Interagency Autism Coordinating Committee logo


Main content area.

Strategic Plan 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.

Return to top of page

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.

Return to top of page


HHS Home | Contacting IACC | Accessibility | Privacy Policy | FOIA | Disclaimer | USA.gov | IACC Webmaster

U.S. Department of Health & Human Services • 200 Independence Avenue, S.W. • Washington, D.C. 20201