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Strategic Plan Question 4: Which Treatments and Interventions Will Help?



Respondent 0013

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

a. Gaps and underrepresented research areas.
Every effort must be made to promote language development. Deaf sign language was helpful for my son who was resuscitated at birth. My son who suffered head trauma learned to read before he learned to speak. He could read single words at age two, but did not speak in sentences with grammatical innovations until he was almost six. Until then he was fluently echolalic his speech appeared metaphorical and irrelevant to those who did not know him well. His speech was pragmatic for those of us who did know him well. Medications should not be used until the dysfunctional brain systems that cause autism are understood. Vitamins might be useful, especially vitamin B1 (thiamine an essential co-enzyme for aerobic enzymes), especially in cases where mitochondrial disorder is suspected. When my children were young we tried all the fads plus megavitamins that made us burp (and I ate and took what they did). We thought our oldest son was cured. Sadly he is not.

b. New opportunities.
Language is the most characteristic difference of humans from all other animal species. Linguists should be encouraged to take an interest in the characteristic language disorder of children with autism. Memory for the musical envelope of speech is preserved, as is pronunciation. Linguists have studied things like "distinctive phonological features" and "syntactic transformations." My son who was resuscitated at birth had no delays in motor milestones or beginning speech. By age two he was singing all the Christmas carols, including The Twelve Days of Christmas, with clear pronunciation and perfect pitch. At age four, he finally made his first "grammatical transformation," saying, "I'm a good idea," at the door wiping his feet – derived from having been told many times, "That's a good idea" or "That's a good boy," for wiping his feet on the doormat. What prevented normal development from single words to baby-talk and progressive mastery of syntax?

c. Research priorities.
Can children with autism be helped to hear syllable boundaries, and taught to use baby talk? Brown and Bellugi (1964) determined that children first recognize stressed syllables before beginning to speak. Stressed syllable word fragments are then used in unique syntactic arrangements. The ability to make syntactic transformations appears to be an innate human capacity from an early age. The results are what Brown and Bellugi referred to as telegraphic speech e.g. Apple, I want or Mommy go store. The echolalic autistic child would instead say something like, you want the apple or Mommy has to go to the grocery store. Can autistic children be taught to hear and use single syllables and make syntactic rearrangements? References: (1) Brown R, Bellugi U. Three processes in the child's acquisition of syntax. Harv Educ Rev. 1964; 34:133-151. (2) Brown R. A First Language: The Early Stages. Cambridge, MA: Harvard University Press, 1973.

Respondent 0014

a. Gaps and underrepresented research areas.
Of individuals with Autism Spectrum Disorders (ASD), 80-90% demonstrate problematic sensory behaviors such as self-stimulating behaviors (excessive rocking or spinning), avoiding behaviors (such as placing hands over ears in response to typical levels of auditory input), sensory seeking behaviors (twirling, chewing, etc), tuning out behaviors (such as not responding to their name or other environmental cues), and difficulty enacting purposeful plans of action (Rogers, Hepburn & Wehner, 2003; Ornitz, 1974; Tomcheck & Dunn, 2007). Families report that these sensory behaviors significantly restrict full participation in daily activities for them and their child and consequently, interventions to address them are among the most often requested services (Mandell, et al, 2005; Green,) Despite this, there is no evidence based treatment for these sensory behaviors, and there is limited data on the efficacy of this widely-used treatment.

b. New opportunities.
We need Randomized Control Trials that will evaluate the feasibility, applicability and efficacy of interventions for sensory behaviors. Recent pilot data on early intensive behavioral interventions (EIBI) (T. Smith, et al. 2009) suggests that EIBI DO NOT reduce sensory behaviors and that additional intervention that is specifically directed toward these behaviors is needed. Occupational therapists have the clinical expertise to address these sensory behaviors, but studies are needed to determine the extent, scope and focus of these interventions.

c. Research priorities.
Interventions to address sensory behaviors are a critical need. We know that this is one of the most sought after areas of intervention by families because these behaviors interfere with daily routines and activities of the family and child. Therefore, this area should be a high priority in the research objectives of the IACC.

Respondent 0016

a. Gaps and underrepresented research areas.
There are few interventions that work for these individuals and currently there is no research to develop them. We need research to develop successful interventions for this group. Focus on how to help instead of just how to prevent. WE are here and we need support! In spite of lack of communication being my son's most severe deficit, there is currently no research to develop communication interventions. We need this kind of research now. Almost nothing is known about nonverbal and low-communicating individuals, yet there is no research focused specifically on better understanding this group. In spite of tremendous advances in autism research in the past decade, this group has not benefited from the progress that has been made and little has changed for them.

b. New opportunities.
Supporting people to type has not received adequate research.

c. Research priorities.
Help my son to communicate better! He is highly intelligent, highly literate, but unless it is his thought, he has difficulty answering open ended questions. We must understand why this is before we "judge" them as low-functioning.

Respondent 0017

b. New opportunities.
Scientists must outrun charlatans. Every year billions of dollars are spent by parents who are buying hope from purveyors of services and treatments which are at best suspect and at worst dangerous. Hyperbaric oxygen, IVIG, and chelation are among the prime suspects. If these treatments are effective in treating symptoms of autism, then parents have a right to know and access them. If, however, they are harmful or ineffective, then parents have a right to be warned. While genetic research can tell us where autism comes from, it does little to mitigate the emotional, financial, and immediate dangers that stem from investing limited resources into quack science.

c. Research priorities.
Examine what popular treatments for autism are being undertaken and evaluate which ones are most likely to do harm: Harm in a biological sense and harm in an economic sense to families. Also, look to see what oversights providers of treatments to individuals with autism have. There seems to be no safety net for families or regulatory bodies which can have an impact on these providers of autism snake oil.

Respondent 0018

a. Gaps and underrepresented research areas.
In order to successfully evaluate biomedical interventions we must be able to divide children with ASD into the proper diagnostic subtypes. We must design research studies that make an attempt to identify those likely to respond to the diet (or other interventions) prior to initiating the study. Not one approach will work for all kids but research to date has worked under that assumption.

