and the Department of Defense CDMRP for autism mentioned in our comment earlier should be used as a model to create a higher degree of transparency and meaningful public participation. Public members, in recognition of the urgency needed to address this crisis, voted to quadruple the number of research projects in short-term objectives 1, 2 and 6. Treatment research is desperately needed.

b. New opportunities.
An increase in and improvement of research designs are that consider subgroups of responders versus the aggregate treatment response with recognition that treatment response can inform phenotype studies is needed. Treatment research is desperately needed. Quadruple research projects to identify biological signatures measuring changes in ASD core symptoms across the lifespan to 20 projects. Quadruple randomized controlled trials addressing co-occurring medical conditions to 12 trials. Quadruple safety and efficacy test for widely used interventions (e.g., nutrition, medications, medical procedures, etc.) that have not been rigorously studied for use in ASD to 20 interventions inclusive of partnering with ARI.

c. Research priorities.
As in Question 3, the public IACC members voted for substantial increases in short-term objectives in this section and were again outvoted by federal members. A higher priority must be placed in the items recognized by public IACC and the noted lack of urgency displayed by Federal members of the committee is not aligned with the needs of the community and must be remedied.

Respondent 0061

a. Gaps and underrepresented research areas.
Striking examples of successful treatments in animal models have emerged in the last two years. Robust animal models such as Frm1 Fragile X mice, Mecp2 Rett mice, Tsc tuberous sclerosis mice, mice with mutations in neuroligins and shanks, and the BTBR and BALB inbred strains, provide useful translational tools for discovering effective therapeutics for the diagnostic and associated symptoms of autism spectrum disorders. A pharmacological or behavioral treatment that reverses autism-relevant symptoms in animals will provide preclinical evidence for the value of a clinical trial.

b. New opportunities.
Mouse models with mutations in candidate genes for autism spectrum disorders offer an opportunity for rational design of treatments. Increased focus is needed to generate optimal mutant mouse models, and then to determine the phenotypic outcomes relevant to autism that appear in mice with a candidate gene mutation. The best models should then be made widely available as research tools to screen proposed treatments for efficacy. Examples of putative therapeutics include mGluR5 antagonists, rapamycin analogs that act through mTOR and ampakines that normalize dendritic spine abnormalities.

Respondent 0074

a. Gaps and underrepresented research areas.
Try looking at children who are recovering from autism, and ask their parents how they did it.

b. New opportunities.
Study GFCF diet, heavy metal chelation, hyperbaric oxygen therapy, use of antifungals & antibiotics to correct gut dysbiosis.

Respondent 0075

a. Gaps and underrepresented research areas.
70 years of behavior treatments springing from not-the-whole-truth guesswork made while always looking only at negative aspects, and only in frustrated, apprehensive, and worn down children, has done harm to many individuals with unrecognized useful capabilities. From our experience, people living on the autism spectrum can and will often approach near normal behavior and perform quite well, IF they are valued in society for their uncommon capabilities and skills, treated with respect, and challenged appropriately.

b. New opportunities.
Concerning the condition surrounding autism, the Medical Psychological Academic Community Claiming Concern With Autism has been naively chasing symptoms of a problem, mistakenly assuming the symptoms are the problem. If the Medical Psychological Academic Community Claiming Concern With Autism learns the requirements and utility of the SPRATS of an individual with autism symptoms, and the SPRATS interaction with the individuals Life Needs (R-W-N-S-eHa-UA-eHoE-ESaC-IdF-aHa-DHoE-EBI) while employing appropriate POSITIVE BEHAVIOR SUPPORTS, such WILL optimize the development of a large number of eccentric experts, with a positive outlook on self and society instead of a bore with poor social skills. These people, with a real chance for success as an independent adult, will be taxpaying contributors to society and not a drain.

c. Research priorities.
see IV b

Respondent 0077

a. Gaps and underrepresented research areas.
Examine criticisms of ABA. Why did the Canadian Supreme Court rule that the Canadian health service could not cover the treatment? If President Obama's healthcare plan passes what will or will not be covered under that plan? Are there any treatment plans that take advantage of the Aspie or Autie's natural strengths and abilities and encourage them?

b. New opportunities.
N/A

c. Research priorities.
The number one priority ought to be examining the best ways in which an intervention program could be tailored to the patient's strengths and weaknesses, thereby showing how such a person would be able to overcome deficiencies using innate strengths.

Respondent 0095

a. Gaps and underrepresented research areas.
More research is needed on how ABA is accredited and licensed. Many folks are out there saying they do ABA, when perhaps they do not have the true training. It would be nice to see more research into hippotherapy.

Respondent 0097

a. Gaps and underrepresented research areas.
To the best of my knowledge all current treatments are hit-and-miss with only anecdotal evidence to show their efficacy, and there's been little research or follow-up to evaluate most of what is offered. What strategies, interventions, medications, therapies, and any other treatments are effective when judged by a clear standard? Clear standards might include passing tests, ability to attend school, hold a job, etc, after a therapy is administered.

b. New opportunities.
The most promising avenue I see is a change in societal standards so that disability is accommodated as a matter of course. When people with autism and other conditions are accepted members of society and have a known role including useful work if possible, perhaps everyone will realize that we all benefit when everyone is included in the community.

c. Research priorities.
I believe research should only be funded that is based on sound science, conducted by qualified individuals, and not conducted with a profit motive in mind.

Respondent 0102

a. Gaps and underrepresented research areas.
Listen to the parents whose children are improving!!! Regardless of whether mainstream medicine has caught up yet, these are some of the interventions that work: Diet - removing gluten, dairy, msg, artificial colors and other foods that directly affect behavior Chelation - removing the mercury, aluminum, and other toxins that were injected into these babies Antifungals - containing the yeast overgrowth that occurs in the vaccine-damaged gut Supplements - Each child has deficiencies in vitamins, minerals, fatty acids and others. By testing for and properly supplementing, behavior and cognition improve! ABA therapy, sensory integration therapy, RDI and other therapies that break down tasks into manageable goals to help children learn to deal with the world around them. Hyperbaric Oxygen therapy - pre and post scans show increased blood flow in the brain, and improvements are reported in cognition, social skills, language, self-stimulatory behavior, and overall health.

Respondent 0105

a. Gaps and underrepresented research areas.
Alternative Medicine Treatments. Beyond conventional medication-based treatment of ASD that has poisoned our children without therapeutic effect, I would consider investigating Alternative and Complementary Treatments that are harmless and appear to work very efficiently in many cases, such as special physical exercise, Hatha Yoga (Yes, it works!),and physiotherapy, to name but a few.

b. New opportunities.
As a form of treatment, we need to try to use and to better understand the healing power of nature, physical exercise and activities outdoors, play with natural materials, clean dirt and water, and outdoor gym. Colored plastic materials can trigger too many sensory and toxic stimuli in the brain and should be avoided as much as possible. Synthetic carpets, painting materials and detergents, colored foodstuffs with additives, etc. should be equally avoided. Even vitamin D added to milk could be in question. As persons with ASD have a vulnerable neurological system, any of the above might affect them more than the rest of the population. Fine and elaborated studies with detailed protocols should be conducted.

c. Research priorities.
As two persons with autism are not alike, special individualized education and physical exercise are the best treatments for autism. But many times medication is necessary in periods of crisis or huge stress and anxiety or when co-morbidity, as epilepsy, is present. As many persons with ASD are usually on more than two different medications per day, the side effects of their interaction cannot be evaluated. Therefore, more studies on drugs used on autism and their effectiveness, must be conducted.

Respondent 0116

a. Gaps and underrepresented research areas.
I have observed my son make incredible progress with Pivotal Response Training, behavior therapy. I have discussed with doctors that there are other treatments that may help just a little, but if I could access those treatments in combination it may result in large changes for my son. New "alternative" treatments need to be covered by health insurance.

b. New opportunities.
Insurance companies need to understand autism is a medical problem and the symptoms relieved through a variety of treatments, including pivotal response training, behavior therapy.

c. Research priorities.
Insurance companies need to cover behavior therapy as a medical treatment for a medical condition.

Respondent 0119

a. Gaps and underrepresented research areas.
The low-functioning population with ASD continues to be excluded from research. The nonverbal group (those who cannot speak) is estimated to comprise 20% of the autism population and the low-communicating (those who can speak but are unable to communicate) is estimated to be about 30%. Together this group, which is often referred to as "low-functioning autism," makes up about half of the autism spectrum. Yet because of challenges presented by their profound communication and behavioral deficits, this 50% of the autism population has gone almost entirely uninvestigated and successful interventions have not been developed. In particular the nonverbal group has been historically underrepresented in research. This group continues to be almost completely excluded from current research and is rarely included in prospective studies. Combined, this 50% of the autism spectrum has been left behind and has benefited little in spite many advances in the field over the past decade.

b. New opportunities.
For the nonverbal and low-functioning, little has changed in terms of research or intervention. We need to focus on five areas in order to begin to include this group in research and develop useful interventions for them. 1) Phenotyping: Increase our understanding of this population by characterizing this subgroup and the phenotypes within it through multi-system investigation including cognitive, genetic, metabolic, neuroimaging, electrophysiology and other indices. Develop phenotype criteria for research inclusion. We know almost nothing about them. 2) Characterizing Cognition: Develop noninvasive technologies that can measure cognitive function in the absence of behavioral compliance. There is a wealth of research in detecting and measuring cognitive function in other noncompliant populations such as infants, primates and those with locked-in syndrome. (Continued)

c. Research priorities.
3) Communication Interventions: Research and develop interventions that can improve communication for this group. Multiple approaches will be required as this will likely be a very heterogeneous group. There is much to be learned from research in other communication disorders. 4) Standardized Tools to Measure Cognitive and Psychosocial Function: Develop new and adapt existing standardized tools to measure IQ and psychosocial function. If basic communication can be established (i.e. pointing or choosing) many validated measures can be adapted to multiple choice formats and used with the nonverbal population. 5) Include Low-functioning Subjects in Research Now: Although including low-functioning subjects is often impossible due to profound communicative and behavioral handicaps, an estimated 10-15% are compliant and can participate in research that does not require expressive language. A simple check list could be developed that would identify these candidates for inclusion in research now.

Respondent 0125

a. Gaps and underrepresented research areas.
In the words of Dr. Paul Law, there has been an ongoing $3 billion project looking into treatments and interventions conducted in families' homes across America. Redundant research on alternative therapies is a waste of time, energy, and money. Even a broken clock is right twice a day. I would prefer to see the limited research dollars spent more on quality pharmacological interventions. I do think, however, that the Department of Education has shirked its responsibilities to our children by not producing a best practices manual for autism education. The materials produced to date are quite out of date and not truly best-practice.

Respondent 0130

a. Gaps and underrepresented research areas.
As mentioned in a previous post to the IACC, I feel that studies of therapies for epileptic seizures have not been well represented in the planning for future research. In section 4, GI symptoms and sleep disorders are mentioned, but seizures may be more common (30%). Antiseizure medications such as Lamotrigine, Carbamazepine etc., may in fact be used more frequently than are antipsychotics such as the FDA approved Risperdal.

b. New opportunities.
Possible research could include: Surveys of children and adults to find out which medications are currently being used for treatment of seizures, and if there are any side effects that seem specific to autism spectrum disorders (e.g.: irritability, is it just seen with Levitiracetam or other medications as well). Basic science research could include using animal models of autism such as Valproate exposed rat pups to identify neurotransmitter changes which could be targeted as therapies (For instance, if GABA is altered in animal models, could try Vigabatrin as a potential therapy). Medication comparison trials might be helpful, using medications identified in the survey mentioned above; (so if in fact Carbamazepine and Lamotrigine are popular with clinicians, a randomized study to crossover from another med could be designed and funded. For example Phenytoin to Lamotrigine could be compared to Phenytoin to Carbamazepine).

Respondent 0131

a. Gaps and underrepresented research areas.
a. What relevant research topics are missing or underrepresented in section IV? Evidence based comparative effectiveness research that identifies effective treatments is needed. While there are many early-stage efficacy investigations available which provide preliminary support for the efficacy of speech-language pathology interventions to improve speech, language, and social communication, much more research is needed. In particular, group design studies directly comparing the effectiveness of different approaches using randomly assigned, matched control samples with sufficient sample sizes and adequate statistical power are needed. To date, the evidence is inconclusive regarding whether any one approach is more effective than another. There also needs to be greater emphasis placed on sub-groups within the ASD population and the responsiveness of these sub-groups to various treatment approaches.

b. New opportunities.
Comparative effectiveness research should clarify our understanding of the effectiveness of different intervention approaches, especially with respect to which approaches provide the most meaningful communication and social interaction outcomes for young children with autism. Given that the core features of ASD entail disordered social communication and language use, the discipline of speech-language pathology has much to contribute to future research evaluating the comparative effectiveness of approaches to treating social, communication, and cognitive impairments in ASD. Research is also required to determine how common practice in screening, assessment and treatment is impacted by state and local regulation and state interpretation of federal guidelines.

c. Research priorities.
Conduct five randomized controlled trials of early intervention for infants and toddlers by 2011 ASHA suggests that these trials be directed to evaluating the comparative effectiveness of approaches to treating speech-language, social, communication, and cognitive impairments in ASD. Examination of the impact of changes in frequency, intensity, and duration of treatment is a critical issue to be included in these trials. By 2012, conduct three randomized controlled trials to test the efficacy and/or effectiveness of interventions to treat speech, language, social communication, and cognitive impairments for school-aged and/or adolescent persons with ASD evaluating the comparative effectiveness of approaches in ASD. Examination of the impact of changes in frequency, intensity and duration of therapy is a critical issue to be included in these trials.

Respondent 0133

a. Gaps and underrepresented research areas.
Cannot really look at this unless the models are in place and the sub typing work has gotten underway, because the variation is HUGE and so are the treatments that "work"

c. Research priorities.
ARI has launched a parent database for parents to put in information about child and which treatments work and don't using symptomology. It is a start.

Respondent 0137

a. Gaps and underrepresented research areas.
Metabolic interventions that normalize redox and methylation status can be effective in treating autism, especially if they are provided at an early age. However, these treatments receive little attention because they are not covered by patents and they actually compete with proprietary drug treatments, representing a threat to the pharmaceutical industry, rather than an incentive. To address this, a novel industry/government partnership is needed to increase research, development and marketing of metabolic interventions.

b. New opportunities.
There is some limited possibility that novel proprietary agents can be developed that will normalize redox and methylation status in autism. However, this will require additional research to identify novel targets related to these metabolic pathways. Research into epigenetics.

c. Research priorities.
As above, priority should be given to evaluating and optimizing treatment regimens aimed at normalizing redox and methylation pathways and to understanding how those pathways relate to development and to normal neurological development.

Respondent 0140

a. Gaps and underrepresented research areas.
-The biomarkers for medical problems concomitant to an ASD diagnosis. -A protocol of testing in blood, urine and fecal stool non-invasive- including under dietary changes- to properly test mitochondrial, nutritional, immune, viral/bacterial/fungal metabolic and biochemical status in ASD on time. -A protocol of proper treatment of the imbalances found, considering the other medical problems many times present in different ASD subgroups that should be properly explored and analyzed. -The proper analysis of adverse reactions to xenobiotics from the physiologic, metabolic, biochemical and developmental point of view in ASD. -The role of medical support, family, school attitudes. Strategies of educative inclusion.

Respondent 0141

a. Gaps and underrepresented research areas.
I think that in addition to researching what will help, we also need to look at what won't help. I've seen otherwise appropriate therapies, such as ABA, given to children in environments so bombarded with sensory input that the child shut down. I've heard parents and teachers punish a child for having a meltdown "for no reason" when it was plainly clear to me that the child was experiencing sensory torture. No one would expect a person to learn or behave well if they were being stabbed with a knife over and over. Autistic people often experience that level of pain from seemingly innocuous stimuli, such as a wrinkle in a sock, the whir of the air conditioning, or the smell of a person's hair. Before concluding that a given treatment does not work, identify and eliminate all sensory problems in the environment.

b. New opportunities.
Instead of wasting money to prove once again that vaccines are not linked to autism, I think you should study why people believe in conspiracy theories, and what we can do to cure prevent it. Research treatments and interventions that have helped holocaust and AIDS deniers. Establish a genetic bank of conspiracy theorist cell and tissue samples to identify risk factors and eventually lead to prevention and/or cure. Is believing in anti-vaccine theory linked to intelligence, emotional instability, or other genetic risk factors? Does is strike all populations equally? What can we do to help these people have a better quality of life? It is an enormous financial and psychological burden to care for an anti-vaccine theorist. The money they spend on dangerous, ineffective treatments for their children is enough to bankrupt a family, costing over $4 million across the lifespan of the theorist. Their numbers are increasing to epidemic proportions. Action is needed now.

Respondent 0146

a. Gaps and underrepresented research areas.
Recommend research into other comprehensive, developmental treatment models such as DIR/Floortime.

c. Research priorities.
Recommend priority be given to comparing the efficacy of treatment models, such as ABA and DIR/Floortime. Recommend more funding of treatment and intervention for teens and adults with autism.

Respondent 0148

a. Gaps and underrepresented research areas.
1. ABA research has been plentiful in comparison to Relationship-based interventions. This is due somewhat to the higher degree of difficulty constructing sound measurements and standard procedures for measuring core developmental skills and how well the latter treatment approach restores and optimizes developmental growth.

b. New opportunities.
See answers to Question #1

c. Research priorities.
same

Respondent 0151

a. Gaps and underrepresented research areas.
We need to recognize that ASD is also a biological disorder and thus some treatments are very effective. For both our children chelation and vitamin B12 injections made significant improvement. For our son, sequenced amino acid modulation (SAM) made a step change in his confidence and ability to communicate. Our daughter did not have the same biological signature and thus the SAM was not attempted for her. She takes numerous supplements to control her neurotransmitters (over stimulation - abnormal glutathione, serotonin, adrenalin). This has been effective at allowing her to sleep at night and somewhat focused in the daytime, but she still has a long way to go. She also has candidas, which is a constant battle of very limited diet supplemented with probiotics. I hate to see such limited attention on these treatments. These are also very expensive and it would be wonderful if insurance supported some of these. Both children are also involved in behavioral therapy, which is good.

b. New opportunities.
Perform additional studies (or gather information from existing studies) that support biological treatments in parallel with behavioral therapy.

c. Research priorities.
Much research has already been committed to behavioral therapies. It is time to place focus on other biological therapies that can be used in concert with existing proven techniques. Need to pressure insurance companies to support families with autism in covering currently "alternative treatments."

Respondent 0153

a. Gaps and underrepresented research areas.
Reducing or eliminating prenatal ultrasound events.

b. New opportunities.
Whether babies born without ultrasound events are less likely to be autistic.

c. Research priorities.
More highly prioritize trials of births without ultrasound events.

Respondent 0154

a. Gaps and underrepresented research areas.
Gluten free, soy free, Casein free diet and Probiotics to heal the gut.

b. New opportunities.
Seek out a DAN! (Defeat Autism Now!) physician....seek out ARI Autism Research Institute, Dr. Bernard Rimland.

Respondent 0157

a. Gaps and underrepresented research areas.
Information needs to be issued in a simple, understandable (i.e. not a lot of medical jargon) format listing factual information based upon the latest research and studies. Basic information on brain function and development and how autism impacts this process would also be useful. It would also be helpful to have information regarding efficacy research for each of the interventions.

Respondent 0161

a. Gaps and underrepresented research areas.
BIOMEDICAL TREATMENTS. A study about to be released by the NIMH indicates a recovery rate of almost 40% of those surveyed. A RECOVERY rate! Do you understand that the current medical opinion says that is IMPOSSIBLE? So ask those parents with recovered children: which of you used biomedical treatments? Which of you used traditional therapies alone? Which of you did nothing and your child just magically grew out of it? The vast, vast majority will tell you they used the biomedical protocol--dietary/nutritional, immunological, and toxicological. AUTISM IS TREATABLE. Every day, more videos of recovered children are being posted on YouTube. That's the only way to get the word out when our doctors refuse to listen. My own son has accomplished 18 months of developmental progress in just 4 months of biomedical treatment. I have deeply compelling before and after videos--yet his pediatrician REFUSES TO WATCH THEM. Biomedical is the answer and you need to start listening.

b. New opportunities.
1.) The gluten-free, casein-free diet. 2.) Digestive damage and infections, including bacterial, fungal, and parasitic infections. Antibiotic/antifungal/antiparasitic medications. 3.) Key nutritional supplements such as Zinc, Magnesium, Omega fatty acids, Vitamin C, Vitamin D. 4.) Treatments for immune dysfunction: MB12 shots, TSO pigworm therapy 5.) Treatments for mitochondrial dysfunction: CoQ10 6.) Chelation of heavy metal poisoning.

c. Research priorities.
In the order listed above, because that is the order that parents will need to progress through the treatments, and the sooner they can be convinced to put their children on the GFCF diet, the better their chances for recovery.

Respondent 0168

a. Gaps and underrepresented research areas.
A major perspective missing is how to tap into and understand the experience and needs of people with autism directly from them and how this information can inform interventions. There should be a goal focused on examining perspectives of experts of actual experience on what is needed to improve daily life, and then initiatives to translate this knowledge into testable intervention strategies.

b. New opportunities.
Incorporating the perspectives of people with autism is needed.

c. Research priorities.
It is important to know what works, but also to know what works in real-world settings. So, priority should be on using interventions in typical life situations, not special lab schools.

Respondent 0173

a. Gaps and underrepresented research areas.
The effects of puberty and hormones on ASD symptoms, possible regression, and child's needs. What should parents look for when adjusting treatments (behavioral and medicinal) during puberty?

c. Research priorities.
Please continue to realize that Autism is not terminal, these kids do grow up. Also successful early intervention does not necessarily mean cure. These kids still need some level of support. That part needs to be better defined and communicated. The social scene is brutal after about 3rd grade.

Respondent 0176

a. Gaps and underrepresented research areas.
Parenting a child with ASD is intense and increasingly socially isolating as children age; thus, parents should be informed about, and encouraged to pursue, any interventions that promise to ameliorate behaviors and increase independence, functional communication skills, and educability. While this may sound like a sweeping and nebulous statement, it is fair to allow parents to investigate and try any and all biological and behavioral interventions that may help a child. No therapy, intervention, or course of treatment is easy for a child, whether it is administered at home or in an office, by a parent or a professional, and a child's resistance, combined with the inherent difficulty in administering the treatment itself (such cooking and eating a special diet) makes the prospect of intervention fatiguing from the outset. However, parents pursue intervention because the behaviors and manifestations of ASD are so challenging that any promise of improvement is worth the effort.

b. New opportunities.
Advance research and knowledge regarding dietary interventions, their efficacy and applicability, and educate parents and care teams (both Early Intervention and school-based educators and professionals) in supporting the efforts necessary to test this effective tool for reducing behaviors, increasing focus, and improving educability. Research chemical sensitivity on learning, perception, and performance with children with ASD. Remove chemicals and toxins from homes and educational settings, including perfume from teachers and cleaning products, as well as lighting and sound changes to minimize sensory overload. Increase research and knowledge on assessing perspective-taking for verbal children with ASD. Use this tool (developed by speech-language pathologist Michelle Garcia Winner) in special education settings and inclusive classrooms as children with ASD tend to lose social skills the longer they are mainstreamed. Give all children with ASD auditory integration training.

c. Research priorities.
Make biological interventions first priority. Research reduced behaviors and increased attention focus and attention span using an individualized diet, supplements, chelation, environmental detoxification, and exercise. Determine how the research findings can be best implemented in care teams consisting of parents and Early Intervention specialists and school-based personnel. Second, research the efficacy of 1:1 aides in mainstream classrooms for children with ASD (speaking children). Measure whether the use of an aide assists in retaining or increasing social skills/conceptual understanding (these skills tend to decrease when unaided in mainstream settings). Third, apply Auditory Integration to all students with ASD. Measure their advances. Fourth, research perspective-taking and functional communication skills and assessments with children and youth with ASD. Develop and implement programs to measure advances based on increased functional communication and social skills.

Respondent 0181

a. Gaps and underrepresented research areas.
IV. Which Treatments and Interventions Help Again, we strongly support resources in the previously mentioned AAP webinar on identification and management. We also highly recommend the National Research Council's Educating Children with Autism at www.nap.edu This link exits the Interagency Autism Coordinating Committee Web site which was clinically researched interventions proven effective in the treatment of autism thus far. We agree with the IACC recommendations to include occupational therapy and sensory integration. Under communication, we would suggest the addition of speech therapy particularly in the area of pragmatics. In addition to augmentative communication devices, we support the use of total communication which is speaking and using sign language simultaneously. (Continued)

b. New opportunities.
We would also suggest looking at the AAP clinical practice guidelines and policy statements on autism which do NOT recommend casein/gluten free diets, nutritional supplements, chelation, or secretin (see http://www.aap.org/advocacy/releases/oct07autism.htm This link exits the Interagency Autism Coordinating Committee Web site and http://www.aap.org/pressroom/issuekitfiles/ManagementofChildrenwithASD.pdf This link exits the Interagency Autism Coordinating Committee Web site). We would recommend the use of the National Institute of Health research of the National Center for Complementary and Alternative Medicine found at http://nccam.nih.gov This link exits the Interagency Autism Coordinating Committee Web site. We would also suggest the addition of social skills therapy. (Continued)

c. Research priorities.
Lastly, in looking at three randomized controlled trials of interventions for school-aged and/or adolescents by 2012, the IACC should keep in mind the recent GAO report at www.gao.gov/highlights/d09719thigh.pdf This link exits the Interagency Autism Coordinating Committee Web site on the use of aversive interventions and restraints which disproportionately affects children with autism in school and affects outcomes, as well as the 8/3/09 letter from the U.S. Dept. of Education at www.ed.gov/news/pressreleases/2009/08/08032009a.html This link exits the Interagency Autism Coordinating Committee Web site on the same topic. It is our position that the use of aversives is never justified and that the use of restraints must be strictly limited to those situations where it is absolutely necessary to protect the safety of the person with autism or others and only to the extent necessary to protect that safety. Further, positive behavior supports must be utilized as the preventive and intervention method of choice.

Respondent 0187

a. Gaps and underrepresented research areas.
Many applications that are now being used have not been properly examined to see if they apply to nonverbal ASD individuals. No research is being done on this critical area. Expensive and time-consuming therapies are used across the spectrum, although needs of nonverbal individuals may be quite different from those who are higher functioning. One size does necessarily not "fit all" yet even caring professionals apply the same methods for all of their clients, and perhaps this is not only based on very limited options, but also because NO RESEARCH IS BEING DONE to see if in fact this is an appropriate approach for nonverbal ASDs.

b. New opportunities.
Testing, testing, testing. Among other priorities, research must be done to develop standardized testing for nonverbal ASDs to measure cognitive functioning and development. Otherwise, there is no way to know if interventions and therapies are too difficult or too easy. Because most nonverbal ASDs are not able to give 'typical' social cues, and because many are limited in typing or other hand-related forms of communication, there is no accepted, defined way to access treatment. -See also other comments.

c. Research priorities.
Research to develop testing. See notes above.

Respondent 0190

a. Gaps and underrepresented research areas.
In the mix of various intervention strategies to be studied (inclusive of behavioral, developmental, and cognitive therapies), it is hoped that consideration will also be given to models that focus on early intervention as a system of supports and services for families to assist them in helping their children develop and learn (research to support how children learn best through everyday experiences and interactions with familiar people in familiar contexts).

b. New opportunities.
With the Aspirational Goal of developing effective interventions, an opportunity exists to more fully study assessment strategies that result in the mapping of a specific plan of interventions tailored to the unique abilities of individuals with ASD. Through the Ohio Center for Autism and Low Incidence (OCALI), work has been underway to promote a framework for a comprehensive program planning system for students. This framework considers the underlying needs and characteristics of ASD and builds upon an individual's strengths, special interests, and environmental factors. This then leads to a combination of interventions that are: designed specifically for the individual; systematically embedded throughout the day; and are more proactive and fundamental. Increased research that investigates models of service delivery that recognize the importance of an individualized comprehensive planning approach, across settings and throughout an individual's day, should be further explored.

Respondent 0194

a. Gaps and underrepresented research areas.
While more medications and behavioral interventions are in the pipeline for individuals with ASD, the vast majority of clinical trials conducted to date has not taken into account individual differences, and only have addressed how an individual treatment compares to a placebo. Very few studies have been conducted that make head-to-head comparisons of two or more treatments. Thus, existing efficacy trials have provided limited information about which individuals benefit most from which treatments. Given the early stage of development of comparative effectiveness research in the field of autism, it is imperative that large clinical registries and clinical trials networks within real world service delivery settings be developed and sustained to move the field forward.

b. New opportunities.
The availability of comprehensive databases and patient registries that include detailed phenotypic data, including biospecimens, is critical to support the development and application of biologically based approaches to diagnosis and treatment of individuals with ASD. While the NIH recognizes and encourages biospecimen collection, it is important to invest in the development of infrastructure to support cost-effective methods for specimen collection, storage and distribution. It is also important to leverage existing NIH funding (CTSA sites/GCRCs) to support these types of collections. Furthermore, the development of centralized bio-specimen repositories that move beyond collection of DNA is critical to better understand the co-morbid medical complications associated with autism across the lifespan.

c. Research priorities.
Given that ASD is an extremely heterogeneous group of disorders, it's clear that the development of effective treatments will require a personalized medicine approach that takes into account individual differences in etiologic, phenotypic and biologic characteristics. It is important to support treatment research with special populations within ASD that are more phenotypically distinct in order to better target these studies and reduce costs of large RCTs. These populations can include lower-functioning individuals, individuals with regression or individuals with distinct co-occurring medical or psychiatric conditions. Another treatment area that is underexplored is crisis intervention, especially for adolescents. Some adolescents with ASD experience severe regressions during their adolescent years and many require hospitalizations to adjust medications or receive intensive behavioral treatment.

Respondent 0196

a. Gaps and underrepresented research areas.
I think you are severely underrepresenting low-communicating and noncommunicating population in your research. There are few interventions that work for these individuals and virtually no research to develop them. We need research specifically focused on this group. This constitutes a large portion of the autistic community. They need help NOW!

Respondent 0199

c. Research priorities.
Please help us by providing more research and placement opportunities for our children who are nonspeaking. It is painful to both ourselves as parents and our child when they are not properly respected as individuals because of their unique disabilities.

Respondent 0200

a. Gaps and underrepresented research areas.
What is being developed for nonverbal children? Can you develop something? There is so much technology and we learn more every day. It seems unbelievable that we cannot help these children. It would change their lives and the lives of their families.

Respondent 0202

a. Gaps and underrepresented research areas.
Giving our loved one a means of communicating

Respondent 0203

a. Gaps and underrepresented research areas.
Supported typing (also known as Facilitated Communication)

b. New opportunities.
What is happening when kids who don't ordinarily attend to what we are trying to teach them can sit at a keyboard and organize their thoughts to type a response? Can we make better use of computers for learning/communicating?

c. Research priorities.
Communication Sensory issues Neurological issues Brain plasticity and autism

Respondent 0208

a. Gaps and underrepresented research areas.
The missing research is in getting individuals w/ASD who are nonverbal to talk. There needs to be more research done on effective treatments for that.

Respondent 0209

a. Gaps and underrepresented research areas.
I am the mother of a nonverbal child with autism. I feel there needs to be much more research aimed at interventions toward this group. Little is known about how to help this group learn to communicate and function better within the family, classroom, and society. Please include much more research funds toward this group of the autistic population.

Respondent 0210

a. Gaps and underrepresented research areas.
Research is needed as to how to train special education teachers to work with individuals with ASD across the lifespan, the need for specialized training in ASD, and the documentation of educator effectiveness in working with children on the spectrum. Little if any funding or priority is given to short and long term research objectives directly involving public and private schools. Research on interventions that target needs of adults and the training of providers to work with this population.

c. Research priorities.
Priority should be placed on interventions that improve functioning and quality of life for adults with ASD.

Respondent 0211

a. Gaps and underrepresented research areas.
Non- medicinal treatments which are affordable, like diet.

Respondent 0212

a. Gaps and underrepresented research areas.
1) Nonverbal and low-communicating individuals with autism, (often referred to as low-functioning), have been almost entirely excluded from federally funded research. 2) The nonverbal subgroup represents about 15-20% of the autism spectrum and yet there is no research focused specifically on them. 3) When you combine the nonverbal group with those who can speak but are unable to communicate (low-communicating), this adds up to approximately 50% of the autism spectrum population, yet they are not represented in current research nor is there any research specifically focused on them. 4) Nonverbal and low-communicating people with autism should be included in the Strategic Plan for Autism Spectrum Disorder Research.

b. New opportunities.
5) There are few, if any, interventions that work for these individuals and currently there is no research to develop them. We need research to develop successful interventions for this group. 6) In spite of lack of communication being their most severe deficit, there is currently no research to develop communication interventions. We need this kind of research now. 7) Please consider the role of strep in suppressing speech.

c. Research priorities.
9) Almost nothing is known about nonverbal and low-communicating individuals, yet there is no research focused specifically on better understanding this group. 9) In spite of tremendous advances in autism research in the past decade, this group has not benefited from the progress that has been made and little has changed for them.

Respondent 0213

a. Gaps and underrepresented research areas.
Research for nonverbal, low-functioning individuals is underrepresented.

b. New opportunities.
Interventions focusing on communication, regulation as it impacts behavior and motor planning would help.

c. Research priorities.
Interventions focusing on communication, regulation as it impacts behavior and motor planning would help.

Respondent 0215

a. Gaps and underrepresented research areas.
Research into causes, effective treatments and interventions for those individuals with autism who are nonverbal and where other, newer treatments have been all tried but not worked.

b. New opportunities.
Same as above.

c. Research priorities.
I'd prioritize those communication abilities that impact 1)employment or volunteerism success in a workplace 2)ability to be a successful 'roommate' in a housing situation and 3)any community-based interventions that promote more successful and safe interactions with typical residents of your community.

Respondent 0219

a. Gaps and underrepresented research areas.
More research based on evidence of specific teaching procedures based on the Science of Applied Behavior Analysis.

b. New opportunities.
1) Nonverbal and low-communicating individuals with autism, (often referred to as "low-functioning"), have been almost entirely excluded from federally funded research. 2) The nonverbal subgroup represents about 15-20% of the autism spectrum and yet there is no research focused specifically on them. 3) When you combine the nonverbal group with those who can speak but are unable to communicate ("low-communicating"), this adds up to approximately 50% of the autism spectrum population, yet they are not represented in current research nor is there any research specifically focused on them.

c. Research priorities.
4)Nonverbal and low-communicating people with autism should be included in the Strategic Plan for Autism Spectrum Disorder Research. 5) There are few, if any, interventions that work for these individuals and currently there is no research to develop them. We need research to develop successful interventions for this group. 6) In spite of lack of communication being their most severe deficit, there

Respondent 0221

a. Gaps and underrepresented research areas.
About 50% of people with autism are nonverbal or have minimal verbal communication, including my 19 year old son. More research needs to be done to find ways to help these individuals communicate their needs, wants, pain and discomfort and share their hopes and dreams. We need to encourage research in this area ASAP. These folks are the most difficult to work with and need the most help.

b. New opportunities.
Many of these people who are nonverbal are good with computers and can type. I would focus on typing to communicate.

c. Research priorities.
Any research in this area would be helpful at this point when none is being done.

Respondent 0222

a. Gaps and underrepresented research areas.
There is very little provided for nonverbal or low-communicating individuals with autism. Also, older individuals with autism seem to be left out of the mix. We need more research into treatments and interventions to help beyond the early intervention years.

b. New opportunities.
Include non verbal/low-communicating individuals and older individuals in research efforts.

Respondent 0224

a. Gaps and underrepresented research areas.
There is not enough research on how to help nonverbal children. This would fall into research as well on why some children regress in skills. These seem to be the children most greatly affected by autism. They had skills which they lost and have not been able to gain back. Why did they regress? What enzyme or gene failed to kick in to keep their development going and caused them to regress? These are usually the children who are nonverbal. What can we do when that regression first begins to stop it? My son still regresses to this day at 10 years old. Also, more research needs to be done on the sensory aspects of autism. What are the defects in those who are nonverbal and how can we get around them. Also, the motor-planning is derailed in the nonverbal. Why, what can we do to get around that?

b. New opportunities.
We need more sophisticated methods to teach communication to the nonverbal, than PECS. We need to delve more into how computers can help with communication. Just like computers help the paralyzed communicate, we need to use computers to help us realize the thoughts and needs of those unable to speak.

c. Research priorities.
We have 20% of autistic people who are nonverbal and combining that with those who can speak, but are "low communicators", you have 50% of autistic people trapped in their own bodies, unable to let people know their thoughts and needs and whether something hurts or they are being abused. If that isn' t priority #1, I don't know what could be. How about making the most vulnerable, the most affected, the highest priority. It's easy to fix mild problems. The challenge and the most priority should be the hopeless and forgotten one's who can't speak for themselves.

Respondent 0227

a. Gaps and underrepresented research areas.
As a parent of a child with autism, I strongly feel that research needs to be done on interventions that will help nonverbal and low-communicating children. There has been a dearth of research done on this population and this population needs the most help. Please, please consider this as a top priority!

Respondent 0229

a. Gaps and underrepresented research areas.
1) Nonverbal and low-communicating individuals with autism, (often referred to as low-functioning), have been almost entirely excluded from federally funded research. 2) The nonverbal subgroup represents about 15-20% of the autism spectrum and yet there is no research focused specifically on them. 3) When you combine the nonverbal group with those who can speak but are unable to communicate (low-communicating), this adds up to approximately 50% of the autism spectrum population, yet they are not represented in current research nor is there any research specifically focused on them. 4) Nonverbal and low-communicating people with autism should be included in the Strategic Plan for Autism Spectrum Disorder Research.

b. New opportunities.
5) There are few, if any, interventions that work for these individuals and currently there is no research to develop them. We need research to develop successful interventions for this group. 6) In spite of lack of communication being their most severe deficit, there is currently no research to develop communication interventions. We need this kind of research now. 7) Almost nothing is known about nonverbal and low-communicating individuals, yet there is no research focused specifically on better understanding this group. 8) In spite of tremendous advances in autism research in the past decade, this group has not benefited from the progress that has been made and little has changed for them.

Respondent 0232

b. New opportunities.
Rapid prompting method needs to have further funding for research. It is a teaching method that empowers nonverbals to spell out their thoughts.

Respondent 0235

a. Gaps and underrepresented research areas.
There is very little information or help offered for non verbal or low-communicating autistic teenagers and young adults. Research needs to focus on what interventions will help improve the lives of these people with no voice. What methods work and what does not? Can new methods be developed?

b. New opportunities.
More study of teenagers and young adults who are non verbal or low-communicating needs to happen. What changes happens at puberty? Does regression often happen at puberty? Why does regression happen at puberty?

c. Research priorities.
The most important issue is improving communication for those with no voice and for Autistic people who are non verbal and low-communicating. New methods are needed for those people that the traditional pointing at pictures does not work well for.

Respondent 0236

a. Gaps and underrepresented research areas.
A History of Autism with treatment options would be a terrific research project. Every few years there's another "cure treatment" and the old ones don't' go away either, some are just repackaged to look new for the next round of vulnerable parents. We need to have a clear understanding of what is sound and finally provide some guidance for families!

b. New opportunities.
Comparative studies separating quackery from sound and effective treatment.

Respondent 0242

a. Gaps and underrepresented research areas.
Hi. I am the mother of a smart, sweet-tempered, 5.5 year old boy with autism. In some ways my son is low-symptom in that he is pretty flexible (no sound, schedule, etc. rigidities), and he can show/receive affection. But he has a great deal of trouble is social skills and communication. He is almost totally nonverbal (/b/, /m/, /p/, \"buh buh ma ma"), and he consistently does not respond speech/language very well. His eye contact is poor, his "Theory of Mind" is poor, and his receptive language for multi-step directions is currently fairly low but progressing. My son has been receiving intensive intervention since the age of 2 and he makes continues to progress, but according to HIS schedule. He will be mainstreamed in kindergarten this year with a personal aide and an overall spec ed aide in addition to the classroom teacher. He already has many pre-kindergarten academics down pat -- numbers, letters, colors, shapes, SIGHT WORDS, beginning math, etc.

b. New opportunities.
My son has been receiving intensive intervention since the age of 2 and he makes continues to progress, but according to HIS schedule. He will be mainstreamed in kindergarten this year with a personal aide and an overall spec ed aide in addition to the classroom teacher. He already has many pre-kindergarten academics down pat -- numbers, letters, colors, shapes, SIGHT WORDS, beginning math, etc. My son has varying success with communication. He uses PECs (Pictoral Exchange Communication System) VERY WELL. After 3 years of intervention he is successfully nodding his head to respond YES / NO. He successfully uses gestures and pointing. More complicated communication remains to be developed.

c. Research priorities.
I am EXTREMELY interested in strategies and interventions which would allow a nonverbal child to efficiently learn more advanced / abstract academic concepts. MY SON IS FULLY SMART ENOUGH TO ABSORB THIS LEARNING, if it could be presented appropriately. I am EXTREMELY interested in assessments of the various assistive technologies to see which are most effective. I am interested in the practical management of a classroom with mainstreamed special ed children, to identify best practices. My son is a representative of a population that CAN MAKE PROGRESS, with the appropriate techniques and resources. I hope some research funds can be allocated specifically to study the situation of the nonverbal and low-verbal autistic population.

Respondent 0243

a. Gaps and underrepresented research areas.
As the parent of two children on the autism spectrum who are often referred to as "low-functioning" and "nonverbal," I am very disappointed in the lack of research into this population. Specifically, there needs to be more research into effective communication strategies for this population.

b. New opportunities.
Research opportunities seem to focus on high-functioning children and very young children. We live in close proximity to Vanderbilt and frequently participated in research until my children reached school age. Despite the increase in the number of studies being conducted, my children are not eligible for participation in almost all of them because of their functioning ability. This is a significant portion (20-50%) of the autistic population that is not being studied. It is not the case that interventions developed for the higher functioning population will work equally well in the lower-functioning population. Research centers like Vanderbilt exist around the country, and this provides an opportunity to study people with autism at all levels of functioning nationwide.

c. Research priorities.
Research that focuses on lower-functioning or lower-communicating individuals with autism is necessary to improve the quality of life for these individuals. Very little is known about this population, and it cannot be assumed that results gleaned from studies of higher-functioning individuals will hold true for the lower-functioning cohort. In addition to supporting studies specifically designed for this population, it is also necessary to tailor broad studies so that lower-functioning individuals with autism can participate.

Respondent 0244

a. Gaps and underrepresented research areas.
Under third paragraph...the reference to Lord and McGee, 2001 and McClannahan, MacDuff, & Krantz, 2002; Weiss & Harris, 2001...More up to date data instead of referencing 2000-2002 data... Suggest adding more detailed data on improved skills with adolescent and adults instead of referencing the 2000-2002 data...This means that the reader which will most likely be a family member trying to get more information will have to look up the reference... Under 4th paragraph: Medications...Need more detail on Respiradone usage and side effects in children under age 4...Stress the side effects of this medication in detail since the parents/caregivers will need to be fully informed... Under 5th paragraph: nutritional supplements and diets (gluten-casein free diets). These diets are very restrictive and in some instances can be harsh or unpleasant to the recipient that is on them...especially a child that has not been diagnosed with celiac disease.

b. New opportunities.
Under first Bullet: 'Clinical trials that assess the safety and efficacy of widely used interventions that improve functioning and quality of life for people with ASD across the lifespan ....' Place this last in order of priority and make a separate bullet... Bullet # 3 'Early interventions...' should come before bullet # 2...'Interventions...

c. Research priorities.
No additional comments...