Respondent 0022

a. Gaps and underrepresented research areas.
Work on those aging with autism is ignored

Respondent 0023

John Best
Hating Autism blog

a. Gaps and underrepresented research areas.
The only reason no controlled trials have shown anything is because you won't do any trials. The study you planned on chelation was designed to fail because you were not going to use Alpha Lipoic Acid (ALA). You must be aware that the only thing that can take mercury past the blood brain barrier is ALA. We already know it works because that is how we have cured kids. IF you want to honest about this, that is the study you have to do and you should only use Andy Cutler's protocol because it is safe.

b. New opportunities.
Behavioral treatments are useless for kids who can't pay attention to anything because their brains are full of mercury. You have to remove the mercury or you're just wasting time and money.

c. Research priorities.
Do chelation with Cutler's protocol. Don't bother with anything else.

Respondent 0024

a. Gaps and underrepresented research areas.
Chiropractic methods and other alternative methods such as acupressure and jin shin jyutsu need to be explored. Also, we need to look at the hormone levels of ASD children as it seems many of the girls/women have similar imbalances.

b. New opportunities.
Chiropractic practices which address neurology have proven helpful with my daughter. Our chiropractor does the Neural Organization Technique which addresses many deficits in the body.

c. Research priorities.
Not all behavior modification techniques work with all people. These methods may only be useful for youngerchildren but can cause problems with older children and adults, as was the case with my daughter. I believe that other alternative methods need exploration.

Respondent 0029

a. Gaps and underrepresented research areas.
What alternative and augmentative communication technologies are effective in autism? What are the long term effects of Risperdal in people with autism? Compare the effectiveness of intensive behavioral treatments to medication treatments for symptoms of autism?

c. Research priorities.
Behavioral methods are easy to study and therefore have gotten most of the attention. Social communication and play interventions should receive more study to determine effectiveness.

Respondent 0031

a. Gaps and underrepresented research areas.
Use competent information from adult and parents of adults with autism to find out what is needed and what works. All too often academics don't have a clue as to what is needed and what works.

b. New opportunities.
Get parents and adults with autism involved with works for treatment.

Respondent 0035

a. Gaps and underrepresented research areas.
Numerous studies exist to support the use of behavioral interventions with children on the autism spectrum. Research for other treatments either don't exist, is not well designed, or is not made available to parents. Parents need to learn how to examine and objectively determine what treatments are right for their child. Places that provide resources to parents about treatments for autism should be required to present parents with the data/literature supporting those treatments. A lot of places just know what treatments people are using and automatically present those to the parents without looking at if the treatments have been studied and/or proven effective.

b. New opportunities.
-well designed research on biomedical, nutritional, and other interventions -studies that examine the validity of tests used by DAN doctors to determine if a child has low or high levels of a substance -studies that examine the likelihood of a child responding to treatments - what factors predict how well a child will respond to the treatment, especially biomedical and nutritional. Some children may respond to those treatments because they truly have a nutritional or biomedical issue but that doesn't mean ALL children will respond. We need to determine what factors predict responding to these treatments and take that into account when studying the treatments.

c. Research priorities.
-Studying biomedical and nutritional treatments more in depth. Controlling for factors that may predict responding. Do not group together children who have gastrointestinal issues and those who do not because they probably will not respond the same

Respondent 0038

a. Gaps and underrepresented research areas.
We need more focus on chelation, biomedical, etc.

Respondent 0046

a. Gaps and underrepresented research areas.
Interventions: Parent questionnaires, including information concerning when they first noticed something different about their child. This may have been at a very young age.

b. New opportunities.
Educating the public and the pediatricians regarding symptoms and signs of ASD.

c. Research priorities.
Education and therapies which are mandatory during the first two years. IE: Occupational Therapy, Speech & Language, Vision, Physical Therapy, ABA.

Respondent 0047

a. Gaps and underrepresented research areas.
Biomedical intervention, dietary restrictions (such as a gluten-free, casein-free diet), and homeopathic remedies to cleanse the body of toxins... all have made an enormous difference for my twin grandsons, both of whom are now making amazing progress in their communications and developmental skills.

b. New opportunities.
The last paragraph does mention these possible treatments, and then says "these treatments involve more than minimal risks". I don't know what "risks" there are for giving a child a diet free of fast food & processed sugar, and feeding him or her fruits, vegetables, and organic meat. It is certainly not as much risk as pumping more chemicals into them via more prescribed drugs. The people who caution against such "natural" solutions are (once again) related to the manufacturers of the vaccines and drugs, who only want to sell us more of the same.

c. Research priorities.
Stop listening to only the drug companies and insurance companies and their paid "experts" and start using some common sense. Do the INDEPENDENT research into the natural, healthful possibilities, and give our kids a break from the cycle that says there's a pill for whatever ails you.

Respondent 0049

a. Gaps and underrepresented research areas.
Completely underrepresented: Teaching neurotypicals to think like autistics. ASD individuals are not "in their own world." They are in ours and we are in theirs. Those strange noises or repetitive behaviors are communication, make no mistake, and our vocabulary and hand gestures are just as strange to them as their choice of communication is to us. We need to reach out, too. They don't understand how to communicate effectively and appropriately with us. We need to take it upon ourselves to understand them first, and then teach them how neurotypicals expect to give and receive communication. We can't expect them to understand us...we have to reach out to them on their terms because they don't know what our terms are. We have the advantage. We need to use that advantage with more sympathy and compassion.

b. New opportunities.
Teach neurotypicals what it's like to be autistic. Imagine a world without filters: colors have sound, tastes feel, sound has mass, and every noise has an equal priority, from the delivery truck outside to your teacher reading a story to the airplane overhead to the buzzing of the fluorescent lights. Sensory input is constant, pervasive, intrusive and sometimes physically painful. We need to understand that before we start to address behavioral issues.

c. Research priorities.
Start with us. Then move on to them.

Respondent 0052

a. Gaps and underrepresented research areas.
This area tends to be one of the hardest to get reliable data on just because of how many people are trying a whole slew of treatments all at the same time, backed up by all the "studies" that have been unprofessionally or immorally carried out and/or presented by many special interest groups. Still, I think more structured and well documented studies would be advisable, especially with many of the commonly proscribed bio-medical treatments and many of the mind altering drugs often thrown in and some updated studies on the effectiveness of many of the behavioral therapies out there. I worry that improper training and execution of many of the common treatments being used today may be leading many parents to unintentionally cause more harm than good to their kids.

b. New opportunities.
Everyone who works with ASD seems to agree that early diagnosis and treatment is the key, but that seems to be where they stop agreeing. We have the Bio-med crowd that has a million and one "cures" that they want you to try all at once, the part of the medical community that wants to just throw medications at it till it gets better or goes away, the part of the medical community that is reluctant to do much more than therapy, and the confused and frustrated patients and family that don't want to make things worse but often can't find enough information to do much more than make a semi-educated guess and take a leap of faith. There needs to be some real comparisons done and made available that actually look at all of it that families can use to examine these treatments side by side and make better choices faster.

c. Research priorities.
There are plenty of studies already about the effectiveness of many of these on Autism, but there are some still needing to be studied and I have yet to see any one that has effectively compared and contrasted them to each other. So the focus should be to complete and organize them into an accessible and usable format so that when a family gets told which treatments the doctor would suggest, they can easily access information on the suggestion and compare it to what else is available. Doing research is great, but if you don't know what to search for it is far too easy to be misled.

Respondent 0054

a. Gaps and underrepresented research areas.
Ivar Lovaas has received considerable funding from the NIMH to publish the adult outcomes of his research subjects, nearly half he claims have completely recovered from their autism. If he and the people whom he has worked with do not publish these findings, discontinue all funding for ABA research immediately.

b. New opportunities.
There are no interventions that are helpful.

c. Research priorities.
None right now, just look for a cure.

Respondent 0055

a. Gaps and underrepresented research areas.
There is no mention of treatments or interventions for adults. This is all about children. The majority of people with autism will become adults, the majority will be untreated as adults, and their "programs" are more expensive than their schooling was.  Therefore, Research ways to identify adults and find ways to help them.

b. New opportunities.
Conduct trials on the real effects and side effects of psychotropics. Adults with severe autism are typically taking multiple medications in off label uses. Do the trials; find what works, what doesn't, what is good, what is harmful. Right now we have a national uncontrolled experiment with adults with severe ASD, living in controlled settings as the guinea pigs.

c. Research priorities.
Establish effective practices for intervention with adults. Establish the prevalence of severe ASD in adults who were diagnosed with other disabilities in the years before DSM 1, II which did not include ASD and III and IV which had widening definitions. Such a discussion would also inform the "epidemic" debate.

Respondent 0057

a. Gaps and underrepresented research areas.
Stick to the scientifically validated methods to prevent wasting families' time and limited resources

Respondent 0059

a. Gaps and underrepresented research areas.
Tom Insel is the brother of Richard Insel who helped invent the Hib vaccine; I do not think he should be the one to decide where the research dollars should go to find the cause of autism since the cause is VACCINES. Does that sound like an honest thing to you?

b. New opportunities.
* The John Hopkins University- Modified Atkins diet or low glycemic diet for those with vaccine injuries needs to go public, and doctors need to be trained in its use and its importance. *Hyperbaric chambers do work soon after a stroke reaction to a vaccine. *Inflammatory diseases researched and learn how to stop it. *Doctors needs to be trained how to treat vaccine injuries, and how to prevent them. *Tom Insel has a vested interest in keeping the real cause of autism (vaccines hidden) because his brother help invent the Hib vaccine.

c. Research priorities.
*Titer test or other tests to see who already has immunity and not over-dose those that do have immunity and end of giving them autoimmune diseases. * Get rid of Tom Insel who has special interest in keeping the reason of the increase of autism hidden. His brother is Richard Insel who helped develop the Hib vaccine and earned over 4 million in the sale of this product.

Respondent 0060

a. Gaps and underrepresented research areas.
Improvements in the review process for conducting treatment research are needed and the Department of Defense CDMRP for autism mentioned in our comment earlier should be used as a model to create a higher degree of transparency and meaningful public participation. Public members, in recognition of the urgency needed to address this crisis, voted to quadruple the number of research projects in short-term objectives 1, 2 and 6. Treatment research is desperately needed.

b. New opportunities.
An increase in and improvement of research designs are that consider subgroups of responders versus the aggregate treatment response with recognition that treatment response can inform phenotype studies is needed. Treatment research is desperately needed. Quadruple research projects to identify biological signatures measuring changes in ASD core symptoms across the lifespan to 20 projects. Quadruple randomized controlled trials addressing co-occurring medical conditions to 12 trials. Quadruple safety and efficacy test for widely used interventions (e.g., nutrition, medications, medical procedures, etc.) that have not been rigorously studied for use in ASD to 20 interventions inclusive of partnering with ARI.

c. Research priorities.
As in Question 3, the public IACC members voted for substantial increases in short-term objectives in this section and were again outvoted by federal members. A higher priority must be placed in the items recognized by public IACC and the noted lack of urgency displayed by Federal members of the committee is not aligned with the needs of the community and must be remedied.

Respondent 0061

a. Gaps and underrepresented research areas.
Striking examples of successful treatments in animal models have emerged in the last two years. Robust animal models such as Frm1 Fragile X mice, Mecp2 Rett mice, Tsc tuberous sclerosis mice, mice with mutations in neuroligins and shanks, and the BTBR and BALB inbred strains, provide useful translational tools for discovering effective therapeutics for the diagnostic and associated symptoms of autism spectrum disorders. A pharmacological or behavioral treatment that reverses autism-relevant symptoms in animals will provide preclinical evidence for the value of a clinical trial.

b. New opportunities.
Mouse models with mutations in candidate genes for autism spectrum disorders offer an opportunity for rational design of treatments. Increased focus is needed to generate optimal mutant mouse models, and then to determine the phenotypic outcomes relevant to autism that appear in mice with a candidate gene mutation. The best models should then be made widely available as research tools to screen proposed treatments for efficacy. Examples of putative therapeutics include mGluR5 antagonists, rapamycin analogs that act through mTOR and ampakines that normalize dendritic spine abnormalities.

Respondent 0074

a. Gaps and underrepresented research areas.
Try looking at children who are recovering from autism, and ask their parents how they did it.

b. New opportunities.
Study GFCF diet, heavy metal chelation, hyperbaric oxygen therapy, use of antifungals & antibiotics to correct gut dysbiosis.