Respondent 0245

c. Research priorities.
Sensory Integration and visual and auditory therapy.

Respondent 0246

a. Gaps and underrepresented research areas.
Chelation of heavy metals supplement with vitamins, minerals, to keep body in homeostasis therapies to address deficits: auditory, visual, sensory

b. New opportunities.
These work - for my son and for countless others with autism

Respondent 0247

a. Gaps and underrepresented research areas.
I want to see more research dedicated to nonverbal/low-communicating autistics. My son is mostly nonverbal (he'll talk if we make him) but I know he's a bright and cool kid. If I and his teachers could just communicate with him, I know he'd be a fully productive member of society.

b. New opportunities.
Lots of new technology based solutions. Ones for wide spread relatively inexpensive platforms like the new iPod would be great (my son has one uses it like a pro)

c. Research priorities.
More funding for non verbal/low-communicating children

Respondent 0251

a. Gaps and underrepresented research areas.
Research alternative therapies to address the biomedical aspects of ASD

b. New opportunities.
Better treatments and more treatments.

c. Research priorities.
Biomedical testing, addressing those issues, testing investigational therapies such as HBOT etc

Respondent 0253

a. Gaps and underrepresented research areas.
I am a Speech Therapist with 25 years experience in the educational setting. When I first started working most school districts only served a few students with autism. Last school year, I served more than 20 students with autism on my elementary school campus. More than half of those children were either totally nonverbal or, the limited language they did exhibit was virtually non-functional. There are more and more of these children enrolling in the public schools because their parents, rightly so, are desiring that their child experience some form of normalcy. Please do not forget that these children, because they are suffering from autism in the severest form, are not only unable to comprehend and understand in the simplest form, but they are human beings without the ability to communicate, verbal or nonverbal, their simplest desire. More research in the area of nonverbal/limited language autism is imperative if they are to become functional, independent people. Thank you.

Respondent 0259

a. Gaps and underrepresented research areas.
Communication devices. We need to research the use of communication devices in younger children so that those in power will start using them earlier. My daughter is being assessed only at our request and finally in 6th grade. This should have been started much earlier, but the schools will not do this without effective research that proves to them that it is vital. We also need better understanding of how to help low-verbal and nonverbal individuals to speak.

Respondent 0261

a. Gaps and underrepresented research areas.
Treatments for nonverbal and low-communicating people.

Respondent 0262

b. New opportunities.
As the father of a child who has not responded to any kind of therapy, I have a difficult time with this issue. Children without verbal or communication skills are least served by current therapy methods, and I can only ask that every effort be made to advance the state of interventions and therapy for these children.

Respondent 0265

a. Gaps and underrepresented research areas.
Research needs to be done on children who are non-vocal or do not communicate through spoken language.

Respondent 0268

a. Gaps and underrepresented research areas.
Services are needed that involve the body mind and spirit. Therapeutic environments that help the individual become more comfortable in his body should be the number one goal. There is a myriad of alternative therapies that would be helpful, in addition to a form of entrainment using a person with a dominant rhythm to serve as a catalyst.

b. New opportunities.
Communicating at a soul level, telling them you are aware of their competence is primary. Providing a safety net and physical presence for new explorations, preventing fear or failure through slow removal of prompts. Everything from massage therapy, sacral cranial, chiropractic, binaural beats, swinging, bouncing, rhythmic entrainment, water play, walking on the beach or in the woods next to a flowing river on uneven terrain, reflexology, acupressure, horseback riding, meditation, new movement patterns. Anything that encourages them to readily engage in physical experiences.

c. Research priorities.
Meet with me and others who openly admit to having similar experiences. Leave those who have perhaps spoken half-truths in the past or are simply not able to go beyond their current sensory based reality out of the group. What is needed is open minded thinkers, not afraid of ridicule willing to take a stand and get to work. These remarkable individuals are currently being not only ignored but extremely underutilized!

Respondent 0269

a. Gaps and underrepresented research areas.
The nonverbal group is NOT included in the Strategic Plan

c. Research priorities.
Include the nonverbal group in the strategic plan

Respondent 0270

a. Gaps and underrepresented research areas.
Please consider allocating funds for research for people with severe autism who are nonverbal. This subset is the most vulnerable group and in addition requires the most care. Please be equitable in your quest to find a cure for this dreaded affliction.

Respondent 0275

a. Gaps and underrepresented research areas.
Outcome studies of the effectiveness of affective, relationship-based therapies and approaches. Outcome studies of the effectiveness of interpersonal, affective interaction-based intervention.

b. New opportunities.
Large scale studies on interventions with focus on parent training as a component of intervention with the goal of facilitating therapeutic carryover with decreased cost and increased dose. Strategies of interpersonal content, affective interactions and the use of close relationships, to facilitate adaptive behavioral responses and reduced symptoms. Interventions that include improvement for the family as a whole, incorporating individuals with ASD as an equal participant in family occupations. Treatments that address ways of living, behavioral and environmental adaptations, to enhance the quality of life for the individual with ASD and other family members.

c. Research priorities.
Short term Objectives: Test efficacy of affective, relationship-based intervention in deceasing symptoms of ASD and increasing adaptive behavioral responses. Test efficacy of affective, relationship-based intervention including parent training as it relates to quality of life for entire family. Long term Objectives: Develop and support parent training protocol enhancing affective interactions between family members, teaching interactional strategies to decrease symptoms of ASD and increase adaptive behavioral responses.

Respondent 0276

a. Gaps and underrepresented research areas.
Again, focus research on individuals who are in the lower end of the spectrum.

Respondent 0280

a. Gaps and underrepresented research areas.
As the mother of a 14-year-old boy with autism, I strongly urge you to include nonverbal and low-communicating people with autism in the Strategic Plan for Autism Spectrum Disorder Research. There are few, if any, interventions that work for these individuals, and currently there is no research to develop them. There is great interest in studying and working with young people with Asperger's Syndrome, and that's as it should be, but the "lower functioning" individuals with autism need help and support just as much--if not more--if they are to have any hope of leading a productive and meaningful life. Research should focus on methods of communication, which educational and behavioral interventions work best, ways to increase socialization, and enhancing vocational aptitude.

c. Research priorities.
1. HELP THEM COMMUNICATE WITH OTHER PEOPLE 2. HELP THEM FORM RELATIONSHIPS 3. HELP THEM SELF-REGULATE THEIR BEHAVIORS 4. HELP THEM LEARN A SKILL SO THEY CAN BE PART OF THE LARGER SOCIETY

Respondent 0281

a. Gaps and underrepresented research areas.
It is time to look beyond ABA. Communication is foundational for the success of any individual's interactions with one's environment and their participation in their own life. No child should arrive at age 3-4 without communication of some kind. We need to research the benefits of AAC/technology in the development of communication skills and its support of speech development.

b. New opportunities.
Facilitated Communication is being used successfully by many nonverbal individuals. We need to look at how people become independent typers...or more independent and what support therapies help individuals become more independent.

c. Research priorities.
Facilitated Communication and how people become independent. Access to technology and the development of speech for those who are nonverbal or have limited verbal abilities Access to communication and the benefits of full inclusion for those who are considered nonverbal or minimally verbal.

Respondent 0285

a. Gaps and underrepresented research areas.
It is my understanding that there is no research being done for nonverbal autistic children and that that group, including the low-communicating autistic children, add up to about 50% of autistic children. This is a travesty. All parts of the spectrum should be treated equally. Please include this group in the strategic plan!

Respondent 0288

a. Gaps and underrepresented research areas.
I'm told that the nonverbal or low-communicating autistic children are not included in the current research. I would petition the IACC to include this large group of children, about 50% I understand. The outlook for these children is bleak with few interventions that work.

Respondent 0293

a. Gaps and underrepresented research areas.
My son has autism and is nonverbal. I have the following concerns. -Nonverbal and low-communicating individuals with autism, (often referred to as "low-functioning"), have been almost entirely excluded from federally funded research. -The nonverbal subgroup represents about 15-20% of the autism spectrum and yet there is no research focused specifically on them. -When you combine the nonverbal group with those who can speak but are unable to communicate ("low-communicating"), this adds up to approximately 50% of the autism spectrum population, yet they are not represented in current research nor is there any research specifically focused on them. -Nonverbal and low-communicating people with autism should be included in the Strategic Plan for Autism Spectrum Disorder Research.

b. New opportunities.
-There are few, if any, interventions that work for these individuals and currently there is no research to develop them. We need research to develop successful interventions for this group. -In spite of lack of communication being their most severe deficit, there is currently no research to develop communication interventions. We need this kind of research now. -Almost nothing is known about nonverbal and low-communicating individuals, yet there is no research focused specifically on better understanding this group. -In spite of tremendous advances in autism research in the past decade, this group has not benefited from the progress that has been made and little has changed for them.

c. Research priorities.
Please place some priority in researching learning methods for nonverbal children.

Respondent 0294

a. Gaps and underrepresented research areas.
See above

b. New opportunities.
Helping the 50% of autistic people live better lives is the best opportunity I can think of.

c. Research priorities.
What are the genetics of non-communication? What is the history these people? Did they receive any early intervention? What kind? WAs speech gained at some level and lost?

Respondent 0297

a. Gaps and underrepresented research areas.
Until now there has not been a unified effort to advocate for those who are nonverbal or low-communicating. So now is a great time to begin our efforts to advocate for this group. Sadly, in spite of the huge gains that have been made in the past decade, our kids have not been benefited and there are still almost no interventions that work for our kids and no research to better understand the nonverbal and low-communicating population, their cognitive abilities, genetic characteristics, educational needs or to develop successful interventions. Perhaps most importantly this population needs communication interventions and at present there is no research being done in this area.

b. New opportunities.
Until now there has not been a unified effort to advocate for those who are nonverbal or low-communicating. So now is a great time to begin our efforts to advocate for this group. Sadly, in spite of the huge gains that have been made in the past decade, our kids have not been benefited and there are still almost no interventions that work for our kids and no research to better understand the nonverbal and low-communicating population, their cognitive abilities, genetic characteristics, educational needs or to develop successful interventions. Perhaps most importantly this population needs communication interventions and at present there is no research being done in this area.

c. Research priorities.
Until now there has not been a unified effort to advocate for those who are nonverbal or low-communicating. So now is a great time to begin our efforts to advocate for this group. Sadly, in spite of the huge gains that have been made in the past decade, our kids have not been benefited and there are still almost no interventions that work for our kids and no research to better understand the nonverbal and low-communicating population, their cognitive abilities, genetic characteristics, educational needs or to develop successful interventions. Perhaps most importantly this population needs communication interventions and at present there is no research being done in this area.

Respondent 0298

a. Gaps and underrepresented research areas.
Additional research is needed for non verbal children. They are underrepresented in current research. Their needs are overwhelming yet no effective means of communication have been developed. No cause no cure no effective treatment. Please help the non verbal low-functioning children and their families. WE NEED HELP.

Respondent 0299

a. Gaps and underrepresented research areas.
I am writing as a parent of a son, now 40 who has autism with limited verbal ability. It is essential that this population be included in autism research efforts and successful communications strategies be explored in order to release people like my son from the prisons of their bodies. At the age of 39 my son, considered low-functioning and retarded even though he taught himself to read at an early age and can sort alphabetically and numerically faster than most people, was able to ask questions and communicate for the first time in his life. He did this with Soma Mukhopadhyay using her Rapid Prompt Method of nonverbal communication. We discovered that he was interested in what women thought about him, knew how the stock market functioned and was surprised to discover that he was "really smart". He did this by poking a pencil through the letter outlines of an alphabet stencil. Since he said the letters aloud before poking, the authorship of his communication is unquestioned.

b. New opportunities.
Given what I have written, skeptics would say that I may be raising "false hopes" by suggesting that my son and others like him may have severe communications deficits but may still be functioning on an average or above average cognitive level. If I am correct, as my son's experience shows, how many lives are being wasted in boring, useless programs such as the one my son attends, spending billions of federal dollars in the process? Should we not be investigating the possibility that people with low-communicating or nonverbal autism, like some victims of strokes, may have no avenue of communicating their ever so normal thoughts and are trapped inside bodies that do not work in a manner that we consider to be normal?

c. Research priorities.
People with nonverbal and low-communicating autism must be prioritized in the Strategic Plan for Autism Spectrum Disorder Research. There is currently minimal if any research being done to develop and discover communication interventions that work for this population. I have suggested one method that has worked for my son as well as for others I know who have tried it. Shouldn't that success be further explored? How many lives and how many billions of dollars must be wasted until successful communications strategies allow people like my son to be released from their prisons?

Respondent 0301

a. Gaps and underrepresented research areas.
As a retired "regular ed" classroom teacher, I recall feeling frustrated in not having the skills to deal with nonverbal and low-communicating students placed in my classes. Now, as a family member of three boys that are nonverbal and low-communicating, I would strongly encourage including this population in continued research.

Respondent 0304

a. Gaps and underrepresented research areas.
Individuals along the ASD who are nonverbal or low-communicating are severely underrepresented in the Strategic Plan geared towards positive outcomes (i.e., research, funding, and treatments). As a parent of an adult child afflicted with ASD who has lost most verbal communication since adolescence, I am particularly interested in this issue, as well as the overall funding of research studies for adults with ASD. Please make certain that these two overlapping populations, who comprise a significant and growing portion of those with ASD, are left out of your invaluable efforts moving forward. Thank you for your time and energy, as well as your prompt attention to this matter.

Respondent 0306

a. Gaps and underrepresented research areas.
Diet is HUGE - taking out toxins, gluten and casein made a big difference. ABA therapy helps, but not until you address the physical problems.

b. New opportunities.
Look at diet. Look at HBOT. Talk to the DAN docs.

c. Research priorities.
Talk to the Autism Research institute. Talk to the folks at TACA and Gen Rescue.

Respondent 0307

a. Gaps and underrepresented research areas.
Here's an intervention - stop vaccinating children and study them to see what their rates of autism are related to the rest of the population. I'll volunteer my UNVACCINATED, totally neurotypical daughter to be part of this study. She was the lucky one, and didn't get the autism, like her vaccinated brother.

Respondent 0309

a. Gaps and underrepresented research areas.
More on ABA and the best time to start.

b. New opportunities.
The numbers are growing so fast that this has to be a huge priority. The longer we delay interventions, the harder it is to break behaviors!

c. Research priorities.
ABA- get the research on paper so that we have more success getting it paid for and prescribed. Get this information out to the Physicians, because nothing is being done!

Respondent 0310

a. Gaps and underrepresented research areas.
Biomedical interventions are dismissed with "some parents find them effective," but Risperdone is "effective." Maybe some side effects known to be cause by Risperdone - increased thoughts of suicide, tardive dyskinesia, tumors - should be included in your little message to parents

b. New opportunities.
The secretin study was not well done; it was a single dose study of very short duration which used synthetic and not natural secretin. Do a proper one. Study hyperbaric treatment. Study diet. Study specific supplements. Study chelation.

c. Research priorities.
Why do these children have so much metal in their bodies? Lead, mercury, aluminum, etc. Where does it come from? How can we get it out? If we do get it out, do they improve?

Respondent 0312

a. Gaps and underrepresented research areas.
Where is Defeat Autism Now? Where is Jane Johnson, DAN president and founder of Thoughtful House? Where is Bryan Jepson parent and physician? Where are people with experience treating medically complicated children? Where is an expert in autism and dietary interventions?

b. New opportunities.
Dietary intervention research with nutritionist Julie Matthews Study IVIG, study chelation, study anti-inflammatories and GI disease, study HBOT, study seizure medications

c. Research priorities.
Prioritize issues which are greatly harming ASD children and causing them pain- now Study GI intervention and dietary interventions Where is Peter Bell and Lyn Redwood, they know about the whole spectrum of behavioral and biological interventions?

Respondent 0316

a. Gaps and underrepresented research areas.
The women I've spoken with children on the spectrum speak of HBOT, diet restrictions, supplements (vitamins and hormones), yeast control, and chelation.

Respondent 0318

a. Gaps and underrepresented research areas.
Research should look at what types of skills are needed in the real world. Research should look at how typical children learn how to think dynamically and problem solve and then transfer this process to the children with ASD. Relationship Development Intervention or RDI targets such processes.

b. New opportunities.
RDI should be studied. Initial studies show success, it is an evidence based practice, it addresses the core deficits of autism, and it makes the parent-child relationship a priority. It is easy to study and measure because there is a continuous stream of video documentation of the work, a curriculum, and a protocol.

c. Research priorities.
Prioritize treatments that assume a pathway of autistic development and the capacity for neuro-developmental remediation, rather than assuming a discrete etiology and cure. That will lead to the most helpful and economic treatment for families now. RDI is one such treatment.

Respondent 0320

a. Gaps and underrepresented research areas.
Dear Sir/Madam: I am writing you today as a Washington DC Psychologist who works with children with learning disorders. I urge you to include nonverbal and low-communicating people with autism in the Strategic Plan for ASD Research. This is a sub population within Autistic children that has for too long been left out of important research. Please, include the nonverbal subgroup in your future research designs. Sincerely, Imran Riaz, Psy.D. Washington DC

Respondent 0322

a. Gaps and underrepresented research areas.
COMPREHENSIVE REVIEW OF DAN PROTOCOLS, INCLUDING STUDIES OF REVERSALS OF REGRESSIVE AUTISM THROUGH CHELATION, SUPPLEMENTS, AND DIETARY CHANGES. REINSTATEMENT OF THE PREVIOUSLY APPROVED VACCINATED/UNVACCINATED STUDY AT A COST OF $6 MILLION. OBJECTIVES RELATING TO THE RESEARCH AND EVALUATION IN INFANTS OF EARLY CO-MORBID BIOLOGIC SYMPTOMS, SUCH AS GASTROINTESTINAL, ALLERGIC, DERMATOLOGIC, CHEMICAL/HEVY METAL EXPOSURE, AND MITOCHONDRIAL DYSFUNCTION AS PREDICTORS OF AUTISM. OBJECTIVES RELATING TO THE RESEARCH AND EVALUATION IN INFANTS AND CHILDREN OF MEDICAL TREATMENTS FOR SUCH CO-MORBID CONDITIONS LISTED ABOVE, AND THE EFFECTS OF SUCH TREATMENTS ON AUTISM SYMPTOMS.

b. New opportunities.
REINSTATEMENT OF THE PREVIOUSLY APPROVED VACCINATED/UNVACCINATED STUDY AT A COST OF $6 MILLION. OBJECTIVES RELATING TO THE RESEARCH AND EVALUATION IN INFANTS OF EARLY CO-MORBID BIOLOGIC SYMPTOMS, SUCH AS GASTROINTESTINAL, ALLERGIC, DERMATOLOGIC, CHEMICAL/HEVY METAL EXPOSURE, AND MITOCHONDRIAL DYSFUNCTION AS PREDICTORS OF AUTISM. OBJECTIVES RELATING TO THE RESEARCH AND EVALUATION IN INFANTS AND CHILDREN OF MEDICAL TREATMENTS FOR SUCH CO-MORBID CONDITIONS LISTED ABOVE, AND THE EFFECTS OF SUCH TREATMENTS ON AUTISM SYMPTOMS.

c. Research priorities.
REINSTATEMENT OF THE PREVIOUSLY APPROVED VACCINATED/UNVACCINATED STUDY AT A COST OF $6 MILLION. OBJECTIVES RELATING TO THE RESEARCH AND EVALUATION IN INFANTS OF EARLY CO-MORBID BIOLOGIC SYMPTOMS, SUCH AS GASTROINTESTINAL, ALLERGIC, DERMATOLOGIC, CHEMICAL/HEVY METAL EXPOSURE, AND MITOCHONDRIAL DYSFUNCTION AS PREDICTORS OF AUTISM. OBJECTIVES RELATING TO THE RESEARCH AND EVALUATION IN INFANTS AND CHILDREN OF MEDICAL TREATMENTS FOR SUCH CO-MORBID CONDITIONS LISTED ABOVE, AND THE EFFECTS OF SUCH TREATMENTS ON AUTISM SYMPTOMS.

Respondent 0323

a. Gaps and underrepresented research areas.
Recovering children are teaching confirming that autism is a multifactoral disease. Children with autism need to be study for underlying medical conditions so that we can learn, through evidence based medicine, the true etiology of autism. Studies of the endocrine systems and mitochondrial health of children with autism may lead to many answers and many children receiving biomedical treatment respond so well to treatments that addresses these issues.

b. New opportunities.
Advance the work of Dr. Martha Herbert and look at myelin sheath damage.

c. Research priorities.
Focus should be placed on the metabolic health and multifactoral diseases associated with autism.

Respondent 0324

a. Gaps and underrepresented research areas.
Research regarding models of support or specific interventions to assist adults succeed in higher education, work and independent or supported living.

c. Research priorities.
1. RCT on early intervention. 2. RCT of interventions; effective teaching strategies for school age children and adolescents. 3. Research on effective models of supports for adult in education, work, and living. 4. Research to identify which interventions work for which types of individuals. 5. Research to verify that alternative therapies either do or don't work.

Respondent 0325

a. Gaps and underrepresented research areas.
See previous

b. New opportunities.
See previous

c. Research priorities.
See previous

Respondent 0328

a. Gaps and underrepresented research areas.
Unbiased analyses of DAN! Biomedical treatment protocols. Nutritional supplements such as Methyl B-12, B-6, curcumin, fatty acids. Special diets such as GF/CF, SCD, etc. Antivirals, antifungals, NAET, steroids. Hyperbaric oxygen therapy. Mercury chelation studies using Alpha Lipoic Acid and/or DMSA, such as the protocol refined by Washington state chemist Andrew Hall Cutler, PhD, PE.

b. New opportunities.
Unbiased analyses of DAN! biomedical treatment protocols. Nutritional supplements such as Methyl B-12, B-6, curcumin, fatty acids. Special diets such as GF/CF, SCD, etc. Antivirals, antifungals, NAET, steroids. Hyperbaric oxygen therapy. Mercury chelation studies using Alpha Lipoic Acid and/or DMSA, such as the protocol refined by Washington state chemist Andrew Hall Cutler, PhD, PE.

c. Research priorities.
Unbiased analyses of DAN! biomedical treatment protocols. Nutritional supplements such as Methyl B-12, B-6, curcumin, fatty acids. Special diets such as GF/CF, SCD, etc. Antivirals, antifungals, NAET, steroids. Hyperbaric oxygen therapy. Mercury chelation studies using Alpha Lipoic Acid and/or DMSA, such as the protocol refined by Washington state chemist Andrew Hall Cutler, PhD, PE.

Respondent 0329

a. Gaps and underrepresented research areas.
Study children who have improved or recovered

Respondent 0330

a. Gaps and underrepresented research areas.
Research should look at how children and parents manage breakdowns and repairs rather than at a child's performance. Research should look at changes in flexible thinking, emotional resilience, and self awareness and control, processes needed in the real world. Relationship Development Intervention or RDI targets such processes.

b. New opportunities.
RDI should be studied. Initial studies show success, it is an evidence based practice, it addresses the core deficits of autism, and it makes the parent-child relationship a priority. It is easy to study and measure because there is a continuous stream of video documentation of the work, a curriculum, and a protocol.

c. Research priorities.
Prioritize treatments that assume a pathway of autistic development and the capacity for neuro-developmental remediation, rather than assuming a discreet etiology and cure. That will lead to the most helpful and economic treatment for families now. RDI is one such treatment.

Respondent 0332

a. Gaps and underrepresented research areas.
My son is a nonverbal autistic. He understands what is being said to him yet he cannot speak. The blind have Braille. The deaf have sign language. Nonverbal autistic people have nothing. The new pointing method as shown in the book "strange son" shows great promise. Most schools do nothing for nonverbal autistic people. My son is very intelligent, yet in Montana we have people ignorant about the fact that these children and adults are trapped without a way to communicate. I feel strongly this must be rectified now. So many people have written off these children as retarded. NOT TRUE! This country needs to put help into the nonverbal population that has been overlooked throughout history. Nonverbal people need your help now. How can this great country overlook such a large population of people with any conscience? States need to be held responsible for this child neglect. I urge you to implement the pointing method so that these children and adults can finally have a voice. Pam Tate

Respondent 0333

a. Gaps and underrepresented research areas.
Help us. Or better yet, help us help YOU.

Respondent 0335

c. Research priorities.
Research into treatments needs to be based on answering scientifically sound questions. We shouldn't be researching every alternative medicine treatment that has some following. We need good answers to how to help autistics. We need to place highest priority on those questions which have a good basis in our understanding of autism.

Respondent 0337

a. Gaps and underrepresented research areas.
- Randomized studies of available therapies, in particular cognitive ones - Investigate effectiveness of speech therapy in language development, as it is unknown - Investigate effects of drugs on developing brains - Develop simple strategies to cope with anxiety and joint attention problems

Respondent 0340

a. Gaps and underrepresented research areas.
Biomedical intervention is underrepresented.

b. New opportunities.
Biomedical interventions should not be limited to only "five widely used interventions" - rather, it should include interventions that parents and caregivers endorse.

c. Research priorities.
Coming up with methods for measuring changes in core symptoms of ASD from treatment should, of course, be done first so it can be used to measure the effectiveness of other interventions.

Respondent 0343

a. Gaps and underrepresented research areas.
* Chelation therapies to help these kids clear heavy metals/toxins from their systems. * Dietary treatments, especially to eliminate MSG/glutamic acid from their diets. This includes a GF/CF diet, which are both high in glutamic acid. * The Tomatis Method, to help some of them overcome their ultra sensitivity to sound. (Their senses are not wired properly, from the damage to their myelin sheathing. This includes dyslexia/sight.) * Essential fatty acids (EFAs), to help overcome the damage done to their myelin sheathing from vaccines and their contaminants, and possibly from genetic damage. * Color filters on TV screens, to help their eyesight/neural pathways. * PET scans, to uncover the areas of their brains that are not functioning optimally.

Respondent 0345

a. Gaps and underrepresented research areas.
- DAN! doctors and researchers who are doing lab work on affected children are key to looking at patterns related to biomedical manifestations. - Why do the children have abnormal bacteria, viral, and fungal labs? - Why do the children have varied yet large amounts of metals i.e.- lead, aluminum and for some, mercury?

c. Research priorities.
- Vaccine outcomes: vaccinated vs. unvaccinated study - biomedical implications, labs of affected children (blood- viral titers, aso/strep; stool-bacteria (ex- clostridia, strep), metals; urine- yeast/candida, etc.

Respondent 0347

a. Gaps and underrepresented research areas.
Do not forget the nonverbal autistic.

Respondent 0348

a. Gaps and underrepresented research areas.
There is a need for more research into interventions for individuals who lack or have limited speech. ABA has proven to have limited value for these individuals. PECS and other picture systems have limited value, as they are dependent upon the picture options chosen by the communication partner from which the individual must make her selection. Many individuals have learned to independently type or point to letter boards to spell out their thoughts through Facilitated Communication (FC) or the Rapid Prompt Method (RPM). Yet, instead of looking more carefully at these methods and listening to those who are successfully communicating (and in some cases succeeding in colleges), a group of studies that have raised more questions than they have answered have squelched further research in this area. It is inexcusable to ignore these most promising of communication interventions.

Respondent 0349

a. Gaps and underrepresented research areas.
Bio-med treatments for our sick children are what truly help. We need more studies on so many bio-med interventions.

Respondent 0350

a. Gaps and underrepresented research areas.
Special diets, food allergies, bowel disorders, immune disorders are all subjects that need more attention.

c. Research priorities.
Contact the Autism Research Institute. Founder Bernie Rimland was right on when he stressed "Refrigerator Mothers" were not the cause of autism. The ARI has data on thousands of children - on what has helped and what hasn't. Why can't the IACC tap into this incredibly valuable resource?

Respondent 0353

a. Gaps and underrepresented research areas.
I personally have witnessed dozens of children improve through medically investigating and treating their underlying medical conditions. I have never seen a child dramatically improve with any other intervention. Just as we know now that autism is not caused by refrigerator mothers, it is time once again for a major paradigm shift, to see autism for what it truly is - neurological, as well as immune and gastrointestinal, manifestations of medical problems caused by an environmental trigger or triggers prenatally, or in infancy. It is hardly "alternative" to use enzyme therapy for CF or lactose intolerance, or to implement dietary restrictions in the treatment of heart disease, diabetes, or high blood pressure. Yet these very effective, simple interventions which help thousands of ASD children function in comfort and make use of their educational interventions are mocked by conventional pediatricians and labeled "alternative." Why?

c. Research priorities.
Prioritize medical research by first, setting aside the hostility and politics, second, ensuring that the panel is made up entirely of neutral, objective, scientifically minded parties with no former or current ties to vaccine manufacturers, and third, working closely with parents and physicians who are successfully diagnosing and treating the medical conditions associated with autism, instead of ignoring them while 1:38 boys under age 8 who remain medically untreated while pediatricians shake their heads and researchers give us useless information on head circumference and brain wave imaging, now head, with frightening speed, for the social security disability and Medicare lines.

Respondent 0354

a. Gaps and underrepresented research areas.
Why can my son not talk but he has autism but so intelligent and has 100% understanding of receptive language and he cannot speak words? WHY NOT? If he could speak or communicate he could show how smart he is-- we NEED research for the 50% of our kids who cannot communicate or low communicators to find why and what will be cure to bring speech back.

Respondent 0356

a. Gaps and underrepresented research areas.
I believe much more emphasis needs to be given to low verbal and nonverbal kids. Currently, these children, including my own are left out. My daughter with severe autism can't get services at a local university autism center because she is over 13. She could if she were an adult with Asperger's. I would like to see more studies on adolescents and even adults. New information about neuroplasticity states the brain is more malleable than we thought throughout the life span. What kind of capabilities do the nonverbal and low verbal kids have cognitively? I believe the capabilities of this group have been underestimated.

b. New opportunities.
Typing is a treatment that needs to be studied. There are now several reports of kids who are nonverbal and extremely autistic being able to type their thoughts. How did this work? Who could benefit? With my own daughter who can answer more questions typing than she can verbally, I now have been able to find out her opinion on certain matters. Before I knew her basic wants and needs but never what she thought about anything. Using typing techniques it has been easier to help her anticipate certain events...trips, visits, changes in her life. I was even able to give her a few chores and explain that she would earn an allowance. For this to develop would mean more opportunities to explain the world and assess her understanding of what is going on. And with that she could be taught new skills that would help her interact and be more in-sync with life around her.

c. Research priorities.
Nonverbal kids and low verbal kids are left out and need to be made a priority. It is ironic with so many gadgets out there -- many kids who could benefit from typing or an augmentive communication device don't have them. It is far easier for an adolescent with Asperger's to find a social group and intervention but the use of Assistive Technology to help expand speech and communication is hard to find for nonverbal kids or low verbal kids. The presumption seems to be that autistic kids don't have the cognitive ability to communicate any better than they are. AT and its use is an ignored area and needs to be explored. Cognitive ability and capabilities of low verbal and nonverbal needs to be studied more.

Respondent 0360

a. Gaps and underrepresented research areas.
We already KNOW that biomedical treatments for autism work for MANY children. If you want to know which treatments and interventions will help study children who have recovered! Autism IS treatable and children ARE recovering.

b. New opportunities.
If you continue to deny a vaccine connection and refuse to fund research in that area, you are not truly looking for effective treatments and interventions.

Respondent 0361

a. Gaps and underrepresented research areas.
Parent Mediated Programs to Remediate Autism Relationship Development Intervention (RDI)

b. New opportunities.
Relationship Developmental Intervention is a parent mediated program based on developing the 'guided participation relationship' described in the research of Barbara Rogoff in order to develop dynamic thinking skills and ultimately remediate autism. It restores the developmental pathway created in parent child relationships in order to encourage the acquisition of typical motivation, curiosity, experience sharing and problem solving. This work focuses on improving quality of life for children with ASD and their families, now and in the future. Current popular treatments may assist children with ASD in acquiring bodies of knowledge but fall short of helping them to know how to use that knowledge in a variety of contexts that may vary in one dimension or another. There is great need to explore how to help these children acquire more real world problem solving.

c. Research priorities.
There is great need to understand treatments that improve quality of life for individuals on the autism spectrum and to more accurately define 'what is autism?' and not merely accumulate a group of symptoms. This intervention explores treatment of the cognitive processes that present obstacles to the children on the autism spectrum and not just the co-occuring conditions often experienced with this disability. Prioritizing this is critical. Close behind that need is the urgency in finding affordable and manageable treatments where families are not destroyed by their cost, their temporal demands and their emotional toll. Parent mediated programs can serve that purpose in that they occur in natural environments as the family is executing typical daily functions and are cost effective. Research would encourage programmatic support for this approach and elevate the therapeutic partnerships between clinicians and families in order to restore the developmental path for individuals with ASD.

Respondent 0363

a. Gaps and underrepresented research areas.
Biomedical and medical treatment for the very real illnesses that many children affected by Autism, must be addressed. Someone on this committee needs to put together a study of recovered children.

b. New opportunities.
Advancing knowledge will require most on the committee to stop seeing this as a psychiatric condition. The head of this committee should not be a psychiatrist.

Respondent 0364

a. Gaps and underrepresented research areas.
Biomedical treatment research should be done and given more representation.

Respondent 0366

a. Gaps and underrepresented research areas.
1. Assess for food allergies 2. Assess for Candida 3. Assess for heavy metal poisoning 4. Assess for GI dysfunction 5. Hold parent accountable for making sure their child is not eating food they are allergic or intolerant of. A diabetic child would get help from CPS is their parent did not fix their diet. It should be the same for ASD kids who assess positive for food allergies and intolerances.

b. New opportunities.
1. Assess for food allergies 2. Assess for candida 3. Assess for heavy metal poisoning 4. Assess for GI dysfunction 5. Hold parent accountable for making sure their child is not eating food they are allergic or intolerant of. A diabetic child would get help from CPS is their parent did not fix their diet. It should be the same for ASD kids who assess positive for food allergies and intolerances.

c. Research priorities.
1. Assess for food allergies 2. Assess for candida 3. Assess for heavy metal poisoning 4. Assess for GI dysfunction 5. Hold parent accountable for making sure their child is not eating food they are allergic or intolerant of. A diabetic child would get help from CPS is their parent did not fix their diet. It should be the same for ASD kids who assess positive for food allergies and intolerances.

Respondent 0367

a. Gaps and underrepresented research areas.
Homeopathy

Respondent 0368

a. Gaps and underrepresented research areas.
I would like to see research into biomedical treatments? Which of these works and for which kids or adolescents? Who benefits from the gluten-free casein free diet? Who benefit from vitamins? Who benefits from chelation?

b. New opportunities.
We should study children who have recovered from autism. These children have received almost no scientific or media attention. What interventions have worked with them? We should also study interventions that work with adolescents and adults with autism. It was so depressing when my son entered adolescence and the only thing the medical profession had to offer us were heavy duty antipsychotic drugs with serious side effects.

c. Research priorities.
I think these are all pretty important. However, I would like to see priority given to research on adolescents and young adults, since there are has been no research (that I\'m aware of) on non-drug interventions.

Respondent 0369

a. Gaps and underrepresented research areas.
Two recent articles have called into question the long-held assertion that nonverbal, low-functioning, people with autism are mentally retarded. This assumption has profound effect on the educational programs offered to these children, societal expectations for them, their own self-images, and their life-long prognoses. It is great importance to develop an instrument for measuring cognitive ability that accommodate motor planning problems and extended response times that are characteristic of this population. Specifically I would like to see NIMH Support research into the validity of using such instruments as the Stanford-Binet, WISC or Weschler to assess the cognitive abilities of nonverbal persons with autism, and promulgate dissemination of the results of that research. Support the development of modern tests (to supplement or supplant the Ravens Progressive Matrices, which was developed in 1936) that are appropriate for those with motor planning deficits.

Respondent 0370

a. Gaps and underrepresented research areas.
A controlled trial of discreet trials versus floor time interventions.

Respondent 0372

a. Gaps and underrepresented research areas.
Parent-Training or Parent-Based Programs focused at the remediation of Remediate Autism and/or Relationship Development Intervention (RDI)

b. New opportunities.
Relationship Developmental Intervention, RDI, is a parent mediated program based on developing the 'guided participation relationship' (or the Master/Apprentice Relationship) described in the research of Barbara Rogoff in order to develop dynamic thinking skills and ultimately remediate autism. It provides an opportunity for parents to, under the guidance of a certified consultant, restore the developmental pathway created in parent child relationships in order to encourage the acquisition of typical motivation, curiosity, experience sharing and problem solving. RDI focuses on improving quality of life for children with ASD and their families. Current popular and supported treatments may assist children with ASD in acquiring concrete knowledge but fall short of helping them to know how to use that knowledge in a variety of contexts in other words, real world problem solving. There is a great void of research devoted to how these children develop dynamic thinking.

c. Research priorities.
There is great need to understand treatments that improve quality of life for individuals on the autism spectrum instead of defining the symptoms or the co-occuring disorders. RDI explores treatment of the cognitive processes that present obstacles to the children on the autism spectrum and not just the co-occurring conditions often experienced with this disability. Prioritizing the "core deficits" of autism is critical. Close behind that need is the urgency in finding affordable and manageable treatments where families are not destroyed by their cost, their temporal demands and their emotional toll. Parent mediated programs can serve that purpose in that they occur in natural environments as the family is executing typical daily functions and are within their budgets. Research would encourage programmatic support for this approach and elevate the therapeutic partnerships between clinicians and families in order to restore the developmental path for individuals with autism.

Respondent 0373

a. Gaps and underrepresented research areas.
Dr. Richard Deth's research on novel ways to introduce/use therapeutic glutathione.

Respondent 0374

a. Gaps and underrepresented research areas.
I am the mother of a now-12-year-old son, Charlie, who is on the moderate to the severe end of the autism spectrum. For the past three years, I have followed the work of the IACC in developing the Strategic Plan. Under the Core Values section of the Plan, the importance of being consumer-focused is noted: We will focus on making a difference in the lives of people affected by ASD, including people with ASD, their families, medical practitioners, educators, and scientists. It is important to consider the impact of research on the human rights, dignity, and quality of life of people with ASD from prenatal development forward. I wish to underline the importance of keeping the impact of research on the human rights, dignity, and quality of life of people with ASD very much in mind.

b. New opportunities.
While it is important to continue to investigate the causes of autism, I believe that our foremost obligation is to provide the best possible quality of life for individuals on the autism spectrum, while constantly respecting their human rights and dignity. It is necessary to devote the majority of research efforts to find about effective treatments that can help individuals on the spectrum achieve their full potential and to live their lives in the community, with employment and housing in the community. It is imperative that we find out how to most effectively and efficiently provide services and staff (teachers, therapists, job coaches, and many more) to support individuals on the spectrum. Rather than continuing to devote research funds to find out about hypothetical causes of autism, we need to focus our energies on improving the lives of autistic individuals, of their family members, and of those who support them.

c. Research priorities.
Our focus should not be on vaccines and experimental biomedical treatments, but on how to support teachers of autistic students, on how to provide an appropriate public education for all autistic students, on how to provide services and supports for adults on the spectrum throughout their lives and in ways that, again, always take into account their human rights and dignity.

Respondent 0376

a. Gaps and underrepresented research areas.
My child has recovered from vaccine-induced autism (mercury poisoning) using biomedical interventions (dietary restrictions and supplementation, chelation, etc.) that are not paid for by insurance or acknowledged by the general mainstream medical community. Check out organizations such as http://www.generationrescue.org This link exits the Interagency Autism Coordinating Committee Web site or http://www.tacanow.org This link exits the Interagency Autism Coordinating Committee Web site to get an idea of recoveries in progress. Our kids can and do recover, despite Big Pharma's efforts to continue what at this point can only be a government cover-up.

Respondent 0379

a. Gaps and underrepresented research areas.
The vaccinated/unvaccinated study.

b. New opportunities.
The vaccinated/unvaccinated study.

c. Research priorities.
The vaccinated/unvaccinated study.

Respondent 0380

a. Gaps and underrepresented research areas.
Nonverbal and low-communicating individuals need to be included in autism research. My 19 yr. old son falls in this group and we have searched and are still searching for a way for him to effectively communicate. He is unable to tell us his needs, wants and thoughts. These individuals need a way to communicate. They are the most vulnerable and underestimated of the disabled people with autism.

Respondent 0382

a. Gaps and underrepresented research areas.
Relationship Development Intervention (RDI), biomedical treatment

c. Research priorities.
RDI, to find out how this could improve the quality of life of ASD

Respondent 0385

a. Gaps and underrepresented research areas.
ASD interventions that focus on quality of life, such as RDI or DIR, must get equal funding as those that are purely IQ-based and standardized-test based like ABA. Rote skills and memorization mean little if a child can't make friends or share interactions and experience share.

c. Research priorities.
There is a huge miss in this area as far as treatment. While ABA is perhaps the most well-known treatment method, these are IQ-based results for the large part and will not determine an individual's quality of life. Will they be happy? Will they have friends? Will they be able to hold a job? Will they get married or have a loving relationship? Funding is needed to study the efficacy of Relationship Development Intervention (RDI) as a viable treatment modality for individuals with ASD. This is a method that examines quality of life. Parents of kids with ASD don't need them to be the smartest kid in class or identify every object in a room or on a page. But they want them to smile, to have friends, to be able to laugh at a joke, and to share experiences with them.

Respondent 0388

a. Gaps and underrepresented research areas.
Whatever will increase the communication? Without communication, what is your starting block? They never cured Helen Keller's blindness or her deafness, but she blossomed when she found a connection to the outside world through COMMUNICATION

Respondent 0389

a. Gaps and underrepresented research areas.
As it is well established that ABA/VB, if a well written and executed program, has become the norm in treating Autism. Usually the earlier it is implemented and preferably up to 40hours/week the better results are for the child. But, I also believe a strong biomedical intervention (i.e., diet, supplements, HBOT (hyperbaric oxygen therapy), Neuro consideration and involvement, etc...) is necessary for the best possible outcome. Add to this another type of therapy for the approx. age 6 and above group: The Informative Pointing Method.

b. New opportunities.
To realize that Autism is a Medical Disorder with the strong involvement of the body's Neurological, Gastrointestinal, and Metabolic systems. Because it involves these systems of the body the signs and symptoms (behaviors) manifests themselves to appear psychiatric in nature. Autism is NOT a Psychiatric disorder. You would act out of the norm too if you had the multi body system involvement as those on the Autism Spectrum.

c. Research priorities.
First, realize Autism is a multi body system involvement (Neuro, G.I., and Metabolic). Second, provide some way for reimbursement for the multidisciplinary treatments and therapy's as the financial strain on families is great. Third, have the special ed teachers in the public school become well versed and highly trained in the best therapies (ABA/VB, etc...) for treating Autism. After all the goal of every parent is for their child to be independent to the best of their abilities, and not of course, to underestimate those abilities. The more time, effort and expense given to these individuals, the less financial burden will be generated overall down the road. So, in essence, help the parents help their children strive and become happy independent individuals with financial support and reimbursement assistance regardless of gross/net income.