Respondent 0075

a. Gaps and underrepresented research areas.
70 years of behavior treatments springing from not-the-whole-truth guesswork made while always looking only at negative aspects, and only in frustrated, apprehensive, and worn down children, has done harm to many individuals with unrecognized useful capabilities. From our experience, people living on the autism spectrum can and will often approach near normal behavior and perform quite well, IF they are valued in society for their uncommon capabilities and skills, treated with respect, and challenged appropriately.

b. New opportunities.
Concerning the condition surrounding autism, the Medical Psychological Academic Community Claiming Concern With Autism has been naively chasing symptoms of a problem, mistakenly assuming the symptoms are the problem. If the Medical Psychological Academic Community Claiming Concern With Autism learns the requirements and utility of the SPRATS of an individual with autism symptoms, and the SPRATS interaction with the individuals Life Needs (R-W-N-S-eHa-UA-eHoE-ESaC-IdF-aHa-DHoE-EBI) while employing appropriate POSITIVE BEHAVIOR SUPPORTS, such WILL optimize the development of a large number of eccentric experts, with a positive outlook on self and society instead of a bore with poor social skills. These people, with a real chance for success as an independent adult, will be taxpaying contributors to society and not a drain.

c. Research priorities.
see IV b

Respondent 0077

a. Gaps and underrepresented research areas.
Examine criticisms of ABA. Why did the Canadian Supreme Court rule that the Canadian health service could not cover the treatment? If President Obama's healthcare plan passes what will or will not be covered under that plan? Are there any treatment plans that take advantage of the Aspie or Autie's natural strengths and abilities and encourage them?

b. New opportunities.
N/A

c. Research priorities.
The number one priority ought to be examining the best ways in which an intervention program could be tailored to the patient's strengths and weaknesses, thereby showing how such a person would be able to overcome deficiencies using innate strengths.

Respondent 0095

a. Gaps and underrepresented research areas.
More research is needed on how ABA is accredited and licensed. Many folks are out there saying they do ABA, when perhaps they do not have the true training. It would be nice to see more research into hippotherapy.

Respondent 0097

a. Gaps and underrepresented research areas.
To the best of my knowledge all current treatments are hit-and-miss with only anecdotal evidence to show their efficacy, and there's been little research or follow-up to evaluate most of what is offered. What strategies, interventions, medications, therapies, and any other treatments are effective when judged by a clear standard? Clear standards might include passing tests, ability to attend school, hold a job, etc, after a therapy is administered.

b. New opportunities.
The most promising avenue I see is a change in societal standards so that disability is accommodated as a matter of course. When people with autism and other conditions are accepted members of society and have a known role including useful work if possible, perhaps everyone will realize that we all benefit when everyone is included in the community.

c. Research priorities.
I believe research should only be funded that is based on sound science, conducted by qualified individuals, and not conducted with a profit motive in mind.

Respondent 0102

a. Gaps and underrepresented research areas.
Listen to the parents whose children are improving!!! Regardless of whether mainstream medicine has caught up yet, these are some of the interventions that work: Diet - removing gluten, dairy, msg, artificial colors and other foods that directly affect behavior Chelation - removing the mercury, aluminum, and other toxins that were injected into these babies Antifungals - containing the yeast overgrowth that occurs in the vaccine-damaged gut Supplements - Each child has deficiencies in vitamins, minerals, fatty acids and others. By testing for and properly supplementing, behavior and cognition improve! ABA therapy, sensory integration therapy, RDI and other therapies that break down tasks into manageable goals to help children learn to deal with the world around them. Hyperbaric Oxygen therapy - pre and post scans show increased blood flow in the brain, and improvements are reported in cognition, social skills, language, self-stimulatory behavior, and overall health.

Respondent 0105

a. Gaps and underrepresented research areas.
Alternative Medicine Treatments. Beyond conventional medication-based treatment of ASD that has poisoned our children without therapeutic effect, I would consider investigating Alternative and Complementary Treatments that are harmless and appear to work very efficiently in many cases, such as special physical exercise, Hatha Yoga (Yes, it works!),and physiotherapy, to name but a few.

b. New opportunities.
As a form of treatment, we need to try to use and to better understand the healing power of nature, physical exercise and activities outdoors, play with natural materials, clean dirt and water, and outdoor gym. Colored plastic materials can trigger too many sensory and toxic stimuli in the brain and should be avoided as much as possible. Synthetic carpets, painting materials and detergents, colored foodstuffs with additives, etc. should be equally avoided. Even vitamin D added to milk could be in question. As persons with ASD have a vulnerable neurological system, any of the above might affect them more than the rest of the population. Fine and elaborated studies with detailed protocols should be conducted.

c. Research priorities.
As two persons with autism are not alike, special individualized education and physical exercise are the best treatments for autism. But many times medication is necessary in periods of crisis or huge stress and anxiety or when co-morbidity, as epilepsy, is present. As many persons with ASD are usually on more than two different medications per day, the side effects of their interaction cannot be evaluated. Therefore, more studies on drugs used on autism and their effectiveness, must be conducted.

Respondent 0116

a. Gaps and underrepresented research areas.
I have observed my son make incredible progress with Pivotal Response Training, behavior therapy. I have discussed with doctors that there are other treatments that may help just a little, but if I could access those treatments in combination it may result in large changes for my son. New "alternative" treatments need to be covered by health insurance.

b. New opportunities.
Insurance companies need to understand autism is a medical problem and the symptoms relieved through a variety of treatments, including pivotal response training, behavior therapy.

c. Research priorities.
Insurance companies need to cover behavior therapy as a medical treatment for a medical condition.