Respondent 0390

a. Gaps and underrepresented research areas.
We need to know much more about the developmental course of children identified with autism. This includes identification and description of subgroups. Much of the outcome research does not distinguish between changes related to maturation and intervention. This is particularly striking in language and behavioral development. Most children between 2 and 5 with autism develop language and display improvements in behavior, with or without intervention, and independent of the type of intervention. These changes cannot be claimed as the result of a particular type of intervention without comparison of children without this intervention. We need to develop better measures of changes in core deficits. Children may talk but not improve in the reciprocity of their communication. We need shared measures of reciprocal communication, not just measures of vocabulary and length of utterance. We also need shared measures of communicative initiative and communications that are not simply need based.

b. New opportunities.
With identification of children at younger ages we have the opportunity to look closely at what types of interventions improve their functioning with regard to core deficits. We need to develop measures to look at specific changes in the capacities that underlie these abilities in typically developing children, then to be very fine tuned in our interventions in areas such as joint attention. We need to look closely at variations in underlying processing issues that may contribute to early difficulties. The next step is to tailor interventions to underlying processing differences and develop specific treatment strategies that can be shown to improve functioning in these specific areas. We then can look at the impact of these individualized interventions on the next steps of reciprocal communication and interaction.

c. Research priorities.
Focus on core deficits and not on surface behaviors. Look at the long term effects of intervention on the capacity of children to relate, to communicate, and to think flexibly. Outcome measures need to go beyond placement in typical classes and the capacity for rote academic skills. When we think of the kind of adults we want our children to become, it is clear that intervention effectiveness needs to be measured throughout childhood by the capacity to initiate and to participate in interactions that are truly reciprocal. Outcome variables need to focus on a child being able to develop intentional purposeful behavior and to think logically and reflectively. We need to evaluate intervention not by the mastery of memorized facts and specific skills but by each child's capacity to be able to respond effectively to the challenges encountered throughout life. This begins with reciprocity in infancy and throughout the lifespan.

Respondent 0394

a. Gaps and underrepresented research areas.
1) Nonverbal and low-communicating individuals with autism, (often referred to as low-functioning), have been almost entirely excluded from federally funded research. 2) The nonverbal subgroup represents about 15-20% of the autism spectrum and yet there is no research focused specifically on them. 3) When you combine the nonverbal group with those who can speak but are unable to communicate (low-communicating), this adds up to approximately 50% of the autism spectrum population, yet they are not represented in current research nor is there any research specifically focused on them. 4) Nonverbal and low-communicating people with autism should be included in the Strategic Plan for Autism Spectrum Disorder Research.

b. New opportunities.
5) There are few, if any, interventions that work for these individuals and currently there is no research to develop them. We need research to develop successful interventions for this group. 6) In spite of lack of communication being their most severe deficit, there is currently no research to develop communication interventions. We need this kind of research now. 7) Almost nothing is known about nonverbal and low-communicating individuals, yet there is no research focused specifically on better understanding this group. 8) In spite of tremendous advances in autism research in the past decade, this group has not benefited from the progress that has been made and little has changed for them.

c. Research priorities.
Until now there has not been a unified effort to advocate for those who are nonverbal or low-communicating. So now is a great time to begin our efforts to advocate for this group. Sadly, in spite of the huge gains that have been made in the past decade, our kids have not been benefited and there are still almost no interventions that work for our kids and no research to better understand the nonverbal and low-communicating population, their cognitive abilities, genetic characteristics, educational needs or to develop successful interventions. Perhaps most importantly this population needs communication interventions and at present there is no research being done in this area.

Respondent 0396

a. Gaps and underrepresented research areas.
Relationship-based therapies family therapy

b. New opportunities.
Relationship-based therapies family therapy

c. Research priorities.
Relationship-based therapies family therapy

Respondent 0400

a. Gaps and underrepresented research areas.
There needs to more emphasis on treatments for people with autism who have no or very limited means of communication. In particular, research should be done to benefit adolescents and adults who are considered "lower functioning" and who no longer are receiving the intensive services available to younger children. This population is trapped and needs a way to communicate over their life span.

b. New opportunities.
There should be an opportunity to focus on the study of people with autism who have had a regression in skills over their life span, particularly in language, to determine how to prevent such regression or to alleviate the effects of such regression.

Respondent 0403

a. Gaps and underrepresented research areas.
Finally - fully inclusive plan to research treatments and interventions!

b. New opportunities.
All that were mentioned.

c. Research priorities.
None

Respondent 0408

a. Gaps and underrepresented research areas.
The entire realm of bio-medical treatments needs to be examined and the existing studies on the effectiveness of biomed need to be accepted and acknowledged as valid. For the 2 million ASD patients, there are 500 biomed doctors treating them. No wonder people think autism isn't curable; they don't know about or can't get medical help! Doctors are scared to step out on a limb and accept natural medicine as a capable treatment.

b. New opportunities.
Bio-medical treatments: diet, nutritional supplements, anti-virals, probiotics, glutathione, MB-12, HBOT, chelation, epsom salts

c. Research priorities.
Treatment has to be the VERY FIRST priority. There is a growing population of kids like mine and I shudder to think how many adults we will be saddled with taking care of if we don't find treatment for them now. We have to take action on this NOW and if it is left to parents and the handful of doctors currently tackling this issue, we will always be swimming up the proverbial stream against the current of traditional medicine and autism will be our constant companion.

Respondent 0409

a. Gaps and underrepresented research areas.
Research is needed into identifying what interventions help the nonverbal individual with autism. How does an individual without speech and most often auditory process issues learn to navigate his/her world? We need a list of researched and confirmed options. Multiple areas need to be researched including developmental, social/emotional, academic, and behavioral.

b. New opportunities.
Speech generating devices need to be reasonably priced. Assessments need to be researched, supported, and available. There needs to be a modified curriculum for nonverbal and low-communicating individuals so that they may be taught the state standards. The pace may need to be slower or more experience-based, but we cannot exclude these individuals.

c. Research priorities.
I believe teaching an individual to read and write/keyboard opens up a new world. Priority should be placed here first.

Respondent 0411

a. Gaps and underrepresented research areas.
Interventions are great. ABA has recovered my son. But who is going to pay for these interventions? Insurance should cover these interventions. School districts cannot handle the complete financial burden especially when the feds have NEVER fully funded IDEA.

Respondent 0412

a. Gaps and underrepresented research areas.
There are few interventions which work for autistic people. We need research which includes nonverbal and low-communicating people now.

Respondent 0413

a. Gaps and underrepresented research areas.
I am a trained PhD social scientist with a child with ASD. My wife, also a PhD and I have worked with several forms of interventions but have been most impressed with Relationship Development Intervention (RDI). We would strongly recommend that there would be funding to study the efficacy of Relationship Development Intervention (RDI) as a viable treatment modality for individuals with ASD. We would also suggest treatment studies use quality of life outcomes rather than IQ as the major evaluative criteria for these studies.

Respondent 0416

a. Gaps and underrepresented research areas.
The confounding issues are, of course, the likely genetic sub-types where a treatment/intervention used in one individual with ASD has little or no positive effect and in another individual with ASD the effect is substantial. The numbers of individuals in the RCTs will need to be large enough to detect these differences, and research on treatments and interventions will need also to include samples for biomarkers (even if samples are initially only obtained and not analyzed until the characteristics of the biomarkers are understood). Funding will need to be increased to ensure large enough samples.

c. Research priorities.
Priority needs to be focused on biomedical treatments (e.g., diet, nutritional supplementation, hyperbaric oxygen therapy, etc) to help determine which treatments are effective for most individuals with ASD. Focus on fewer traditional medications for symptom control vs. healing and recovery.

Respondent 0417

a. Gaps and underrepresented research areas.
My spouse and I are PhD health services researchers. We also have a daughter with ASD. Since her diagnosis, we have worked with several forms of interventions but have observed the best outcomes with Relationship Development Intervention (RDI). We strongly recommend funding to study the efficacy of Relationship Development Intervention (RDI) as a viable treatment modality for individuals with ASD.

b. New opportunities.
We suggest treatment studies use quality of life outcomes rather than IQ as the major evaluative criteria for these studies.

Respondent 0419

a. Gaps and underrepresented research areas.
In comparative studies of autistics & neurotypicals, Functional Magnetic Resonance Imaging (fMRI) (and autopsies) show a number of things in autistics: inflammation in certain brain areas, especially the cerebellum. They show under-connectivity in certain areas of the brain with certain areas of over connectivity. They are showing that the brain has the capacity to reroute and strengthen neuronal links to compensate for damaged/impaired areas. Utilizing this information into therapies that benefit our children is very important. Also, there are reasons why metabolic, immune, gut disorders plague so many ASD kids—What are they? Every child arrives at their "autisms" by various routes. What are the environmental factors for this epidemic—Is it: Our food? Our water? Our air? Our vaccines? The chemical "Body Burden" from manmade chemicals is now in everyone's bloodstream. What are the environmental insults that are damaging parental DNA that in turn damage their offspring? Or, that damage

b. New opportunities.
Parents see what helps their kids and what does not. Why do changes in diet help so many of our kids? Probiotics? Supplements? And other biomedical treatments—including Chelation? Are we not to believe our lying eyes? Our before and after videos? SEE: Journal of Toxicology accepted 12 July 09, "The Severity of Autism Is Associated With Toxic Metal Body Burden and Red Blood Cell Glutathione Levels" (this, of course, includes mercury and lead) http://www.hindawi.com/journals/jt/aip.532640.html This link exits the Interagency Autism Coordinating Committee Web site

c. Research priorities.
Independent vaccine studies done by those without conflict-of-interest must go forward of those who are vaccinated vs. the unvaccinated and the alternatively vaccinated. In 2008 the U.S. budget for autism was $108 (much lower than that allotted to breast cancer or AIDS). According to a 2008 article in The Boston Globe: "$108 million is spent every 4 hours in Iraq." Unconscionable. Just think if we had that money to use to prevent and treat autism. Stop diddling. PREVENT AUTISM NOW. Here is a link that is emblematic of what Big harma does to squelch inquiry: http://www.theaustralian.news.com.au/story/0,25197,25272600-2702,00.html This link exits the Interagency Autism Coordinating Committee Web site It's an article from The Australian about an Australian class action lawsuit entitled: "Vioxx maker Merck and Co drew up doctor hit list" by Milanda Rout, April 01, 2009 and speaks to how Merck "made a hit list of doctors who had to be 'neutralised' or 'discredited' because they criticized the anti-arthritis drug the pharmaceutical giant produced." E-mails re

Respondent 0420

a. Gaps and underrepresented research areas.
I have helped hundred maybe thousands of families and I have not heard or seen on mother have another autistic child; once she has become proactive and researched vaccines and either did not vaccinate or limited it. Start eating whole foods and foods rich in probiotics.

c. Research priorities.
Advocates for safer vaccines have analyzed the studies that everyone likes to quote that say vaccines do not cause autism. Not one of your studies proves that it doesn't. Yes, you can do a vaccinated/unvaccinated study. Again, you know the outcome and it will not be convenient for everyone accountable. I'm advocate of letting everyone off the hook and starting from scratch for future generations. There will be so much mistrust with mother and their pediatricians. You are going to have to let the public know that you mislead the pediatricians and that the pharmaceutical companies misled you. Fess up.

Respondent 0421

a. Gaps and underrepresented research areas.
Bio-treatments work...Research this...Digestive enzymes, senitive groups of children, it is not all or none these groups can be saved...ABA needs to be paid by Medicaid and other insurance supplement.

Respondent 0426

a. Gaps and underrepresented research areas.
A study comparing recovered kids to other kids with ASD. Why has no one looked at all the kids who had a diagnosis of autism and lost it? Describe their autism phenotype, their biological (immune, metabolic, etc.) features, their treatment history, and try to find something that explains this phenomenon!

c. Research priorities.
Many of us hope you will look into all the protocols used by the Defeat Autism Now doctors, particularly vitamins and supplements.

Respondent 0427

a. Gaps and underrepresented research areas.
I know for my son, Seth, ABA has been the only thing that has helped. He attended the Autism Learning Center in Monroe, La, for about 7 months and can communicate with us through either mands or signs. Seth will be starting biomedical treatments this month. I have heard positive responses about that. It would be nice if the school system would also have ABA in the classrooms. Autism is growing, and nothing is being done to help our children.

Respondent 0429

a. Gaps and underrepresented research areas.
Evaluate children who have recovered. A recent NSCH survey found 459 children who had been given an ASD diagnosis, but no longer have the diagnosis (website: http://nschdata.org/DataQuery/DataQueryResults.aspx). (IACC Note: URL not valid.) How did these children recover?

Respondent 0430

a. Gaps and underrepresented research areas.
Study the Defeat Autism Now protocol. Do double blinded placebo controlled studies before dismissing the alternative treatments that parents are finding to be helpful.

b. New opportunities.
Same as above.

c. Research priorities.
Make researching Defeat Autism Now protocols a priority.

Respondent 0431

a. Gaps and underrepresented research areas.
Until such time as research is focused on nonverbal and low-communicating individuals with autism, we will continue to be faced with a dearth of viable treatments and interventions.

Respondent 0432

a. Gaps and underrepresented research areas.
Treatment research should focus on behavioral and biomedical interventions actually in use throughout the community.

Respondent 0436

a. Gaps and underrepresented research areas.
It would be helpful if the different treatments for autism were covered by insurance. They are not presently covered.

Respondent 0437

a. Gaps and underrepresented research areas.
RDI as treatment for neural underconnectivity and dynamic intelligence, quality of life

b. New opportunities.
RDI as treatment for neural underconnectivity and dynamic intelligence, quality of life

c. Research priorities.
I feel ABA is limited and new generation treatments that can have a global effect on developing neural connectivity and improving quality of life are more important at this time.

Respondent 0439

a. Gaps and underrepresented research areas.
Diet needs to be addressed first. It is non-invasive, healthy and doable. Having children eat fresh meat, fruit and vegetables cannot be a bad thing. Research the gluten free/casein free diet and/or the Specific Carbohydrate Diet. When you do research these, which is mandatory since so many children respond positively, develop the study using experts currently proficient in these diets from the autism community. If you have not effectively implemented either of these diets, you will not be capable of designing an study that reflects an accurate result. Research needs to be conducted on oxidative stress in children with autism. Research needs to be conducted on inflammation in children with autism. Research needs to be conducted on gastrointestinal issue in children with autism. You must go to those who are currently treating our children for these issues to design the studies.

c. Research priorities.
RESEARCH BIOMEDICAL INTERVENTIONS! These interventions have been healing children for years. Many children fully recover, losing their autism diagnosis. Children must be healthy before they can learn. That is plain common sense. You have an extensive amount of DAN! doctors currently treating children biomedically. Utilize their expertise to draft the necessary research that will benefit the most children. Once again, use my money effectively and efficiently. I want healthy, happy functioning children. That is supposed to be what we all want.

Respondent 0440

a. Gaps and underrepresented research areas.
Is the existing research held to the same ethical and scientific standards as research unrelated to autism? Are blinding and RCTs being used sufficiently, or is the science of lower quality than research in other areas? What are the risks of these treatments, especially medications and biomedical interventions? Do they have long-term side effects that might not be initially apparent? What are the warning signs for these side effects? Do any of the non-ABA interventions hold promise? Could they be a better fit than ABA for the cognition styles of some autistics? How can we identify which ones are helpful and which are dross? How can we utilize autistic perspectives to identify which interventions and treatments are the most beneficial?

c. Research priorities.
This section is of more or less appropriate priority relative to the other sections. Non-ABA interventions are vastly under-researched. More resources should be devoted to identifying which, if any, of these are of good benefit, and then into expanding the body of research about them. All research in this category should be held to high scientific standards. Blinding and randomized controlled trials should be utilized whenever possible. Particular care should be put into identifying the risks for medical interventions.

Respondent 0442

a. Gaps and underrepresented research areas.
Many parents are recovering their autistic children through biomedical interventions. Diets, supplements, gastrointestinal treatment, just to name a few. Study these kids, talk to their doctors. The AAP and most pediatricians admit they do not know how to help autistic children. Help these pediatricians learn by studying whether biomedical treatments help kids already suffering.

b. New opportunities.
The empirical data is now available for autistic children receiving biomedical treatments. The IACC needs to study the impact of these treatments on recovery. It appears Autism is not just a psychological disorder, but also a physical injury or disease. Help the body heal, and the mind will follow. New opportunities exist to study kids receiving biomedical treatments v. kids who are only receiving ABA therapy or other psych only treatments.

c. Research priorities.
Parents are light years ahead of the IACC in treating their children. The parents are on the front lines. Parents don't do expensive biomedical treatments and diet restrictions unless they see progress in their children.

Respondent 0443

a. Gaps and underrepresented research areas.
We need to study nutritional supplements and diets and chelation, and other alternative medicine such as herbs and Chinese medicine; homeopathy; hyperbaric oxygen; zeolites; colloidal gold; acupuncture and chiropractic and craniosacral; NAET; listening/auditory therapies; neuro and bio feedback; mitochondrial cocktails; sauna; vision therapy; clay; etc.

c. Research priorities.
These should be as high a priority as other therapies such as ABA and OT.

Respondent 0445

a. Gaps and underrepresented research areas.
The systemic component of autism supports the possibility that both the core behaviors and medical issues have a convergent mechanistic basis that if identified, could provide new insights into treatment targets, candidate genes, and strategies for prevention.

c. Research priorities.
EARLY INTERVENTION

Respondent 0449

a. Gaps and underrepresented research areas.
Parent Led Programs to take a developmental approach to overcoming Autism, RDI

b. New opportunities.
RDI can be used to develop dynamic thinking skills and ultimately remediate autism. It focuses on improving quality of life for children with Autism and their families. There is a urgent need to provide treatment that develops more dynamic thinking.

c. Research priorities.
We need to understand treatments that improve quality of life for individuals on the autism spectrum and their families. This intervention focuses on treatment of the issues that present obstacles to the children with Autism. Prioritizing this is critical. We also need to find affordable treatments for families.

Respondent 0450

b. New opportunities.
There should be funding for studying the efficacy of RDI (Relationship Development Intervention) as a viable treatment of the core deficits associated with ASD. While ABA focuses on early childhood development, RDI offers a treatment that is effective at any age and one that can be used lifelong. Further, families using RDI have seen remarkable results in the ability of these children to be able to think and adapt to dynamic environments which is necessary for independent living. Further, RDI is a much less expensive treatment to fund as compared to the intensive ABA. Most traditional treatment methods end up turning these children into robots. Yes they learn words and static skills, but they can't think for themselves. RDI teaches children with ASD to think and adapt in changing environments and is real hope for families dealing with ASD.

c. Research priorities.
Funding the study of RDI needs to be a priority. There are thousands of families worldwide experiencing daily successes using this treatment method. Treatment of ASD cannot just be about building language and increasing test scores, it needs to enable our children to think for themselves, be able to cope with change and dynamic environments and be interested in the world around them. Only then can they hope to be productive members of society. RDI offers this to families with ASD.

Respondent 0452

a. Gaps and underrepresented research areas.
More research on the Relationship Development Intervention (RDI) program developed by Dr. Steven Gutstein and other developmental based intervention approaches for autism.

Respondent 0453

a. Gaps and underrepresented research areas.
Behavioral and biomedical interventions actually in use in the autism community must be researched. Talk to those affected. What are they doing to help their children? What are they finding to be most helpful? There are many children who are being so successfully treated that they are losing their diagnosis! Surely what these parents did to help their children must be studied immediately.

b. New opportunities.
Autism is a disease that affects four major systems in the body: 1) the gastrointestinal system, 2) the immunological system, 3) the toxicological system, and 4) the neurological system. (See: Changing the Course of Autism: A Scientific Approach for Parents and Physicians, by Bryan Jepson, MD). Successful treatments need to address these affected systems. Bryan Jepson works at Thoughtful House, a research center in Texas that focuses on the causes and most effective treatments for those with autism. There are many resources available to assist us to help these children. But funding needs to be directed in the most efficacious directions. Tragically, mainstream medicine is doing nothing effective to help those afflicted (I suspect because of their ties to the vaccine industry). Insurance is not covering the treatments that are most effective. Parents are left trying to figure it out on their own and pay for it on their own. This is bankrupting us! Help us.

c. Research priorities.
Behavioral intervention has been scientifically proven to help these children. But it is expensive. As a single mom and a university professor, I don't have the funds to get my son the behavioral intervention he needs: 40 hours per week of ABA therapy. If I had this, I think my son's counterproductive behaviors would dramatically diminish and he would become increasingly functional. I have also seen results through biomedical interventions. The Defeat Autism Now (DAN!) approach helped my son. Homeopathy, specifically homeovitics, helped my son. Cranial sacral therapy helped my son. Addressing the gastrointestinal issues and the food sensitivities has also been very helpful.

Respondent 0454

a. Gaps and underrepresented research areas.
These two initiatives previously drafted are missing: 1)Study the effect of vaccines, vaccine components, and multiple vaccine administration in autism causation and severity through a variety of approaches, including cell and animal studies, and understand whether and how certain subpopulations in humans may be more susceptible to adverse effects of vaccines by 2011. Proposed costs: $6,000,000 2) Determine the feasibility and design an epidemiological study to determine if the health outcomes, including ASD, among various populations with vaccinated, unvaccinated, and alternatively vaccinated groups by 2011. Proposed costs: $10,000,000

b. New opportunities.
Research Oxidative stress in autism, research immune disregulation in autism, research mitochondrial symptoms in autism, research chronic viruses' role in brain inflammation in autism.

c. Research priorities.
Vaccine safety, the current vaccine schedule, vaccine ingredients and their effect on these children (again this needs to be unbiased research conducted by parties with absolutely no ties with pharmaceutical companies and vaccine makers).

Respondent 0455

a. Gaps and underrepresented research areas.
All alternative approaches should be studied. There needs to be additional studies on which therapist intervention is most beneficial (structured vs. play/relational based; intense vs. non-intense). Doctors should be required to sit in on these therapy sessions!

Respondent 0458

a. Gaps and underrepresented research areas.
The topic of intervention for nonverbal or low-verbal individuals is sadly underrepresented. What biological factors are keeping individuals from developing speech? What interventions can maximize each individual's ability to communicate?

b. New opportunities.
There should be much more emphasis on nonverbal or low-verbal individuals while researching every area of autism especially interventions. These individuals are suffering the most from the symptoms of autism but because they cannot advocate for themselves they are often ignored. I am the mother of a nonverbal, low-functioning child. Please think of him and others like him when deciding how to spend research dollars!

c. Research priorities.
Priority should be given to lower functioning autistic individuals because they are the ones who suffer the most from their autism. It will also save money in the long term as these individuals gain more skills and require less expensive life time care.

Respondent 0461

a. Gaps and underrepresented research areas.
You need to look at the treatments being done by DAN (defeat autism now) practitioners. These treatments are effective at the minimum of lessening some of the symptoms and in some cases reversing the affects of autism

c. Research priorities.
Look at treatments to boost/repair the immune system, chelating out heavy metals and repairing the neurons in the brain.

Respondent 0463

a. Gaps and underrepresented research areas.
Since 1967 ARI has been collecting parent's ratings of the usefulness of treatments they have tried on their children. Data has been collected from more than 27,000 parents. To review these reports please go to http://www.autism.com This link exits the Interagency Autism Coordinating Committee Web site. To date, the five top-rated interventions in order of success are chelation therapy, supplemental methyl B-12, specific carbohydrate diet, food allergy treatment, and melatonin. These interventions should be subjected to intensive investigations. We believe it's important when designing clinical trials that the tremendous amount of heterogeneity present in those diagnosed with ASD be taken into consideration. Therefore it's essential to not apply treatments across the spectrum, which would tend to dilute effective treatments, but instead to identify sub-groups of those who have documented medical histories or laboratory data indicating they might respond favorably to a particular targeted treatment.

b. New opportunities.
Short term goal number two that addresses co-occurring medical conditions in ASD should target conditions arising from altered/impaired immune, metabolic, and gastrointestinal function in those with autism. Short term goal number six involving assessments of safety and efficacy of five widely used interventions should target those reported by parents as being most effective, such as chelation therapy (or therapy aimed at increasing glutathione and promoting detoxification pathways), supplemental methyl B-12, specific carbohydrate diet, food allergy treatment, and melatonin. Clinical trials should take into consideration heterogeneity and sub-group those with autism based on historical or laboratory data indicating that the child may benefit from the proposed treatment or intervention. Clinical trial methodologies also need to be developed that can accurately assess effectiveness of multiple treatment regimens.

c. Research priorities.
The above research opportunities should be made a high priority and added to the NIH list of short-term objectives. All research should be prioritized to reflect the urgency of the goal of restoring health to those affected with the disorder, as well as the prevention of new cases.

Respondent 0465

a. Gaps and underrepresented research areas.
While ABA and similar therapies have been well studied, there are other treatments for the whole person. Language therapy and physical therapy as well as occupational therapy are important. Non-traditional therapies such as hippotherapy, music and art therapy, and swimming may also be components of a therapeutic modality which seeks to enhance quality of life.

Respondent 0466

a. Gaps and underrepresented research areas.
Look more at natural treatments (diet and nutritional supplementing) that improve the overall function of an individual's immune system, neurological system, gastro-intestinal and endocrine systems. Currently there is far too much emphasis on prescription drugs that do nothing to address body function. Because of the risk of adverse effects, myself and many parents disagree with medicating as a treatment approach for ASD. We want a safe and effective intervention that helps our children.

b. New opportunities.
Diet- Gluten free amd casein free diet for example supplements that support immune function, endocrine function, gastrointestinal processes, inflammation and the neurological system.

c. Research priorities.
Research diet and natural alternatives more. Study/ track the progress of ASD children that have used natural treatment protocols versus those who haven't or relied only on behavioral interventions.

Respondent 0472

c. Research priorities.
Research into alternative means of communication such as PECS (and other forms of Assistive Augmentative Communication or AAC) is vital and should be a top priority. PECS/AAC is good example of practical interventions--tools which will improve many autistic people's lives by providing a means of communication which is not typical but which may be easier and more effective for autistic people. These tools are geared towards promoting autistic communication rather than pure normalization. I applaud the IACC for including this within its research agenda.

Respondent 0473

b. New opportunities.
Develop and test biologically-based treatments for core symptoms of autism since current approach is multi-factorial, the treatment trials should be too (e.g. testing the DAN! protocol as written rather than individual components) Determine symptom presentation (in non-communicative individuals) of various medical morbidities, particularly GI disturbances, and identify appropriate diagnostic assessments and treatments Determine utility of dietary manipulations, use of prebiotics/probiotics, and other complementary-alternative therapies. Pick the low-hanging fruit such as testing anti-oxidants, treating inflammatory bowel diseases, and supplementing with methyl-B12 and other targeted supplements Determine utility/feasibility of immunomodulatory therapies Biological repositories be established for maternal blood samples, cord blood, urine, stool, blood, etc.

Respondent 0474

a. Gaps and underrepresented research areas.
Because it is a proven approach, and one in which research aimed at further advancing and improving services continues, we urge the IACC to specifically support research in applied behavior analysis and, in particular, applied behavior analytic research designed to improve curricula and methods for teaching individuals with autism. Secondly, although effective services exist, they are in extremely short supply. We also urge the IACC to advocate for research on the dissemination of empirically validated services and the training of service providers.

b. New opportunities.
There is a need for continued research within applied behavior analysis. Behavior analysis is a well established science with an active research community that continually advances an empirically-based technology for teaching individuals diagnosed with autism. Research in behavior analysis has produced effective interventions for behavioral symptoms of autism but research in this field is ongoing and funding is needed. Additionally, there is a need for advancing research evaluating methods of dissemination of effective interventions and training professional to implement those interventions.

Respondent 0476

a. Gaps and underrepresented research areas.
70 years of 'behavior treatments' springing from not-the-whole-truth guesswork made while always looking only at negative aspects, and only in frustrated, apprehensive, and worn down children, has done harm to many individuals with unrecognized useful capabilities. From our experience, people living on the autism spectrum can and will often approach near normal behavior and perform quite well, IF they are valued in society for their uncommon capabilities and skills, treated with respect, and challenged appropriately.

b. New opportunities.
Concerning the condition surrounding autism, M has been naively chasing symptoms of a problem, mistakenly assuming the symptoms are the problem. If M... learns the requirements and utility of the SPRATS of an individual with autism symptoms, and the SPRATS interaction with the individuals Life Needs (R-W-N-S-eHa-UA-eHoE-ESaC-IdF-aHa-DHoE-EBI) while employing appropriate POSITIVE BEHAVIOR SUPPORTS, such WILL optimize the development of a large number of eccentric experts, with a positive outlook on self and society instead of a boor with poor social skills. These people, with a real chance for success as an independent adult, will be taxpaying contributors to society and not a drain.

c. Research priorities.
See section IV b.

Respondent 0477

a. Gaps and underrepresented research areas.
Please make low verbal and nonverbal people with autism part of the Strategic plan! It is so important. Thank you very much.

Respondent 0480

a. Gaps and underrepresented research areas.
Obtaining an accurate diagnosis is of significant concern for the State of Florida. Making a diagnosis of Down Syndrome simply requires visual identification, confirmed with a genetic blood test. Autism disorders, however, cannot be diagnosed by a physical test, but rather a specified number of characteristics listed in the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) must be present, in ranges inappropriate for the child's age. ASD can be especially difficult to diagnose in young children where speech and reasoning skills are still developing and is even more difficult to reach an accurate diagnosis on the less severe end of the spectrum. Diagnosis is based on a combination of parent interviews, non-medical tests, observation, and professional judgment.

b. New opportunities.
Some noted primary advantages of early intervention are: presence of neurologic plasticity at younger ages; better school placement outcomes, for example, participation in general education versus special education; better chance of graduating from high school; greater developmental gains: higher likelihood to live independently: positive economic impact over a life-time. Early intervention may be successful if it is intensive in hours; families are active participants in their child's intervention; staff persons are well-trained and knowledgeable about the disability; there is objective evaluation of the child's progress; the curricula is highly structured resulting in a predictable daily routine and is focused on developing communication skills as well as other developmental skill areas; teaching procedures emphasize generalization and maintenance of skills; and, transitions to school are carefully planned and well supported.

c. Research priorities.
In Florida ABA services are available to eligible participants on the Developmental Disabilities (DD) Home and Community Based Services (HCBS) Medicaid Waivers. After conducting a behavioral assessment and creating an individualized behavioral plan, the Behavior Analyst typically meets with the individual and/or primary caregivers two hours per week, while the Behavior Analyst Assistant (as another service available on the DD HCBS waiver) meets with the individual and/or primary caregivers for 8-10 hours per week to implement treatment recommendations.

Respondent 0481

a. Gaps and underrepresented research areas.
To the extent that medications are studied, their purpose should be to improve quality of life such as by reducing anxiety, not to change an Autistic person into something else. Medications such as Risperidone that place a child at risk of developing serious long-term health problems should not be casually used to suppress behaviors that could instead be accommodated, and their use in research studies should be subject to very stringent precautions to prevent children from being unnecessarily endangered.

b. New opportunities.
As suggested, more studies on speech and occupational therapy and adaptive technologies would be very helpful, as would studies on individualized school curricula and other school supports. Because there is little evidence to support behavioral programs and because the objective of suppressing harmless differences in a minority population is unethical, funding should be directed elsewhere.

c. Research priorities.
Suggesting that very young children should receive interventions to prevent development of autistic characteristics and reduce family burden is disrespectful to Autistic people. We are citizens whose diversity should be respected, not burdens. More efforts should be made to include Autistic self-advocates in IACC workgroups and other settings. Priorities should be determined according to what Autistic people have found to be helpful. All research should be conducted with due regard for the human rights of the subjects.

Respondent 0484

a. Gaps and underrepresented research areas.
Positive Behavior Support and meeting the unique individual needs of each individual will result in better outcomes for all. Music Therapy, acupuncture, pet therapy and other methods often ignored by many behavior therapists.

Respondent 0485

a. Gaps and underrepresented research areas.
Bio medical, Bio-medical, Bio-medical. This is the cutting edge of therapeutic, safe intervention that is helping numerous children. These therapies are addressing the underlying physical ills of autism.

Respondent 0488

a. Gaps and underrepresented research areas.
Relationship based, family mediated interventions are missing, and in spite of the fact that many families choose these types of interventions after finding behavioral interventions to be only partially effective or not effective at all. Examples of the types of interventions that should be studied include: Relationship Development Intervention and Hanen.

b. New opportunities.
Maybe this is the wrong place for this, but I think we need a better definition of what it means to help. How are we measuring quality of life for the child with ASD? Are we measuring it at a family systems level? Are those measures broadly used as assess outcomes in clinical practice or are they restricted to academic settings?

c. Research priorities.
I often see families and caregivers marginalized in intensive behavior programs. I'd like to see some research in parent-mediated interventions, such as Relationship Development Intervention and Hanen, which places parents at the center of the process. Parents, unlike therapists, have a lifelong commitment to their children and yet we devote very few resources to systematic collaboration with them.

Respondent 0490

a. Gaps and underrepresented research areas.
Please do more research into RDI or relationship develop intervention therapy.

Respondent 0491

a. Gaps and underrepresented research areas.
Section IV discusses behavioral approaches such as ABA, but does not mention developmental-relationship based approaches. Extensive review has shown that there is not enough research to clearly support either approach. The question of which approach is most effective and for what purpose should be a major research topic.

b. New opportunities.
A major research opportunity is investigating the outcomes for children receiving behavioral approaches vs. developmental-relational, affective based interactive therapies such as DIR/Floortime. Multiple small scale studies may offer some advantages in terms of feasibility and fidelity. Because of the great diversity of children labeled ASD, there is more opportunity in small studies to describe individual differences and describe outcomes which are specific to those populations.

c. Research priorities.
Since children often enter therapy at 2, I would recommend that trials for 'early intervention' extend to at least 5 years of age. The amount of money allocated for current and potential future biomedical investigation ($128.9) vs. therapeutic outcomes for current therapies ($49.0) is lopsided. Current intervention is comprised of primarily therapeutic interventions (OT, Speech, Behavior, Floortime, and Education) with very little scientific support for bio-medical interventions (nutrition, medications, bio-medical procedures). Although there is a need for bio-medical studies, this is also covered by understanding the biology of ASD. Funding is needed urgently at this time to clarify the effectiveness of currently available treatment options, such as ABA and DIR/Floortime. The last short term objective to study comprehensive early intervention, does not meet the SMART criteria (specific and realistic) considering the many variables involved, and would make outcomes difficult to interpret.

Respondent 0493

a. Gaps and underrepresented research areas.
Chelation nutritional therapy diet ABA parent involvement in classroom and educational approach they live it 24/7 we could stop treating them like they don't have something to offer.

b. New opportunities.
Detox gets the chemicals injected into the children out.

c. Research priorities.
Biomedical intervention we didn't have to find the breast cancer gene before we offered treatment. Maybe someone should contact Autism Research Institute since they have been working on this since 1967 Oh yeah they actually have 35 some years of parent surveys we wouldn't want to look at what the people living this might have to say.

Respondent 0494

a. Gaps and underrepresented research areas.
First off, insurance coverage must be provided!! This is a medical disorder and should be treated the same way as other childhood diseases. All of the "mainstream" therapies (ABA, Floortime, OT, Speech, RDI, Sensory therapies) must be available for all children. The "crazy" diets work for many kiddos. Research must be done in the biomedical arena. Talk to the doctors that treat their own children with autism. Think outside of the box...the box clearly isn't working for most of our children.

b. New opportunities.
same as a.

c. Research priorities.
same as a.

Respondent 0497

c. Research priorities.
Relationship Development Intervention, or RDI, should be included in high priority research on treatments/interventions for autism.

Respondent 0500

a. Gaps and underrepresented research areas.
Biomedical treatments for neuro-inflammation. Detoxification of heavy metals. Treatment of gastrointestinal issues.

c. Research priorities.
Biomedical treatments. Detoxification treatments, including chelation. Antifungal treatments for gastrointestinal issues.

Respondent 0501

a. Gaps and underrepresented research areas.
Problems my family faces that needs solutions include: over sensitivity to sensory stimuli, feeding difficulties, short attention spans, sensitive mouths that interfere with hygiene, understanding their learning styles, teaching approaches that are effective, and facilitating communication.

c. Research priorities.
Focus on improving the quality of life of the *people*, not fixing them. Teach individuals with autism and their families and the professionals who work with them how to accommodate and cope with differences.

Respondent 0502

c. Research priorities.
Would like research into the so-called DAN protocol, to settle once and for all if these treatments are effective. Would also like research into different types of stimulant medications (often used with ADHD) for use with autistic kids. More early intervention research for families "at risk," what happens if we start working with the children as babies, etc?

Respondent 0503

a. Gaps and underrepresented research areas.
As the parent of a child with autism, I am concerned that nonverbal and low-communicating individuals have been almost entirely excluded from federally-funded research. Nonverbal and low-communicating individuals with autism deserve to be included in the Strategic Plan for Autism Spectrum Disorders Research. Almost nothing is known about nonverbal and low-communicating individuals. I know of no treatments that have been designed specifically for nonverbal and low-communicating individuals. Since nonverbal and low-communicating individuals make up about 50% of the autism population in this country, it is critically important that research be aimed specifically at this group.

b. New opportunities.
The future right now looks very bleak for individuals with nonverbal or low-communicating autism. Many will end up relying on government assistance for their long-term care. Please help us look forward to a better future for our children by including nonverbal and low-communicating individuals in the federally-funded research.

Respondent 0506

a. Gaps and underrepresented research areas.
We agree with the need to design and support rigorous trials that target psychotropic medications that may help "treat" children with ASD but also want to encourage trials focused on medical co-morbidities such as gastrointestinal issues, neurological issues, nutrition and feeding. Understanding neurologic variations, including EEG, that may affect behaviors (daytime, sleep, etc.) and potential treatments (e.g., anti-epileptic drugs) are important areas of investigation. We also feel that it's important to understand whether certain lab tests (i.e. EEG, MRI) should be included as part of the standard of care for children with autism. This has significant implications for insurance reimbursement and health care policy.

Respondent 0507

Helen McNabb

a. Gaps and underrepresented research areas.
1. Research on a process of "teaching then reviewing" one-to-one with a student. 2. Research on integrading one-to-one Speech Language therapy into the classroom in REAL TIME. 3. An unbiased, independent research on the Maryland State Dept. of Developmental Disabilities Association's - successes and failures. 4. An unbiased, independent research on the Maryland State Dept. of Health & Mental Hygiene relating to services for those with ASD - successes and failures. 5. Research the amount of financial aide needed to support an adult with ASD. 6. Research # of students with ASD attending and graduating from college. 7. Research the schools and colleges that provide the best supports for those with ASD. 8. Research # of adults with ASD that also have mental health illness. 9. Research # of adults getting respite services and those who are not and why.

b. New opportunities.
1. Integratding one-to-one Occupational Therapy to include Daily Activities of Living as a class requirement for those with ASD. 2. Allowing private professionals such as Speech Language Pathologists (hired by the parents) to implement their recommendations into the public school and collect the results. 3. Raise awareness of a clearer understanding of Asperger's Disorder for everyone. 4. Raise awareness of a clearer understanding of ASD for everyone. 5. Raise awareness in the private and public sector to erase the stigma, bullying, etc. 6. Implementing more funds to support the various needs of those with ASD. 7. Teach students in public school about those with special needs - understanding their difficulties. Teach compassion!

c. Research priorities.
1. Address the needs of the older population since they have been waiting for years! They need daily supports in all areas: Financial, educational, medical, respite, etc.

Respondent 0509

a. Gaps and underrepresented research areas.
"Support at least three randomized controlled trials that address co-occurring medical conditions associated with ASD by 2010... and "Conduct five randomized controlled trials of early intervention for infants and toddlers by 2011..." and "Launch three randomized controlled trials of interventions for school-aged and/or adolescents by 2012..." and "Test safety and efficacy of at least five widely used interventions (e.g., nutrition, medications, medical procedures) that have not been rigorously studied for use in ASD by 2012..." Be sure to include DAN! biomedical treatments in these studies, including dietary intervention (GFCFSF and SCD), chelation, vitamins B-12 and B-6, curcumin (Enhansa), digestive enzymes, probiotics.

b. New opportunities.
Rather than simply looking at one biomedical intervention, track a few hundred children who are going through DAN! treatments. Try to determine which children benefit from specific treatments and why. Usually one treatment by itself isn't enough, but a number of treatments in combination can have a gradual effect. This can make research tricky.

c. Research priorities.
Much too little attention has been paid to biomedical treatments.

Respondent 0510

a. Gaps and underrepresented research areas.
How can the average American family obtain access to these options, and how do we tailor them to our children's needs??

b. New opportunities.
same

c. Research priorities.
Provide free access to these options for families with diagnosis-we want to try!!

Respondent 0512

b. New opportunities.
ABA (applied behavioral analysis) therapy should be readily available as part of early intervention programs.

c. Research priorities.
Studies should be conducted to establish whether diet change and supplementation and other biomedical interventions can alleviate autistic symptoms. As a parent of a child with autism, I have watched my child blossom with these types of intervention. These children DESERVE to have EVERY avenue explored on their behalf even if it not a popular position to take.

Respondent 0514

a. Gaps and underrepresented research areas.
Treatments . . . . . it goes without saying that nothing behavior works. Nothing in our health care system has been helpful for 6 years. Create a new doctor available to every Autistic ---- A toxicologist in every hospital. . . . Or create a federal law to pay for DAN doctor treatments this is biologically caused. Do the nonvacinated study vs. vaccinated. And cut out all the toxins the CDC and governments are pimping.

b. New opportunities.
Treatments . . . . . it goes without saying that nothing behavior works. Nothing in our health care system has been helpful for 6 years. Create a new doctor available to every Autistic ---- A toxicologist in every hospital. . . . Or create a federal law to pay for DAN doctor treatments this is biologically caused. Do the nonvacinated study vs. vaccinated. And cut out all the toxins the CDC and governments are pimping.

c. Research priorities.
Treatments . . . . . it goes without saying that nothing behavior works. Nothing in our health care system has been helpful for 6 years. Create a new doctor available to every Autistic ---- A toxicologist in every hospital. . . . Or create a federal law to pay for DAN doctor treatments this is biologically caused. Do the nonvacinated study vs. vaccinated. And cut out all the toxins the CDC and governments are pimping.

Respondent 0516

a. Gaps and underrepresented research areas.
Nonverbal kids with autism are underrepresented in current research. The Strategic Plan for Autism Spectrum Disorder research should include people with autism who are nonverbal. More research is needed to develop interventions that are effective for people with autism who are nonverbal.

b. New opportunities.
Lack of communication is the biggest problem for people with autism who are nonverbal. Research aimed at developing new communication methods is desperately needed. Research designed to better understand people with autism who are nonverbal is also needed and important. Autism research has led to many improvements for people with autism. People with autism who are nonverbal have not experienced as much of this success.