Respondent 0119

a. Gaps and underrepresented research areas.
The low-functioning population with ASD continues to be excluded from research. The nonverbal group (those who cannot speak) is estimated to comprise 20% of the autism population and the low-communicating (those who can speak but are unable to communicate) is estimated to be about 30%. Together this group, which is often referred to as "low-functioning autism," makes up about half of the autism spectrum. Yet because of challenges presented by their profound communication and behavioral deficits, this 50% of the autism population has gone almost entirely uninvestigated and successful interventions have not been developed. In particular the nonverbal group has been historically underrepresented in research. This group continues to be almost completely excluded from current research and is rarely included in prospective studies. Combined, this 50% of the autism spectrum has been left behind and has benefited little in spite many advances in the field over the past decade.

b. New opportunities.
For the nonverbal and low-functioning, little has changed in terms of research or intervention. We need to focus on five areas in order to begin to include this group in research and develop useful interventions for them. 1) Phenotyping: Increase our understanding of this population by characterizing this subgroup and the phenotypes within it through multi-system investigation including cognitive, genetic, metabolic, neuroimaging, electrophysiology and other indices. Develop phenotype criteria for research inclusion. We know almost nothing about them. 2) Characterizing Cognition: Develop noninvasive technologies that can measure cognitive function in the absence of behavioral compliance. There is a wealth of research in detecting and measuring cognitive function in other noncompliant populations such as infants, primates and those with locked-in syndrome. (Continued)

c. Research priorities.
3) Communication Interventions: Research and develop interventions that can improve communication for this group. Multiple approaches will be required as this will likely be a very heterogeneous group. There is much to be learned from research in other communication disorders. 4) Standardized Tools to Measure Cognitive and Psychosocial Function: Develop new and adapt existing standardized tools to measure IQ and psychosocial function. If basic communication can be established (i.e. pointing or choosing) many validated measures can be adapted to multiple choice formats and used with the nonverbal population. 5) Include Low-functioning Subjects in Research Now: Although including low-functioning subjects is often impossible due to profound communicative and behavioral handicaps, an estimated 10-15% are compliant and can participate in research that does not require expressive language. A simple check list could be developed that would identify these candidates for inclusion in research now.

Respondent 0125

a. Gaps and underrepresented research areas.
In the words of Dr. Paul Law, there has been an ongoing $3 billion project looking into treatments and interventions conducted in families' homes across America. Redundant research on alternative therapies is a waste of time, energy, and money. Even a broken clock is right twice a day. I would prefer to see the limited research dollars spent more on quality pharmacological interventions. I do think, however, that the Department of Education has shirked its responsibilities to our children by not producing a best practices manual for autism education. The materials produced to date are quite out of date and not truly best-practice.

Respondent 0130

a. Gaps and underrepresented research areas.
As mentioned in a previous post to the IACC, I feel that studies of therapies for epileptic seizures have not been well represented in the planning for future research. In section 4, GI symptoms and sleep disorders are mentioned, but seizures may be more common (30%). Antiseizure medications such as Lamotrigine, Carbamazepine etc., may in fact be used more frequently than are antipsychotics such as the FDA approved Risperdal.

b. New opportunities.
Possible research could include: Surveys of children and adults to find out which medications are currently being used for treatment of seizures, and if there are any side effects that seem specific to autism spectrum disorders (e.g.: irritability, is it just seen with Levitiracetam or other medications as well). Basic science research could include using animal models of autism such as Valproate exposed rat pups to identify neurotransmitter changes which could be targeted as therapies (For instance, if GABA is altered in animal models, could try Vigabatrin as a potential therapy). Medication comparison trials might be helpful, using medications identified in the survey mentioned above; (so if in fact Carbamazepine and Lamotrigine are popular with clinicians, a randomized study to crossover from another med could be designed and funded. For example Phenytoin to Lamotrigine could be compared to Phenytoin to Carbamazepine).

Respondent 0131

a. Gaps and underrepresented research areas.
a. What relevant research topics are missing or underrepresented in section IV? Evidence based comparative effectiveness research that identifies effective treatments is needed. While there are many early-stage efficacy investigations available which provide preliminary support for the efficacy of speech-language pathology interventions to improve speech, language, and social communication, much more research is needed. In particular, group design studies directly comparing the effectiveness of different approaches using randomly assigned, matched control samples with sufficient sample sizes and adequate statistical power are needed. To date, the evidence is inconclusive regarding whether any one approach is more effective than another. There also needs to be greater emphasis placed on sub-groups within the ASD population and the responsiveness of these sub-groups to various treatment approaches.

b. New opportunities.
Comparative effectiveness research should clarify our understanding of the effectiveness of different intervention approaches, especially with respect to which approaches provide the most meaningful communication and social interaction outcomes for young children with autism. Given that the core features of ASD entail disordered social communication and language use, the discipline of speech-language pathology has much to contribute to future research evaluating the comparative effectiveness of approaches to treating social, communication, and cognitive impairments in ASD. Research is also required to determine how common practice in screening, assessment and treatment is impacted by state and local regulation and state interpretation of federal guidelines.

c. Research priorities.
Conduct five randomized controlled trials of early intervention for infants and toddlers by 2011 ASHA suggests that these trials be directed to evaluating the comparative effectiveness of approaches to treating speech-language, social, communication, and cognitive impairments in ASD. Examination of the impact of changes in frequency, intensity, and duration of treatment is a critical issue to be included in these trials. By 2012, conduct three randomized controlled trials to test the efficacy and/or effectiveness of interventions to treat speech, language, social communication, and cognitive impairments for school-aged and/or adolescent persons with ASD evaluating the comparative effectiveness of approaches in ASD. Examination of the impact of changes in frequency, intensity and duration of therapy is a critical issue to be included in these trials.

Respondent 0133

a. Gaps and underrepresented research areas.
Cannot really look at this unless the models are in place and the sub typing work has gotten underway, because the variation is HUGE and so are the treatments that "work"

c. Research priorities.
ARI has launched a parent database for parents to put in information about child and which treatments work and don't using symptomology. It is a start.

Respondent 0137

a. Gaps and underrepresented research areas.
Metabolic interventions that normalize redox and methylation status can be effective in treating autism, especially if they are provided at an early age. However, these treatments receive little attention because they are not covered by patents and they actually compete with proprietary drug treatments, representing a threat to the pharmaceutical industry, rather than an incentive. To address this, a novel industry/government partnership is needed to increase research, development and marketing of metabolic interventions.

b. New opportunities.
There is some limited possibility that novel proprietary agents can be developed that will normalize redox and methylation status in autism. However, this will require additional research to identify novel targets related to these metabolic pathways. Research into epigenetics.

c. Research priorities.
As above, priority should be given to evaluating and optimizing treatment regimens aimed at normalizing redox and methylation pathways and to understanding how those pathways relate to development and to normal neurological development.