Respondent 0517

a. Gaps and underrepresented research areas.
As the step-parent of a nonverbal child with autism, I am concerned about the lack of funding and research into this major subgroup of autism (15-20% of the autistic population). These kids are written off as "low-functioning" but for those of us who are familiar with these kids and their more verbal counterparts, it is obvious that this label is inaccurate and damaging. His daily struggles to communicate remind me of all I take for granted. I cannot imagine how difficult it is for him to be unable to communicate the simplest messages and information that even very young typically developing children can communicate easily. As an educator, I have become convinced that we have failed to provide him the necessary educational supports to allow him to excel. The prevailing attitude of "education professionals" is biased against him since there is no research to support optimistic goals.

b. New opportunities.
Although there is evidence that some or most of these kids may be primarily auditory learners, no research has been done to validate this evidence or explore the learning opportunities it may present. Some exciting advances in treatment have made significant improvements to the lives "high functioning" kids. Strong emphasis on visual cues and learning modalities in addition to sensory integration, just to name a couple. I have 3 nephews that benefitted from this research. However, we've left behind their nonverbal cousin. It's time to close the gap. As we strive to maintain the research momentum, we need to remember those we are leaving behind and bring a special focus to understanding their condition and abilities and learning how to reach them.

c. Research priorities.
Research aimed at understanding the communication disabilities of the nonverbal kids with autism. Particularly important is research aimed at developing appropriate communication interventions targeted specifically for the nonverbal end of the autism spectrum. I believe it is necessary to explicitly promote the goal of including these kids in future research efforts.

Respondent 0519

a. Gaps and underrepresented research areas.
Implement a more consumer based review process for conducting treatment research similar to the Department of Defense CDMRP for autism to improve transparency and meaningful public participation. Implement increases in short term objectives 1, 2 and 6 by public IACC members in response to this crisis.

b. New opportunities.
Increase and improve research designs to consider subgroups of responders versus the aggregate treatment response with recognition that treatment response can inform phenotype studies. Data-mine clinical data from ARI on interventions that have not been rigorously studied and increase investigation of these interventions to 20.

c. Research priorities.
As in Question 3, remedy balance of federal representation to public IACC representation to prevent skewing of prioritization. Lack of urgency displayed by Federal members does not serve the urgent need of our community.

Respondent 0520

a. Gaps and underrepresented research areas.
I am requesting that there be funding to study the efficacy of Relationship Development Intervention (RDI) as a viable treatment modality for individuals with ASD. We have seen amazing results in both of our ASD children through RDI treatment.

b. New opportunities.
I am requesting that there be funding to study the efficacy of Relationship Development Intervention (RDI) as a viable treatment modality for individuals with ASD. We have seen amazing results in both of our ASD children through RDI treatment.

c. Research priorities.
Allow RDI to be included in the autism waiver and disability services. Allow funding to study RDI as a viable treatment, research studies show that this treatment is working for autistic children and their families. This is not an experimental treatment. It is the gold standard in autism treatment.

Respondent 0521

a. Gaps and underrepresented research areas.
Study low and nonverbal children with autism and the innovative methods like Rapid Prompting Method (RPM) offer. Alternative methods like TRM (Trans magnetic stimulation) may also have merit

b. New opportunities.
Study innovative methods like RPM that may have little empirical research to date but reveal important directions for teaching low and nonverbal children with autism

c. Research priorities.
Allow greater attention to low and nonverbal children to be studied and the innovative methods that help them develop their intellectual, social and physical potential.

Respondent 0524

a. Gaps and underrepresented research areas.
Take a look at DIR/Floortime and RDI, not just ABA. ABA can be great, but it's based on what we want an autistic person to look like on the outside. We need to start assuming that there is a person with human desires and choices on the inside, someone who might be reached through DIR/Floortime, and/or taught to interact meaningfully with RDI.

Respondent 0525

a. Gaps and underrepresented research areas.
Defeat Autism Now treatment protocols.

c. Research priorities.
Stop giving children Toxic Vaccines!

Question 5: Where Can I Turn for Services?

Respondent 0013

Eileen Nicole Simon
conradsimon.org This link exits the Interagency Autism Coordinating Committee Web site

a. Gaps and underrepresented research areas.
Where can we turn? Who will pay for lifelong care? Actuarial scientists from Social Security should be included in the IACC panel of agency experts. Actuarial scientists may be more aggressive at seeking environmental causes of the increased prevalence of autism. They might bring a new perspective on what kind of research could more quickly lead to prevention. Another way to involve actuarial scientists would be to require long-term-care insurance be purchased by parents of every child born. This should take priority over banking of umbilical cord blood. Banking of umbilical cord blood is dangerous, because it may prevent full natural transition from fetal to neonatal respiration. Placental blood is respiratory blood and by nature's plan should be transferred to the capillaries surrounding the alveoli. Otherwise blood may be drained from the brain for the more immediate needs of the pulmonary system.

b. New opportunities.
Housing and food are basic human needs, and our capitalistic democratic society is clearly failing to ensure these needs are met for everyone. Financial bailouts for mortgage lenders are the disgrace of the current American system. The right to private ownership should not be denied to those fortunate enough to be able to accrue sufficient assets to provide for their own needs. However, we need socialism to the extent required to provide for those who are disabled and unable to survive without assistance. I suggested to my legislators that rather than bail-out banks, they should give the money to Marriott Hotels to build enough Residence Inn Hotels to ensure housing for everyone. I am sure entrepreneurs at Marriott would know how to take the money, build the hotels, and eventually make a profit by encouraging those they housed to work toward shared ownership of their homes–providing jobs as housekeepers, cooks, maintenance, grounds keepers, etc. Please look into this.

c. Research priorities.
Put the $16,700,000 and $7,000,000 proposed in the Strategic Plan for evidence based services and effective interventions in community settings up for bid. Encourage companies like Marriott to consider what opportunities this might provide for them. Encourage partnerships between companies like Marriott and current community service providers, like Vinfen in Massachusetts. Put out a bid for real and thoughtful new strategies. In the following section on what the future holds, you state that little is known about autism spectrum in the criminal justice system. I work in the Massachusetts Department of Correction, and know that statistics can be gathered. First, autism and Asperger spectrum disorders can clearly be seen as part of a wider spectrum of developmental disability. Further, many physical problems like gastro-intestinal disorders, asthma, and diabetes are clearly evident to direct care-givers. Note also: Incarceration is the costliest kind of long-term care.

Respondent 0016

a. Gaps and underrepresented research areas.
Microboards (small board of directors) are excellent ways for people to get to know my son and bridge relationships out in the community.

c. Research priorities.
Communication support good employment support good support for connecting people with autism to the community through education, employment, volunteering, recreation. Helping them define and live out a good life. Its not complicated. It takes care.

Respondent 0022

a. Gaps and underrepresented research areas.
For many there are no services at all - no good education, no respite, no doctors willing to manage the individual, no dental care, no adult care options and a government attitude that basically says community care means no care.

b. New opportunities.
Actual services are needed, there is plenty of research showing the need for services. There is not really any need to document the failure of care any further. Put the money into care.

c. Research priorities.
Prioritize giving care not "researching" the need for care and then not providing any.

Respondent 0023

John Best
Hating Autism blog

a. Gaps and underrepresented research areas.
The Autism Mercury Yahoo group.

Respondent 0024

a. Gaps and underrepresented research areas.
Unfortunately our state of New Jersey is unable to provide services for many of those in need, including day programs, transportation and housing.

b. New opportunities.
The states must partner with parents who are willing to meet them halfway to provide residential services for their adult children.

c. Research priorities.
The NJ Division of Developmental Disabilities must be investigated and overhauled because it does not work. Case managers do not answer their phones and requests are ignored. In most cases, parents need to have a lawyer to help them get services and even then there is a fight.

Respondent 0029

a. Gaps and underrepresented research areas.
What is the workforce need for trained direct care staff to care for adults with autism? What are the best methods for training and supervising staff to care for adults with autism? What services are available for adolescents and adults to help them lead meaningful lives?

c. Research priorities.
There is too little research into services for adolescents and adults. Too much emphasis on early intervention to the detriment of all other age groups.

Respondent 0031

a. Gaps and underrepresented research areas.
There are no effective laws that require services for adults with autism. If the laws are in effect then they are not enforced. Service providers will not provide care unless an adult qualifies for Medicaid. If someone has just a little too much money then they can't get any help at all, no matter how disabled they are.

Respondent 0035

a. Gaps and underrepresented research areas.
Research needs to be done on the quality of services provided by ALL people working with autistic children. A rating should be given to the service providers based on quality of service using parental report, monitoring of methodology - data collection, number of hours provided, etc.

b. New opportunities.
Develop a rating system similar to how restaurants are rated using health inspectors so that parents know what service providers provide quality services

c. Research priorities.
It is extremely important that parents have a way of knowing which service providers provide quality effective services and which service providers do not. This will help raise the quality of services provided by service providers and help parents find the most effective service. Time is of the essence and parents should not be wasting their time with poor service providers

Respondent 0037

a. Gaps and underrepresented research areas.
Your kidding right. I have to lie and my Dr. have to lie so that my two boys can get speech therapy. Everything else comes out of my wallet house 401k and everything I sell.

b. New opportunities.
How about covering it with insurance.

Respondent 0042

c. Research priorities.
There are areas where there are no services at all. There are services who are staffed by people who do not understand autism. There needs to be more services offered for people of every age on the spectrum. They need to be better quality services too. It would be my recommendation that this and the following question should be priorities over prevention research (and anything about vaccines as well).

Respondent 0046

a. Gaps and underrepresented research areas.
There seems to be many places to turn for help now. I see parents that are in denial though and do not turn for help when they should.

b. New opportunities.
There are Developmental Screenings now, which lead to receiving services earlier.

Respondent 0047

a. Gaps and underrepresented research areas.
Remove the pharmaceutical companies and insurance companies from the pockets of the government agencies that are supposed to be safeguarding the public from abuses.

b. New opportunities.
Acknowledge the "experts" as being on the payroll of the manufacturers of the vaccines and drugs that are being touted as the salvation of man, and realize that they are offering a skewed viewpoint.

c. Research priorities.
See above.

Respondent 0049

a. Gaps and underrepresented research areas.
Parent groups and advocacy organizations like the Association for Retarded Citizens. Parents new to autism need to know where they can find resources and support. For each new family, the process starts from scratch and wastes valuable time.

Respondent 0052

a. Gaps and underrepresented research areas.
There are resources out there, but often they are hard to access, or under- publicized. Many people that don't work with the disabled community or know someone who does have no idea where to start looking. Most people know about SSI or DSHS for example, but have no idea that both have programs designed to work with the Autistic community and so they struggle on without those supports. Few people ever remember hearing of the RSN either although anyone in the social services should know that that is terrific resource for locating appropriate services in your area. Second only to this is the availability low-cost of treatments for families who can't afford the thousands that are often required (and with our current economy there are more families in that category than ever before). Also there is a huge gap in available supervisory care (i.e. daycare) for ASD kids between 13 and 18, especially for lower functioning kids.

b. New opportunities.
In my opinion the greatest needs in this section are centered on being able to connect families that need it with the services available, but one of the biggest hurdles to that is the misinformation and lack of information that is made available from large (especially governmental) groups. In addition, treatments (be it therapeutical, nutritional, medical, financial or supportive) need to be more VISIBLE, accessible and affordable.

c. Research priorities.
Early treatment is the goal, so the priority here needs to be visibility and accessibility- How can we ultimately connect more families with the services that they need.

Respondent 0054

a. Gaps and underrepresented research areas.
Don't know.

b. New opportunities.
Get a job training program for adolescents on the spectrum and young adult

c. Research priorities.
don't allow Stephen Shore to serve on the IACC and don't allow him and John Robison to review research for publically funded grants.

Respondent 0055

a. Gaps and underrepresented research areas.
towns, counties and states do not share effective models of service delivery, or know where to look outside their own systems. At one extreme you have complete institutionalization /company store services run by agencies that are keen to maintain their operating revenue, at the other money follows the person driven services that empower the individual but may not provide guidance. What works? how to tell the people who implement delivery of services?

b. New opportunities.
Needs- Surging demographic/living longer, old service delivery methods will be financially unsustainable. Applied research in to best practices, and then initiation of financial incentives to follow them medical need - what is the general health care status of people with ASD? What ails them, what is obscured by our focus on their "condition"?

c. Research priorities.
Look at the population themselves, not so much the parents of younger children, but the adults with the disability as well. Ask them, if they can respond, help to find them if they are in congregate care settings they have lived in without being diagnosed.

Respondent 0059

a. Gaps and underrepresented research areas.
The numbers of those that are being hurt by vaccine goes up - there is going to have to be answers. To get those answers Tom Insel needs to resign since he is connected to the vaccine industry. I expect the federal government and this agency to do your best in not hindering the citizens of this great country in the pursuit their happiness. Giving them autoimmune diseases stops dreams, and their pursuit of happiness.

b. New opportunities.
*All doctors need to know how to treat ASD not as a mental disorder but a medical disorder. *Families that have severe disabled child need to be able to have a safe place for them. *Asperger's and PDD-NOS, needs very good support systems, SSI should be there to catch them in case they fall, and be there while they are struggling to make it. Right now even that is being grudgingly and slowly offered, most times refused. *Tom Insel and his brothers never had to worry about sheltered workshops, they got to follow their dreams and interest. Neither did any of them have to worry that their drivers license would be taken from them if the neurologist was slow about getting his approval to the transportation department. Neither do they have to take a pill twice a day to keep from having seizures, or be on a special diet to help with their seizures or health. Neither do they have to worry about money to pay for a neurologist since Richard sold off his share of the hib for 4 million.

c. Research priorities.
*Stop wasting resources and do an HONEST study that vaccines are the cause of the rise of autism. I have observed the cause and effect of vaccine injuries to three of my family members, I am just average - if it happened to me then it is happening to everybody else with autism. That would be 1 out of 150 or is it 1 out of 100 by now. In England it is reported to be 1 out of 66. * To train Medical doctors about the medical facts of autism. They need more information to be able to treat and to recognize potential vaccine injuries. Depakote for seizures is dangerous to autistic, yet many neurologists don't know it. It causes l-carnitine, and it would be nice to know if most autistic's l-carnitine levels are low to begin with? Just like Jett Travolta! Low carb diets should also be taught to physicians too. *Titers should be used more, *AND GET RID OF TOM INSEL.

Respondent 0063

a. Gaps and underrepresented research areas.
The government can not mandate this nor run it. What they CAN do is insure that there is support and monies available so the healthcare community will lead the charge in providing services. I live in Northwest Ohio. There is NO help in locating services. What we do find we have to drive at least 40 minutes to reach it.

Respondent 0074

a. Gaps and underrepresented research areas.
Good question. Where I live (Louisiana) there are NO publicly funded services. I have two graduated students doing ABA with my son, paid for out of pocket. All medical interventions paid for out of pocket.

Respondent 0075

a. Gaps and underrepresented research areas.
Services, to date, are usually based on misunderstood behavior, capabilities, and needs. Society and many businesses can benefit from, and pay well, highly specialized employees, with a drive to systematically produce accurate product, that fits well in its application. People living on the autism spectrum can often behave near normally and perform very well, IF they are valued in society for their uncommon capabilities and skills, treated with respect, and challenged appropriately. Consequently, per the Life Needs hierarchy, we need to promote better understanding and performance of the positive aspects of autism, whereupon the drain of secondary problems will fade. An un-frustrated, un-apprehensive, and vigorous person with rare skills can cope considerably better with life. This translates into significantly less services and external resources required, and the person will likely have their own resources to pay for what they need, fostering a more independent life.

b. New opportunities.
An un-frustrated, un-apprehensive, and vigorous person with specialized rare skills can usually cope considerably better with life than a person forced to emulate what he is not. Develop appropriate education requirements for highly specialized people. This means if they are able to advance themselves requiring them to go through what they don't need is wasteful. This also means, what they can't use, don't try to force them to use it. An un-frustrated, un-apprehensive, and vigorous person with specialized rare skills, can usually be able to care for themselves and contribute to our economy.

c. Research priorities.
The Medical Psychological Academic Community Claiming Concern With Autism can learn a great deal from the communicative adults who have been trying to inform them of their error for a minimum of 40 years. An un-frustrated, un-apprehensive, and vigorous person with specialized rare skills, can usually cope considerably better with life than a person forced to emulate what he is not. Referring to the hierarchy of Life Needs, (Refer to the works of Abraham Maslow) specifically fitted to autistic life, we find that training social skills is secondary to a positive Esteem-of-Self-and-Capability. i.e. A spartanly-brief statement, if you do not believe that yourself is useful-needed-wanted, there is little point trying to be or do what you can't. You turn defensively inward. Following the very name of autism. Conversely, if you know you are useful-needed-wanted, there is plenty of awareness and willingness to behave more normally.

Respondent 0077

a. Gaps and underrepresented research areas.
With the new health care initiative how will we make sure that any service options are effective and covered? How do we encourage independent or semi-independent autistic spectrum adults to seek access to these services?

b. New opportunities.
Research into the effectiveness of community groups run by persons on the autism spectrum by and for them, such as the Asperger Adults of Greater Washington (http://aagw.net This link exits the Interagency Autism Coordinating Committee Web site), with their issues.

c. Research priorities.
#1. Encouraging adults to take advantage of services.

Respondent 0095

a. Gaps and underrepresented research areas.
This is a huge problem. There needs to be a federally-run program in each State that is a clearinghouse for services, healthcare, respite, etc... Community Mental Health agencies are just not equipped to handle this.

b. New opportunities.
Look at some of the private and nonprofit groups.

Respondent 0102

a. Gaps and underrepresented research areas.
Again - it's the parents who have taken the lead on this, not the government agencies who should be helping these kids. So please direct parents to organizations like Generation Rescue, Talk About Curing Autism (TACA), Unlocking Autism, SafeMinds (Sensible Action For Ending Mercury-Induced Neurological Disorders), Autism One, the Autism Research Institute, and there are many more. These organizations were founded by parents and researchers who dare to challenge the status quo, and because they have, thousands and thousands of children have been saved from vaccine-induced autism - and some of those who were already injured by vaccines have recovered.

Respondent 0105

a. Gaps and underrepresented research areas.
The limited number of services available nowadays for persons with ASD, are largely ineffective, as the persons running them are not fully informed about ASD. Despite the plethora of research results gathered so far, there remains a huge gap between the research community and the rest of the population dealing with such persons on a daily basis (Hospitals, ER, doctors, nurses, educators, counselors, caregivers, psychologists, priests, police officers, lawyers, judges, etc.). IEPs who attempt to squeeze the child with autism to fit in, group speech therapies disregard the need for a one-to-one approach for many such children. Most of the population ignores the hidden strengths of persons with ASD, considering them as being somewhat aloof, within their bell shape glass; nothing could be further from the truth. After graduation from High School, there is virtual no support on hand and adults with autism struggle not only to survive but they also regress.

b. New opportunities.
If a special setting is not put in place and research results not put to use for the service of the autism community, then, sad to say, this research will be worthless for persons with ASD and their families. It would only serve to further the curriculum vitae of the researchers involved. Time is crucial and the key word in the pressing autism research. Another key word is Education of the population on what autism is about. Many family dramas, including suicide attempts are affecting adults with autism, as a result of wrong decision made by persons unaware of autism and lack of the lack of specialized and specific services. What is all the effort and money for school services worth, if afterwards an adult person with autism ends his life as a result of wrong evaluations, judges' decisions, police arrests, etc.

c. Research priorities.
It is not only the person with ASD that is in need of services, but also their family. The family in question is usually single-mother family, a father in denial, alienated or absent, as their autistic trait, prevents them from understanding or feeling any compassion for any person with ASD, even if that person is their own child, etc. More studies are needed to look closely at the family dramas, where the treatment, education, therapies and well-being of the person with ASD seriously deteriorate.

Respondent 0116

a. Gaps and underrepresented research areas.
Insurance companies should cover therapies that help children, including behavior therapy.

c. Research priorities.
Insurance companies should cover therapies that help children, including behavior therapy.

Respondent 0125

a. Gaps and underrepresented research areas.
I think the online resource guide available through Autism Speaks is pretty comprehensive and user-friendly. Rather than re-invent the wheel, the NIH and Medicare could urge service providers and state agencies to make sure their information is up to date in the database.

Respondent 0131

a. Gaps and underrepresented research areas.
There is a need for research in the area of surveillance of qualified professionals providing services to determine the background, training and credentials of individuals providing treatment to those with ASD and to determine the nature of the services that are currently being provided. What services are being delivered and by whom. There is a need for research that investigates the common practices in screening, assessment and treatment and how those practices are impacted by state and local interpretation of federal guidelines.

b. New opportunities.
Intervention research is not yet available to predict which specific intervention approaches or strategies work best with which individuals with ASD. No one approach is equally effective for all individuals with ASD, and not all individuals in outcome studies have benefited to the same degree. Larger group design treatment studies are needed to identify characteristics of individuals with ASD that predict response to treatment. For clinicians to determine whether an individual is benefiting from a particular treatment program or strategy, measurement of that individual's progress using systematic methods, such as in single-subject research design, is also recommended. . It will also be important to support the development of sensitive outcome measures that can be used for both single-subject and larger group designs.

c. Research priorities.
Research should be prioritized that characterizes current ASD diagnostic and service utilization patterns in community settings, examine the relationship between the likelihood of diagnosis and the services available for individuals with ASD, and that also evaluates the effectiveness of these services and intervention outcomes. The development of outcome measures and means of monitoring progress longitudinally should also be considered a high priority. ASHA believes that these priorities are necessary to accomplish in order to address the goal of determining the efficacy and effectiveness of various approaches to treatment and is therefore foundational to other research initiatives.

Respondent 0133

a. Gaps and underrepresented research areas.
The benefits of Early Intervention and the risks of "wait and see."

c. Research priorities.
Use parent information and wealth of knowledge as a jumping off point, not an aside. Gather all outcome studies for early identification. Look at good working models, ask the people who have to implement services and who receive them, NOT the researchers, and start from there. Much of ASD research is "top down" it needs to be "bottom up"

Respondent 0136

a. Gaps and underrepresented research areas.
The church. There are those who are well-acquainted with many of the issues surrounding this dilemma who have been praying and waiting patiently to assist.

Respondent 0141

a. Gaps and underrepresented research areas.
What I see missing is the involvement of people with ASD in researching efficacy of services. How will you know if a service is successful without asking the people it serves? For example, there may be services which appear to be successful but aren't really meeting the needs of the people. Instead of assuming what Autistic people need and want, ask them. That's the most effective way to begin.

Respondent 0148

a. Gaps and underrepresented research areas.
Services need to be more available to the broadest range of populations. As stated in answers to Questions 1-4 above, early screening and treatment approaches need to be more firmly established. Then, the critical personnel across all professional and paraprofessional occupations who are most in contact with families in every type of locale should be trained in these methods. The training models should be assessed for their effectiveness as measured by greater identification of and intervention with at risk infants and toddlers.

b. New opportunities.
Not enough opportunities presently as stated just above. However, more and more disciplines are aware and eager to better discern non-medical symptoms that threaten young children. Clinical pilot studies seem there for any funded competent investigator.

c. Research priorities.
Stated just above

Respondent 0149

a. Gaps and underrepresented research areas.
I didn't see anything mentioned here about the need for family support. My sister is a single mother (widow) raising a disabled child alone. How many families (statistically) of children with autism are single parents? Where do they turn for assistance such as respite care? What kind of respite care is available? (not much in her county in New Jersey, and what is available is a stay at a hotel with a stranger - not a great place to put a child who cannot communicate). What states, and what counties within that state offer special services? Has this ever been studied and compared?

b. New opportunities.
How about training people to deal more effectively with ASD? People like police, postal workers, EMT workers, nurses, doctors, dentists? Try finding an orthodontist willing to treat a child with ASD. We certainly haven't been able to find one. How about training ER doctors? One ER doctor told us not to worry about my nephew's cracked tooth because children with ASD don't feel pain the way "we" do. How crazy was that? Don't they teach doctors anything in medical school about ASD and how to treat patients who have ASD and who cannot effectively communicate? We had to train my nephew to "blow out the birthday candles" in order for the doctor to listen to his lungs. And I don't have a medical degree. Give me a break. The doctors, nurses, dentists, etc...are not being trained how to deal with ASD patients. I don't see that listed in Section V.

Respondent 0151

a. Gaps and underrepresented research areas.
The how to is not well published. How do I get my children registered for TEACH services? Why does it take so long? How do I get my children registered to receive CAP services? Why does it take so long (if ever)? How do you assist families to cope with the crushing blow that their child or children have ASD? How do you support families to deal with the ongoing daily struggles?

b. New opportunities.
Better funding for services such that all those in need have access and quickly. This should be considered for inclusion in the no child left behind program.

c. Research priorities.
Improve access to psychological services, provide a better consolidation of all the possible treatments, whether proven yet or not (so noted), hold insurance companies accountable for treatments that are proving effective (with input from the Doctor if necessary that it is effective and required).

Respondent 0153

a. Gaps and underrepresented research areas.
Better communicate the effects and experience of ultrasound in the womb, and its possible link to autism.

b. New opportunities.
Look to produce and promulgate information on a possible link between ultrasound events and ASD.

c. Research priorities.
More highly prioritize publicizing a possible link between ultrasound events and PDD.

Respondent 0157

a. Gaps and underrepresented research areas.
A national database of providers certified in treatment of autism would be helpful. A certification/accreditation program would be valuable. Providers and programs could then demonstrate that they have appropriate skills to assess, diagnosis, and treat pervasive developmental disorders.

Respondent 0161

a. Gaps and underrepresented research areas.
Don't research where to get services. Research how in the hell I'm supposed to PAY for these services. Services are useless if insurance companies aren't required to cover them.

Respondent 0168

a. Gaps and underrepresented research areas.
There needs to be a focus on how the service system can be simplified and coordinated in a more manageable way. So, for research purposes, get feedback from people who are living in different models now. For example, the state of NC seems to have a more "friendly" and accessible state-wide autism service model. Is this true and does this reduce the stress on families and provide more opportunities for people with autism? If so, there should be a model suggested for states to adapt.

b. New opportunities.
Help people find the resources on what works without each parent group having to recreate it over and over.

c. Research priorities.
The "State of the States" should be a living web-based resource accessible from the IACC website that can help people understand the service system and resources in their state and local areas.

Respondent 0173

c. Research priorities.
Where are the supports for those on the spectrum that are able to undertake post-secondary academic education?

Respondent 0176

a. Gaps and underrepresented research areas.
As the parent of a child with ASD, I state with profound sadness that few services actually exist for my son, and those that would truly help him, I cannot afford. Although my experience with Early Intervention was outstanding, receiving family-centered, home-based therapies 3X weekly, the services my son has received through the school system (which my son entered at age 3 when he was no longer eligible for Early Intervention due to the cut-off age for services in my state) have been far less than adequate. Moreover, I am convinced that the services my son receives at school are ONLY designed to help him be successful in the school setting, NOT designed to help him become successful as a functional, independent member of society. School does not appear to be designed or intended for therapeutic rehabilitation including functional communication skills of increasing sophistication. Tragically, and despite sustained effort to the contrary, I have watched his social skills decrease.

b. New opportunities.
Children with ASD have intense social-cognitive deficits that make the most seemingly benign social settings very complex even for (and perhaps especially for) children who can speak. Their invisible disability presents tremendous disadvantage when entering any social situation, and especially when entering situations that are new, unfamiliar, or very complex. Every movement from one area to another can be counted as a transition, even when the people are familiar (such as reading books in a classroom, then putting them away to play a game). Every transition requires a battery of complex, coordinated skills of varying difficulty for children with ASD. Structure and visual schedules help, but they have their limitations as a child ages. Research regarding decoding the complexities of social environments, whether a grocery store, a classroom, an airport, or a wedding, will uncover best-practices for helping children with ASD develop self-help skills to last a lifetime.

c. Research priorities.
First, research the difficulties experienced by children, youth and adults with ASD pertaining to social situations. Deeply understand the nature of how their brains interpret and categorize such situations. Know how and why transitions appear to be confusing and/or confrontational for them. Second, assist them in understanding and interpreting choices in a situation. Teach them to ask for help and/or how to understand and advocate for their needs. Develop and use best-practices for assisting them in decoding social situations without heavy reliance on visual schedules or prior exposure. Help them generalize a set of skills that uses decoding to gain independence and social success in all social settings. Arrange the context of this teaching and understanding to be inculcated daily to students with ASD. Third, offer parents the ongoing assistance of a professional who will come to the home and assist when the child is "stuck" and needs assistance to move forward.

Respondent 0181

a. Gaps and underrepresented research areas.
V. Where Can I Turn for Services? Again, we highly recommend consulting Educating Children with Autism, mentioned above, and strongly support the IACC's lifespan approach on evidence based practices. We also recommend using an abbreviated version of the Autism Speaks 100 Day Kit found in English/Spanish at http://www.autismspeaks.org/community/family_services/100_day_kit.php This link exits the Interagency Autism Coordinating Committee Web site. At 81 pages, we think this is too overwhelming for parents of newly diagnosed children.

Respondent 0184

a. Gaps and underrepresented research areas.
The assumption behind the IACC Subcommittee hearing in St. Charles, IL on July 23 seemed to be that services included only treatments that would specifically aid those on the autism spectrum. In my experience working with doctors, parents, and others dealing with ASD, I am struck by how much help parents need negotiating the confusing welter of regulations, authorities, and rules in order to try to get help. Thus, I think a desideratum of the first order is to have professional advocates (not necessarily attorneys), who have undergone training to know about how to access services for families affected with ASD. It is hard enough to manage the services when you know what you are doing. If you are suddenly "hit" with news of your child's affliction, you can be overwhelmed. It would be of great help if the IACC would support ombudsman or advocate training (education, medical, insurance, legal) to aid families when they have the daunting task of facing confusing systems.

Respondent 0187

a. Gaps and underrepresented research areas.
For nonverbal ASDs there are very few services available, other than generalized respite care and therapies which are tailored to higher functioning ASDs. Again, research on nonverbal ASDs is needed, to develop standardized testing to assess cognitive development and to adapt treatments and therapies to address the needs of this understudied group. Not meaning any disrespect, this question is in some sense 'irrelevant' because without any definitive research to measure and define the nonverbal ASD individual, services other than basic care are not specific enough to help the individual or their family and caregivers, therapists and doctors.

b. New opportunities.
Research and develop standardized testing to measure cognition in nonverbal autistics. Research and develop therapies that address the functioning and challenges of nonverbal autistics so that effective treatments and interventions and services can be provided. Please include more nonverbal subjects in your research. No research has been done on this group. This is a critical area that is missing from the autism research 'road map'.

c. Research priorities.
Prioritizing the research objective in section V: Include nonverbal autistics in research, as no one in this group is included at this time. Do research to find ways to measure cognition in nonverbal autistics. Do research to develop therapies that are needs-specific to nonverbal autistics. In this way real services and programs can be developed.

Respondent 0190

a. Gaps and underrepresented research areas.
Advancing research on models for state, regional and local interagency collaboration should be supported and valued as a means to further the efforts of improved coordination of services that support individuals with ASD and their families. We applaud the focus on State of the States, as we have much to learn from one another. The result of shared expertise and knowledge among and between agencies allows for a more comprehensive approach when assisting families who are navigating multiple systems that are the gate keepers for services, funding, knowledge, and access to the community. To this end, Ohio, has convened an Interagency Work Group on Autism comprised of reps from the Gov.'s office and multiple state agencies, to improve cross system communication, sharing of information, and work to assure that Ohio's plan to serve individuals with autism is effective, broad-based, and an integral part of the state's efforts for all individuals with developmental disabilities.

b. New opportunities.
Ohio is engaged in multiple efforts that support IACC's proposed research on State of the States. OCALI, in partnership with NATTAP through ASA, and NASDSE, initiated the national Community of Practice in ASD which provides opportunities for stakeholders of all system levels to contribute to national issues, bringing together a powerful and informed voice to affect policy and programs.--- Sponsored in part by NASDSE, NATTAP, ASA, and the National Professional Development Center for ASD, OCALI will host the 3rd annual State Team Forum in conjunction with their national conference. This forum brings together state-level, cross-agency representatives to conduct an individual and collective state review of current policy, services and supports. This informal assessment surfaces common issues that guides the work of the state teams.--- Ohio is poised to continue leading this high-quality, evidence based, and cost effective annual state of the state review through this ongoing work

Respondent 0194

a. Gaps and underrepresented research areas.
It is crucial to identify barriers to the adoption and implementation of evidence based services at the community-level, and potential ways to address them. For example, exploring disparities in access and utilization of services by inner city minorities will help us understand how local differences translate into the quality of care received and the outcomes for children, adults, and their families affected by autism. Just as we can learn from health disparities in minority or underserved populations in the US, similar benefits can be gleaned from international development efforts. In addition to exploring how differences in capacity and health systems impact practice and outcome, the inclusion of cultural factors can inform how best to help similar minority and underserved groups in the United States.

b. New opportunities.
Multi-site clinical and research networks with access to large samples of well-characterized patients with ASD will allow rigorous comparison of the effectiveness of different treatment strategies. These networks can also serve as platforms for dissemination of scientific insight, practice guidelines, and empirically-derived treatment strategies (i.e. clinical trials, etc.). It is important for the NIH to invest in infrastructure to leverage the existing networks for comparative effectiveness studies and dissemination of best practices resulting from these efforts. Most of the autism clinical and research networks mentioned above involve academic hospitals or medical centers. While they play an important role in research and knowledge dissemination, they are unlikely to meet all the service-related needs of the community. For instance, rural communities require more local expertise and access. Research is needed to develop community-based, cost-effective solutions.

c. Research priorities.
Outcomes of transition services for young adults with ASD are very poor and under-researched. Howe et al (2004) surveyed 68 adults with autism with IQ greater than 50, and found that the majority had outcomes that were rated as poor or very poor. Research is needed to better understand which transition services lead to the best outcomes.

Respondent 0199

a. Gaps and underrepresented research areas.
There are very few programs for nonspeaking autistics in our community.

b. New opportunities.
Proper placement in adult programs after age 21 and the school is no longer providing services

Respondent 0200

a. Gaps and underrepresented research areas.
Speech therapy does not work. We tried and so did the therapist and so did my grandson. We need more.

Respondent 0202

a. Gaps and underrepresented research areas.
THERE ARE NO SERVICES TO HELP MY SON IN KY, he has dyspraxia (no one has a clue what to do)

Respondent 0210

a. Gaps and underrepresented research areas.
Research is needed as to how to perform effective transition planning (along with the research as to the services required post-secondary education).

c. Research priorities.
There is a crisis in terms of adults on the spectrum who are not receiving services. We need research on the kinds of services adults need and their effectiveness in enabling them to reach independence. A specific research project as relates to adults should be funded. State by State assessment MUST include adult services.

Respondent 0213

a. Gaps and underrepresented research areas.
Nonverbal and low-communicating people with autism should be included in the Strategic Plan for Autism Spectrum Disorder Research. There are few, if any, interventions that work for these individuals and currently there is no research to develop them. We need research to develop successful interventions for this group. In spite of lack of communication being their most severe deficit, there is currently no research to develop communication interventions. We need this kind of research now.

b. New opportunities.
This population is increasing in size and there have been advances in available technologies to implement.

c. Research priorities.
Nonverbal and low-communicating people with autism should be included in the Strategic Plan for Autism Spectrum Disorder Research

Respondent 0222

a. Gaps and underrepresented research areas.
Information about services is almost non existent in rural areas.

b. New opportunities.
More research into how to provide services across the board in both urban and rural areas. And provide services to all individuals equally.

Respondent 0224

a. Gaps and underrepresented research areas.
There aren't enough research projects requesting low-functioning participants. My son has been denied participation in every trial I have tried to get him in because of this. How can you say you're researching autism, when you exclude 20% of autistics? The nonverbal don't need interventions, medicine, and hope? They need more help than anyone, yet there is nothing for them.

b. New opportunities.
Develop projects designed to teach the nonverbal leisure skills.

c. Research priorities.
Boredom is the leading cause of why nonverbal children are lost and hurt. They have no way to entertain themselves. Saving lives should be a priority.

Respondent 0235

a. Gaps and underrepresented research areas.
Nonverbal and low-communicating autistic people have few places to turn for all types of services. Especially if they are older than 12 yrs or GASP 18!

b. New opportunities.
What services would help teenagers and young adults who are nonverbal and low-communicating?

c. Research priorities.
What is available for Adult services for nonverbal and low-communicating?

Respondent 0236

a. Gaps and underrepresented research areas.
This is a huge area of need!! we have inadequate services beginning with diagnosis. All early intervention should include a family approach, supporting the family, teaching families how to work with their children, this would aid in acceptance. Until our families are supported properly they will continue to be vulnerable to the quacks who are earning thousands and thousands off of our families! It is very difficult to accept that your child is autistic for life if you are not getting the support and services you need!

b. New opportunities.
We need a demographic study... who is providing the best services, where, etc. models of best practices. a lifespan approach!

c. Research priorities.
At this point the least amount of research happening is for the adult population. start with adults and work backwards! Once you have a service delivery model that provides good adult services you are bound to also be meeting the needs of children!

Respondent 0240

a. Gaps and underrepresented research areas.
What happens after high school. We need more programs to help socialize adults.

Respondent 0244

a. Gaps and underrepresented research areas.
No additional comments...

b. New opportunities.
Identify an autism coordinator from each area or State that can navigate insurance payers and identify services that are available to the recipient with ASD. Attach a link to each state for this purpose...if possible.

c. Research priorities.
No additional comments...

Respondent 0246

a. Gaps and underrepresented research areas.
individuals, privately paid, as parents are able to find them and pay for them is the current mode of practice schools do not address these schools largely do not know how to handle kids with autism, and abuse them!

b. New opportunities.
Have clinics set up, with standards of care Paid for by insurance, or with government assistance, so all can be treated

c. Research priorities.
Early treatment produce best results If not treated, there is a tsunami of autism hitting our country, with no slowdown in sight... which will bankrupt all services, all of society

Respondent 0251

a. Gaps and underrepresented research areas.
there is no central information source.

b. New opportunities.
expanded awareness

c. Research priorities.
finding an impartial source of information

Respondent 0259

a. Gaps and underrepresented research areas.
We need to get psychiatrists who understand medicating the Autistic child on board with insurance companies. I called every psychiatrist in a 45 mile radius on our insurance plan and none knew how to medicate for self-injurious behaviors. Pretty sad. Parents must have better access to those who do know how to help our kids.

Respondent 0262

c. Research priorities.
These are all noble goals; I hope some success can be achieved in provision of state services in time to help my child.

Respondent 0268

a. Gaps and underrepresented research areas.
I would turn to those who have experienced what I have talked about on some level. People like myself who experienced and continually questioned the phenomena along with some individuals with Asperger's syndrome who may be able to give needed input. I would also engage scientists with some understanding of quantum mechanics who have understanding of nonlinear thought, the subconscious and universal field of thought.

b. New opportunities.
Right now there aren't any services that adequately address the needs of these individuals. Until we evolve our current thinking, strategies to meet the needs of these unique souls will remain rudimentary.

c. Research priorities.
CALL ME: [redacted personally identifying information] I WILL SHOW YOU SOME VIDEOS! I WILL ANSWER YOUR QUESTIONS! I WILL DO WHATEVER I CAN TO ASSIST!

Respondent 0269

c. Research priorities.
We live in PA and there is no quality respite available.

Respondent 0270

a. Gaps and underrepresented research areas.
Please consider allocating funds for research for people with severe autism who do are nonverbal. This subset is the most vulnerable group and in addition requires the most care. Please be equitable in your quest to find a cure for this dreaded affliction.

Respondent 0276

a. Gaps and underrepresented research areas.
Again, much more research is needed about individuals with limited or no language skills and those with more challenging behaviors.

Respondent 0279

a. Gaps and underrepresented research areas.
Please start including nonverbal and low-communicating people in research NOW! This represents about 50% of the autism community. My daughter is "High functioning" because she speaks. However, she does not COMMUNICATE beyond the rote questions and answers she has been taught. Once they get past that she reverts to either repeating the same questions or says "I like this day" or "How are you doing?". She cannot build relationships, get good health care, shop appropriately, etc, etc, etc. Research into what really works for these individuals, and then funding to get the appropriate care out to them is needed NOW.

b. New opportunities.
There is a very large population of young adults who were before the current educational advances and are struggling. They are too old for the programs which are helpful to the younger generation, but they can learn if we could get appropriate programs set up for them. The funding to pay for the programs is available to many of us through Home Based Medicaid Waiver So - please extend communication/speech research into the adult world to see if we can't save this group that is floundering. In the long run money should be saved if we could get these adults able to function in the working world and become contributing members of society. Thank you.

Respondent 0281

a. Gaps and underrepresented research areas.
It is important for parents and professional to know that there are many therapies that can help individuals that are nonverbal. Communication is foundational. If someone has no way to communicate then access to opportunities are extremely limited. It is important that methods that provide access to technology and AAC devices like Facilitated Communication be made available to everyone. It is very important that people who are nonverbal have the opportunity to try all kinds of technology and AAC devices. However, there is so much focus on becoming verbal that kids who are nonverbal are left behind...they then resort to behaviors to get their needs met. Technology training and AAC is vital and more professionals and parents need training.

b. New opportunities.
Looking at therapies like Facilitated Communication, Masgutova Method, Neurologic Music Therapy, The HANDLE approach, Feldenkrais, craniosacral therapy. Parents need to know that these therapies are available and can impact the success and access to communication for their nonverbal children.

c. Research priorities.
Because Communication is the foundation for all other things. A priority needs to be in developing alternative communication access for kids who are nonverbal. While being verbal is a goal....one should not remain silent while these skills are being developed. Parents of nonverbal kids often feel that there is little to no hope for their children because such an emphasis is placed on being verbal. We need change the emphasis to the development of communication skills in general...no matter its form. No child should arrive at age 3 or 4 without an AAC device if needed. Waiting, hoping and wanting speech is all fine and good...but communication is more important that verbal speech...it allows access to full inclusion in education.

Respondent 0294

a. Gaps and underrepresented research areas.
The NIMH should start working on this NOW.

b. New opportunities.
Contact the families of autistic who are submitting responses to this questionnaire/ submission form. They'll have plenty to say.

c. Research priorities.
Put this need into this year's research priorities.

Respondent 0297

a. Gaps and underrepresented research areas.
Until now there has not been a unified effort to advocate for those who are nonverbal or low-communicating. So now is a great time to begin our efforts to advocate for this group. Sadly, in spite of the huge gains that have been made in the past decade, our kids have not been benefited and there are still almost no interventions that work for our kids and no research to better understand the nonverbal and low-communicating population, their cognitive abilities, genetic characteristics, educational needs or to develop successful interventions. Perhaps most importantly this population needs communication interventions and at present there is no research being done in this area.

b. New opportunities.
Until now there has not been a unified effort to advocate for those who are nonverbal or low-communicating. So now is a great time to begin our efforts to advocate for this group. Sadly, in spite of the huge gains that have been made in the past decade, our kids have not been benefited and there are still almost no interventions that work for our kids and no research to better understand the nonverbal and low-communicating population, their cognitive abilities, genetic characteristics, educational needs or to develop successful interventions. Perhaps most importantly this population needs communication interventions and at present there is no research being done in this area.

c. Research priorities.
Until now there has not been a unified effort to advocate for those who are nonverbal or low-communicating. So now is a great time to begin our efforts to advocate for this group. Sadly, in spite of the huge gains that have been made in the past decade, our kids have not been benefited and there are still almost no interventions that work for our kids and no research to better understand the nonverbal and low-communicating population, their cognitive abilities, genetic characteristics, educational needs or to develop successful interventions. Perhaps most importantly this population needs communication interventions and at present there is no research being done in this area.

Respondent 0298

a. Gaps and underrepresented research areas.
Adult services will be needed for low-functioning nonverbal children as they reach adulthood.

Respondent 0306

a. Gaps and underrepresented research areas.
You need to spread far and wide that DAN doc's are making great headway in helping these kids. Also need insurance companies required to pay for treatment, and facilities around the country offering ABA.

Respondent 0307

a. Gaps and underrepresented research areas.
Services? What services? The only diagnosis that health insurance companies can deny services for is autism. They have to provide coverage for cancer, heart disease, schizophrenia as well as almost every psychiatric condition under the sun. But my husband's health policy clearly stated in "conditions not covered" section that they do not cover any treatment related to a diagnosis of autism. HOW CAN THAT BE ALLOWED TO HAPPEN. And don't tell me that it is the responsibility of the schools - my child has a medical diagnosis (which you think is a psychiatric disorder) and the school is not able to treat my child. Should we have children with cancer or bipolar or schizophrenia be treated at schools?

c. Research priorities.
Prove that ABA and other biomedical treatments work and require ALL insurance companies to pay for services related to autism. The surgeon general has already come out with a statement that ABA is an effective treatment in autistic individuals. Can't be that hard to do.

Respondent 0309

a. Gaps and underrepresented research areas.
WHY ARE SHORT TERM OBJECTIVES over 3-5 years??? We need services now! Our children are diagnosed NOW!

b. New opportunities.
School districts need to look into better models. There are too many children on the Autism Spectrum to continue to use the same methods!

c. Research priorities.
BEHAVIOR, BEHAVIOR, BEHAVIOR!!!!!!!

Respondent 0312

a. Gaps and underrepresented research areas.
Where is Autism Speaks?

b. New opportunities.
Where are experts in medical problems- Why are there SO many psychiatrists? Why this ancient worldview as autism as a form of mental illness, rather than the complex disease it truly is. How to get help for kids w/ compromised immune problems and severe allergies

c. Research priorities.
IACC really needs input from the autism community here, not only Tom Insel's colleagues, but organizations that represent thousands of families who answer these questions every day. Include DAN!, NAA, TACA, Autism Speaks

Respondent 0318

a. Gaps and underrepresented research areas.
In your research opportunities (bullet point 3) it states you are looking for cost effectiveness studies of interventions and services for people with ASD across the lifespan. I propose researching RDI as the average cost of a year of RDI cost approximately 6,500.00- 8,000.00 per year.

b. New opportunities.
In response to this statement: "Research can also define the cost-effectiveness of evidence based practices and thereby provide the data needed by various payers and policymakers." I would like to comment that RDI is not only cost effective but also evidence based. RDI is based on developmental research.

c. Research priorities.
Prioritize bullet point number 1 under long term objectives. Test both the efficacy and cost effectiveness of the RDI program within this study.

Respondent 0321

a. Gaps and underrepresented research areas.
Urgent review of present Vaccine Court policies and procedures to regain the "spirit" in which the Vaccine Court was first created...which was to make compensation for a vaccine injured child...quickly and fairly...certainly not the "adversarial" court that exists today...where USD Dept of Justice lawyers and all the powerful influence and resources they have...are opposed by families whose finances are, in the vast majority of cases...destroyed caring for their vaccine injured child.

Respondent 0322

a. Gaps and underrepresented research areas.
SINCE THE DAMAGE IS THE RESULT OF FEDERALLY APPROVED VACCINES, FULL FEDERAL FUNDING OF STATE PROGRAMS, INCLUDING SCHOOL DISTRICT SPECIAL EDUCATION FUNDING FOR SPECIAL AUTISM EDUCATION PROGRAMS, SHOULD BE REQUIRED.

b. New opportunities.
SINCE THE DAMAGE IS THE RESULT OF FEDERALLY APPROVED VACCINES, FULL FEDERAL FUNDING OF STATE PROGRAMS, INCLUDING SCHOOL DISTRICT SPECIAL EDUCATION FUNDING FOR SPECIAL AUTISM EDUCATION PROGRAMS, SHOULD BE REQUIRED.

c. Research priorities.
SINCE THE DAMAGE IS THE RESULT OF FEDERALLY APPROVED VACCINES, FULL FEDERAL FUNDING OF STATE PROGRAMS, INCLUDING SCHOOL DISTRICT SPECIAL EDUCATION FUNDING FOR SPECIAL AUTISM EDUCATION PROGRAMS, SHOULD BE REQUIRED.

Respondent 0325

a. Gaps and underrepresented research areas.
See previous

b. New opportunities.
See previous

c. Research priorities.
See previous

Respondent 0333

a. Gaps and underrepresented research areas.
You tell me. Seriously, I need to know.

Respondent 0337

a. Gaps and underrepresented research areas.
- Why do some parents prefer to ignore their children's ASD diagnosis by not looking for any therapy? - How can current cognitive therapies be implemented throughout school districts in a way that makes economic sense to them? - What are the outcomes of therapies that include the parents compared to those that require very little of their involvement? - What's the effectiveness of providing psychological support to parents of ASDs?

Respondent 0340

a. Gaps and underrepresented research areas.
The financial impact of autism on the family is underrepresented.

b. New opportunities.
We should perform a study on the financial impact on families and how it could be alleviated.

c. Research priorities.
The long-term objective for "four evidence based services" should be replaced with "those services most highly endorsed by parents and caregivers."

Respondent 0345

a. Gaps and underrepresented research areas.
- We parents need more services for our children - respite care and adult services! - money is needed for job training and adult housing (safe).

Respondent 0347

a. Gaps and underrepresented research areas.
Don't even get me started on this topic. There are so few people and groups who want to work with the nonverbal autistic it isn't even funny. Many organizations and schools will work with special needs individuals, but as soon as you tell them that your child is nonverbal...you are dropped from consideration. Do not forget the nonverbal. Find services who no only want to work with autistic individuals but the nonverbal ones too.

Respondent 0353

a. Gaps and underrepresented research areas.
Physicians who medically treat autism, allowing children to make the most use of their educational and other therapies and have the most chance of social and communication improvements and eventual gainful employment.

Respondent 0356

a. Gaps and underrepresented research areas.
Developing solid information for families so we can compare one area to another. We live in a mobile society. It is a real conundrum for families if they are offered an opportunity in another state. There is no document to compare the services. Being able to analyze what services are where could help develop better services.

Respondent 0360

a. Gaps and underrepresented research areas.
Certainly not to the FDA, CDC or AARP! Only those brave doctors who are following the DAN treatment protocol and RECOVERING children are truly serving families living with autism

b. New opportunities.
Listen to the DAN doctors. Follow their lead and see that autism truly is treatable.

c. Research priorities.
FUND the vaccine research that was originally voted for!

Respondent 0363

a. Gaps and underrepresented research areas.
We should be able to turn to our insurance companies! In every state. This committee should be pushing for health coverage for all affected with Autism. Research how many families are bankrupt and unable to access the proven help that all children need and deserve.

Respondent 0364

a. Gaps and underrepresented research areas.
Biomedical services that offered now should receive much more representation.

Respondent 0366

a. Gaps and underrepresented research areas.
Parents should first turn to the AAP to provide standards that include testing for food allergies and intolerances, candida, clostridia, vitamin deficiencies, mineral deficiancies, and heavy metals. The AAP has failed several generations of children in this regard and the insurance companies are profiting from it. It should be considered one of the major sins made in the modern world.

b. New opportunities.
Parents should first turn to the AAP to provide standards that include testing for food allergies and intolerances, candida, clostridia, vitamin deficiencies, mineral deficiancies, and heavy metals. The AAP has failed several generations of children in this regard and the insurance companies are profiting from it. It should be considered one of the major sins made in the modern world.

c. Research priorities.
Parents should first turn to the AAP to provide standards that include testing for food allergies and intolerances, candida, clostridia, vitamin deficiencies, mineral deficiencies, and heavy metals. The AAP has failed several generations of children in this regard and the insurance companies are profiting from it. It should be considered one of the major sins made in the modern world.

Respondent 0368

a. Gaps and underrepresented research areas.
Often the problem here is not finding services or treatments, but paying for them. We have spent hundreds of thousands of dollars out of our own pockets on our son. None of the treatments we have tried have been covered by insurance. .

c. Research priorities.
However, it might be useful to research what kinds of services are available in different parts of the country -- and how much they cost. It would be useful to research possible ways to pay for services for autistic children and adults. It would be useful to research how long the waiting lists are and develop ways to reduce waiting time.

Respondent 0374

a. Gaps and underrepresented research areas.
I request that the IACC continue to highlight the crucial need for more research into services (as noted in Section V) and into how we can enable individuals on the autism spectrum to be educated in and to live in the community (as noted in Section VI).

Respondent 0375

a. Gaps and underrepresented research areas.
We need more research for Autism because the sooner you get to these Children they will get the help they need. I know this because my son was able to learn words 6,000 words at age 25 on a Lightwriter and understood what they meant. He is a different Person since he's been able to communicate. He needed research and programs that believed he was capable of being more than 2 year old. Just because they can't talk also doesn't mean they are incapable of feeling like every other person in the United States do. Parents are not educators But autism throws them into this title. We need help! My son has learned something new every day since he's gotten Lightwriter so why can't researchers help people that don't have a voice. Children as well as adults can learn if given the chance.

b. New opportunities.
The need for better understanding how to train children with no speech that actually works would be a big help to advance any person with autism at any age. What will work? There are so limited services for autism in our area that mostly it has been my job. In my mind I've got Jim pretty far on my own so It would be so nice to have help to bring my son so much farther than he's already come.

c. Research priorities.
They need to believe that this can help a nonverbal person. If you do nothing Now what will be the alternative down the road? With so many new cases being brought into this world, now is the time to do research so there won't be near as many nonverbal adults left to fend for their selves. That terrifies me. Not only for my son but for every person who is nonverbal out there. Oh I also believe we could use more parent input into what they think that can work. I want to go on and be one of the ones that can say I helped my son live the best life he could and work with people like him.

Respondent 0376

a. Gaps and underrepresented research areas.
Well, don't turn to Autism Speaks for any help, they suck the money out of communities.

Respondent 0379

a. Gaps and underrepresented research areas.
The vaccinated/unvaccinated study.

b. New opportunities.
The vaccinated/unvaccinated study.

c. Research priorities.
The vaccinated/unvaccinated study.

Respondent 0385

a. Gaps and underrepresented research areas.
Agencies need to work together. There is no 'one size fits all treatment' for kids. Some ABA aspects may be necessary to help a child succeed in a classroom environment, but there are quality of life aspects of RDI or DIR that are more important. Parents hope they pick the best treatment option for their child and then have to switch if it's not the right fit. Agencies need to meet the child and help determine the best approach or perhaps a multitude of approaches. Additionally, the minimum state requirements for senior and line therapists are woefully inadequate. They often do not require them to work specifically with kids and speaking from first hand experience, I have had Senior therapists in my home at $50 per hour whose knowledge of ASD was not even close to that of myself or wife. It's a disservice to the families. Fortunately, there are also many excellent therapists out there. Just not enough of them.

b. New opportunities.
More funding needs to be put towards Relationship Development Intervention (RDI) as a treatment option. Especially for individuals with so-called 'high functioning ASD' though that is a misnomer as often kids with good verbal skills are labeled high-functioning, though they can have many challenges well beyond the ability to talk.

Respondent 0388

a. Gaps and underrepresented research areas.
Better coordination of services and informing parents of the available services and how to obtain them. Care Coordination!

Respondent 0392

a. Gaps and underrepresented research areas.
As a divorced and thus single parent of a nonverbal or lower functioning autistic daughter, my son's and my life has revolved around taking care of her and ensuring she is cared for, a daunting task without outside assistance. She is 15 now and there are no after-school care programs for her. I have been forced to work part-time for several years in order to care for her after school. The Medicaid waiver is not useful in that I have had to locate helpers myself. They aren't always reliable nor know about the complexity involved in helping an autistic individuals. Often they simply expect to just sit and have little interaction with my child. Programs for the less communicative and nonverbal or truly autistic need to be funded and available. My daughter has a right to be part of the community and be amongst other children/young adults, not isolated in the home a lot or kept by me, her 54-yr old mom who, by the way, has no savings or retirement now!

b. New opportunities.
Recreational and or day care programs for special needs children would be useful regionally. The Medicaid waiver providers are not responsive to the needs of the child or the parent in my experiences with them in Louisiana, Arkansas or West Virginia. It took me 2 yrs to get the Medicaid waiver approved even. I feel that an autistic nonverbal child such as my daughter of 15 would be better served in a small structured environment at day care type centers or programs in communities. You see elderly adult day care centers, drug abuse recovery centers, Alzheimer's centers, why not Autism centers since it is supposedly much more prevalent today and many would benefit. Most areas have very little services available period. You are really at a loss if you don't live in a semi-urban area.

c. Research priorities.
Training of caregivers or providers of services to autistic individuals who are considered Lower functioning on the autism spectrum, such as my daughter, should be addressed. According to the Autism Society of America, most individuals with autism DO function at a lower level, or have lower IQs and the higher functioning autistic individuals such as those with Aspberger's are not as common, yet seemingly there are more programs and services available to the more communicative autistic individuals. As an enlightened society, we need to really address the needs and best interests for those who cannot communicate their needs. Government programs should be funded for helping these individuals.

Respondent 0396

a. Gaps and underrepresented research areas.
Right now family have very few places to turn. Practitioners who work with children often do not feel competent to serve this population. There is little within the big agencies other than ABA. Family have no where to turn if they wish to have a choice of approaches.

b. New opportunities.
Education of the therapeutic community about the variety of approaches that exist. Pediatricians need help as they are often gatekeepers. They cannot make this diagnosis in a 15 minute visit. Developmental psychologists are under-educated in the area of ASD and under utilized for treatment planning.

c. Research priorities.
Less emphasis on top-down, skill-based, and compliance-based approaches to autism. Helping families to establish good emotional ties to their developmentally- fragile youngsters.

Respondent 0403

a. Gaps and underrepresented research areas.
None

b. New opportunities.
Look into highly trained professional.

c. Research priorities.
None

Respondent 0408

a. Gaps and underrepresented research areas.
There are not enough doctors capable of diagnosing ASD. There are not enough therapists doing OT, Speech, and ABA. There are not enough bio-med docs (doctors, not chiropractors). Researching where to turn for services is a joke! I was told there would be 6 MONTH waiting list to have my daughter diagnosed. I was told I could have 3 hours of ABA a week (out of pocket, not covered by insurance) when the recommended amount is 20-40 hours. I was told the waiting list to see a biomed doc was 2 YEARS... I KNEW where to turn for services, they just were too busy for us. ASD is inundating our systems. Spend your money fixing the ASD, not the system.

Respondent 0409

a. Gaps and underrepresented research areas.
Research needs to assist Speech Therapist in identifying options for the nonverbal and low-communicating individuals. SLPs in the school districts claim, "I can't help him, he can't talk!" Are you kidding me? He needs to communicate. Who takes responsibility for these individuals to communicate?!

b. New opportunities.
There needs to be research utilizing new computer technology. Touch screens, keyboards, mouse, and especially software could make a huge difference in the nonverbal individual.

c. Research priorities.
Speech and Language Therapies.

Respondent 0411

a. Gaps and underrepresented research areas.
There is much corruption with ASDs. Please read http://www.valleysnafu.com/eibt.htm. (IACC Note: URL is not valid.) You will see many documents that will explain some of the corruption that is occurring. School districts and regional centers routinely lie to parents...especially if their children with ASD are lower-functioning. School districts have deep pockets to pay for attorneys with our tax money and parents do not have the financial resources to fight. Consequently, children are being warehoused in special-day classrooms doomed to a future of dependence on the system.

Respondent 0420

a. Gaps and underrepresented research areas.
Mother's put their pediatricians on a pedestal and worship them like god. This is sad because pediatricians admit that they do not know anything about autism. I'm constantly shocked and reminded of how I was treated when I pleaded for help because my child quit talking and quit advancing like he was. They actually ignore it all and don't want to break the bad news. Often, mothers have to find out when they send the kids to preschool.

Respondent 0422

a. Gaps and underrepresented research areas.
My daughter was born in 1990 at the beginning of the expansion of autism diagnoses. Every place I went to for help, she was the first autistic person they had seen. We started early, when she was three, but there was no effective help and still hasn't been to this day. She is now 19. I believe she could have learned and been integrated into regular classes, she is bright enough. But it does take time and patience. The school systems did not have a clue. I don't blame them. They have enormous financial and administrative issues. I taught her a lot, but I had to work. She is happy and adjusted at home, but is essentially nonverbal. Where do I go?

b. New opportunities.
Language development research. Visual learning. Computer learning techniques for language development.

Respondent 0427

a. Gaps and underrepresented research areas.
Where can I turn for services, where ever I can afford services....? My parents pay for ABA from their retirement. Our kids are injected with shots, but so many kids are rejected because there families can't afford services or help. Autism comes with a big price tag.

Respondent 0430

a. Gaps and underrepresented research areas.
The topics misrepresented are the very real medical problems associated with autism. Is autism a neurological condition or a medical condition with neurological manifestations? Until you really answer this question you are spinning your wheels.

b. New opportunities.
Treatment research should focus on behavioral and biomedical interventions actually in use throughout the community.

c. Research priorities.
Study the treatments already being used in the autism community. Objective unbiased fearless research is a must. You must not be afraid of what you are going to find or leave any stone unturned. 1:100 children in not acceptable. It is within the power of this committee to save the next generation of children. It also seems that you have the power to throw them under the bus. Which will it be?

Respondent 0432

a. Gaps and underrepresented research areas.
We don't need research on this we need to actually fund treatments. Right now private insurance companies are allowed to specifically exclude research based behavioral interventions and no federally funded research is being done on biomedical interventions that are actually helping kids. Therefore, insurance companies are not covering those either.

Respondent 0437

a. Gaps and underrepresented research areas.
Connections Center/RDI Parent Education Program is the most powerful parent education tool I have found for my families.

b. New opportunities.
Connections Center/RDI Parent Education Program is the most powerful parent education tool I have found for my families.

c. Research priorities.
Dynamic Parent Education designed to educate parents about the core deficits of autism and how to remediate them at home. See Connections Center, RDI.

Respondent 0440

a. Gaps and underrepresented research areas.
Do autistic individuals receive adequate care and treatment from the medical profession for non-AS related concerns? What can be done to improve this? What can we do to improve recognition and handling of autistic individuals by police and other public safety officials? Does the information available to parents promote a mindset that is healthy for them and for their child? How about the information available to the public? What can we do to address the needs of autistics and their families without promoting an attitude of disproportionate negativity or increasing stigma?

c. Research priorities.
This section is massively under-prioritized. It is, quite frankly, shameful that so much time and energy is devoted into identify what interventions can help and yet so little into ensuring that people have access to these interventions and services. All the knowledge in the world addressing what services work is of little use if services aren't available or no one knows where to find them. This section should be of high, if not highest priority to the IACC, not the lowest.

Respondent 0445

a. Gaps and underrepresented research areas.
help parents find resources to help them open more government money

Respondent 0454

a. Gaps and underrepresented research areas.
Adult services (supported employment, housing, continuing education and rehabilitative services are nonexistent in many areas). Insurance coverage is very inadequate (they routinely deny autism treatment and therapies).

c. Research priorities.
Mandating insurance coverage for autism treatment and therapies. researching and publishing a blue print for best practices in services for adults with autism.

Respondent 0455

a. Gaps and underrepresented research areas.
There needs to be more guidance from the NIH and the American Society of Pediatrics.

Respondent 0459

a. Gaps and underrepresented research areas.
I think that services such as accommodations in the workplaces and schools should be funded. There should also be less funding of abusive programs such as ABA and PBS. Both have not been scientifically proven to be helpful. In fact, some would say that they are abusive.

b. New opportunities.
I think that autistic adults and children should be invited to talk about their experiences with ABA and PBS and the effect it has had on them. Research should also be done on accommodations given and asked for in the workplace and school and then have measures implemented so that they will be easier to obtain.

c. Research priorities.
This should be a very high priority because these measures could affect the futures of thousands of autistic people positively and has the potential to increase productivity in the workplace.

Respondent 0461

a. Gaps and underrepresented research areas.
DAN Doctors,

c. Research priorities.
finding places for group homes, jobs for the soon to be adult population. Also continuing education beyond 21 for those in the population who can learn.

Respondent 0472

a. Gaps and underrepresented research areas.
Again, the IACC has chosen to ignore adult issues--when adult services is quite arguable the area which needs the most improvement. Almost nothing other than institutional living and Social Security disability checks is available for autistic adults. We need services which examine how we might better gain and retain employment, quality housing, and other services which we might need to improve the quality of our lives. There is a need for these services right now. Almost all autistic people will, G-d willing, spend the majority of our lives as adults. The IACC needs to pay according attention to this portion of the lifespan.

b. New opportunities.
Again, when considering "early intervention services," we need to ask what constitutes a successful outcome. An autistic child who can "pass" for normal is not necessarily a success story. In fact, that child may be unhappy because he or she is forced to constantly behave as though he/she is not autistic. We should recalibrate our measuring sticks to value happiness and quality of life, as perceived by autistic people, as the true measure of the efficacy of autism services.

c. Research priorities.
Research which focuses on services that can allow people to live in community, non-segregated settings is vital. Institutional settings are extremely detrimental to autistic people, and we as a society need to make sure that fewer people (including autistic people) are living in them.

Respondent 0473

a. Gaps and underrepresented research areas.
Develop an autism-treatment network similar to that used for childhood cancers (where 97% of children are participating in a clinical trial and all receive similar standards of care) Develop treatment plan based on empiric data derived from large-scale treatment trials and systematic analyses of recovered cases and those with optimal outcome. The plan would be individualized based on demonstrated predictors of response to individual therapies (particularly biomedical treatments directed towards core symptoms).

Respondent 0474

b. New opportunities.
There is a continuing need for the development and dissemination of comprehensive curricula for teaching individuals diagnosed with autism. We suggest that the IACC promote research on the evaluation of teaching procedures and the production of a comprehensive curriculum of teaching procedures for individuals diagnosed with autism. We also suggest that the IACC promote examinations of methods of training caregivers to implement effective teaching procedures with individuals diagnosed with autism.

Respondent 0476

a. Gaps and underrepresented research areas.
Services, to date, are usually based on misunderstood behavior, capabilities, and needs. Society and many businesses can benefit from, and pay well, highly specialized employees, with a drive to systematically produce accurate product, that fits well in its application. People living on the autism spectrum can often behave near normally and perform very well, IF they are valued in society for their uncommon capabilities and skills, treated with respect, and challenged appropriately. Consequently, per the Life Needs hierarchy, we need to promote better understanding and performance of the positive aspects of autism, whereupon the drain of secondary problems will fade. An un-frustrated, un-apprehensive, and vigorous person with rare skills can cope considerably better with life. This translates into significantly less services and external resources required, and the person will likely have their own resources to pay for what they need, fostering a more independent life.

b. New opportunities.
An un-frustrated, un-apprehensive, and vigorous person with specialized rare skills can usually cope considerably better with life than a person forced to emulate what he is not. Develop appropriate education requirements for highly specialized people. This means if they are able to advance themselves requiring them to go through what they don't need is wasteful. This also means, what they can't use, don't try to force them to use it. An un-frustrated, un-apprehensive, and vigorous person with specialized rare skills, can usually be able to care for themselves and contribute to our economy.

c. Research priorities.
M... can learn a great deal from the communicative adults who have been trying to inform them of their error for a minimum of 40 years. An un-frustrated, un-apprehensive, and vigorous person with specialized rare skills, can usually cope considerably better with life than a person forced to emulate what he is not. Referring to the hierarchy of Life Needs, (Refer to the works of Abraham Maslow) specifically fitted to autistic life, we find that training social skills is secondary to a positive Esteem-of-Self-and-Capability. i.e. A spartanly-brief statement, if you do not believe that yourself is useful-needed-wanted, there is little point trying to be or do what you can't. You turn defensively inward. Following the very name of autism. Conversely, if you know you are useful-needed-wanted, there is plenty of awareness and willingness to behave more normally.

Respondent 0477

a. Gaps and underrepresented research areas.
Please make low verbal and nonverbal people with autism part of the Strategic plan! It is so important. Thank you very much.

Respondent 0480

a. Gaps and underrepresented research areas.
Florida Medicaid, within The Agency for Health Care Administration, oversees services provided to approximately 2,965 children 5 years of age and under diagnosed with either Down Syndrome or ASD. Of the children served, 1,438 are diagnosed with ASD only, while 1,527 are diagnosed with Down Syndrome (Medicaid claims data SFY 2006-2007). Medicaid pays about $20 million per year for Medicaid state plan occupational, physical and speech therapies for 8,073 children 20 years of age and under diagnosed with ASD and/or Down Syndrome. Medicaid's Early and Periodic Screening, Diagnosis and Treatment (EPSDT) program is a comprehensive and preventive child health service that implements sections 1902(a)(43) , 1905(a)(4)(B) and 1905(r) of the Social Security Act.

b. New opportunities.
EPSDT in Florida is known as the Child Health Check-Up (CHCUP) program. Medicaid reimburses for Child Health Check-Ups for eligible Medicaid recipients under age 21 and children from age 1 through 4 who are enrolled in the MediKids program. The EPSDT benefit includes screening services, as well as diagnostic and treatment services. Screening services are required in four areas: medical, vision, dental, and hearing. Other EPSDT services include vision services, including diagnosis, treatment, and eyeglasses; dental services, including relief of pain and infections, restoration of teeth, and maintenance of dental health; and hearing services, including diagnosis, treatment, and hearing aids. While the EPSDT benefit is important to all children, it has been especially beneficial to the children with disabilities enrolled in Medicaid. For these children, Medicaid, through EPSDT, provides more comprehensive coverage than the typical commercial insurance plan and increases access to ne

c. Research priorities.
As part of Senate Bill 2654, the 2008 Florida legislature also passed law which requires health insurance plans to cover the autism spectrum disorder and protects those with autism from denial of insurance coverage. The bill contains authority to seek provisions for establishment of a compact with all insurers, HMOs and self insurers to provide therapy services to patients with autism spectrum disorders. Should the insurers not agree and comply with the compact then an insurance mandate will become effective. The bill also allows $36,000 per year and a lifetime cap of $200,000 in insurance coverage for habilitative therapies for children identified as autistic by age eight.

Respondent 0481

a. Gaps and underrepresented research areas.
More research is needed on how community services and supports can help Autistics to obtain employment, including studies of how to educate employers on inclusion of people with disabilities in the workplace and how to assist employers in developing effective programs. Too often, Autistic people end up unemployed not because of inability to work, but because of prejudice and ignorance on the part of employers, as well as lack of transportation and other problems that could be remedied by better community supports and services. These issues would be most effectively studied together, instead of looking at them in isolation.

b. New opportunities.
I am pleased to see that the IACC is supporting the use of a participatory action model whereby Autistic citizens can work with their families and communities as partners in research that can in turn inform policy. This will go a long way toward addressing the concerns and meeting the needs of the Autistic population. Those who are most affected by research in a particular area should always be empowered to have meaningful input with regard to it.

c. Research priorities.
Cost-effectiveness studies of community-based services and supports should consider not just how to reduce the cost of services, but also the benefits to both individuals and society when Autistic people are empowered to engage in productive work and to contribute as taxpayers. Research such as the Ganz study that claims to state the cost of the existence of a minority population is unethical and offensive. As Tyler Cowen pointed out in his recent book, there would never be a study purporting to calculate the cost to society of each member of a racial minority group. Autistics deserve the same respect.

Respondent 0484

a. Gaps and underrepresented research areas.
Very few agencies have services to meet the needs of individuals with Autism. Person Centered Planning Clinics is a good start, as well as positive behavior support clinics and community resources that understand Autism. Currently there aren't any and until we create positive and welcoming environments people with autism will not be led to come out of the shadows for services.

c. Research priorities.
Volunteer, self-help non-profit organizations that help individuals of all ages with autism spectrum disorders must be nurtured and developed. Self-advocacy skills, organizational and leadership skills are particularly difficult for individuals with autism spectrum disorders to develop because of the complex learning and social disabilities that usually characterize the population. However, this effort is absolutely critical since these skills are essential for lifelong success. Voluntary community supports are foundational for democracies throughout the world. Scientific studies of human polity have discovered that the nonprofit sector must be an equal counter balancer to the power of government and business in order for a particular human society to be a healthy democracy.

Respondent 0485

a. Gaps and underrepresented research areas.
Go to Age of Autism and read and hear from other parents when the services are absent in the autism communities. Its the only way that some parents get the help they need when everything else fails

Respondent 0488

a. Gaps and underrepresented research areas.
Funding streams are missing. Some classrooms have staff paid by many different agencies, which really affects the ability to work as a team. I'd love to see research looking at how this affects service provision. Also, there is a tremendous turnover of staff due to emotional exhaustion. This contributes to unavailability of services. Consider studying what contributes to staff longevity.

Respondent 0493

a. Gaps and underrepresented research areas.
Parents of the children suffering. Not a Dr. since the people charged with guarding our children's health have these things to say. "American Academy of Pediatrics 80% surveyed 2/2009 we don't want to go to DAN conferences and investigate nutritional support or biomedical interventions quite frankly if the parents don't want to put the children on drugs to control the behaviors we rather not see them. Don't waste valuable billing time discussing the merits of vaccines with parents if they don't want to vaccinate or want to alter the schedule dismiss them from the practice and report them to the state department of health for medical neglect of their children. Again talk with the people who live it and have a vested interest not in profits or kick backs or patent royalties but in HELPING THE CHILDREN.

b. New opportunities.
ASK THE PARENTS THIS MEDICAL COMMUNITY HAS SOLD OUT TO BIG PHARMA

Respondent 0494

a. Gaps and underrepresented research areas.
The government services available in my state are a JOKE. Services paid for with cash are great. The ISD's are a bigger joke. So, more money out of pocket for private school. The best place for information starts with other autism parents. Research the parents.

Respondent 0501

a. Gaps and underrepresented research areas.
Research how attitude and acceptance of autism effects the outcome of treatment methodologies and quality of life.

b. New opportunities.
Research the benefits of supportive services (occupational therapy, speech therapy, physical therapy) and how they can be coordinated with other approaches.

c. Research priorities.
Prioritize services that improve quality of life, not just target "normality" as their goal.

Respondent 0502

c. Research priorities.
Currently parents of newly diagnosed autistic children don't know where to go or what to do. Pediatricians don't even have advice! Must be a place to go, a source of information for families. Many families wander toward "fringe" treatments and services out of desperation.

Respondent 0506

a. Gaps and underrepresented research areas.
Applying chronic care model elements to ASD including the use of registries, standards, patient/family information, community agency involvement, monitoring and follow up. Another area that's underrepresented is treatment of individuals in families in rural and underserved areas.

Respondent 0507

Helen McNabb

a. Gaps and underrepresented research areas.
1. Services through the Maryland State Dept. of Developmental Disabilities Assoc. has not been successful. They have a waiting list. This organization hires private companies to encourage adults to focus on getting to work -- to become taxpayers! They are not interested in what the person with ASD wants to do with their life in relation to college. And, some of these students are interested in pursuing a career in the area of their obsession. All have abilities and talents and need time to hone in on them. 2. The Governor's Youth Transition Program is focused on getting the student with ASD to work immediately. They don\'t care about being creative in thinking of ways to support the student in obtaining their goals. 3. The colleges are on the cutting edge of trying to understand ASD and provide supports but they are limited. Stigma still exists whereby some employees have the attitude that if the person w/ASD can't communicate effectively then they shouldn't be in college

b. New opportunities.
1. Financial support- all areas of life! 2. Health Insurance whereby a person can have Medical Assistance pay their private insurance premium and everyone wins! 3. Public and private supports based on person/families needs - respite, teaching daily activities of living, financial needs, assistance in obtaining food/clothing/shelter, etc. 4. Education - colleges who are equipped to support and nurture this population. 5. Housing - finding a place with supports.

c. Research priorities.
Those who have the most needs, then age.

Respondent 0509

a. Gaps and underrepresented research areas.
Include biomedical treatments as services to be studied.

b. New opportunities.
Include biomedical treatments as services to be studied.

c. Research priorities.
Include biomedical treatments as services to be studied.

Respondent 0510

a. Gaps and underrepresented research areas.
How can I afford these services?

b. New opportunities.
More local and free access!

Respondent 0512

b. New opportunities.
There should be a comprehensive guide for children and adults with autism of the available services and programs for each state. ABA (applied behavioral analysis) therapy should be readily available as part of early intervention programs.

Respondent 0514

a. Gaps and underrepresented research areas.
LOL, Services, what services? Autism DOES NOT NEED BABYSITTERS. . . . . . it goes without saying that nothing behavior works. Nothing in our health care or government system has been helpful for 6 years. Create a new doctor available to every Autistic ---- A toxicologist in every hospital. . . . or create a federal law to pay for DAN doctor treatments This is biologically caused. Do the non vaccinated study vs. vaccinated. And cut out all the toxins the CDC and governments are pimping.

b. New opportunities.
LOL, Services, what services? Autism DOES NOT NEED BABYSITTERS. . . . . . it goes without saying that nothing behavior works. Nothing in our health care or government system has been helpful for 6 years. Create a new doctor available to every Autistic ---- A toxicologist in every hospital. . . . or create a federal law to pay for DAN doctor treatments This is biologically caused. Do the non vaccinated study vs. vaccinated. And cut out all the toxins the CDC and governments are pimping.
c. Research priorities.

LOL, Services, what services? Autism DOES NOT NEED BABYSITTERS. . . . . . it goes without saying that nothing behavior works. Nothing in our health care or government system has been helpful for 6 years. Create a new doctor available to every Autistic ---- A toxicologist in every hospital. . . . or create a federal law to pay for DAN doctor treatments This is biologically caused. Do the non vaccinated study vs. vaccinated. And cut out all the toxins the CDC and governments are pimping.

Respondent 0521

a. Gaps and underrepresented research areas.
the lack of services for low and nonverbal and low verbal people with autism. The lack of "one stop shopping" wherein the various biopsychosocial and even spiritual resources are not well integrated

b. New opportunities.
the low and nonverbal subtype of people with autism merit appropriate services. Examining bias among educational, medical and social services for these people should be studied from an anthropological view

c. Research priorities.
The archaic culture of education, treatment and intervention leaves low and nonverbal children with autism without adequate resources

Respondent 0524

a. Gaps and underrepresented research areas.
I'd love to see more funding for schools that use methods besides ABA. Also, it's essential that we have services for individuals with ASD after they turn 18. We need jobs programs and assisted living support. We need safe living situations for nonverbal autistic adults who cannot defend themselves or discuss what is happening to them.

Question 6: What Does the Future Hold?

Respondent 0013

Eileen Nicole Simon
conradsimon.org This link exits the Interagency Autism Coordinating Committee Web site

a. Gaps and underrepresented research areas.
My son with ASD is now 46 years old. I have now spent more than half my life working to try to understand and work with his cognitive impairments. I even returned to school and earned a PhD in biochemistry. Why are my efforts to discuss what I have learned over more than 40 years so disregarded? Trying to suggest ideas to the IACC has been like trying to talk to a stone wall. I would appreciate seeing the IACC discuss not only pre- and post-natal problems, but birth itself. This seems to be more of a taboo subject than vaccinations. Obstetric protocols have become more invasive over the same two decade period that autism prevalence has increased. Most important is the evidence (also disregarded) that the auditory system of the brain is injured by asphyxia at birth, which most likely impairs language development.

b. New opportunities.
My first two sons and I participated in the Collaborative Perinatal Study (CPS) which was to have been a prospective study of perinatal health and outcomes. The National Children's Study looks like a re-invention of this idea. The IACC should try to find the data collected in the CPS and find children who developed autism, and try to locate these individuals now. If these data are now thought to be out of date, why is there such a clamor for prospective versus retrospective studies? Then do retrospective studies. I have worked for nearly 18 years at Bridgewater State Hospital in Massachusetts, and in 1994 I applied for a grant to obtain and study developmental records of our patients. I have just proposed to MHM Services (current holder of the contract) that we apply for research grant funding, also to help increase nursing staff and observations of care givers like nurses in the patient milieu may provide more insight than researchers working in ivory-tower laboratories.

c. Research priorities.
We need actuarial scientists, from private insurance companies as well as Social Security to do some down-to-earth research on why autism and all developmental disabilities are on the rise (including problems like kernicterus). We can't just keep appealing to legislators, who more often than not pull out empty pockets and chide us about the duty of family. The basis of a capitalistic society is that All men are created equal and clearly this is no longer true in this polluted world, where medical care is based on invasive and unnatural procedures and pharmaceutical poisons.

Respondent 0016

a. Gaps and underrepresented research areas.
Microboards are based in self determination and person centered planning. People with autism dont need cookie cutter service plans. they need TRUE person centered planning because of their high level uniqueness and interests. Again, not complicated. It requires time and care. People help people have a good life, not policies and procedures.

b. New opportunities.
Connect people through microboards and human service cooperatives. Isolation and lonlieness NOT autism is the most disabling condition.

c. Research priorities.
communication microboards family support

Respondent 0022

a. Gaps and underrepresented research areas.
Death rates in the wonderful new for profit foster care homes that have replaced other options. There is some suggestions that the vulnerable die earlier in this system but none know.

b. New opportunities.
Meaningful community integration programs need to be piloted and then applied.

c. Research priorities.
Why do research if there is then nothing done as a result?

Respondent 0023

John Best
Hating Autism blog

a. Gaps and underrepresented research areas.
You should check the families of all drug company employees for the APO-E4 protein, politicians and yourselves too. Give the flu shots with thimerosal and squalene to any pregnant people who belong to these groups and see if their babies are born with brain damage. Then you can experience what we already know first-hand and you might stop acting like imbeciles.

Respondent 0024

a. Gaps and underrepresented research areas.
The future requires both research into causes and providing services for those in need.

c. Research priorities.
Our resources must be balanced between finding a cause/cure with serving people in need right now.

Respondent 0029

a. Gaps and underrepresented research areas.
What are the long term effects and adverse complications of Risperdal? How many adolescents and adults with autism are on antipsychotics and other psychoactive medications? Do antipsychotics have a benefit for long term use? How is mental illness diagnosed in autism?

c. Research priorities.
An alarming percent of people with autism are being put on psychoactive medications with little study on the impact (like the real possibility we may be creating a generation of adults with autism and diabetes). This will create huge service delivery problems where we will need homes and services that can manage both complex behavioral and medical problems.

Respondent 0031

a. Gaps and underrepresented research areas.
The future is bleak unless something changes and care is provided to adults with ASD.

Respondent 0035

a. Gaps and underrepresented research areas.
I don't know.

b. New opportunities.
I don't know.

c. Research priorities.
I don't know.

Respondent 0037

a. Gaps and underrepresented research areas.
My biggest fear is that you people will do nothing and if your previous meetings and agenda are an example of what we are to expect that is what is going to happen [profane language redacted] NOTHING.

Respondent 0042

a. Gaps and underrepresented research areas.
Adults with autism are not being represented here. Their future is already here. Why are we only focusing on children?

b. New opportunities.
Get out there and talk to adults with autism. They are living my children's future. I want their knowledge to be included in this.

Respondent 0046

a. Gaps and underrepresented research areas.
Medicaid Waiver State reciprocity is underrepresented.

b. New opportunities.
Many families are not aware that they can access assistance through a Medicaid Waiver.

c. Research priorities.
Again, State reciprocity for Medicaid Waivers to promote streamling services.

Respondent 0047

a. Gaps and underrepresented research areas.
See above.

b. New opportunities.
See above.

c. Research priorities.
I suggest that the IACC stop making the situation worse by ignoring and/or sabotaging the efforts of parents to speak to these issues from their true life experiences, and start listening to them. The pharmaceutical companies are NOT interested in any solution that would eat into their profits. Allowing this committee to be controlled by people who are on the payrolls of or being contracted by them is a travesty, and completely ignores the intent of Congress when the committee was authorized.

Respondent 0049

a. Gaps and underrepresented research areas.
Autism in the workforce. Individuals on the Spectrum need to be trained to their strengths and the MENTORED. They need to have steady contact with individuals who can help them conduct employment interviews, socialize with coworkers and managers, conduct meetings, make presentations.

b. New opportunities.
ASD individuals tend to excel at solitary, analytical occupations. They often have very valuable insights when it comes to innovation, troubleshooting and testing. Employers in engineering, technical, IT, medical and architectural fields need to cultivate these individuals at a young age, encourage ASD students to apply for internships, summer work programs, and foster ongoing, supportive relationships between employees and the students.

Respondent 0052

a. Gaps and underrepresented research areas.
*How Do You Determine When Someone with ASD has gone as far as they can? and what are the options if they can not reach a level of functionality that we would accept as "normal"? *Social education- How do we teach them how to interact with other people and behave(at least in public)in an appropriate manner? *Vocational education- How do we teach them to use the gifts that they have to become contributing members of society? *Independence- How do we help them to transition from being a dependent kid who has most things done for them to an independent citizen who can do it for themselves?

b. New opportunities.
More effort should be given to determine what they can do rather than focusing on what they seem unable to achieve. Perhaps more research should be done with adults on the spectrum to see what was most effective for them and what things they believe should be encouraged.

c. Research priorities.
ASD is the fastest growing disability in the world and so we have more and more ASD kids becoming adults all the time. We need to figure out what strategies can be used to help them join the community at large in a positive way.

Respondent 0054

a. Gaps and underrepresented research areas.
Adult outcomes of autistics should be published and the true prognosis for adults should be publicized. It certainly is not good and this should be known for people who want to review the efficacy of certain treatments and fund certain types of research and lobby for federal funding of IDEA.

b. New opportunities.
same as above.

c. Research priorities.
same as above.

Respondent 0055

a. Gaps and underrepresented research areas.
The good news is that all these kids stand to live much longer than they would have done in the past. The bad news is we don't know how to find them work, housing or social lives, and we continue to view their difficulties as their disability rather than address the functional deficit. Whatever condition a person has, they need an income and a home and a family of some kind.

b. New opportunities.
The recession is affording an opportunity to rethink old service delivery models and to focus more closely on the individual. Technology will allow us to do the same by providing more granular and frequent information about the individual, monitoring their care more closely while affording them more independence.

c. Research priorities.
Find out how many older adults have what would now be termed ASD but which was diagnosed as something else when they entered the system. (no one's diagnosis ever changes).

Respondent 0057

a. Gaps and underrepresented research areas.
housing, meaningful recreation and community interaction and vocational opportunities more often are lacking than available. Research already validates that most adults with disabilities live at poverty level. Parents need more assistance in creatively assuring their children's futures rather than relying on social security benefits and failing state support.

b. New opportunities.
see above

c. Research priorities.
see above

Respondent 0059

a. Gaps and underrepresented research areas.
The future looks like 1:30 boys if we don't get Tom Insel out and some one honest in. Tom Insel can live off the money his brother earned from Hib vaccine.

b. New opportunities.
* Take a good long hard honest look at vaccines as the cause. * Performing titers and seeing who is immune and needs no more boosters. What are the best treatments (that does not mean no treatment) that is how the doctors act now. Even if you have a child with acid reflux, oxygen issues, inflammatory issues, autoimmune issues. More opportunities would be offered these children if Tom Insel left and some one honest replaced him.

c. Research priorities.
I see most of the United States brain power taken away from us because of Autism. My husband was an engineer, but his autistic son will not be. Tom Insel these injured children are not going to have some big science or research, or engineer job, but just not a big social job. These injuries have taken their intelligence away from them and their job options are called sheltered workshops! Getting rid of Tom Insel and replacing him with some one not connected to the vaccine industry like his brother Richard Insel is what I want to see in the future.