Respondent 0140

a. Gaps and underrepresented research areas.
-The biomarkers for medical problems concomitant to an ASD diagnosis. -A protocol of testing in blood, urine and fecal stool non-invasive- including under dietary changes- to properly test mitochondrial, nutritional, immune, viral/bacterial/fungal metabolic and biochemical status in ASD on time. -A protocol of proper treatment of the imbalances found, considering the other medical problems many times present in different ASD subgroups that should be properly explored and analyzed. -The proper analysis of adverse reactions to xenobiotics from the physiologic, metabolic, biochemical and developmental point of view in ASD. -The role of medical support, family, school attitudes. Strategies of educative inclusion.

Respondent 0141

a. Gaps and underrepresented research areas.
I think that in addition to researching what will help, we also need to look at what won't help. I've seen otherwise appropriate therapies, such as ABA, given to children in environments so bombarded with sensory input that the child shut down. I've heard parents and teachers punish a child for having a meltdown "for no reason" when it was plainly clear to me that the child was experiencing sensory torture. No one would expect a person to learn or behave well if they were being stabbed with a knife over and over. Autistic people often experience that level of pain from seemingly innocuous stimuli, such as a wrinkle in a sock, the whir of the air conditioning, or the smell of a person's hair. Before concluding that a given treatment does not work, identify and eliminate all sensory problems in the environment.

b. New opportunities.
Instead of wasting money to prove once again that vaccines are not linked to autism, I think you should study why people believe in conspiracy theories, and what we can do to cure prevent it. Research treatments and interventions that have helped holocaust and AIDS deniers. Establish a genetic bank of conspiracy theorist cell and tissue samples to identify risk factors and eventually lead to prevention and/or cure. Is believing in anti-vaccine theory linked to intelligence, emotional instability, or other genetic risk factors? Does is strike all populations equally? What can we do to help these people have a better quality of life? It is an enormous financial and psychological burden to care for an anti-vaccine theorist. The money they spend on dangerous, ineffective treatments for their children is enough to bankrupt a family, costing over $4 million across the lifespan of the theorist. Their numbers are increasing to epidemic proportions. Action is needed now.

Respondent 0146

a. Gaps and underrepresented research areas.
Recommend research into other comprehensive, developmental treatment models such as DIR/Floortime.

c. Research priorities.
Recommend priority be given to comparing the efficacy of treatment models, such as ABA and DIR/Floortime. Recommend more funding of treatment and intervention for teens and adults with autism.

Respondent 0148

a. Gaps and underrepresented research areas.
1. ABA research has been plentiful in comparison to Relationship-based interventions. This is due somewhat to the higher degree of difficulty constructing sound measurements and standard procedures for measuring core developmental skills and how well the latter treatment approach restores and optimizes developmental growth.

b. New opportunities.
See answers to Question #1

c. Research priorities.
same

Respondent 0151

a. Gaps and underrepresented research areas.
We need to recognize that ASD is also a biological disorder and thus some treatments are very effective. For both our children chelation and vitamin B12 injections made significant improvement. For our son, sequenced amino acid modulation (SAM) made a step change in his confidence and ability to communicate. Our daughter did not have the same biological signature and thus the SAM was not attempted for her. She takes numerous supplements to control her neurotransmitters (over stimulation - abnormal glutathione, serotonin, adrenalin). This has been effective at allowing her to sleep at night and somewhat focused in the daytime, but she still has a long way to go. She also has candidas, which is a constant battle of very limited diet supplemented with probiotics. I hate to see such limited attention on these treatments. These are also very expensive and it would be wonderful if insurance supported some of these. Both children are also involved in behavioral therapy, which is good.

b. New opportunities.
Perform additional studies (or gather information from existing studies) that support biological treatments in parallel with behavioral therapy.

c. Research priorities.
Much research has already been committed to behavioral therapies. It is time to place focus on other biological therapies that can be used in concert with existing proven techniques. Need to pressure insurance companies to support families with autism in covering currently "alternative treatments."

Respondent 0153

a. Gaps and underrepresented research areas.
Reducing or eliminating prenatal ultrasound events.

b. New opportunities.
Whether babies born without ultrasound events are less likely to be autistic.

c. Research priorities.
More highly prioritize trials of births without ultrasound events.

Respondent 0154

a. Gaps and underrepresented research areas.
Gluten free, soy free, Casein free diet and Probiotics to heal the gut.

b. New opportunities.
Seek out a DAN! (Defeat Autism Now!) physician....seek out ARI Autism Research Institute, Dr. Bernard Rimland.

Respondent 0157

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

Respondent 0161

a. Gaps and underrepresented research areas.
BIOMEDICAL TREATMENTS. A study about to be released by the NIMH indicates a recovery rate of almost 40% of those surveyed. A RECOVERY rate! Do you understand that the current medical opinion says that is IMPOSSIBLE? So ask those parents with recovered children: which of you used biomedical treatments? Which of you used traditional therapies alone? Which of you did nothing and your child just magically grew out of it? The vast, vast majority will tell you they used the biomedical protocol--dietary/nutritional, immunological, and toxicological. AUTISM IS TREATABLE. Every day, more videos of recovered children are being posted on YouTube. That's the only way to get the word out when our doctors refuse to listen. My own son has accomplished 18 months of developmental progress in just 4 months of biomedical treatment. I have deeply compelling before and after videos--yet his pediatrician REFUSES TO WATCH THEM. Biomedical is the answer and you need to start listening.

b. New opportunities.
1.) The gluten-free, casein-free diet. 2.) Digestive damage and infections, including bacterial, fungal, and parasitic infections. Antibiotic/antifungal/antiparasitic medications. 3.) Key nutritional supplements such as Zinc, Magnesium, Omega fatty acids, Vitamin C, Vitamin D. 4.) Treatments for immune dysfunction: MB12 shots, TSO pigworm therapy 5.) Treatments for mitochondrial dysfunction: CoQ10 6.) Chelation of heavy metal poisoning.

c. Research priorities.
In the order listed above, because that is the order that parents will need to progress through the treatments, and the sooner they can be convinced to put their children on the GFCF diet, the better their chances for recovery.

Respondent 0168

a. Gaps and underrepresented research areas.
A major perspective missing is how to tap into and understand the experience and needs of people with autism directly from them and how this information can inform interventions. There should be a goal focused on examining perspectives of experts of actual experience on what is needed to improve daily life, and then initiatives to translate this knowledge into testable intervention strategies.

b. New opportunities.
Incorporating the perspectives of people with autism is needed.

c. Research priorities.
It is important to know what works, but also to know what works in real-world settings. So, priority should be on using interventions in typical life situations, not special lab schools.