Respondent 0060

a. Gaps and underrepresented research areas.
The budget allotted for the development and availability of merged/linked databases for tracking involvement of ASD people should be increased and inclusive of ARI/DAN clinical data.

b. New opportunities.
Due to the numerous interventions currently utilized in the treatment of ASD, clinical trials on efficacy and cost-effectiveness of interventions, services and support to optimize daily functioning should be increased from 2 trials to 5.

Respondent 0063

a. Gaps and underrepresented research areas.
Our public schools are failing to help even Asperger's kids. Their goal is to "make him look like all the other kids" which is laughable. They run on a reactive rather than proactive mode. They won't help unless the child is severely failing--at what permanent cost to the child? Our kids are invisible and they want to keep them that way. They will sacrifice our children's potential to avoid dealing with it. IDEA is a joke. IEP's and the so-called "team" often does not truly include parents or even their doctors. It is appalling that in the United States so many schools are run by people who have no interest in learning. How do we help our children realize their fullest potential in this environment?

Respondent 0074

a. Gaps and underrepresented research areas.
God help us. I don't know what will happen to my son if I die.

Respondent 0075

a. Gaps and underrepresented research areas.
IF the blindly naive treatments of misunderstood behavior displayed by frustrated, apprehensive, and worn down children, is reversed, the enlightened future holds many solutions to current nagging problems. The enlightened future also holds promise of converting much of the waste of currently taught-defective consumers, into positive tax payers. Ominously, the unenlightened future holds HUGE COSTS AND WASTED LIVES, if the naivety of traditional treatments based only on said children is continued.

b. New opportunities.
see VI c

c. Research priorities.
The SPRATS series, a dual hierarchy is a way to realize the personality of a person with the condition fostering autism or ANY other personality WITHOUT historical assumption and bias. 1. The mind's use-and-need of the body's neurological systems in order to relate to its environment and to think. 2. What makes a personality, combined with the minds use and need of body systems. In order to survive and to function optimally, ANY individual's LIFE NEEDS are required in first things first order. The R-W-N-S-eHa-UA-eHoE-ESaC-IdF-aHa-DHoE-EBI series, is a hierarchy of LIFE NEEDS, closely fitting a neurological condition associated with autism. Both series combine into an inclusive hierarchy of use/ need for an individual to have a LIFE, NOT A LIFE SENTENCE. IF the full combination is not complete and working well, in order, any small glitch is likely to become an illustration of cubically reentrant Mobius paths, A TANGLED SPAGHETTI BOWL, TWISTED AROUND, UPSIDE DOWN & INSIDE OUT.

Respondent 0077

a. Gaps and underrepresented research areas.
Long term studies into autistic adults, especially as they age, and examine whether or not they are more or less likely to suffer from other aging related illnesses. How do we encourage persons on the spectrum (who can handle it) to seek access to higher education. I myself hold a master's degree, yet I was shocked to hear that many of the aspies whom I met essentially believed that they were incapable of the challenges. Did they make that judgment, or did others in the educational system make that for them? Employment issues. Too often persons with high functioning Autism Spectrum Disorders are unemployed or underemployed. What is the best way for employers take advantage of their strengths and weaknesses, and contribute to the economy and society at large? For those auties who rely on family member caretakers what are the best ways for them to deal with life's inevitable changes, especially in the wake of the death of a loved one?

b. New opportunities.
I'm not certain. AAGW (http://aagw.net This link exits the Interagency Autism Coordinating Committee Web site) has many high functioning adults, many of whom are in their twenties, who may be willing to participate in such studies.

c. Research priorities.
#1. Understanding the effects of aging and autism. #2. Education. #3. Employment. #4. Family life. #5. Death of caretakers.

Respondent 0095

a. Gaps and underrepresented research areas.
A growing population of young people and adults who will need lots of different kinds of social services....are we ready?

Respondent 0102

a. Gaps and underrepresented research areas.
If the government continues to deny the relationship between vaccines and autism - more of the same. More autism, more lives destroyed, more financial ruin.

Respondent 0105

a. Gaps and underrepresented research areas.
The trend for ASD is on the increase, giving rise to more anticipated problems and highlighting the need to services to be put in place. Time is pressing, money is limited. Funding research is not the only solution. Every dollar spent on research and/or services, must be fully justified, in terms of the outcome and impact on persons with ASD. Every single drop of blood given by the persons with ASD for research purposes, must be fully justified and worthwhile. Education of researchers, educators, judges, police officers, and the population in general, is mandatory and urgent.

b. New opportunities.
Education of the population on autism is an imperative task in order to eliminate the stigma and to improve their lives. As the ignorance about autism, even among the medical community, sometimes is frightening, scaring and unbelievable, any educational effort at school, college and university level, as well as in the communities is absolutely necessary. If not, the Rain Man would remain the main picture of autism, and Hollywood the main educator. Thanks to the continuous efforts and struggle from the different autism societies, the world of ASD persons is much improved nowadays. But this is not enough. Much more must be done urgently at national level.

c. Research priorities.
Although there are some scientific papers related to the above proposed research topics, more accurate research and scientific work needs to be done for valid conclusions to be drawn.

Respondent 0125

a. Gaps and underrepresented research areas.
I do not find this a very helpful line of inquiry.

Respondent 0131

a. Gaps and underrepresented research areas.
Research devoted to examining the content as well as frequency, duration and intensity of treatment programs and how changes in these aspects of treatment best support adult functioning. Examining changes in these aspects of treatment may lead to more information that addresses transitional needs of individuals with ASD.

b. New opportunities.
No comment.

c. Research priorities.
Conduct at least two clinical trials to test the efficacy and cost effectiveness of interventions, services and supports to optimize daily functioning (e.g., educational, vocational, recreational and social experiences) for adolescents, adults or seniors living with ASD by 2012. ASHA believes that this contributes to the goal of examining efficacy and effectiveness of treatment that is foundational to other research initiatives and should include not only content of interventions, services and supports but also examine frequency, duration and intensity issues.

Respondent 0133

a. Gaps and underrepresented research areas.
The future hinges upon the answers to some basic questions that haven't been answered because of the political football ASD has become.

Respondent 0140

a. Gaps and underrepresented research areas.
-The focus should not be genetics but epigenetics and environmental prenatal AND postnatal exposures. - The development of non- aggressive specific testing for specific problems in ASD - the research on the ASD subgroups in terms of biology, metabolism, biochemistry, immune, endocrinological and HPA system -The research on the impact of placebo effects in drugs used to control behavior and on the secondary effects of them -The impact of motor development, speech development, skills developments and medical conditions present (properly tested) in the outcome of ASD subgroups

Respondent 0141

a. Gaps and underrepresented research areas.
This part of the strategic plan says, "Efforts to improve public awareness and community supports could help foster acceptance, inclusion, and appreciation of people with ASD." I think everyone can agree with the above goal. Ironically, a great deal of "autism awareness", as it stands today, does the exact opposite. The public is bombarded with messages about autism that promote fear, hatred, and pity. How can an autistic person be accepted in society when his life is reduced to monetary burden by the "3 million in costs over his lifetime"? How can Autistic people be appreciated for who they are when the general public is told that autism is a horrible disease which must be prevented? Some organizations want the public to think of autism as a tragedy in order to raise money to cure children. What they may not have thought about, is how these messages about autism will affect their children as they get older.

b. New opportunities.
Again, research autistic adults. Find out who is happy, who is not, and why. Ask them what treatments or educational methods were helpful, which were harmful, and which did nothing.

c. Research priorities.
The primary objective should be researching supports and services for Autistic people in adulthood. Then get out of the lab, and make it happen! We need services and supports! We don't need brain biopsies.

Respondent 0146

c. Research priorities.
Recommend priority be given to longitudinal studies and cost effectiveness of a range of interventions.

Respondent 0148

a. Gaps and underrepresented research areas.
How does infant-caregiver relationship across all infants directly effect with synaptogenesis and interconnectivity of the young brain?

b. New opportunities.
MRI and other astounding, nonintrusive technologies promise more precise data that can ultimately be connected to clinically observable behaviors

c. Research priorities.
Stated above

Respondent 0149

a. Gaps and underrepresented research areas.
How about where the adult with ASD will be living? I don't see anything in here about studying the care and living arrangements for adults with ASD.

b. New opportunities.
How about including something in here about developing standards that would be federal and cross state lines? How about developing standards on how to deal with adults with ASD? How about developing guidelines for public personnel (police, bus drivers, train conductors, EMT workers, etc...) on how to deal with adults with ASD? Do they currently receive ANY training at all? I don't see anything in here about increasing the number of unisex public restrooms. Have there been studies conducted to quantify the number of unisex public restrooms for adults with ASD and their caregivers to use?

Respondent 0151

a. Gaps and underrepresented research areas.
I think that providing significant improvement in access to proven alternative treatments in addition to proven "approved" treatments will change what the future holds for them. Additionally, the teachers in special education settings should be provided more intense training for how to effectively teach ASD children. As far as future possibilities, I like to stay optimistic and hope that my children may someday be productive members of society. I would like to see educational grants for autistic persons for any post high school education / programs that they qualify for (including vocational colleges and traditional universities).

b. New opportunities.
Open doors (provide opportunities) for those who need them opened and then collect data to study whether or not they are providing a productive service. Protect them under the law from discrimination. Protect them as children from bullies so that the emotional scarring they will undoubtedly have from being singled out can at least be limited as much as possible. Create loving / nurturing environments for them to learn in with well educated teachers.

c. Research priorities.
Provide early help via better teachers, and school environment, then when out of school, open doors for additional education, training and employment and then monitor for results.

Respondent 0152

c. Research priorities.
Many more normative studies from time of birth on need to be done in order to develop a baseline to be used to development assessment tools which will flag at the earliest possible age any potential cases of ASDs. Practitioners, families, and teachers all need to become more familiar with the ASDs, not just anecdotally or experientially, but through forums such as are being offered here, where all are invited to share their current research and experiences.

Respondent 0154

a. Gaps and underrepresented research areas.
Bleak future, when the government won't acknowledge that the vaccine schedule is too aggressive and most of the vaccines unnecessary. Study the links.... +++++ vaccines +++++++++ overusing antibiotics ++++++++++ weak immune systems ========= AUTISM (Man made)

Respondent 0157

a. Gaps and underrepresented research areas.
Information needs to be issued in a simple, understandable (i.e. not a lot of medical jargon) format listing factual information based upon the latest research and studies. Basic information on brain function and development and how autism impacts this process would also be useful. It would also be helpful to have information regarding efficacy research for each of the interventions.

Respondent 0161

a. Gaps and underrepresented research areas.
Find the recovered children. There are thousands of them out there, but once you've gone through this exhausting, multi-year ordeal, you tend to want to go forward and never look back. The future can be very bright indeed, but you need to talk to those who have accomplished it, not those who listened to their doctors and did nothing, or worse, institutionalized their poor children.

Respondent 0168

a. Gaps and underrepresented research areas.
Incorporating experience of people on the spectrum at all levels of functioning. So, when possible, not only very verbal individuals, but potentially more impaired individuals who may communicate via typing.

b. New opportunities.
A research approach is needed that incorporates the experiences of people with autism across the functioning range to see what are their goals, what do they think works and doesn't, and how can these ideas be put into practice for better positive support systems?

c. Research priorities.
Understanding the variation and outcome for adults is very important and should be kept as a priority.

Respondent 0173

b. New opportunities.
Parents and guardians need help with planning for higher functioning young adults. Some of these young people are brilliant intellectually, yet still struggle socially or with life skills. My son will need help with making sure that his bills get paid and that laundry is done, etc. He is highly gifted in math and engineering-type skills. SO he has the potential for making money to support himself. What about the rest of the picture?

Respondent 0176

a. Gaps and underrepresented research areas.
It appears that the future places tremendous significance on the ability of researchers to determine the cause and cure of autism. Likewise, it appears that an entire generation of children affected by autism will continue suffering without the types and intensity of services necessary to improve outcomes for this very intelligent yet socially ignorant population. The most relevant research topics are not research topics at all: Children with ASD and their families need help, right here, right now, with a bold swiftness that is heretofore unprecedented. I suggest that we make daily intervention free and available to all school-age children with ASD through intervention "gyms" available in all communities. Intervention gyms would be organized for the needs of children and youth with ASD and staffed with therapeutic professionals specializing in treating ASD. There would be a pool (since swimming is universally therapeutic for individuals with ASD) and a dream OT/PT gym.

b. New opportunities.
Children with ASD and their families need daily support and enrichment opportunities such as those offered through Early Intervention Services, only they need them for the duration that children remain school-age. Children with ASD need intensive behavioral and therapeutic supports such as Applied Behavioral Analysis; Floortime/DIR; RDI; speech-language intervention ranging from learning American Sign Language, PECS, or other speech support system (for nonverbal children) and language and social skills supports, including social stories and comic strip conversations, for verbal children; occupational and physical therapy to do simple tasks such as dressing and undressing, tying shoes, and using buttons, zippers, and snaps. Additionally, children with ASD need access to biological supports such as auditory integration that can assist children in learning by ameliorating sensory overloads, as well as dietary changes, chelation, supplements, and environmental detoxification.

c. Research priorities.
Build or convert gyms in every community for use with children and youth with ASD. Speech-language pathologists, behavioral specialists, occupational therapists, physical therapists, etc. would have offices in the gym building and offer services there. Gyms would have swimming pools and large, open areas with therapeutic implements used by occupational and physical therapists. Individuals with ASD and their families would become members, receiving membership and services for free until children leave secondary school. Individuals and their families could receive services every day the gym was open. Services would include ongoing education for parents regarding interventions, advocacy, and support groups. Services would also include social groups for children on the autism spectrum to practice social skills, turn-taking, perspective-taking, and transition decoding, plus employment support as youth enter working age and living transition assistance and information.

Respondent 0181

a. Gaps and underrepresented research areas.
VI. What Does the Future Hold? We agree that families incur large debts related to medical and educational services not covered through public programs or medical and dental insurance. At last count, we personally have spent $18,000 over two years for therapies for our daughter not covered by the educational or medical system. In fact, as I write these comments today our Governor signed autism insurance legislation requiring about half of the health insurers to cover all needed therapies for children and youth with autism. We support looking at transition not just as school to work but possibly post secondary education and access to adult healthcare, as we have personal and professional experience with youth and young adults with autism who are currently participating in and benefiting from post-secondary education and taking a decision-making role in their own healthcare. We support the look at inappropriate involvement in the juvenile justice system. continued...

b. New opportunities.
Further, we support services for children with a dual diagnosis of developmental disability and mental illness. The DD and mental health communities need to collaborate. Currently the DD system supplies behaviorists but a child saying they're going to kill themselves or someone else needs mental health crisis intervention. The mental health system erroneously believes that children with DD can't benefit from counseling and treatment. Autism is listed in the DSM IV, the Diagnostic and Statistical Manual of Mental Disorders. There must be recognition that autism and mental illness are both brain disorders. continued...

c. Research priorities.
In summary, we support the majority of the strategic plan with the exceptions noted above. We recommend looking into existing diagnostic tools, clinical practice guidelines/policy statements, research, and resources rather than using limited autism research funding for these purposes. Thank you for the opportunity to comment on the proposed IACC strategic plan.

Respondent 0187

a. Gaps and underrepresented research areas.
Research topics that are missing: Please include more nonverbal subjects in your research. No research has been done on this group. This is a critical area that is missing from the autism research 'road map'. The possibilities are limitless, if we can begin the groundwork of including this critical, under-served ASD group.

b. New opportunities.
New opportunities and needs for advancing research include developing cognitive testing for nonverbal ASDs, and studying how this group perceives and tolerates its immediate environment, so that new and effective interventions, therapies, and services can be developed.

c. Research priorities.
1. Include more nonverbal subjects in research. 2. Develop cognitive testing for nonverbal subjects. 3. Study how nonverbal subjects tolerate their immediate environment.

Respondent 0190

a. Gaps and underrepresented research areas.
Successful transition into the adult world requires more than a cursory knowledge base of the individual with ASD or the systems involved in the transition process. It is hoped the IACC will identify opportunities for additional research to improve the methods by which collaboration occurs between educational and adult service agencies as well as to determine a minimal standard of knowledge and skills necessary to sufficiently prepare the youth with ASD to understand and access adult services that support a desired quality of life. Ohio has taken some steps. A transition pilot project, through a partnership with the Ohio Department of Education, OCALI, and the Ohio Department of MRDD has been established to assist school districts to utilize a customized employment approach, developing local Transition Councils and teaming with County Boards of MRDD, the Rehabilitation Services Commission, school districts, and others.

b. New opportunities.
Opportunities for educational training programs for adult service providers that are grounded in evidence based research to build capacity among the adult service system are needed. Minimal competencies should be required for adult service providers and programs. Resources should be allocated to identify, define and operationalize these competencies in light of home, work, and community settings.--- Methods for training and informaton. dissemination will continue to be an ongoing need as more is learned about ASD. Advancing this research opens opportunities to better prepare caregivers and service providers. Ohio is doing so through the Autism Internet Modules (AIM) project. Through the efforts of the OCALI, in coordination with other national partners, AIM is slated to develop a series of 60 online modules by the time the project is complete. These modules will include a host of lifespan topics. Module authors will include experts in ASD from across the nation.

Respondent 0194

a. Gaps and underrepresented research areas.
The clinical course and biology of aging with autism is virtually unknown. Inclusion of biological measures in longitudinal studies will aid in our understanding of individual variation in long term outcome and health. Additionally, there should be efforts to collect biological and clinical data on patients both pre- and post- mortem, granting a more global picture of autism through an individual's life.

b. New opportunities.
Evidence based safety training programs need to be incorporated into curriculum for individuals with ASD to be more fully integrated into the community.

c. Research priorities.
According to United Cerebral Palsy's 2008 report on The Case for Inclusion, 43 states plus the District of Columbia maintain waiting lists for residential services. In 1998 it was estimated that over 87,000 individuals with developmental disabilities were awaiting residential placement (Parish 2002). As more and more children with autism age out of the educational system, it will be imperative that research be conducted to develop and assess the impact on quality of life of various options for residential placements in the community.

Respondent 0200

a. Gaps and underrepresented research areas.
What can these children do with their lives if they cannot communicate?

Respondent 0202

a. Gaps and underrepresented research areas.
WHO KNOWS, BUT WE WILL NEVER GIVE UP!!!!!! MY son has almost no voice but is an intelligent boy inside, must have help to communicate

Respondent 0203

a. Gaps and underrepresented research areas.
What is the impact of finding an effective means of communication - as early as possible in the child's development? What is the impact if communication becomes possible later in life? Communication, communication, communication Focus on kids who struggle to communicate!

Respondent 0210

c. Research priorities.
Focus needed on researching types of housing services that will enable individuals with ASD to lead independent or relatively independent lives. Research needed that focuses on the integration of treatments, therapies, pedagogy, and educational programming based on what is known about long term outcomes and experiences from individuals living with an ASD.

Respondent 0211

c. Research priorities.
eliminating all waiting lists.

Respondent 0213

a. Gaps and underrepresented research areas.
Nonverbal and low-communicating individuals with autism, have been almost entirely excluded from federally funded research. The nonverbal subgroup represents about 15-20% of the autism spectrum and yet there is no research focused specifically on them. When you combine the nonverbal group with those who can speak but are unable to communicate (low-communicating), this adds up to approximately 50% of the autism spectrum population, yet they are not represented in current research nor is there any research specifically focused on them.

b. New opportunities.
Technological advances have occurred which may be included in research on communication.

c. Research priorities.
Nonverbal and low-communicating individuals with autism should be included.

Respondent 0215

a. Gaps and underrepresented research areas.
The whole arena of adulthood and the issues that go along with 'aging with autism'. My daughter is 20 and I'm finding few resources available to learn from.

b. New opportunities.
As more and more focus turns, rightly so, away from 'congregate care' options and toward more individualized neighborhood living, I'd like to see some attention and guidance given to the existing service provider models and how they can more successfully re-design their models from ones based on old 'MR' clientele and toward the needs and unique learning/living styles of adults with autism. The old models work for some, but not most, in our community here in Illinois.

c. Research priorities.
More research conducted in conjunction with corporate/business community would be outstanding. Or with Chambers of Commerce! To promote employment and reduce our traditional reliance on paternalistic notions of 'care'. More research into issues of aging and practical research leading to better interventions/supports for adults to understand things like body changes as you age; death of loved ones; etc.

Respondent 0222

a. Gaps and underrepresented research areas.
There seems to be very little research being done that relates to older individuals with autism or those who are nonverbal or have low communication skills. My child falls into this category. She is almost 18, talks but has difficulty with communicating; there is a big difference in talking and communicating. She obvious knows so much but has great difficulty expressing herself. I feel there is little being done to find ways to help people like her communicate and I believe there are ways to reach even those who seem the most low-functioning. Please don't give up on these people.

b. New opportunities.
Again, include the entire autism spectrum equally in research efforts. Make sure you are addressing the needs of not only the very young, but also older people. And include everyone equally in the research -- high functioning, low-functioning and low-communicating individuals.

c. Research priorities.
Discovering ways to help low-functioning and low-communicating individuals communicate should be a priority. I feel very little attention has been paid to this area and there are so many people who need help now and in the future.

Respondent 0224

a. Gaps and underrepresented research areas.
The nonverbal have only to look forward to institutions in their futures if strategies are not developed to help them become independent and self-sufficient.

b. New opportunities.
Stopping regression Communication Leisure skills Activities of daily living Meaningful work

c. Research priorities.
Find the enzymes or proteins needed in the brain that will kick-start neuron connections.

Respondent 0232

a. Gaps and underrepresented research areas.
The future needs to plan for functional nonverbal individuals. We are in a new technological age many of these individuals could possibly learn to text message!!! Think BIG

Respondent 0235

a. Gaps and underrepresented research areas.
I have a low-communicating 20 yr son with autism. I have no idea what the future holds for him. His IQ tests at 41. He gets frustrated when he can't get though the barrier that keeps him from communicating. What meaningful things can he do?

b. New opportunities.
The children of autism today will grow into the adults of autism tomorrow. Many of them are nonverbal and low-communicating. How can these people live happy fulfilled lives?

c. Research priorities.
More focus needs to be on developing a lifelong plan for nonverbal and low-communicating people with autism.

Respondent 0236

a. Gaps and underrepresented research areas.
We have a wave of autistic children about to become adults, we have a huge undiagnosed adult population and next to nothing in treatment and services for adults. We need clear numbers: how many people with ASD are there in the US? We need a good picture of the "landscape" in order to advocate for the services, etc.

b. New opportunities.
The future needs to offer some hope to this population. The word hope has been hijacked by those selling a cure. Hope needs to mean an autistic child can get the proper education and skill building to allow them to grow up to reach his or her full potential and as an adult will get the support and opportunities needed for employment, housing and recreation as suited to and desired by that individual. This is after all what we hope for all people!

Respondent 0242

c. Research priorities.
PLEASE survey the middle/high school educational practices, family support initiatives, and student outcomes for the ASD population in all 50 states. I *HUNGER* for information about what I can expect as my child moves through middle school and high school. PLEASE research transition experiences as ASD-affected children "age out" of services. PLEASE survey the ASD population as to what their educational achievements, housing, and job prospects are as of age 25. I *HUNGER* for information on OUTCOMES for ADULTS with ASD. --- THESE STUDIES SHOULD INCLUDE NONVERBAL AND LOW-VERBAL STUDENTS AS WELL AS "HIGHER-FUNCTION" CHILDREN.

Respondent 0244

a. Gaps and underrepresented research areas.
No additional comments...

b. New opportunities.
No additional comments...

c. Research priorities.
No additional commments...

Respondent 0246

a. Gaps and underrepresented research areas.
Bankrupt society, if not treated There must be environmental causes, which need to be detected

b. New opportunities.
Clean up the vaccines, which now contain: mercury (2nd only to plutonium for toxicity), aluminum (another neurotoxin), formaldehyde, aborted fetal tissue, anti-freeze, and other impurities, plus live or attenuated viruses No mandatory vaccines, which are untested, untried, unsafe!

c. Research priorities.
Address this NOW!

Respondent 0251

a. Gaps and underrepresented research areas.
all kids on the spectrum, including low-functioning and nonverbal individuals.

c. Research priorities.
include all individuals with ASD

Respondent 0257

a. Gaps and underrepresented research areas.
SEE 2

b. New opportunities.
SEE 2-c

c. Research priorities.
SEE 2-c

Respondent 0262

c. Research priorities.
Again, noble goals. My son's future depends on successful deployment of public services for the severely disabled. All of these goals are important.

Respondent 0268

a. Gaps and underrepresented research areas.
The future is full of possibilities as we allow these incredible souls to show us the phenomenal gifts that union at a subconscious level has on group and individual thought. Ever present in all of us is divine knowledge, a shared understanding of creation and wholeness. In this domain, we feel centered, calm, at peace. It is a feeling of coming home where everything is tended, a Garden of Eden with all nature's principles in balance for ultimate survival. These incredible individuals can show us the way.

b. New opportunities.
An awakening of consciousness and first hand understanding that the brain is more of a diffusing device than an emanating one. These individuals may always need partners, but oh what intelligent and magnificent partners they make. Although they have been somewhat dependent on my knowledge base, they have expanded my awareness. Just think of what could happen if they were paired with experts in various fields. Wouldn't their understanding also improve.

c. Research priorities.
I hope what I have said is being taken seriously. I know my ideas are controversial, but we can just start with simple telepathic sending of material. Perhaps that is all society is currently ready for. Also I believe that research needs to be done in a way that does not cause any harm to these very sensitive souls. An Aptitude for interaction and love needs to be present. I hope enough people have come forward that you will begin to take the altered states demonstrated by these magnificent souls seriously. I am a retired teacher of many nonverbal children with autism. It has been a remarkable journey. I have much to share! I hope I can be of service! The dance needs to begin! Thank you, [redacted personally identifying information] http://www.ezinearticles.com/?expert=Mary_Ann_Harrington This link exits the Interagency Autism Coordinating Committee Web site

Respondent 0269

a. Gaps and underrepresented research areas.
Communication is the most severe deficit and yet there is not funding for this research for nonverbal kids.

Respondent 0270

a. Gaps and underrepresented research areas.
Please consider allocating funds for research for people with severe autism who do are nonverbal. This subset is the most vulnerable group and in addition requires the most care. Please be equitable in your quest to find a cure for this dreaded affliction.

Respondent 0276

a. Gaps and underrepresented research areas.
Research is needed on individuals who are the most challenged, especially those with speech language issues.

Respondent 0280

a. Gaps and underrepresented research areas.
There is much discussion about the "window of opportunity" for educating autistic people; that is, the emphasis is on early intervention. We need to know how long an autistic person's brain can keep developing--and in what ways. And this MUST include nonverbal and low-communicating autistic people. Are biomedical approaches the best hope for ameliorating the deficits associated with autism? Is brain surgery possible? Are there ways to "rewire" the brain?

Respondent 0281

a. Gaps and underrepresented research areas.
We need a focus on communication strategies that support individuals who are nonverbal or have limited verbal abilities. And just because someone can verbalize their most basic needs...this is NOT enough. Our wants and needs are only 1% of what we communicate each day. I know the other 99% is the soul of our existence. This needs to be the focus of communication research. AAC/technology and access therapies like Facilitated Communication need to be researched and made available to children in the earliest of days. No one should arrive at age 3 without a communication strategy or strategies that allowe their complete participation including the opportunity for a fully included education with their neuro-typical peers.

b. New opportunities.
We need to hear from individuals with Autism (nonverbal) who have been successful using AAC/FC and technology to achieve full participation in thier world. We can learn a lot from hearing their voices. They can provide information about the support services that helped them achieve their goals. I believe true success will come when we partner with individuals who have the label ASD.

c. Research priorities.
1) Identifying individual who are nonverbal with ASD and have achieved success in accessing a fully included education and participation in the verbal world. 2) Studying the therapies that made these individual a success. 3)Making this information available to professionals and parents alike.

Respondent 0289

a. Gaps and underrepresented research areas.
Nonverbal and low-communicating individuals with autism, (often referred to as low-functioning), have been almost entirely excluded from federally funded research. The nonverbal subgroup represents about 15-20% of the autism spectrum and yet there is no research focused specifically on them.

b. New opportunities.
When you combine the nonverbal group with those who can speak but are unable to communicate (low-communicating), this adds up to approximately 50% of the autism spectrum population, yet they are not represented in current research nor is there any research specifically focused on them. Nonverbal and low-communicating people with autism should be included in the Strategic Plan for Autism Spectrum Disorder Research. There are few, if any, interventions that work for these individuals and currently there is no research to develop them. We need research to develop successful interventions for this group.

c. Research priorities.
There is currently no research to develop communication interventions for nonverbal or low-communicating individuals. We need this kind of research now. Almost nothing is known about nonverbal and low-communicating individuals, yet there is no research focused specifically on better understanding this group. In spite of tremendous advances in autism research in the past decade, this group has not benefited from the progress that has been made and little has changed for them.

Respondent 0294

a. Gaps and underrepresented research areas.
Lots of useful information on the development of autistic brains and forms of communication.

b. New opportunities.
The future hold little if nothing is done for all these autistic people.

c. Research priorities.
See above

Respondent 0297

a. Gaps and underrepresented research areas.
Until now there has not been a unified effort to advocate for those who are nonverbal or low-communicating. So now is a great time to begin our efforts to advocate for this group. Sadly, in spite of the huge gains that have been made in the past decade, our kids have not been benefited and there are still almost no interventions that work for our kids and no research to better understand the nonverbal and low-communicating population, their cognitive abilities, genetic characteristics, educational needs or to develop successful interventions. Perhaps most importantly this population needs communication interventions and at present there is no research being done in this area.

b. New opportunities.
Until now there has not been a unified effort to advocate for those who are nonverbal or low-communicating. So now is a great time to begin our efforts to advocate for this group. Sadly, in spite of the huge gains that have been made in the past decade, our kids have not been benefited and there are still almost no interventions that work for our kids and no research to better understand the nonverbal and low-communicating population, their cognitive abilities, genetic characteristics, educational needs or to develop successful interventions. Perhaps most importantly this population needs communication interventions and at present there is no research being done in this area.

c. Research priorities.
Until now there has not been a unified effort to advocate for those who are nonverbal or low-communicating. So now is a great time to begin our efforts to advocate for this group. Sadly, in spite of the huge gains that have been made in the past decade, our kids have not been benefited and there are still almost no interventions that work for our kids and no research to better understand the nonverbal and low-communicating population, their cognitive abilities, genetic characteristics, educational needs or to develop successful interventions. Perhaps most importantly this population needs communication interventions and at present there is no research being done in this area.

Respondent 0298

a. Gaps and underrepresented research areas.
What will become of nonverbal low-functioning children with severe behavior problems as they reach adulthood?

Respondent 0302

a. Gaps and underrepresented research areas.
EVERYTHING FOR THE AUTISM RESEARCH AND IT'S RELEVANT TOPICS ARE UNDERREPRESENTED!! EVERY NEEDS TO BE MADE MORE AWARE OF WHAT THESE CHILDREN/PARENTS OF ARE STRUGGLING WITH! THE IGNORANCE IN THIS WORLD FROM PERSONS ON THE OUTSIDE INCLUDING SOME OF THE TEACHERS TEACHING IN THIS FIELD. THE IGNORANCE OF THE GOVERNMENT COVERING UP THE THIMEROSAL IN THE IMMUNIZATIONS WITH MANY OF US CONTRIBUTE TO ONE OF THE CAUSES NEEDS TO ADDRESSED!!!!

b. New opportunities.
EVERYTHING FOR THE AUTISM RESEARCH AND IT'S RELEVANT TOPICS ARE UNDERREPRESENTED!! EVERY NEEDS TO BE MADE MORE AWARE OF WHAT THESE CHILDREN/PARENTS OF ARE STRUGGLING WITH! THE IGNORANCE IN THIS WORLD FROM PERSONS ON THE OUTSIDE INCLUDING SOME OF THE TEACHERS TEACHING IN THIS FIELD. THE IGNORANCE OF THE GOVERNMENT COVERING UP THE THIMEROSAL IN THE IMMUNIZATIONS WITH MANY OF US CONTRIBUTE TO ONE OF THE CAUSES NEEDS TO ADDRESSED!!!!

c. Research priorities.
EVERYTHING FOR THE AUTISM RESEARCH AND IT'S RELEVANT TOPICS ARE UNDERREPRESENTED!! EVERY NEEDS TO BE MADE MORE AWARE OF WHAT THESE CHILDREN/PARENTS OF ARE STRUGGLING WITH! THE IGNORANCE IN THIS WORLD FROM PERSONS ON THE OUTSIDE INCLUDING SOME OF THE TEACHERS TEACHING IN THIS FIELD. THE IGNORANCE OF THE GOVERNMENT COVERING UP THE THIMEROSAL IN THE IMMUNIZATIONS WITH MANY OF US CONTRIBUTE TO ONE OF THE CAUSES NEEDS TO ADDRESSED!!!!

Respondent 0306

a. Gaps and underrepresented research areas.
well, unless ya'll get off your respective tushes and find the trigger for kids who are regressing, and make it stop, in 20 years, there will be hundreds of thousand autistic adults living on the taxpayers dime in full medical care homes because they can't go the bathroom on their own, and can't be trusted outside a locked ward.

b. New opportunities.
do something.

c. Research priorities.
please.

Respondent 0307

a. Gaps and underrepresented research areas.
Not sure what my son's future will hold. Probably better than most families since we were able to get him into ABA therapy early, and treat him early for the heavy metals in his system. Unfortunately, the future of our next generation is in deep trouble. Especially all those children and pregnant women who will be getting this "safe" H1N1 vaccine. Guess we just have to wait until 1 in 20 children have autism before you take us seriously.

Respondent 0309

a. Gaps and underrepresented research areas.
5 years is too long! These kids will be adults by then! Some already are. In another 8 years, when my son is an adult, there will be so many families with Adults on the spectrum who have not gotten treatment early, that are being cared for by worn out, exhausted parents, who are getting older!

b. New opportunities.
Right now we all function on the "WE CAN'T DIE" Plan. There has to be another option and soon.

c. Research priorities.
Wake up! This is a NATIONAL HEALTHCARE CRISIS! Stop talking about Swine Flu and help us save this generation!

Respondent 0310

a. Gaps and underrepresented research areas.
Studies of vaccinated v. unvaccinated populations

b. New opportunities.
Bring back the plan which recommended that NIH undertake to study of vaccines, vaccine components and multiple vaccine administration in autism causation and severity through a variety of approaches including cell and animal studies and understanding whether and how certain subpopulations in humans may be more susceptible to adverse effects of vaccines.

c. Research priorities.
Do the research now for the study of vaccines, vaccine components and multiple vaccine administration in autism causation and severity through a variety of approaches including cell and animal studies and understanding whether and how certain subpopulations in humans may be more susceptible to adverse effects of vaccines."

Respondent 0312

a. Gaps and underrepresented research areas.
IACC needs more parents here!

Respondent 0318

a. Gaps and underrepresented research areas.
1. The need for outcome studies that demonstrate the efficacy of evidence based programs 2. Research into why if early intervention works then why would we still need services for people into adulthood. 3. Research into the RDI program and how it remediate the core deficits of ASD

b. New opportunities.
I would like to comment on this statement: An overarching goal of ASD research is to enable people with ASD to lead fulfilling and productive lives in the community. If this is your goal then more research should be done on the supposed evidenced based treatments and the question that should be posed is what are they evidenced based to do? If there not evidence that they are remediating the core deficits of autism and therefore not teaching the ability to think dynamically, then there is little chance that these interventions will have any impact in enabling people with ASD to lead fulfilling and productive lives. Teaching static skills, social rules, black and white thinking, scripted responses and routines will not lead to the type of outcome that we are looking for. Programs should only continue to be funded if they are addressing the types of deficits that directly impact quality of life.

c. Research priorities.
Long term objective number 1 and 3 are priorities. Consider RDI within your research. It's goals are specifically quality of life and it is cost effective.

Respondent 0321

a. Gaps and underrepresented research areas.
#1---PLEASE REMOVE DR. INSEL FROM HIS POSITION AT IACC

Respondent 0322

a. Gaps and underrepresented research areas.
REINSTATEMENT OF THE PREVIOUSLY APPROVED VACCINATED/UNVACCINATED STUDY AT A COST OF $6 MILLION. RECLASSIFICATION OF AUTISM AS A MEDICAL/BIOLOGICAL DISORDER RATHER THAN PSYCHOLOGICAL DISORDER. OBJECTIVES RELATING TO THE RESEARCH AND EVALUATION IN INFANTS OF EARLY CO-MORBID BIOLOGIC SYMPTOMS, SUCH AS GASTROINTESTINAL, ALLERGIC, DERMATOLOGIC, CHEMICAL/HEAVY METAL EXPOSURE, AND MITOCHONDRIAL DYSFUNCTION AS PREDICTORS OF AUTISM. OBJECTIVES RELATING TO THE RESEARCH AND EVALUATION IN INFANTS AND CHILDREN OF MEDICAL TREATMENTS FOR SUCH CO-MORBID CONDITIONS LISTED ABOVE, AND THE EFFECTS OF SUCH TREATMENTS ON AUTISM SYMPTOMS.

b. New opportunities.
REINSTATEMENT OF THE PREVIOUSLY APPROVED VACCINATED/UNVACCINATED STUDY AT A COST OF $6 MILLION. OBJECTIVES RELATING TO THE RESEARCH AND EVALUATION IN INFANTS OF EARLY CO-MORBID BIOLOGIC SYMPTOMS, SUCH AS GASTROINTESTINAL, ALLERGIC, DERMATOLOGIC, CHEMICAL/HEAVY METAL EXPOSURE, AND MITOCHONDRIAL DYSFUNCTION AS PREDICTORS OF AUTISM. OBJECTIVES RELATING TO THE RESEARCH AND EVALUATION IN INFANTS AND CHILDREN OF MEDICAL TREATMENTS FOR SUCH CO-MORBID CONDITIONS LISTED ABOVE, AND THE EFFECTS OF SUCH TREATMENTS ON AUTISM SYMPTOMS.

c. Research priorities.
REINSTATEMENT OF THE PREVIOUSLY APPROVED VACCINATED/UNVACCINATED STUDY AT A COST OF $6 MILLION. OBJECTIVES RELATING TO THE RESEARCH AND EVALUATION IN INFANTS OF EARLY CO-MORBID BIOLOGIC SYMPTOMS, SUCH AS GASTROINTESTINAL, ALLERGIC, DERMATOLOGIC, CHEMICAL/HEAVY METAL EXPOSURE, AND MITOCHONDRIAL DYSFUNCTION AS PREDICTORS OF AUTISM. OBJECTIVES RELATING TO THE RESEARCH AND EVALUATION IN INFANTS AND CHILDREN OF MEDICAL TREATMENTS FOR SUCH CO-MORBID CONDITIONS LISTED ABOVE, AND THE EFFECTS OF SUCH TREATMENTS ON AUTISM SYMPTOMS.

Respondent 0323

a. Gaps and underrepresented research areas.
The future, in terms of the success of the Combating Autism Act and IACC, holds little promise of success as long as Tom Insel chairs the IACC. We need leadership from the EPA or an agency who is experienced in assessing the health outcomes in sub-populations. Insel is the wrong man and NIMH is the wrong agency. I would like to see the leadership of IACC put in the hands of an agency like The National Institute of Child Health and Human Development (NICHD) whose mission is clearly aligned with biomedical research for children who are sick or the National Institute for Environmental Health Sciences (NIEHS) whose mission focuses on finding individual susceptibilities and environmental triggers to disease.

b. New opportunities.
An opportunity would be to partner with the Autism Research institute. The doctors affiliated with ARI and recovering many and improving the health and function of many more children with autism. I know eight in my own family and close social circle who have completely recovered or improved dramatically with medical intervention. And I know dozens more in the broader autism community. Hope is real and recovery is possible and we don't need the current state of IACC getting in the way of the intent of the Combating Autism Act.

c. Research priorities.
Start prioritization with looking closely at the treatments that so many children are responding to. Again turn to ARI for this information

Respondent 0324

c. Research priorities.
The merging and linking of databases in the short and long term objectives should be a lower priority than the research to research regarding effective interventions. The overall amount budgeted for adult research should be increased.

Respondent 0325

a. Gaps and underrepresented research areas.
See previous

b. New opportunities.
See previous

c. Research priorities.
See previous

Respondent 0329

a. Gaps and underrepresented research areas.
studying vaccines, their components, simultaneous vaccinations, vaccinating during illness, antibiotics and vaccines, vaccines and mitochondrial disorders, vaccinated vs. unvaccinated

Respondent 0333

a. Gaps and underrepresented research areas.
This is the million dollar question each parent is asking. And the one that frightens us most.

Respondent 0335

a. Gaps and underrepresented research areas.
There is so much missing here, it is hard to list. This area needs MUCH more attention.

c. Research priorities.
This is the most important subject that research can address right now. "What does the future hold? " Autistic adults are already living "the future". Most autistics are adults. We need to have better ways of finding and serving autistic adults. We need to know what different services autistic adults require compared to other disabilities. We need to find this now so that the large number of identified autistic children can look forward to a better future.

Respondent 0336

a. Gaps and underrepresented research areas.
- Development of new therapies based on current knowledge in neurobiology and behavioral sciences - Impact of educating the persons that interact with the ASD subject on a regular basis about the disorder and how can they accommodate to this person's needs for her or his success

Respondent 0341

b. New opportunities.
http://www.ageofautism.com/2009/08/when-vaccine-development-is-family-business-thomas-insels-conflicted-role-on-vaccines-and-autism.html This link exits the Interagency Autism Coordinating Committee Web site

Respondent 0343

a. Gaps and underrepresented research areas.
Better screening for children with genetic predispositions to be damaged by vaccines.

Respondent 0345

a. Gaps and underrepresented research areas.
again- medical interpretations of the children via labs. focus on toxins, environmental exposure (especially mercury ) but a comparative study on vaccinated vs unvaccinated is imperative.

b. New opportunities.
PLEASE replace Thomas Insel with an objective, no ties to vaccines, honest chair of the Interagency Autism Coordinating Committee (IACC)! It is appalling that he has been able to control and withhold meaningful research into the increasing numbers of children being diagnosed with autism. New information sheds light on this conflict and as a result, Thomas Insel needs to be replaced: http://www.ageofautism.com/2009/08/when-vaccine-development-is-family-business-thomas-insels-conflicted-role-on-vaccines-and-autism.html#more This link exits the Interagency Autism Coordinating Committee Web site "HibTITER® contained the ethyl mercury-based preservative thimerosal, a vaccine component that has been at the center of an ongoing controversy in autism. Many organizations concerned over vaccine safety, including many autism groups, have been asking for increased NIH funding for vaccine safety research, including research into the effects of thimerosal."

Respondent 0347

a. Gaps and underrepresented research areas.
I am not certain where you are going with this, but health care including dental is difficult for special needs individuals and even worse for the nonverbal. Employment is difficult to find for those with autism and even harder if you are nonverbal. What will be in place as the individuals grow old? Will there be senior facilities who will take them?

Respondent 0349

a. Gaps and underrepresented research areas.
The future is dim unless there are changes with vaccines.

Respondent 0350

a. Gaps and underrepresented research areas.
The future does not look very bright for people with autism if the IACC doesn't stop dawdling around the vaccine issue. Will you have the guts to get to the truth? History will judge you.

Respondent 0353

a. Gaps and underrepresented research areas.
The vaccine studies have never been done by objective researchers, not affiliated with vaccine manufacture in some very significant way. There are opportunities to study populations of children who have already not been vaccinated, either for religious reasons or by parents' choice, without requiring that any children whose parents choose vaccination not receive vaccines. The studies that have been done need to be reviewed for conflicts of interest, and the science underlying the autism epidemic needs to leave politics and vaccine interests behind. If it turns out that vaccines are harmless, mercury is perfectly safe to inject into infants despite government warnings about fish, removal from paint, etc., and there is no correlation, then we will simply have to deal with a frightening epidemic that could eventually result in the biggest burden on taxpayers in our nation's history. But if there is a correlation, it would be most cost effective to find it, and stop the increase.

Respondent 0354

a. Gaps and underrepresented research areas.
ADULT SERVICES NEEDED

b. New opportunities.
ADULT SERVICES NEED ESPECIALLY FOR NONVERBAL ASD kids-- who need life long support

Respondent 0359

c. Research priorities.
get rid of Insel, as a parent of an ASD child I have absolutely no faith in him as a leader. I want him out. He has ties to the vaccine industry. He will not look into the vaccine autism link. He is useless to me and as a taxpayer I have no interest in continuing to pay his bloated salary. If he has any humility, any shame, he will quietly step down, go away and let us solve this problem. What do the numbers need to get to get his attention 1-10 children? Under his direction we will get there quickly. Insel out, repeat 100 trillion times. We are all saying it, daily. Has he no shame? He is an embarrassment to science and the vulnerable families. Insel out, NOW!

Respondent 0360

a. Gaps and underrepresented research areas.
Unfortunately if we look for our governmental agencies to truly help children with autism, the future looks very bleak.

b. New opportunities.
The opportunities are not new. Families have begged for vaccine research for over ten years. You obviously are not seeking to advance TRUE research and knowledge about ASD.

c. Research priorities.
FUND A LARGE SCALE INDEPENDENT STUDY OF VACCINATED VS UNVACCINATED CHILDREN IN THIS COUNTRY!

Respondent 0362

a. Gaps and underrepresented research areas.
There needs to be changes in IACC in the near future. First, Dr. Insel should step down because of the conflict of interest issues. He first lost the trust of the public last January when he arranged a vote to rescind the vaccine and autism study that was approved in December 08. That vote was underhanded and should not be tolerated. Secondly, in light of the new information that Dr. Insel has developed vaccines and that his brother developed one of the vaccines in question on the autism/vaccine debate, he needs to step down. That is a conflict of interest plain and simple. Please replace Dr. Insel with someone neutral like Dr. Bernadine Healy. Also, IACC needs more diversity and more public members. That would be another important step to regaining the public's trust.

Respondent 0363

a. Gaps and underrepresented research areas.
What happens to more than 1 in 100 kids when parents can no longer care for them?

Respondent 0366

a. Gaps and underrepresented research areas.
The future is dark unless.......... The AAP provides standards that include testing for food allergies and intolerances, Candida, Clostridium, vitamin deficiencies, mineral deficiencies, and heavy metals. The AAP has failed several generations of children in this regard and the insurance companies are profiting from it. It should be considered one of the major sins made in the modern world.

b. New opportunities.
The AAP should provide standards that include testing for food allergies and intolerances, candida, clostridia, vitamin deficiencies, mineral deficiencies, and heavy metals. The AAP has failed several generations of children in this regard and the insurance companies are profiting from it. It should be considered one of the major sins made in the modern world.

c. Research priorities.
1. Fire any AAP person who does not want to do the following change the standards to first include medical testing for food allergies, food intolerances, candida, clostridia, vitamin deficiencies, mineral deficiencies, and heavy metals. Hire doctors for the AAP who are committed to assessing children with these issues and demanding treatment. If they don't they should all be turned in to CPS for child abuse.

Respondent 0367

a. Gaps and underrepresented research areas.
What happens when my 16 year old graduates. She cannot drive a car. She can take some care of herself, but needs help. I have no idea if she can ever hold a job.

c. Research priorities.
I want people to know that my daughter was damaged. I want her to be able to live independently, have a decent job and some meaningful friends. Just like my other two kids who dodged the bullet of autism. Tom Insel needs to resign. We need someone to run this committee who has first hand knowledge of all the facets of autism.

Respondent 0368

a. Gaps and underrepresented research areas.
We need exact numbers on the number of kids that are being diagnosed with autism. We need to know why it is increasing. When my son was born in 1989, our neurologist told us the rate was 1 in 10,000. In the 1990's I heard it was 1 in 250; then I read it was 1 in 166; now the CDC says the rate is 1 in 150. I understand a recent study found that the rate is 1 in 100 now. Of course that's 1 in 100 children -- since boys outnumber girls four to one, it's much higher for boys. I've heard even worse numbers from other sources -- and it is critical we understand what the real numbers are and why autism is increasing in order to plan for the future. I don't believe it's simply broadened diagnostic criteria and greater awareness. That may account for some of the increase, but not all. We really can't wait for the rate to go to 1 in 50 or 1 in 25.

b. New opportunities.
I'd like to see research on how society will meet the needs of all these kids who will grow into autistic adults who will not be able to care for themselves. It seems that there is a collective will to just stick heads in the sand and hope the problem goes away. It won't.

c. Research priorities.
I think it is critical to find out what the real numbers are (the CDC data is almost 7 years old now) -- see what's happening in other countries -- find out why autism is increasing. There is no such thing as a genetic epidemic, so it's time to stop focusing on genetic research and focus on environmental research.

Respondent 0373

a. Gaps and underrepresented research areas.
An accurate count of persons in the United States with ASD and ages, perhaps could be included by research done by the U.S. Census Bureau.

Respondent 0374

a. Gaps and underrepresented research areas.
Just this past year, our New Jersey school district told my husband and me that they thought that Charlie needed to be placed in a temporary residential placement. My husband Jim and I were shocked to hear this. Raising Charlie has not been easy, but it is a vocation that we have gladly and more than willingly embraced. Hearing educators of autistic children (including a teacher, school administrators, and a psychology professor who is an Applied Behavior Analysis consultant) mention such a temporary residential placement for our son made Jim and me know what parents of a previous generation must have felt, when experts such as Bruno Bettelheim told them that the best way to help their child was to have that child removed from them.

Respondent 0375

a. Gaps and underrepresented research areas.
The fact that there is no research going on for nonverbal people. I don't know because I'm not a scientist. We need to know what treatment will help our children's brains function better with. What is causing nonverbal kids to be nonverbal. A better way to spot it before it gets to late to help them.

Respondent 0376

a. Gaps and underrepresented research areas.
a tidal wave of children with ASD will soon be approaching adulthood and drawing SSI . . . adult services are virtually unavailable . . . waiting lists are years long kids are recovering from autism via biomedical interventions families are financially strapped and stressed beyond belief we need help NOW

Respondent 0379

a. Gaps and underrepresented research areas.
The vaccinated/unvaccinated study.

b. New opportunities.
The vaccinated/unvaccinated study.

c. Research priorities.
The vaccinated/unvaccinated study.

Respondent 0385

a. Gaps and underrepresented research areas.
Funding needs to be made available much more quickly than it currently is. To put families on a waiting list for up to two years is to miss a critical time for treatment and intervention. The long-term cost to society of not getting these kids the help they need early is steep. But moreover, it seriously hampers that individuals ability for a happy, productive life. Also, more education is needed on working with individuals with ASD in the schools. These are not 'naughty kids.' They have an impairment and need understanding.

Respondent 0393

c. Research priorities.
In spite of lack of communication being their most severe deficit, there is currently no research to develop communication interventions. We need this kind of research now.

Respondent 0396

a. Gaps and underrepresented research areas.
Relationship-based therapies. I am concerned that the voluminous ABA literature is being judged as valid and more important than is based on numbers alone. Relationship-based data, while it takes longer to generate, is quite informative. It seems to me that there is a frenzy around ABA - that folks want it to hold more promise than it really does. Everyone seems to appeal to the amount of extant literature as making ABA valid.... when the relationship-based literature has much more content within it.

b. New opportunities.
1- Brain changes with development with and without intervention, and with different therapeutic approaches. 2- Adult outcomes given different developmental challenges in childhood. 3-Early identification 4- Different developmental profiles and their developmental trajectories 5-The value of understanding developmental, social and emotional, sensorimotor profiles, and family functioning profiles for understanding developmental outcomes. 6-The importance of establishing a relationship with the child and family to support and predict outcome.

c. Research priorities.
Do not let this field continue to be dominated by top-down, skill-based, and compliance-based approaches to autism. Children and more than a set of skills and many families are not establishing good emotional ties to their developmentally- fragile youngsters. Skill development is NOT what this area needs to attain a deeper understanding of the problem.

Respondent 0399

a. Gaps and underrepresented research areas.
Parents need $$$$$. We are all broke. The future is bleak for children and parents.

Respondent 0400

a. Gaps and underrepresented research areas.
There needs to be studies done to determine what type of environment would best support the needs of people with autism with no or very limited communication. In addition, how will people with autism with limited leisure and life skills be supported and integrated into the community. What type of skills and training will caregivers need? And how will these caregivers be supported and motivated to enter into this field.

Respondent 0403

a. Gaps and underrepresented research areas.
None

b. New opportunities.
None

c. Research priorities.
None

Respondent 0408

a. Gaps and underrepresented research areas.
The future holds millions of autistic adults unless the money goes to treatment and prevention NOW! Research having organic farms tended by autistic adults who have given their lives so that the next generation isn't as sick as they are.

Respondent 0409

a. Gaps and underrepresented research areas.
Job opportunities for nonverbal individuals. Typically, an individual that doesn't have speech excels in written word. There must be research done into how reading and writing develops. Further, how reading/writing can turn into a life-long career.

c. Research priorities.
Adapted curriculum in order to teach the individuals along with typical peers. Teach math, reading, writing, etc. Why not? These individuals deserve it and the majority of them can do it.

Respondent 0421

a. Gaps and underrepresented research areas.
too much too soon...too many biologicals at such a early age ..our most precious resource our future generations. start listening to the parents there observations are credible. we know our babies and kids best.

c. Research priorities.
the future doesn't hold much. does it if we keep going the way we are..

Respondent 0422

a. Gaps and underrepresented research areas.
If intelligent children with autism cannot be taught to communicate effectively they will have to be supported by the system, can never hold a job, must be constantly protected and will certainly be dependent their entire lives. Not much of a future there.

Respondent 0427

a. Gaps and underrepresented research areas.
I'm not sure.....I know most parents are worried about the future of our kids.

Respondent 0430

a. Gaps and underrepresented research areas.
Research on vaccinated vs. unvaccinated children. Research on children who have regressive autism. Research on treatments autism families are finding helpful.

b. New opportunities.
Research on vaccinated vs. unvaccinated children. Research on children who have regressive autism. Research on treatments autism families are finding helpful. The greatest opportunity would be for Dr. Insel to step down and be replaced by someone who has no agenda other than finding truthful answers to the autism epidemic.

c. Research priorities.
Research on vaccinated vs. unvaccinated children. Research on children who have regressive autism. Research on treatments autism families are finding helpful.

Respondent 0431

a. Gaps and underrepresented research areas.
We must focus research on effective communication methods for nonverbal and low-communicating individuals (through access to technology and otherwise) to prepare them to lead independent, meaningful lives and have access to meaningful employment.

Respondent 0436

a. Gaps and underrepresented research areas.
We need to determine if anything can be done for older autistic persons.

Respondent 0440

a. Gaps and underrepresented research areas.
How can the use of surveillance databases be balanced with adult autistics' right to privacy? How do prejudice and stigma (against both autism in particular and disability in general) affect adult outcome and quality-of-life? What can be done to make our society more autism-friendly?

c. Research priorities.
This section is also massively under-prioritized, albeit not to the extreme that section 5 was. This section not only addresses the future needs of today's autistic children, but also the current needs of today's autistic adults- underfunding in this area affects not only the future but also the present.

Respondent 0445

a. Gaps and underrepresented research areas.
nobody know what the future holds

Respondent 0452

a. Gaps and underrepresented research areas.
More research on the long term outcomes of the intervention programs. Do behavioral approaches or developmental approaches that actually address the core deficits of autism lead to a better quality of life?

Respondent 0454

a. Gaps and underrepresented research areas.
Researching best practices in adult services, what is successful and what works.

b. New opportunities.
Based on stakeholder input, publishing a 50 state resource manual for adult services that are successful in helping families and adults with ASD.

c. Research priorities.
Adult services.

Respondent 0458

a. Gaps and underrepresented research areas.
The topic of quality of life for adults living with autism is missing. These individuals deserve to be as happy as possible. Happiness may be hard to define but it includes maximizing daily functioning skills, minimizing injuries and minimizing aggressive or self-injurious behaviors.

b. New opportunities.
Research on how low-functioning individuals can receive appropriate medical care despite limited ability to communicate illness.

c. Research priorities.
I think research that maximizes the daily functioning of autistic adults should be prioritized.

Respondent 0461

a. Gaps and underrepresented research areas.
where will these children live and work as they get older and family is no longer around/available

Respondent 0472

a. Gaps and underrepresented research areas.
This question is, like previous questions, written with the presumption that readers (and Respondents to this document) are non-autistic parents of autistic children. This is not true. Many autistic adults are concerned with these issues, including autistic adults who have autistic children. I agree that the issues covered in this section are important, but this is not just because family members want to know what their children will be like when they are older. These issues are important because autistic adults exist right now, and may need help. We need to be recognized as the primary stakeholders in these issues. Furthermore, our rights and equality should not be phrased in terms of a cost/benefit analysis. Those involved with autism issues need to learn, and put into practice, the simple yet radical idea that autistic people are inherently valuable members of society who deserve basic human rights.

c. Research priorities.
Research which focuses on new services which we might develop for autistic adults is important, particularly issues relating to employment. Autistic people have many abilities to offer, yet our disabilities often make it difficult for us to find and keep regular employment. This is illegal as per the ADA and needs to be rectified.

Respondent 0473

b. New opportunities.
Documentation and analysis of recovered cases-what did they have in common? Is there a biomarker of treatment response?

Respondent 0476

a. Gaps and underrepresented research areas.
IF the blindly naive treatments of misunderstood behavior displayed by frustrated, apprehensive, and worn down children, is reversed, the enlightened future holds many solutions to current nagging problems. The enlightened future also holds promise of converting much of the waste of currently taught-defective consumers, into positive tax payers. Ominously, the unenlightened future holds HUGE COSTS AND WASTED LIVES, if the naivety of traditional treatments based only on said children is continued.

b. New opportunities.
See section VI c.

c. Research priorities.
The SPRATS series, a dual hierarchy is a way to realize the personality of a person with the condition fostering autism or ANY other personality WITHOUT historical assumption and bias. 1. The mind's use-and-need of the body's neurological systems in order to relate to its environment and to think. 2. What makes a personality, combined with the minds use and need of body systems. In order to survive and to function optimally, ANY individual's LIFE NEEDS are required in first things first order. The R-W-N-S-eHa-UA-eHoE-ESaC-IdF-aHa-DHoE-EBI series, is a hierarchy of LIFE NEEDS linked to neurology. Both series combine into an inclusive hierarchy of use/ need for an individual to have a LIFE, NOT A LIFE SENTENCE. IF the full combination is not complete and working well, in order, any small glitch is likely to become an illustration of cubically reentrant Mobius paths, A TANGLED SPAGHETTI BOWL, TWISTED AROUND, UPSIDE DOWN & INSIDE OUT.

Respondent 0477

a. Gaps and underrepresented research areas.
Please make low verbal and nonverbal people with autism part of the Strategic plan! It is so important. Thank you very much.

Respondent 0480

a. Gaps and underrepresented research areas.
School age services in Florida refer to the interventions, such as speech or behavioral therapy, available from ages 3 to 21. School districts provide these services through their special education departments. School-age services focus on facilitating academic education and, by age 16, a plan to transition into adulthood. The school 's special education department is tasked with preparing an Individualized Education Program (IEP). The IEP describes a child's strengths and weaknesses and sets goals and objectives. It also describes how the school will provide the appropriate services. By law, these services must are provided to students at no cost. Families are encouraged to remain involved, even after the IEP is established, by staying in contact wit

b. New opportunities.
Florida's Transition Project through the Florida Department of Education focuses on assisting communities in developing smooth systems to help families with young children who have disabilities and special health care needs move from one agency or program to another.

c. Research priorities.
Other organizations, such as Quest Inc., a nonprofit organization serving people with developmental disabilities in Central Florida, manages the Florida Autism Center of Excellence (FACE). Quest helps people with disabilities achieve their dreams of going to school, having a job, living on their own, and experiencing summer camp. As one of Florida's largest provider of these services, Quest serves more than 1,000 people each day.

Respondent 0481

a. Gaps and underrepresented research areas.
Research on transitions in life should include an investigation of the effects of community attitudes on outcomes, as well as the specific services and supports available; it seems logical that an accepting and understanding community would make successful transitions more likely, and research to that effect would go a long way toward improving community acceptance.

b. New opportunities.
The first paragraph of this section provides an excellent statement of the importance of longitudinal studies and improving public understanding and community supports to foster acceptance, inclusion, and appreciation of Autistic citizens. Unfortunately, the second paragraph, characterizing each Autistic person as a huge financial burden to society, is unfounded (in light of the absence of longitudinal studies that would establish the lifetime costs and contributions of each Autistic person) and runs directly contrary to accomplishing the goal of social acceptance of diversity. We need more studies on services, supports, and long-term outcomes, accomplished in a manner that respects the dignity and value of each Autistic citizen.

c. Research priorities.
Large-scale data collection on Autistic adults is problematical because many such adults do not have a diagnosis and, because of fear of discrimination, would not wish to obtain one or to be included in such a database. As a result, any such data would be seriously skewed. I suggest that a much higher priority be placed on services and supports research, specifically addressing quality of life issues, as well as on longitudinal studies showing what factors are likely to contribute to positive long-term outcomes.

Respondent 0484

a. Gaps and underrepresented research areas.
If we continue with the same old ABA/DT, then we can expect the same dismal results. Hope for the future will come from approaches that accentuate the positive and remediate or accommodate the weaknesses.

Respondent 0485

a. Gaps and underrepresented research areas.
More children with autism is there is no change in course. Make the changes that many of us are recommending.

Respondent 0489

c. Research priorities.
I would like to see a lot more research for and programs developed for nonverbal and low-functioning children. Their needs are so great. I feel that there is so much more that can be offered for them.

Respondent 0493

a. Gaps and underrepresented research areas.
The future looks pretty bleak when people who have blatant conflicts of interest family members who patented vaccines and have no toxicology background stating that thimerosal is safe are out numbering parents in the committee to recommend how and what direction the research should be directed. Did we learn nothing from the total economic breakdown when we let the fox guard the chickens. These are children we should be completely ashamed we let it get this far.

b. New opportunities.
We better get some services in place parents won't live forever and at this rate it will be one in every two before someone looks at what the majority of the parents say He/She was fine until this or that vaccine.

Respondent 0494

a. Gaps and underrepresented research areas.
My heart aches for those with adult children on the spectrum. These people had very little to nothing in terms of support and resources. They are still on the outside. I'm happy to hear that you realize that and are making changes. I hope and pray my son will grow to be a happy productive member of society but I'm scared to death.

Respondent 0501

a. Gaps and underrepresented research areas.
Research ways organizations/governments can facilitate autistic adults' contribution to society. Facilitate interaction with and being a recognized, welcome part of society. Build acceptance and accommodation for autistics in communities.

b. New opportunities.
Consult with autistic adults about what they need and how research can help them!

c. Research priorities.
Focus on acceptance, inclusion, and quality of life. Focus on facilitating contributions to society.

Respondent 0502

c. Research priorities.
Important: "The scope and impact of ASD in adults, including how to diagnose ASD in adulthood, their needs during critical life transitions, assessment of functional and legal outcomes, family relationships, and co-occurring health issues."

Respondent 0505

a. Gaps and underrepresented research areas.
An IACC committed better balanced on the controversial subject of vaccine-induced autism is necessary.

b. New opportunities.
Tom Insel must go as he has abused the public's trust in the IACC.

c. Research priorities.
Tom Insel can step down with grace now or be removed.

Respondent 0507

Helen McNabb

a. Gaps and underrepresented research areas.
Understanding the role of the public school system and students with ASD. Improving support services for secondary education such as: Free tutoring, access to special accommodations, making it mandatory to inform disabled students of their legal right to free tuition. Also, the need to Increase ALL PUBLIC SERVICES - the dollar amount of the SSI, SSDI benefits to allow those with ASD to get the various services/supports needed to sustain them such as: Psychological Assessments, Neuropsychological Testing, Special Education, a Power-of-Attorney, guardianship, and therapies in Speech Language, Occupational, physical therapy, and legal representation with special ed. The parents are supporting these adults in ALL AREAS OF LIFE and won't be able to sustain them much longer.

b. New opportunities.
Educating the entire public beginning with the local, state, and federal gov., especially, those directly in contact with adults of ASD such as: Educators, police, physicians, psych., and group home facilitators so they are better equipped in understanding the symptoms of ASD, especially, in critical situations. Educating children and adults in all schools to reduce stigma. Improving health support services by allowing Medical Assist. to pay for the private ins. premiums already in place. (The adult w/ASD cannot drop the private insurance they started with prior to being diagnosed because of being rejected later with a pre-existing condition.) Solution: Medical Assistance could pay the premium in lieu of paying medical bills. This allows the private insurance to remain in force until the person becomes independent and withdraws from Med. Assist.

c. Research priorities.
First, identify those adults with ASD who are already in the Social Security Administration's database. Second, address their needs - financially, educationally, medically - short & long term care. Third, address the very last "long-term objective" on page 24.

Respondent 0508

a. Gaps and underrepresented research areas.
People with ASD want to live a meaningful life, just as you and I do. What is available once children leave school and enter the adult service system is bleak, especially for those with complex needs. How do we look at the individual needs of people and give them choice and opportunity within their community, not just within a congregate setting. Once nonverbal people are now typing and telling us it is just their beastly bodies doing things they can't control and it has no reference to the person and their desires, locked inside. So much more research on this needs to be done to validate what these people are saying. It needs to be demonstrated so people have a voice and are not simply judged on their behavior. Then they will have access to the community and world they want.

b. New opportunities.
Just what I said. Nonverbal people need to be incorporated into the studies. More and more nonverbal people are typing and telling us what they want, yet they are viewed on Dateline as "medical mysteries"! It is there before our eyes, yet people don't want to believe it. do the research, give these people voice and therefore some control over there lives so they have meaning.

Respondent 0509

a. Gaps and underrepresented research areas.
"Conduct at least two clinical trials to test the efficacy and cost-effectiveness of interventions, services and supports to optimize daily functioning (e.g., educational, vocational, recreational, and social experiences)" This is great, but you should also include biomedical treatments. For example, the GFCFSF diet makes a huge difference for some people in daily functioning, behavior, communication, and cognition.

b. New opportunities.
Include studies on biomedical treatments for adults.

Respondent 0510

a. Gaps and underrepresented research areas.
This is an epidemic-WHY?!

c. Research priorities.
same!

Respondent 0514

a. Gaps and underrepresented research areas.
Future looks like full jails and insane asylums. DO NOT SPEND RESEARCH DOLLARS ON BEHAVIOR. I DON'T GIVE A FLYING PIG! You got the WRONG PRIORITIES. Fire everyone on the committee that does not have an immediate family member with Autism. Research ischemic and environment events only. Do the vaccinated vs unvaccinated study.

b. New opportunities.
Future looks like full jails and insane asylums. DO NOT SPEND RESEARCH DOLLARS ON BEHAVIOR. I DON'T GIVE A FLYING PIG! You got the WRONG PRIORITIES. Fire everyone on the committee that does not have an immediate family member with Autism. Research ischemic and environment events only. Do the vaccinated vs unvaccinated study.

c. Research priorities.
Future looks like full jails and insane asylums. DO NOT SPEND RESEARCH DOLLARS ON BEHAVIOR. I DON'T GIVE A FLYING PIG! You got the WRONG PRIORITIES. Fire everyone on the committee that does not have an immediate family member with Autism. Research ischemic and environment events only. Do the vaccinated vs unvaccinated study.

Respondent 0519

a. Gaps and underrepresented research areas.
Increase budget for merged/linked databases for tracking involvement of ASD people inclusive of ARI/DAN clinical data.

b. New opportunities.
Increase clinical trials on efficacy and cost-effectiveness of interventions, services and support to optimize daily functioning to 10 trials.

Respondent 0520

a. Gaps and underrepresented research areas.
Relationship Development Intervention (RDI)

b. New opportunities.
I believe that Relationship Development Intervention is the gold standard in Autism treatment, and research studies have shown that this is not an experimental treatment by any means.

Respondent 0521

a. Gaps and underrepresented research areas.
examine exceptions to the rule. Low and nonverbal people with autism who have defied the stereotypes and succeeded

b. New opportunities.
innovation in low and nonverbal children with autism. The future should not be limited to high functioning verbal people with autism.

c. Research priorities.
life long perspective; dignity for all levels of autism. Study low and nonverbal people with autism and the culture of both success and failure they exist within. Study from an anthropological perspective

Respondent 0524

a. Gaps and underrepresented research areas.
We need to remember that today's ASD children are tomorrow's ASD adults. These adults will continue to need support. They will also inherit a place in this very conversation, and they deserve a voice as early as they are able to advocate for themselves. It's important to realize that many of our children will one day be able to read what we are writing about them in these conversations. Are we respecting their personhood, or are we merely treating them as passive victims? Are we asking them what they want for their own futures? After all, they're the ones, ultimately, who will be living with an ASD.

What Other Comments Do You Have About the IACC Strategic Plan for ASD Research?

Respondent 0013

Eileen Nicole Simon
conradsimon.org This link exits the Interagency Autism Coordinating Committee Web site

Developmental language disorder is the core handicap of children with autism. This needs to be the priority for research on autism. Children learn to speak through hearing. Auditory processing disorders need to be looked for. Evidence published decades ago revealed the vulnerability of the auditory system to injury from any factor that disrupts aerobic metabolism. Perinatal anoxia, prenatal exposure to toxic substances like alcohol or medications like valproic acid (Depakote), and postnatal treatments including vitamin K, antibiotics, and vaccine administration can lead to impairment of metabolism in the auditory system. Every perinatal intervention should be investigated as a possible root cause of injury.

Respondent 0016

Contact me. [redacted personally identifying information]. I'm happy to contribute to the discussion via conference call. My son has a pretty good life for having severe autism, but I can't do this forever. We introduce him to others through his microboard. He is a human being and deserves a quality life even after I'm no longer able to pull all the strings together every day, hourly, etc.

Respondent 0017

There is no other disorder of which I am aware where even the most far flung; obtuse, undocumented treatments are legitimized through "labs" and treatments. Replication studies, Meta analyses, literature reviews are essential for maintaining the health of families of children with autism. Families are the core means of support for these individuals throughout their lifetime and research should be aimed where it will do these individuals the most good. What is pragmatic should supersede what is "interesting" and our funding of research should reflect this emphasis.

Respondent 0018

You involvement in this process should be viewed as an honor. You should not want to do anything else. Hundreds of thousands of children and many more waiting to be born depend on it. Don't let petty politics or favoritism to industry get in the way of you doing your mission. The cause and solution is out there. The pieces are falling together and children (including my own) are already being helped. It is your job to make sure the money is there to put the final pieces together and save this generation. DO IT.

Respondent 0022

There are lots of research plans, there is no care. What good is the research then?

Respondent 0023

John Best
Hating Autism blog

In all this time, you haven't done a [profane language redacted] thing besides having useless meetings. Stop wasting time.

Respondent 0029

A key priority is what model of health care delivery is going to work for people with autism, especially adolescents and adults. This is a blind spot in the system.

Respondent 0031

Please do something to help adults with ASD. In my state no matter how impaired an adult with ASD is he can not get care unless he also is low IQ. In fact until a couple of years ago the top State of Vermont autism experts insisted that a low IQ (below 70) was required to qualify as autism. Now I am told his current testing qualifies him as having autism and needing services but he doesn't qualify for services because he is too rich at a few dollars above Medicaid level.

Respondent 0035

I think it is also very important to research social skill development and functional skill development for the workforce. Talk to children, adolescents, and adults who are on the spectrum and determine what skills are the hardest for them to learn and how they would prefer being taught those skills. Research current social skills curriculum to determine which are the most effective.

Respondent 0037

We need to look at the people on the board and get rid of the persons with a conflict of interest, and people that are there under false pretense like the former vice president of Autism Speaks.

Respondent 0038

Do the right thing. Search for truth. Recognize and discredit propaganda. Understand motives that certain groups have. Don't be intimidated. Thank You, Greg Powell, RPh Savannah, GA

Respondent 0042

Question 5 and six are by far the most important. Too much focus is being put into the children who aren't born yet that could have autism. Not enough focus is being put on adults with autism, or the children who are faced with lack of quality services.

Respondent 0046

More families should be involved in the IACC Strategic Plan.

Respondent 0047

I suggest that the IACC stop making the situation worse by ignoring and/or sabotaging the efforts of parents to speak to these issues from their true life experiences, and start listening to them. The pharmaceutical companies are NOT interested in any solution that would eat into their profits. Allowing this committee to be controlled by people who are on the payrolls of or being contracted by them is a travesty, and completely ignores the intent of Congress when the committee was authorized.

Respondent 0049

Research HFA. Generally the individuals who are high functioning don't get much attention because their symptoms don't cause seizures or chronic pain. But much, much more needs to be learned about how they communicate and how we can communicate with them. And research it as a condition, not a disease or a disorder. It's not a tragedy; it's a challenge, no doubt, but one we can meet if we know what we're doing.

Respondent 0052

I feel that the real issue here is what is going to be most helpful. Much of the areas touched on here have had plenty of research done, but no easily accessible results. I think the most helpful thing that can be done would be to compile the research into a centralized accessible database so that the ASD community would have easy access to reliable information, but more importantly it needs to be done an objective way so that even things that don't seem to work are represented or the widespread confusion that exists now will only get worse.

Respondent 0054

I believe that persons like Ari Ne'eman and Katie Miller who are opposed for a cure for autism should not be allowed to present their views before the IACC. Nor should anyone else who preaches against a cure and prevention of this disorder. I also believe that Stephen Shore should no longer be a public member of the IACC and you should instead appoint someone who is on the spectrum and wants a cure and prevention of this disorder instead. More than one person like this would be a good idea. Also Stephen Shore and John Robison should not be allowed to review research that goes to curing autism at public expense as they are not qualified and they are not in favor of curing autism. Also Morton Gernsbacher's funding should be discontinued immediately.

Respondent 0055

We are at an exciting point in creating long term care options. Long term care is the biggest cost of ASD, but because many parents are dead or burnt out, there is not the advocacy that there is for children. We have to understand the lives and needs of the older population, all the children will be joining them at some point, but right now it is almost uncharted territory.

Respondent 0057

Focus more evenly on progressive interventions for the population at different age levels and not just on prevention

Respondent 0059

Vaccines and esp boosters are the problem, Tom Insel's brother made a lot of money from the invention of the Hib. Tom Insel should excuse himself and let the real truth come out.

Respondent 0060

Mission/Vision statement absent of NIH values on causation, recovery and prevention - integrate. Cross-cutting themes absent of recovery statement - recovery is possible - integrate. Introduction: ASD "is" a national health emergency, not an "emerging" emergency. Higher degree of meaningful public participation via a DOD CDMRP model and Autism Advisory Board is necessary - implement/recommend. Include environmental factor/toxic load screening in early detection. Re-engineer funding process to include allocation of research initiatives among special interest panels to continuously fund through program announcements and other innovative grant-making initiatives - "innovation fund" and process - responding to new research and treatment opportunities. Convene workgroup/workshop to justify substantial increase necessary in research budget based on "cost of disease" model and opportunity in the scientific/clinical communities to perform high-quality research.

Respondent 0074

Why is IACC under NIMH when it is a physical illness? Everything I have read about the IACC indicated you people are about as useful as [profane language redacted] on a bull. I hope whoever reads this will excuse my anger, but you'd be angry too if your child was taken from you in the cruelest way possible.

Respondent 0075

Our experiences working with adults with the NEUROLOGICAL CONDITION THAT CAN AND DOES RESULT IN AUTISM, indicate that IF enough of the SPRATS of an individual with the condition are observed, appropriately studied and understood on their own AND as to their interaction with the individual's real LIFE NEEDS, that with APPROPRIATE recognition, encouragement, and experiential-education, and confidence, there WILL be HIGHLY INFORMATIVE, HIGHLY USEFUL, and HIGHLY MARKETABLE PATTERNS THAT EMERGE.

Respondent 0077

I personally believe way more resources need to be dedicated to quality of life issues, rather than seeking "prevention" or "cures." I think that if the money were spent in such a way, we would be able to gain more "bang for our buck" and autistic persons, who are capable and willing, would be able to be contributors to our society, rather than be perceived as drains on it.

Respondent 0095

I have attended two sessions in DC and truly appreciate the work and effort being made. However, I find that each time I watch either by computer or in person, there is not enough urgency placed on getting things going. This is a huge issue and we need the answers NOW. This group has the potential to make a difference in so many families' lives and I just hate watching the ongoing lack of progress. Where is the accountability?

Respondent 0102

DO THE RIGHT THING! Autism is rampant, and can't be caused by genetics alone. Don't waste more money on genetic research - start looking at the environmental triggers causing this horrific epidemic. When thousands and thousands of parents tell the same story of a child who suddenly became ill and regressed into autism following a series of vaccines, you need to LISTEN to them. If one in 100 kids were suddenly going blind, and it happened right after they had a series of vaccines, would you say that was just a coincidence? Or would you do the right thing and look at the vaccines as a probable cause? INDEPENDENT research! Throw out all the [profane language redacted] studies bought and paid for by the drug companies (yes that includes anything done by the CDC) and look at the true science done on vaccine damage. Study health outcomes of vaccinated vs. unvaccinated kids! This is the study the vaccine companies fear the most - because they know as well as you and I do what it will reveal.

Respondent 0105

Bridge the gap between research results and their implementation in the ASD communities. Unfortunately I had no time to make more comments please, post my comments as well as my name. Dr. Linda-Angelique Papadimitriou-Varsou, PhD, MPH, DABCC, Mother of a 24 y.o. son with autism. Currently Assistant Professor at the University of Athens School of Medicine in Greece, Immunologist, Hygienist and Clinical Biochemist, trained in the US at the University of Maryland School of Medicine and at the Johns Hopkins University School of Medicine and Kennedy Krieger Institute in neurosciences and autism. Advocate for the rights and strengths of persons with autism, Board and founding member of the Greek Society for the Protection of Autistic People, long standing member of the Autism Society of America and its Baltimore-Chesapeake Chapter, Member of the Autism-Europe and of the World Autism Organization. 3801 Canterbury Road, Baltimore, MD 21218, E-mail: varlin1@yahoo.com

Respondent 0116

I hope this agency will be able to effect change to allow new medical treatments to be covered by health insurance, including behavior therapy.

Respondent 0131

We suggest that the terms "speech-language therapy" or "speech-language pathology services" be used in place of speech therapy as it is a better reflection of current terminology used in the profession. Additionally, we would suggest that there be a balance to research initiatives to examine both behavioral/ social issues as well as the biological and neurological issues.

Respondent 0133

Go to the families...find out about their experience...and those who do the work on the ground. Accept the many experiences as part of the puzzle. Now that the immune vaccine fund has paid out its first client for immunizations which triggered autism, (Hannah Poling) it is time to stop the obfuscation and gather the data... ASD has become a political diagnosis instead of a developmental diagnosis and it needs to get out of the political arena.

Respondent 0134

As mentioned, I do not know whether the IACC Strategic Plan for ASD Research included vitamin D, but I would guess that it did not. Vitamin D has only recently become very important in so many disorders, that I do not believe it has been considered by the committee.

Respondent 0136

Read the book Habakkuk in the Old Testament and have faith. The righteous live by this (2:4). Those involved all have good intentions. I have prayed for this for many years. Those who sit on these "panels" are all "representatives" of an agency, view or someone involved from a personal perspective. This is good. Add someone to this group who listens, prays and God will reveal His purpose in this "illness."

Respondent 0141

Language is important and can be hurtful. Please gain input from Autistic people to prevent using insulting, degrading language. Please respect our rights as human beings to be treated, referred to, and spoken about with dignity. It's already bad enough to be spoken about, and frequently spoken for, by people who are not one of us. Please allow us the freedom and power to choose what is said about us and in what way. We all have thoughts and feelings.

Respondent 0148

In my opinion, the ABA research and political initiatives in state legislative bodies has placed them in an awkward position. They appear to be advocating insurance reimbursement only for ABA services for ASD and related disorders. The insurance industry, medical and all professions associated with treating at risk children are all pledged to present a choice of reasonable treatment options. ABA is advocating legislation that would make them the only viable choice. Secondly, they now have begun claiming that their methods includes all the features of distinctly different treatment approaches to ASD, etc. By doing both, they have pitted themselves against the greater scientific community when they could be collaborating and sharing perspectives with other approaches to successfully treating at risk children of all ages.

Respondent 0149

This contains a lot of great ideas and suggestions for research studies, but not much practical information. There should be a federal website that links all the state websites on autism and that lists all the services that are available to people with ASD, with links to those services. There should be SOME coordination of services and schools among all states. This is lacking. There should also be something that addresses the LACK OF TRAINING among educators in the mainstream schools, among law enforcement personnel (police, judges, etc...), among healthcare providers (doctors, nurses, dentists, EMT, aids), among transportation personnel (bus , train , airport security, airline personnel), among sales staff in retail stores and food establishments, among postal workers - on how to deal effectively with people with ASD. I also didn't see anything about studying where adults with ASD will live and who will care for them. Needs of adults with ASD isn't strongly addressed.

Respondent 0151

Thank You!

Respondent 0152

I think that the IACC Strategic Plan for ASD Research is a long-needed and very positive way to solicit current information about ASDs from multiple disciplines, as well as from families and individuals directly affected by ASDs. The commitment to annual review and updating is also encouraging, as is the relative easy accessibility to the forum via the computer. No one is left behind, so to speak, who has an interest in adding their thoughts, wishes, frustrations, as well as new ideas and suggestions for augmented or even brand new avenues of research into the many facets of Autism Spectrum Disorders.

Respondent 0153

I have really one thing to say, that I became concerned two days ago that ultrasound events might be linked to autism. I'm not a researcher, but I would very much like to be reassured that this research has been done. I feel like there was research done 16 years ago (Campbell 1993) showing a possible link and animal studies done three years ago (Ang, et al 2006) showing another, but that this area is deeply under researched.

Respondent 0154

Autism is treatable and what is worse is that it is PREVENTABLE.......Our own ignorance and arrogance to this medical issue is creating a generation of disable people, to which our society will not be able to sustain. Stop over vaccinating.....stop overusing antibiotics.....check titers....

Respondent 0157

Thank you for the opportunity to comment.

Respondent 0161

It's about freaking time to get yourselves in gear. According to the soon-to-be-released prevalence study, 1 in 38 boys is now autistic. You need to be running around like your hair is on fire, not calmly re-examining the same old medical theories from 40 years ago.

Respondent 0168

I am not sure where this goes, but we really need research to help with tools to measure and identify people who truly have a disorder or disability, as in an Autism Spectrum Disorder from those that have features of, past, or more mild, but not impairing symptoms of an Autism Spectrum Condition. Since there is a continuum in ASD, the line from disorder to features has large implications for resource use and the debate on whether autism is increasing.

Respondent 0173

Thanks for working on behalf of kids like my son.

Respondent 0176

Thank you for this valuable opportunity to provide feedback regarding ASD research and strategic planning. Like many parents of children with ASD, I have spent my life and my life's savings assisting my son in gaining critical abilities that were stripped by autism's continuous, pervasive, regressive insistence. As my son reaches middle school, he perches on the last window of opportunity to develop the social skills necessary to move on as an independent, employable, fully capable adult. He speaks, but he has no friends. He has interests, but cannot carry on a two-turn conversation. There are precious little resources to assist me in assisting him and so much ground to cover. We availed ourselves of every intervention that I could afford. He made progress that made autism tolerable, yet I look at the boy who is taller than me now and see the ongoing level of support he requires to navigate the world. I pray for him and his cohorts, working to create a world that works for them.

Respondent 0177

It is my opinion that the parents need more help. Many communities don't have enough support for the children and families. Many move to areas where more help is available which then puts stress on that community that may already be serving more children than they can afford. There should never be a waiting list, a waiting list is time lost for the child, and in a many cases it makes it impossible for the child to catch up or progress. I feel that immediately after your child receives this diagnosis every option should be readily available to them. I also believe that parents like myself should be offered some kind of mental health support or financial support as autism changes the entire life of the family. I am a single Mom raising a son with autism who is nonverbal and as well as a son with Asperger's. I have been financially and emotionally devastated and those are both difficult to overcome without appropriate help. We must study the affects this has on the parents and help them.

Respondent 0178

Words can not express the depth of my anger and bitterness toward the IACC! That statement may allow committee members to justify their ability to dismiss parental concerns about objectivity. From my perspective, I would rather have my passion and some compromised objectivity than have the debilitating disease of denial afflicting many IACC committee members and especially Dr. Insel. Please get rid of Insel. I will continue to pray for the committee members for the courage to face their worst fears, because those fears are true, and may God bless Dr Insel.

Respondent 0181

SPAN's foremost commitment is to children with the greatest need due to disability; poverty; discrimination based on race, sex, or language; geographic location; or other special circumstances. It is from these perspectives, the perspectives of the many families we assist, and our own experiences as parents of children with special needs, that we are sharing these comments. Personally, as the Family Voices Coordinator for New Jersey, I am the parent of a child with multiple disabilities, including autism. Our Mission: To empower families and inform and involve professionals and other individuals interested in the healthy development and educational rights of children, to enable all children to become fully participating and contributing members of our communities and society.

Respondent 0184

It would be helpful to let people know how much money is available, over how many years it is to be spent, what the process will be of applying for/granting money, whether the projects approved will be posted someplace (for all to know about) and how the results will be presented. That is, let us know the "flow" of the task before the IACC, especially relating to project approval and money distribution.

Respondent 0187

Please include more nonverbal subjects in your research. No research has been done on this group. This is a critical area that is missing from the autism research 'road map'. It is critical that cognitive testing for this group be developed.

Respondent 0194

We believe that the strategic planning process would be improved with input from federal agencies that do not currently participate on the IACC. Although the mandating statute for the IACC makes the committee responsible for "monitor[ing] Federal activities with respect to autism spectrum disorder," only the representatives of the Department of Health and Human Services and the Department of Education attend IACC meetings. Seeking the input of the Department of Labor and other agencies whose activities affect the lives of people with autism would augment the IACC's efforts to develop a strategic plan for autism spectrum disorder research.

Respondent 0195

I am frustrated as a parent whether it is research or community based programs little is being done to help my nonverbal quote unquote lower functioning 10 yr old boy. Time is ticking and as a parent I will need to make choices about my son's future that no parent should have to make - group home or residential home as an adult when I can no longer care for him. Do the research now and help me give him and others like him and children in the future a fighting chance. Do not let Autism keep him silent forever. Why does he not have a voice - I NEED TO KNOW - why does he find it so hard to communicate his needs to us - I NEED TO KNOW. What happened to my little boy who said "MAMA AND DADA" and clapped and smiled for the camera, where did he go? On his birthday every year - we celebrate - his life, his love, his hard work and buy his favorite things. However alone in my bed at night I cry on his birthday because I am a year closer to making choices about his future. HELP US!