Respondent 0173

a. Gaps and underrepresented research areas.
The effects of puberty and hormones on ASD symptoms, possible regression, and child's needs. What should parents look for when adjusting treatments (behavioral and medicinal) during puberty?

c. Research priorities.
Please continue to realize that Autism is not terminal, these kids do grow up. Also successful early intervention does not necessarily mean cure. These kids still need some level of support. That part needs to be better defined and communicated. The social scene is brutal after about 3rd grade.

Respondent 0176

a. Gaps and underrepresented research areas.
Parenting a child with ASD is intense and increasingly socially isolating as children age; thus, parents should be informed about, and encouraged to pursue, any interventions that promise to ameliorate behaviors and increase independence, functional communication skills, and educability. While this may sound like a sweeping and nebulous statement, it is fair to allow parents to investigate and try any and all biological and behavioral interventions that may help a child. No therapy, intervention, or course of treatment is easy for a child, whether it is administered at home or in an office, by a parent or a professional, and a child's resistance, combined with the inherent difficulty in administering the treatment itself (such cooking and eating a special diet) makes the prospect of intervention fatiguing from the outset. However, parents pursue intervention because the behaviors and manifestations of ASD are so challenging that any promise of improvement is worth the effort.

b. New opportunities.
Advance research and knowledge regarding dietary interventions, their efficacy and applicability, and educate parents and care teams (both Early Intervention and school-based educators and professionals) in supporting the efforts necessary to test this effective tool for reducing behaviors, increasing focus, and improving educability. Research chemical sensitivity on learning, perception, and performance with children with ASD. Remove chemicals and toxins from homes and educational settings, including perfume from teachers and cleaning products, as well as lighting and sound changes to minimize sensory overload. Increase research and knowledge on assessing perspective-taking for verbal children with ASD. Use this tool (developed by speech-language pathologist Michelle Garcia Winner) in special education settings and inclusive classrooms as children with ASD tend to lose social skills the longer they are mainstreamed. Give all children with ASD auditory integration training.

c. Research priorities.
Make biological interventions first priority. Research reduced behaviors and increased attention focus and attention span using an individualized diet, supplements, chelation, environmental detoxification, and exercise. Determine how the research findings can be best implemented in care teams consisting of parents and Early Intervention specialists and school-based personnel. Second, research the efficacy of 1:1 aides in mainstream classrooms for children with ASD (speaking children). Measure whether the use of an aide assists in retaining or increasing social skills/conceptual understanding (these skills tend to decrease when unaided in mainstream settings). Third, apply Auditory Integration to all students with ASD. Measure their advances. Fourth, research perspective-taking and functional communication skills and assessments with children and youth with ASD. Develop and implement programs to measure advances based on increased functional communication and social skills.

Respondent 0181

a. Gaps and underrepresented research areas.
IV. Which Treatments and Interventions Help Again, we strongly support resources in the previously mentioned AAP webinar on identification and management. We also highly recommend the National Research Council's Educating Children with Autism at www.nap.edu This link exits the Interagency Autism Coordinating Committee Web site which was clinically researched interventions proven effective in the treatment of autism thus far. We agree with the IACC recommendations to include occupational therapy and sensory integration. Under communication, we would suggest the addition of speech therapy particularly in the area of pragmatics. In addition to augmentative communication devices, we support the use of total communication which is speaking and using sign language simultaneously. (Continued)

b. New opportunities.
We would also suggest looking at the AAP clinical practice guidelines and policy statements on autism which do NOT recommend casein/gluten free diets, nutritional supplements, chelation, or secretin (see http://www.aap.org/advocacy/releases/oct07autism.htm This link exits the Interagency Autism Coordinating Committee Web site and http://www.aap.org/pressroom/issuekitfiles/ManagementofChildrenwithASD.pdf This link exits the Interagency Autism Coordinating Committee Web site). We would recommend the use of the National Institute of Health research of the National Center for Complementary and Alternative Medicine found at http://nccam.nih.gov This link exits the Interagency Autism Coordinating Committee Web site. We would also suggest the addition of social skills therapy. (Continued)

c. Research priorities.
Lastly, in looking at three randomized controlled trials of interventions for school-aged and/or adolescents by 2012, the IACC should keep in mind the recent GAO report at www.gao.gov/highlights/d09719thigh.pdf This link exits the Interagency Autism Coordinating Committee Web site on the use of aversive interventions and restraints which disproportionately affects children with autism in school and affects outcomes, as well as the 8/3/09 letter from the U.S. Dept. of Education at www.ed.gov/news/pressreleases/2009/08/08032009a.html This link exits the Interagency Autism Coordinating Committee Web site on the same topic. It is our position that the use of aversives is never justified and that the use of restraints must be strictly limited to those situations where it is absolutely necessary to protect the safety of the person with autism or others and only to the extent necessary to protect that safety. Further, positive behavior supports must be utilized as the preventive and intervention method of choice.

Respondent 0187

a. Gaps and underrepresented research areas.
Many applications that are now being used have not been properly examined to see if they apply to nonverbal ASD individuals. No research is being done on this critical area. Expensive and time-consuming therapies are used across the spectrum, although needs of nonverbal individuals may be quite different from those who are higher functioning. One size does necessarily not "fit all" yet even caring professionals apply the same methods for all of their clients, and perhaps this is not only based on very limited options, but also because NO RESEARCH IS BEING DONE to see if in fact this is an appropriate approach for nonverbal ASDs.

b. New opportunities.
Testing, testing, testing. Among other priorities, research must be done to develop standardized testing for nonverbal ASDs to measure cognitive functioning and development. Otherwise, there is no way to know if interventions and therapies are too difficult or too easy. Because most nonverbal ASDs are not able to give 'typical' social cues, and because many are limited in typing or other hand-related forms of communication, there is no accepted, defined way to access treatment. -See also other comments.

c. Research priorities.
Research to develop testing. See notes above.