Respondent 0199

My family has paid our taxes, supported many other organizations, exercised our right to vote etc. My husband works 60-70 hrs per week to support our family while I stay home with our PDD son. Who is 20. We receive little to no support from agencies. In fact he has been kicked out of 2 programs because there are no proper day programs for him due to his autism. We need help!

Respondent 0200

Please help the nonverbal children and adults.

Respondent 0202

All children are different, with different needs....please do not leave our children out, that have no voice!!!!!! Have a heart.

Respondent 0203

My experience has been that finding a communication system that works is the single most important factor in a child's success. Once they can let us know what they think and feel, we can find ways to change the environment, challenge them intellectually, and truly include them in their family, school and community. Facilitated Communication has been highly controversial, and has been totally dismissed by many. In my experience, it has changed lives dramatically and deserves further study.

Respondent 0208

Please remember our children on the spectrum who are very intelligent but nonverbal- they seem to be the forgotten ones in this whole process

Respondent 0210

Many of our young adults with autism could be living independently if there were a subsidy or other financial assistance for them and their families. Too many disabled adults live with their parents and never have the opportunity to learn the skills required for independent living. When family members pass on, these folks are left to the care of the community in expensive nursing and care homes. With proper assistance and training, many can learn to live independently with minimal supports. We urge the IACC to consider housing and related services for adults with ASD to be a priority area for this research agenda. While it's critical to strive for more information concerning individuals under 22 years of age and we do support much of what has been presented in the IACC strategic plan, we're concerned that not enough research is dedicated to understanding how to best support older individuals who have equally intensive needs and are often without supportive environments.

Respondent 0215

So much emphasis seems to have been placed on the needs of the very young (which I completely understand, because if we can intervene when they're young hopefully we reduce or eliminate the needs as they get older). However, we have a whole nation of aging adults with autism! Also, the needs of those who are nonverbal (what some might call) seems also essential when looking for causes or cures. My typical son desperately wants to know if he is a genetic carrier and what his chances are bringing more children like his sister into the world. How can we help people like him??

Respondent 0221

focus on medical aspects of autism. Healing the gut should be the first priority.

Respondent 0222

If a person can beg, I am begging you to please not forget those who are beyond the early intervention age. Our children deserve to be included in research. There seems to be so very little said about services, research or resources once kids get older. And there also seems to be little being done to help low-communicating people. I believe there are ways to help these people communicate and we need research to discover them. Don't forget us, and there are a lot of us who need to be a part of the research and planning.

Respondent 0224

Why is there a spectrum of ASD? What is the difference in the brains of the high and low-functioning? Find out what is missing and in the meantime, above all, do more research on the 20-50% of those most in need of help.

Respondent 0229

Until now there has not been a unified effort to advocate for those who are nonverbal or low-communicating. So now is a great time to begin our efforts to advocate for this group. Sadly, in spite of the huge gains that have been made in the past decade, our kids have not been benefited and there are still almost no interventions that work for our kids and no research to better understand the nonverbal and low-communicating population, their cognitive abilities, genetic characteristics, educational needs or to develop successful interventions. Perhaps most importantly this population needs communication interventions and at present there is no research being done in this area.

Respondent 0231

The IACC needs to be more inclusive of individuals across the autism spectrum. Autism is not one condition, and one size fits all does NOT apply.

Respondent 0235

Please do not forget those autistic people without a voice of their own! Nonverbal does not mean that someone has no feelings or worth. If you have a difficult time expressing yourself you need MORE help and research done for you, not less. Children grow into adults. More focus needs to be on what to do once someone hits their teens and twenties and beyond. Just because someone hits 22 does not mean that all hope should be lost. What works for the nonverbal adult with autism? The world will want to know this one day as more of these people present themselves.

Respondent 0236

There needs to be a very clear and loud message that autism is not just a childhood condition, it is lifelong, and the sooner we start thinking of providing support and services for the lifespan we will be able to move ahead! What research is being done can have a huge impact here!

Respondent 0237

Please research the connection between prenatal ultrasound and autism.

Respondent 0241

HELP US!!!!!!!!!!!!!!!!!!!!!!!!!! HELP THOSE WHO CAN NOT HELP THEMSELVES!!!!!

Respondent 0243

As a parent of two children with autism who are nonverbal and considered low-functioning, I would like to encourage the committee to support new research into this sub-population of ASD. Specifically, research is needed that would address communication deficits and that could lead to the development of effective interventions for low-communicating and low-functioning people with autism. In addition, I encourage the committee to support studies that are designed to include low-functioning people with autism.

Respondent 0244

No additional comments...

Respondent 0246

Address this now! Parents largely see regression after vaccines. Others with autism from birth - parents may have gotten vaccines, infections, dental mercury, etc... High neurotoxins Clean up our environment - no mercury, and make our vaccines safe. More vaccines is not the answer, nor is more pharmaceutical$ the an$wer

Respondent 0256

Research the work at http://www.liafoundation.com This link exits the Interagency Autism Coordinating Committee Web site it is top notch and the future of research in autism. Dedicate work to the nonverbal or those with limited verbal through augmentative devices etc.

Respondent 0257

Responses are on Section 1, 2 and apply to all sections. Key point: Optimal health and maintenance: Believe valuable to defragment medical care and at the same time make it more comprehensive; traditional plus alternative medicine with regular attention to nutrition and diet. Good for everyone, especially the autistic with a complex and sensitive immunological/medical profile. Research directions: CHROMOSOME 6. (SEE 2 -c; GI, autoimmunity, etc.)

Respondent 0264

I feel the IACC is in a pivotal position to encourage researching the relationship between prenatal ultrasound and autism spectrum disorder. Every lead must be vigorously pursued until we find what is causing this devastating condition. By taking the bold, necessary steps into new research directions, the IACC can lead the way in this vital endeavor.

Respondent 0268

None! The questions were difficult to understand and answer. I know that research into the spiritual giftedness, and telepathic like abilities needs to be explored. I can help!

Respondent 0269

In the past decade, there have been tremendous advances made with autism; however there has been nothing to help me understand why my beautiful young adult son has never been able to speak to me.........

Respondent 0270

Please consider allocating funds for research for people with severe autism who do are nonverbal. This subset is the most vulnerable group and in addition requires the most care. Please be equitable in your quest to find a cure for this dreaded affliction.

Respondent 0279

Perhaps this is where I should have put my responses. Please review. Thanks.

Respondent 0280

You MUST start including nonverbal and low-communicating people with ASD in your research! We exist in great numbers, and studies need to start reflecting the ENTIRE autism spectrum, not just the "higher-functioning" individuals. PLEASE!

Respondent 0281

It is vitally important that we partner with individuals who are nonverbal yet successful in accessing AAC/FC to have a rich and included life. Communication is foundational to the success of any individual achieving the basic skill in life. There is TOO much emphasis being placed on becoming verbal. Too many young children are left silent in the hopes that verbal skills will develop. There is no reason that someone should remain silent and without communication. AAC/FC strategies actually assist in the development of verbal speech...and of course in the meantime allow individuals to participate in full inclusion activities such as education. There are NOT enough people who understand AAC/FC. Parents are not receiving the necessary information needed to support their nonverbal child's access to communication. This must become a priority.

Respondent 0293

Sadly, in spite of the huge gains that have been made in the past decade, our kids have not been benefited and there are still almost no interventions that work for our kids and no research to better understand the nonverbal and low-communicating population, their cognitive abilities, genetic characteristics, educational needs or to develop successful interventions. Perhaps most importantly this population needs communication interventions and at present there is no research being done in this area.

Respondent 0294

Thank you for the opportunity to submit replies. Please take it seriously. Maybe someone can reach my son better before I die. I'm now 75. Years of advocacy have found him a decent place to live. I have helped hundreds of people with autism find the best intervention in the area where I live; started a pre=school, etc. But I still don't know what my son Chris is thinking.

Respondent 0297

Until now there has not been a unified effort to advocate for those who are nonverbal or low-communicating. So now is a great time to begin our efforts to advocate for this group. Sadly, in spite of the huge gains that have been made in the past decade, our kids have not been benefited and there are still almost no interventions that work for our kids and no research to better understand the nonverbal and low-communicating population, their cognitive abilities, genetic characteristics, educational needs or to develop successful interventions. Perhaps most importantly this population needs communication interventions and at present there is no research being done in this area.

Respondent 0298

Please help those at the lowest end of the autism spectrum. Please include them in research. Families are desperate.

Respondent 0299

A considerable sized population of people with ASD is being overlooked by not devoting research money to the question of developing communication methods for nonverbal and people with limited verbal abilities. If these people could communicate, many behavioral problems that manifest themselves could be eliminated. Cognitive abilities that are now unknown could be discovered. It is time to put an emphasis on this population.

Respondent 0302

EVERYTHING FOR THE AUTISM RESEARCH AND IT'S RELEVANT TOPICS ARE UNDERREPRESENTED!! EVERY NEEDS TO BE MADE MORE AWARE OF WHAT THESE CHILDREN/PARENTS OF ARE STRUGGLING WITH! THE IGNORANCE IN THIS WORLD FROM PERSONS ON THE OUTSIDE INCLUDING SOME OF THE TEACHERS TEACHING IN THIS FEILD. THE IGNORANCEOF THE GOVERNMENT COVERING UP THE THIMEROSAL IN THE IMMUNIZATIONS WITH MANY OF US CONTRIBUTE TO ONE OF THE CAUSES NEEDS TO ADDRESSED!!!!

Respondent 0307

Tom Insel needs to step down. The IACC is not credible with him as the director. If you can't see the conflict of interest, then I'm sure you can't legitimately study the safety of vaccines and the correlation between the spike in autism and the amount of vaccines that are given to our innocent children.

Respondent 0309

I desperately want you to add more stakeholders to the IACC. You have people from government agencies all the way to Tom Insel who have no idea of what it is like to live with Autism Everyday, no disrespect meant. I would like to invite the members of the IACC to spend a day with my son, and live with "the Autism" we live with. If you don't live it, you will never feel the urgency that we feel. Dr Insel, you ended the IACC meeting early recently. It was even said that the people who were waiting to talk with you, should have been sitting in there and ready, when they were planning on a certain time. We CAN'T SIT and wait with our kids! You need to have a meeting where we do not have to submit our statement for approval; PUBLIC COMMENT should mean JUST THAT! A time that we the people can come and speak to you! Your decisions are directly impacting our present and future! We have a right to be represented, ALL OF US DO, not just the ones that agree with you!

Respondent 0310

Please don't disappoint us with a bureaucratic corrupt business as usual refusal to study of "vaccines, vaccine components and multiple vaccine administration in autism causation and severity through a variety of approaches including cell and animal studies and understanding whether and how certain subpopulations in humans may be more susceptible to adverse effects of vaccines." We deserve better. We are entitled to honest, well researched answers or else we will no longer be a captive market for your vaccines.

Respondent 0312

IACC is not reflective of the autism community. It is packed with bureaucrats with little to no experience with autism. The parents involved, other than Grossman and Redwood, represent no child but there own. Insel has fought real public member participation and IACC needs to require that public members represent real autism orgs with at least 1,000 members. Instead Insel has chosen friends and neighbors to represent the community. Far too many conflicts of interest.

Respondent 0315

Please include the importance of SPEED with all this. There are too many children out there without autism included insurance coverage, and no where to turn (except for very underfunded public school systems and counties) for interventions and therapies. ABA has helped my daughter incredibly, but I had to find it (her pediatrician STILL doesn't know what it is) and pay for it ourselves. WE NEED HELP! Thank you very much

Respondent 0316

Do a vaccinated versus unvaccinated study already! Do it right--by people without conflicts of interest. It's the only way this issue is going to go away. The parents who believe their children were vaccine damaged will not go away simply because the news stories on their televisions (in between pharmaceutical company commercials) tell them to. Oh and by the way-- '[redacted personally identifying information]' IS a valid email address...

Respondent 0318

I would urge the council to put forth effort into evaluating the RDI (Relationship Development Intervention) program. This developmental model works to remediate the core deficits of ASD. It's primary goal is quality of life for people with ASD. If you look at outcome studies for currently "proven effective" and "evidenced based" models of treatment, the prognosis is bleak. RDI is not targeting static skills, it is developing dynamic thinking...it is changing the brain! It is the only model that doesn't work around the autism or compensates for it. It working directly on the autism! I don't want to see research on ASD adults, I want to see them in fulfilling jobs and living independently and this can't happen until we take a look at what we have been doing in the field of ASD and how we are falling short when we have a better option available...RDI!

Respondent 0322

COMPREHENSIVE RESEARCH ON ENVIRONMENTAL CAUSES FOR AUTISM, INCLUDING FOOD SAFETY AND VACCINE SAFETY RESEARCH MUST BE UNDERTAKEN IMMEDIATELY. IF THOMAS INSEL CAN'T OR WON'T GET ON BOARD WITH THAT, HE SHOULD BE REMOVED FROM HIS POST AND REPLACED WITH SOMEONE WHO IS INTERESTED IN TRUTH IN SCIENCE.

Respondent 0323

Insel's personal conflict of interest - http://www.ageofautism.com/2009/08/when-vaccine-development-is-family-business-thomas-insels-conflicted-role-on-vaccines-and-autism.html This link exits the Interagency Autism Coordinating Committee Web site http://www.ageofautism.com/2009/08/senator-harkin-takes-on-tom-insel-at-autism-meeting.html (IACC Note: URL is not valid.) http://www.ageofautism.com/2009/08/the-really-big-lie-about-autism-thomas-insel-testifies.html?cid=6a00d8357f3f2969e20120a4f3ac63970b This link exits the Interagency Autism Coordinating Committee Web site

Respondent 0324

Overall, the plan targets many of the most important needs for individuals with ASD and their families. The results of the research should be of great value to states trying to develop cost-effective services in the community. My preference in terms of priorities is more money allocated to research that will help those now living with ASD.

Respondent 0325

We need research that gets away from the old and limited use programs of training for skills. While these programs are essential to help children learn functional daily living skills they are severely limited with regards to social/cognitive/communicative development that enables people to have a quality of life. Social, cognitive, and communicative development are intertwined and allow people to productively inhabit life in the real world. Specific skills do not help people with ASD develop the flexible thinking and adaptation that is required to live in the real world. So, if we are not to limit the outcomes of people with ASD to living in highly structured, protected and atypical environments (schools, sheltered workshops, family enclaves, etc.) we need to put more research effort into devising and studying how to help people with ASD develop these essential skills of dynamic processing and adaptation. RDI provides a starting point and a direction. Goodness, let's do it!

Respondent 0328

As long as Thomas Insel is involved with the IACC, inaction will continue, the true cause(s) of autism will be avoided, and the rate/incidence of autism will continue to increase. He must either resign or be removed from the IACC.

Respondent 0329

The IACC needs new leadership free from conflict. The vaccinated vs. unvaccinated study must be done by an impartial investigator or the questions surrounding vaccines and autism will never be answered.

Respondent 0334

Start including nonverbal and low-communicating people in research now!

Respondent 0335

I appreciate the efforts of the IACC to help autistics. The strategic plan and the process has been good so far. My wish is that this process is not sidetracked, especially by the vaccine question. I look forward to some real answers on questions that can be of direct benefit to autistics and their families. I appreciate that the IACC takes stakeholder input. However, it should remain that way: stakeholders should have input, not drive the process. Autism research needs to stay science oriented, not politically oriented. I would like to see greater representation from autistic adults on the IACC and subcommittees. I believe the various parent groups are represented well already.

Respondent 0340

Again, the vaccine-related studies must be restored. 1) "Study the effect of vaccines, vaccine components, and multiple vaccine administration in autism causation and severity through a variety of approaches, including cell and animal studies, and understand whether and how certain subpopulations in humans may be more susceptible to adverse effects of vaccines by 2011. Proposed costs: $6,000,000 2) Determine the feasibility and design an epidemiological study to determine if the health outcomes, including ASD, among various populations with vaccinated, unvaccinated, and alternatively vaccinated groups by 2011. Proposed costs: $10,000,000

Respondent 0341

http://www.ageofautism.com/2009/08/when-vaccine-development-is-family-business-thomas-insels-conflicted-role-on-vaccines-and-autism.html This link exits the Interagency Autism Coordinating Committee Web site

Respondent 0343

It needs to be as comprehensive as possible - and that should include a plan to compare vaccinated with non-vaccinated cohorts. (Not as difficult or unethical as characterized - there are a number of sources of children who have not been vaccinated, by choice of their parents, and their health care professionals.) This is a multi-faceted task, combining a genetic component with an environmental one. No stone should be left unturned in this research strategy. NO SACRED COWS.

Respondent 0345

I have a very affected 16 year-old daughter diagnosed 14 years ago. It is imperative that we increase our knowledge of what is happening to cause so many children to become sick who then receive a diagnosis of autism. The thousands of parents who have the same story, same child talking, same vaccines, same immune issues (rashes, allergies, GI issues, viruses, high heavy metal loads etc), then no language, bizarre behaviors, identical labs showing abnormal GI flora, bacteria, metals, viral titers, inflammatory markers - GI and brain affected. Psychiatry has a small role in research and treatment for these children so please instead include, immune, GI, environmental, and toxin, specialists.

Respondent 0347

Please research this devastating disease that not only affects the individual but the entire family. Do not forget the nonverbal group. The majority of people in this world think that autistic individuals are savants. Not everyone is a musician, artist etc.

Respondent 0349

Need study on vaccinated vs. unvaccinated children for once and all.

Respondent 0350

Parents are watching you. We are not happy with what you have accomplished so far. Are you willing to tackle some of the unpleasant truths, such as some children regress into what is being called autism after a group of vaccines? Will you try to find out why this is happening at such an alarming rate? Or are you simply buying time while "business as usual" continues on?

Respondent 0353

I am very disappointed so far with the priorities, which seem political and financial rather than science-based, and lack of interest in autism as a treatable medical condition. Science in theory should be objective, not defensive, and certainly not tied to political interests, but so far this plan does not seem so. You have a tremendous opportunity to save future generations of taxpayers billions of dollars in supporting the overwhelming numbers of disabled children, who will all one day be without parents, relying on government services and entitlements, by seriously and earnestly investigating the clear role of environmental triggers in developing such enormous numbers of new cases of autism. I am 40, and I assure you that 1:100 of my peers is not autistic, but misdiagnosed in childhood. There is a very real epidemic here, with 1:64 of the newest generation of children now diagnosed autistic (1:38 boys). There are not 1:38 autistic 40 year olds! Replace Insel, and reverse this trend.

Respondent 0354

FOCUS ON BRINGING SPEECH OR COMMUNICATION BACK TO OUR KIDS!!

Respondent 0356

I am happy that the plan includes studying sex differences. As a mom with a 14 year old daughter with autism, I desperately need that information. I feel strongly that much more attention needs to be made in the area of improving the capabilities of nonverbal adolescents and low verbal to communicate. I feel like after my daughter turned 7, most of the therapeutic world considered her a lost cause. Sub typing and discovering different types is vitals. So many families are wracked with guilt because their child was not capable of being mainstreamed. Parents are exhausted and spent. Frankly, in this economy some are losing their homes because they took out second mortgages to pay for treatments that were ineffective. Your work is vital. Don't leave out the most affected.

Respondent 0360

The IACC Strategic Plan for ASD Research is sorely lacking in a true desire to address the primary concern of most parents.

Respondent 0361

There is significant need to explore more understanding of developmental approaches for treating autism and to further clarify the often misrepresented and misunderstood body of research on behavioral interventions and to differentiate their benefits and shortfalls. PLEASE MAKE THIS A PRIORITY!!!!

Respondent 0363

All those with conflict of interest should resign. All those with any connection to pharmaceutical companies and vaccine manufacturers should resign. This committee should be sworn just as a jury. Open minded just like a jury. All avenues of research including Vaccinated vs. Unvaccinated study will make a difference. Autism is not a psychiatric disorder.

Respondent 0364

I am concerned about Mr. Insel's possible conflict of interests (family member who has participated in the development of a vaccine - Hib and financially benefited from such development) and believe that he should step down so that needed studies/research into areas such as vaccinated versus unvaccinated populations, the role of thimerosal/aluminum and other additives in vaccines as well as the effect of vaccines given in combination and the possible role they play in the cause of autism can be THOROUGHLY, INDEPENDENTLY and SPEEDILY studied/researched free from any possible conflicts of interests as the autism crisis demands.

Respondent 0366

Save money... test for food allergies and intolerances, candida, heavy metals, clostridia, vitamin and mineral deficiencies before you send kids for expensive ABA, speech, etc. Make parents accountable for feeding their children foods that are not poisonous to their body. These simple things will change a generation and save a fortune in unnecessary treatments.

Respondent 0367

Insel needs to remove himself from the committee. He has his own agenda and is not following the dictates of the Combating Autism Act.

Respondent 0368

I would like to see more parent members on the IACC panel. We are the people who walk the walk and we know where we need to go to find answers. I don't want to see scientists on the panel who haven't actually worked with or treated autistic children or adults. If they don't have actual hands on experience with autism, then they really don't know what they're talking about. I would like to see Dr. Tom Insel resign. I was appalled when he recently ended a meeting a couple of hours early, denying several parents who had brought (at their own expense) their autistic children to testify before the board. The children and their parents were not in the room at the time, because it was not their appointed time to speak. Autistic children cannot sit quietly for several hours on the off chance that other business might wrap up early. His behavior showed an extraordinary lack of sensitivity and a total ignorance of what living with autism is actually like.

Respondent 0369

These are the comments of Dr. Robert A. Rubin statistician/researcher. My wife Rita Rubin submitted her comments earlier, and I was thereafter not able to create a new profile to submit my comments, which are included here under her profile. Can you do something to fix this problem? We are each entitled to make separate comments under our own names

Respondent 0372

As the people charged with the task at improving the lives of children with ASD and their families, we must word towards exploring and understanding more developmental approaches for treating autism and to further clarify the often misrepresented and misunderstood body of research on behavioral interventions and to differentiate their benefits and shortfalls. Too often behavioral interventions are subscribed when it is not developmentally appropriate, cost-effective, or time permitting for the family. PLEASE MAKE THIS A PRIORITY!!!!

Respondent 0373

Dr. Tom Insel has proved over and over again to be very biased about environmental factors affecting genetic risks for autism. Countless family members who live with their loved ones with autism have witnessed terrible regression, because their children fell ill following vaccination. We need to have our concerns addressed by proper research as directed by Congress in the Combating Autism Act. Dr. Insel continues to block and evade all requests for this research. The Combating Autism Act was made possible by family members tirelessly advocating and lobbying, while caring for their loved ones' high needs. It is also very disheartening that my government refuses to call this autism crisis an epidemic and has not published recent numbers since the old "1 in 150".

Respondent 0374

My son Charlie's struggles are numerous (he is minimally verbal, has numerous challenges in his academic learning---he is not yet able to read---and has a history of severe behavior issues). In a previous generation, I think it sadly likely that Charlie would have been removed from his family and institutionalized. Charlie has been able to live with my husband, James T. Fisher, and me and to be a part of the community chiefly because we now know so much more about educating an autistic child, and because we now know so much more about autism. In closing, and on behalf of my son Charlie and my husband Jim, I wish to thank the IACC for providing the opportunity for the public to provide input. And once again, I ask the members of the IACC to keep the "human rights, dignity, and quality of life of people with ASD" always in mind.

Respondent 0375

The time is now. Don't let one more nonverbal person go without research into this subject. Please help them be the people that their parents believe that they are and can become.

Respondent 0376

As long as Tom Insel remains in charge, NOTHING will get accomplished. Perhaps that is what the government wants to happen. HUGE CONFLICT OF INTEREST.

Respondent 0377

I call for the resignation of Thomas Insel because of his violation of federal meeting protocol by "re-voting" for the funding to research a vaccinated/unvaccinated study. This was outrageous! Now I find out that his family is in the vaccine business--a blatant conflict of interest. He does NOT have children's best interest in mind!!

Respondent 0379

I'm appalled at the way by which the original IACC Committee recommendations were removed from the agenda, and those items, decided on by those with the knowledge necessary and with a stake in the outcome, should be returned to the agenda. Especially, the vaccinated/unvaccinated study.

Respondent 0385

As a parent of an amazing 5-year old son with ASD, it's encouraging that a plan of this scope and magnitude is being put together. Thank you from the bottom of my heart. I hope in my comments I've been able to emphasize a few points: 1.) Please look at treatment options like RDI (Relationship Development Intervention) that focus on quality of life outcomes and not IQ-based results. This is such an important distinction. 2.) Focus as much resources on treatment as a cure. While a cure is important, as a parent, if Autism is cured tomorrow, I'll be ecstatic but it still won't help my son or make his life easier. 3.) Raise the minimum requirements for therapists, increasing their required hours and time spent with kids. 4.) More teamwork between agencies that focusing on helping the parents pick a treatment option. 5.) Immediate funding that lets ASDs be treated at the time of diagnosis so that the best outcome can be achieved.

Respondent 0386

I did not have the time to fill out the complete form. However, my message is this: PLEASE we need research into communication needs of nonverbal individuals. Thank you.

Respondent 0390

We need a broad conceptual frame of social, emotional and intellectual development that guides our research and our intervention. Reinforcing behavior that is considered appropriate in a particular context is too narrowly construed. We need to begin by being clear what our children are at risk for in the long term, and build our research and intervention around the challenges in reciprocity of communication and interaction, and in flexibility and thinking that are at the core of the disorder. From infancy through childhood and into adulthood, we cannot lose sight of the goal to help with relating, communicating, and thinking. We need to learn much more about individual differences and how we can tailor our interventions so that each child has the chance to have warm personal connections and satisfying lives.

Respondent 0391

Unvaccinated cohort MUST BE COMPARED to vaccinated cohort.

Respondent 0399

Fire Insel!!! I want Bernadine Healy.

Respondent 0403

Thank you for finally looking into everything associated with our children. I look forward to the answers within your research.

Respondent 0406

Tom Insel needs to resign. He has an undisclosed Conflict of Interest that could be biasing his point of view and the direction of his suggestions for research.

Respondent 0408

You need more public members on the IACC who are interested in TAKING ACTION instead of sitting in planning meetings (or cutting short the meetings so they don't have to sit there and think about depressing things anymore.) At the risk of sounding offensive, PLEASE stop sitting on your [profane language redacted] and DO SOMETHING! We, as parents of autistic children, have turned our lives upside down so that we can help our children as well as prevent other children from becoming victims as well. Please don't make us the only ones who seem to give a [profane language redacted].

Respondent 0409

Please, I beg you, do not overlook the nonverbal or low-communicating individual. They deserve our best. They are whole. They are capable. Why are we not addressing them? They make up 50% of the autism population. Given researched interventions, we could create a future for this population. Please.

Respondent 0412

We need to include nonverbal and low-communicating people, such as my autistic godson-nephew, in the research NOW!!!

Respondent 0416

Please get the research funded and underway!

Respondent 0420

Get some objective people that have no ties to the pharmaceutical industry to look at autism. Try and allow observation into your science. Why are mother's not credible enough when describing their children? A mother takes away milk and bread and tells a doctor that they seem better and this is not enough. This will hold everything back but then again I feel like it's all purposely being held up because it's not convenient for the government. Many of you are old enough that you'll be dead when your predecessors have to worry about the million of autistic adults that you will be dealing with in twenty years. It's easy for you to turn your heads. I feel like I have to keep fighting for all the children that will be born into it because the government can't admit it's wrong. It's hard to be nice when I'm thinking about the poor mother that does not have the time to write to you today because she's cleaning feces off the wall from her child that acts like a wild animal.

Respondent 0421

All biased members need to resign so we can get some real research done. Enough is enough. Parents are tired of waiting, our children are here now...

Respondent 0426

I do wish that the IACC would spend the most CAA money on the question of what is making these people sick. As important as all the other questions are, they are all secondary to the question of what is the disease. Of course it important to learn to hop on one foot when you have glass in the other, but it would be a lot simpler to just remove the shard of glass.

Respondent 0427

We need help. The autism community needs help. This is our lives, we live it every day. I want Seth to receive more ABA treatment, but cannot afford it. It is $40.00 an hr. That may not seem a lot to some, but it's a lot to us. These kids are suffering. As a parent, I'm stressed, always trying to find therapies that will work for Seth. Medicaid, won't pay for anything, besides speech therapy and occupational therapy. Speech therapy and occupational therapy never worked for Seth. What is 30 minutes once a week going to do? Seth was talking, socializing, eating, no frustration before he got the 15 month shot. I look at my videos all the time. I never gave my 2 younger kids all of their shots. Please get our kids help, I don't have time to waste.

Respondent 0429

Conflicts of interest among IACC members must be addressed. Dr. Insel has said the IACC should not investigate the role of vaccines in autism, because its parent organization, HHS, is facing claims in vaccine court. Members of HHS should recuse themselves from decisions regarding the study of vaccines and autism.

Respondent 0430

What is happening in autism is happening on your watch. History is not going to be kind to those who choose to turn a deaf ear or blind eye to the anecdotal stories that parents are sharing. The truth is going to come out even if it has to come from research that parents fund. To get answers in this manner instead of from studies that the IACC Strategic Plan implement will be an embarrassment. It is up to the committee. The ball is in your court at the moment but it will not stay there if you continue to make up the game rules as you go.

Respondent 0436

We need to increase funding.

Respondent 0439

I must express my extreme disappointment in Dr. Insel's performance to date. His removal of the already agreed upon vaccinated vs. unvaccinated study, his lack of knowledge regarding the growing, available population of children who have chosen not to vaccinate and his continual lack of urgency in any of his comments or messages regarding this startling epidemic of children with autism. The statistics currently reflect a figure of 1 in 100 children or 1 in 38 boys! That statistic is terrifying. It needs to be addressed as an emergency. Dr. Insel has failed to represent myself, my child or the other thousands affected by autism. I believe his resignation is in order.

Respondent 0440

I do not understand the difference between questions A and B for each section. Perhaps a clearer phrasing could be devised. It is imperative that all disability policy address the concerns of the people who the policy directly affects. I am heartened to see that the IACC targets autistic individuals for feedback, and I hope that our contributions during this public feedback will be given substantial consideration in the decision-making process even if we are numerically underrepresented among the responses.

Respondent 0442

I am happy to speak with anyone from the IACC about my son and what we have done to help him. Regardless of the cause of autism, helping children and families currently struggling to deal with the care and future of ASD children needs to be a higher priority. Prevention is important but we need to educate the AAP and pediatricians across the country that autism has a physical injury component that can be healed. Just like mending a broken arm or giving an antibiotic for bronchitis, prescribing a course of physical treatments (diets, supplements, gastro disease treatment etc.) can make a difference and help these families. The IACC owes just as much of an obligation to families already suffering than it does to prevent new autistic cases. Don't be afraid to increase education to doctors because of the vaccine controversy. Healing should be the #1 priority, not covering up for past sins.

Respondent 0443

Tom Insel needs to resign. His conflicts of interest make him a bad choice for IACC.

Respondent 0445

research education and early intervention combined with assistance with money for these families

Respondent 0446

I found this form very confusing, so I will sum up my comments again here. Please put vaccinated vs. unvaccinated populations comparative health outcomes study back on the docket. There are pockets of unvaccinated children already in this country (Christian Scientists, Amish, home schooled, natural health families, etc). The government knows who each and everyone one of these children is and why he or she is not vaccinated because the parents have to file a vaccine exemption form with their local health department. There needs to be more job training programs for teens and young adults with autism. Since CAA is about curing autism why is it the only member of IACC that has Autism, Stephen Shore, opposes a cure. Please also add to the panel someone living with Autism who finds living with this condition a struggle and therefore supports a cure.

Respondent 0449

It needs to focus on the individual and the families and realize that just like Autism is a Spectrum, how you deal with it, address it, live with it, reject it, embrace it is a Spectrum and one size does not fit all...

Respondent 0452

So much of the research out there involves children with autism and how to "get through the school years" which is why I feel ABA has such a stronghold on the treatment standards but more and more families are choosing to home school because they want "real life" opportunities to address the core deficits of autism that will prevent their children from being independent and having fulfilling careers and friendships as adults. Please research quality of life as an adult in the real world which is very different from "life at school", not just how kids can be mainstreamed with typical peers when they are young.

Respondent 0454

Please restore these two initiatives: 1) \"Study the effect of vaccines, vaccine components, and multiple vaccine administration in autism causation and severity through a variety of approaches, including cell and animal studies, and understand whether and how certain subpopulations in humans may be more susceptible to adverse effects of vaccines by 2011. Proposed costs: $6,000,000 2) Determine the feasibility and design an epidemiological study to determine if the health outcomes, including ASD, among various populations with vaccinated, unvaccinated, and alternatively vaccinated groups by 2011. Proposed costs: $10,000,000

Respondent 0455

The NIH should step back and evaluate its approach to solving these problems.

Respondent 0461

Please do not take out the vaccine vs. autism research. Biomedical research needs to be done.

Respondent 0466

Listen to the parents. We live this every day and want to be part of the solution. Don't shut us out please.

Respondent 0472

The IACC is considering autism under the medical model of disability, considering autism a "disorder" in need of repair. This is an inaccurate and incomplete way of looking at autism. Instead, I urge the IACC to consider autism as a legitimate way of being. We should not be characterized as an epidemic or social crisis, but rather a group of people which is underprivileged in society because of our disability--like members of other disability groups, or other minority groups. This is the framework with which should be examining autism, rather than the medicalized framework which the IACC unfortunately used in the construction of this plan. I strongly urge the IACC to include more autistic people in the construction of its plans. Perhaps then we will see the IACC asking more questions of greater relevance and urgency to autistic people.

Respondent 0474

The New England Center for Children (NECC) appreciates the opportunity to respond to this RFI and have a voice in the decision-making processes of the IACC. As a school that has served individuals diagnosed with autism and related disorders for over 30 years, the Strategic Plan is of great interest to NECC. We hope that our comments will be found to be useful to the IACC. We have been encouraged by the work done by the IACC thus far and we hope that the committee continues to be receptive to feedback provided by schools, educators, and clinicians.

Respondent 0476

Our experiences working with adults with the NEUROLOGICAL CONDITION THAT CAN AND DOES RESULT IN AUTISM, indicate that IF enough of the SPRATS of an individual with the condition are observed, appropriately studied and understood on their own AND as to their interaction with the individual's real LIFE NEEDS, that with APPROPRIATE recognition, encouragement, and experiential-education, and confidence, there WILL be HIGHLY INFORMATIVE, HIGHLY USEFUL, and HIGHLY MARKETABLE PATTERNS THAT EMERGE. Note: I did not enter the \\ characters floating...I tried to remove them twice.

Respondent 0477

Please make low verbal and nonverbal people with autism part of the Strategic plan! It is so important. Thank you very much.

Respondent 0481

In general, I am pleased to see a higher priority being placed on longitudinal studies, participatory research, and services and supports. I think it is past time for the vaccine issue to meet a much overdue demise, and there should be less emphasis on causation in general. While some of the language was more respectful toward the Autistic population than in past years, there is still room for improvement.

Respondent 0484

Societal devaluation and other dynamics exert a centrifugal force that moves people with autism spectrum disorders out towards greater and greater vulnerability, and even to the edge of survival. People with autism are at best socially marginalized but more often profoundly devalued. Life-wasting of people with autism spectrum disorders must be countered by helping the acquisition of vital, life-sustaining skills. Social role valorization and positive role enhancement exert a centripetal force that moves people with autism spectrum disorders in towards greater social value and status. History records the human paradigm maturing contributions of many considered to have autism spectrum disorders, yet numbered among the valued core of society. Social integration of, and the enhancement of the competencies of, current, and future, people with autism spectrum disorders will greaten the likelihood of contributors to society of the caliber of these historical role models.

Respondent 0485

Dr. Insel, you are a distraction to the cause of combating autism. Resign and let the IACC move forward without the weight of your encumbrance

Respondent 0488

Please look at parent mediated, relationship based interventions (RDI, Hanen). As a practitioner, I see the most meaningful improvements in reduction of family stress, parental sense of their own competence, pleasure in child/parent relationships, increased child motivation to interact as well as increased child independence in activities of daily living in these types of interventions. With the exception of improvement in the activities of daily living, I rarely see these outcomes in my patients who are being treated with intensive behavior programs.

Respondent 0492

You should revise your comment form to make it easier to comment.

Respondent 0493

Parents should lead the way not Dr. Like Insel with conflicts of interest. Study the children not large scale studies that are easily altered and invite a toxicologist. VACCINATED vs. UNVACCINATED TOTAL HEALTH OUTCOME it's being done without you you just don't want to publish that unvaccinated groups don't have autism, less asthma, less hospital visits. It is an unfortunate truth that this population is healthier that doesn't feed the medical or drug system but aren't they rich enough already? They seem to have bought enough people in Government agencies to have allowed this tragedy to continue completely unchecked and will continue to do so is my fear. Hope all of you can sleep at night these families can't but we'll just give them a pill or vaccine for that.

Respondent 0494

Do you want me to shut up about vaccines??? You can do it by budgeting for unbiased vaccine studies that lack conflicts of interest. Prove us wrong and we will move on to other possible sources. Remember, most of us are not anti-vaccine, but we can not support the current schedule and amounts of vaccines that are recommended. Please let us put this issue to rest or give it the attention it needs (based on future unbiased studies.) We need answers now!!!

Respondent 0500

The effectiveness of the IACC is compromised by conflicts of interest and political issues. There are too many people on the board with ties to pharmaceutical corporations, the pharmaceutical lobby, and the insurance lobby. There is too little representation from parents of children with ASD or groups that criticize the above.

Respondent 0501

Focus on autistic people and how to make their lives better, not on autism spectrum disorder and how to treat it. The language and approach matters a lot. Most of the language used in your statements and this questionnaire are de-humanizing! People with autism are people, not a disease. How do you expect to foster inclusion and acceptance when you're talking about them like they're broken and need to be fixed or prevented?

Respondent 0505

The coming wave of h1n1 vaccinations with untested vaccines including untested and known-to-be-dangerous adjuvants will unfortunately provide new opportunities to study ASD. If we continue to study ASD the way we have, we will guarantee further stagnation in meaningful research, further distrust in the government health agencies and vaccination plan, and further decline in birthrate. We will soon be approaching one million ASD children. Our health care system and our society will collapse in a tumble reminiscent of an apocalyptic zombie movie as couples begin declining to run the risk of having children at all.

Respondent 0507

Helen McNabb

Research would best suit the needs of all persons with ASD by allowing those with the most experience – the adults with ASD and their parents' – to be heard and gather their critical information. Further research is needed in the following areas: 1) number of students graduating from high school with a diploma vs. certificate and why; 2) number of adults with ASD suffering from depression/anxiety, 3) Sensory issues: tolerance/intolerance to the five senses, 4) ASD & Memory Deficits, 5) number of Adults with ASD and Math Disabilities, 6) The study of preemies (under 2 pounds) not being diagnosed with ASD until years later due to not meeting their milestones. 7) number of preemies born during 1980-present who were diagnosed with ASD and when they were diagnosed, 8) the difference between language processing disorders and ASD.

Respondent 0508

Find ways to include people that are nonverbal in your studies.

Respondent 0509

It is absolutely terrible that vaccine research deleted from the IACC Strategic plan!!!!!!!!!!!!

Respondent 0510

PLEASE validate and research our concerns! Quench our children's DESPERATE thirst for services, education, and equality!! EDUCATE our Communities, our children are discriminated against by our NEIGHBORS, our FRIENDS, our FAMILIES, our SCHOOLS and their PEERS-we need an initiative against discrimination and to promote education and understanding!!!!! This IS an epidemic and NO family is IMMUNE!!!!

Respondent 0512

It is time to stop beating the dead horse of blaming autism solely on genetics. I am sure they do play a part but there is mounting evidence that something in our environment is triggering this in our children. The time is past for vaccines to be left out of the research. They NEED to be studied as well as pesticides. Children are the ones susceptible to developing autism and one of the major toxic exposures in childhood is from vaccine adjuvants. We need honest research and honest answers that are not paid for or swayed by the pharmaceutical industry. Please consider us (the families of children with autism). WE are the voices for those who can not ask this of you themselves. Thank you.

Respondent 0514

PLEASE DO US A FAVOR - Everyone on the committee that does NOT have an immediate family member with Autism - RESIGN. I've viewed the committee hearing and everyone withOUT autism in the family has the WRONG PRIORITIES. ABSOLUTELY THE WRONG PRIORITIES. Research ischemic and environment events only. Do the vaccinated vs. unvaccinated study as a start.

Respondent 0519

Integration of causation, recovery and prevention in mission/vision statements. Add recovery statement stating its possibility in cross-cutting themes. Update autism as a current national health emergency, not an "emerging" emergency in the introduction. Incorporate additional public participation via a DOD CDMRP model and Autism Advisory Board. Include environmental factor/toxic load screening in early detection. Justify increased research budget based on "cost of disease" model and opportunities to perform high-quality research.

Respondent 0520

We have two Autistic sons and they have both made incredible progress through the RDI treatment. The problem is it costs families money, because at this time it is not covered by the Autism Waiver the Disability Bureau, or Insurance companies. This is a shame because all autistic children should have access to this treatment.

Respondent 0521

Please attend to the needs of low and nonverbal people with autism. The best "evidence based method ABA did not help our son make the gains that Rapid Prompting Method (RPM) has. Measures of IQ with such verbal biases have unnecessarily narrowed the options for our low and nonverbal children. Please make a bold shift in this unfortunate pattern and study these subtypes of autism in a fresh and fair manner

Respondent 0524

Obviously I am an advocate of neurodiversity. While I believe that I differ politically from your organization in many respects, I also know that we all care about improving the quality of human life. I hope that you will consider the input of autistic individuals as you define for yourselves and for society what a well lived, valuable life is. It is possible to help someone to develop strategies for living in the world AND to accept that person's autism at the same time. Thank you for your consideration.

Please note that all comments are provided in their original form and in their entirety with the following exceptions: 1) Spelling errors were corrected and abbreviations changed to full length words to facilitate readability and text searching and 2) profane language was redacted. Respondent numbers in the RFI are not sequential due to test cases (technical staff and others submitting dummy data to test the system, which took up a respondent number each time) and unsubmitted responses (did not hit "submit" button, despite automated reminders to do so) that were logged into the system. Also, some respondents did not provide answers to every question or subquestion. Blank responses were not posted. The comments posted reflect the opinions of members of the public who responded to the RFI. These comments are not endorsed by and do not represent the views of the Federal government.

The responses to the IACC RFI are organized by Strategic Plan question. All of the responses to each question and sub question (Parts a, b, and c where applicable) are grouped together to allow the reader to easily review all material submitted in response to each question. When reviewing the responses, it may be helpful to understand that responses were submitted sequentially. Comments such as "previous" or "see above" sometimes refer to parts a or b of a person's response for the same Strategic Plan question, but in other cases refer to parts of a response to an earlier Strategic Plan question. In the case of the latter, the earlier comment referenced can be located by navigating to the Strategic Plan question indicated and then finding the respondent number associated with the comment of interest. Similarly, respondents sometimes referenced readers to previous responses by listing a specific question number (e.g. See IIIc). These materials can be located by navigating to the question listed and locating the respondent number of interest.

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