Respondent 0190

a. Gaps and underrepresented research areas.
In the mix of various intervention strategies to be studied (inclusive of behavioral, developmental, and cognitive therapies), it is hoped that consideration will also be given to models that focus on early intervention as a system of supports and services for families to assist them in helping their children develop and learn (research to support how children learn best through everyday experiences and interactions with familiar people in familiar contexts).

b. New opportunities.
With the Aspirational Goal of developing effective interventions, an opportunity exists to more fully study assessment strategies that result in the mapping of a specific plan of interventions tailored to the unique abilities of individuals with ASD. Through the Ohio Center for Autism and Low Incidence (OCALI), work has been underway to promote a framework for a comprehensive program planning system for students. This framework considers the underlying needs and characteristics of ASD and builds upon an individual's strengths, special interests, and environmental factors. This then leads to a combination of interventions that are: designed specifically for the individual; systematically embedded throughout the day; and are more proactive and fundamental. Increased research that investigates models of service delivery that recognize the importance of an individualized comprehensive planning approach, across settings and throughout an individual's day, should be further explored.

Respondent 0194

a. Gaps and underrepresented research areas.
While more medications and behavioral interventions are in the pipeline for individuals with ASD, the vast majority of clinical trials conducted to date has not taken into account individual differences, and only have addressed how an individual treatment compares to a placebo. Very few studies have been conducted that make head-to-head comparisons of two or more treatments. Thus, existing efficacy trials have provided limited information about which individuals benefit most from which treatments. Given the early stage of development of comparative effectiveness research in the field of autism, it is imperative that large clinical registries and clinical trials networks within real world service delivery settings be developed and sustained to move the field forward.

b. New opportunities.
The availability of comprehensive databases and patient registries that include detailed phenotypic data, including biospecimens, is critical to support the development and application of biologically based approaches to diagnosis and treatment of individuals with ASD. While the NIH recognizes and encourages biospecimen collection, it is important to invest in the development of infrastructure to support cost-effective methods for specimen collection, storage and distribution. It is also important to leverage existing NIH funding (CTSA sites/GCRCs) to support these types of collections. Furthermore, the development of centralized bio-specimen repositories that move beyond collection of DNA is critical to better understand the co-morbid medical complications associated with autism across the lifespan.

c. Research priorities.
Given that ASD is an extremely heterogeneous group of disorders, it's clear that the development of effective treatments will require a personalized medicine approach that takes into account individual differences in etiologic, phenotypic and biologic characteristics. It is important to support treatment research with special populations within ASD that are more phenotypically distinct in order to better target these studies and reduce costs of large RCTs. These populations can include lower-functioning individuals, individuals with regression or individuals with distinct co-occurring medical or psychiatric conditions. Another treatment area that is underexplored is crisis intervention, especially for adolescents. Some adolescents with ASD experience severe regressions during their adolescent years and many require hospitalizations to adjust medications or receive intensive behavioral treatment.

Respondent 0196

a. Gaps and underrepresented research areas.
I think you are severely underrepresenting low-communicating and noncommunicating population in your research. There are few interventions that work for these individuals and virtually no research to develop them. We need research specifically focused on this group. This constitutes a large portion of the autistic community. They need help NOW!

Respondent 0199

c. Research priorities.
Please help us by providing more research and placement opportunities for our children who are nonspeaking. It is painful to both ourselves as parents and our child when they are not properly respected as individuals because of their unique disabilities.

Respondent 0200

a. Gaps and underrepresented research areas.
What is being developed for nonverbal children? Can you develop something? There is so much technology and we learn more every day. It seems unbelievable that we cannot help these children. It would change their lives and the lives of their families.

Respondent 0202

a. Gaps and underrepresented research areas.
Giving our loved one a means of communicating

Respondent 0203

a. Gaps and underrepresented research areas.
Supported typing (also known as Facilitated Communication)

b. New opportunities.
What is happening when kids who don't ordinarily attend to what we are trying to teach them can sit at a keyboard and organize their thoughts to type a response? Can we make better use of computers for learning/communicating?

c. Research priorities.
Communication Sensory issues Neurological issues Brain plasticity and autism

Respondent 0208

a. Gaps and underrepresented research areas.
The missing research is in getting individuals w/ASD who are nonverbal to talk. There needs to be more research done on effective treatments for that.

Respondent 0209

a. Gaps and underrepresented research areas.
I am the mother of a nonverbal child with autism. I feel there needs to be much more research aimed at interventions toward this group. Little is known about how to help this group learn to communicate and function better within the family, classroom, and society. Please include much more research funds toward this group of the autistic population.

Respondent 0210

a. Gaps and underrepresented research areas.
Research is needed as to how to train special education teachers to work with individuals with ASD across the lifespan, the need for specialized training in ASD, and the documentation of educator effectiveness in working with children on the spectrum. Little if any funding or priority is given to short and long term research objectives directly involving public and private schools. Research on interventions that target needs of adults and the training of providers to work with this population.

c. Research priorities.
Priority should be placed on interventions that improve functioning and quality of life for adults with ASD.

Respondent 0211

a. Gaps and underrepresented research areas.
Non- medicinal treatments which are affordable, like diet.

Respondent 0212

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

b. New opportunities.
5) There are few, if any, interventions that work for these individuals and currently there is no research to develop them. We need research to develop successful interventions for this group. 6) In spite of lack of communication being their most severe deficit, there is currently no research to develop communication interventions. We need this kind of research now. 7) Please consider the role of strep in suppressing speech.

c. Research priorities.
9) Almost nothing is known about nonverbal and low-communicating individuals, yet there is no research focused specifically on better understanding this group. 9) In spite of tremendous advances in autism research in the past decade, this group has not benefited from the progress that has been made and little has changed for them.

Respondent 0213

a. Gaps and underrepresented research areas.
Research for nonverbal, low-functioning individuals is underrepresented.

b. New opportunities.
Interventions focusing on communication, regulation as it impacts behavior and motor planning would help.

c. Research priorities.
Interventions focusing on communication, regulation as it impacts behavior and motor planning would help.

Respondent 0215

a. Gaps and underrepresented research areas.
Research into causes, effective treatments and interventions for those individuals with autism who are nonverbal and where other, newer treatments have been all tried but not worked.

b. New opportunities.
Same as above.

c. Research priorities.
I'd prioritize those communication abilities that impact 1)employment or volunteerism success in a workplace 2)ability to be a successful 'roommate' in a housing situation and 3)any community-based interventions that promote more successful and safe interactions with typical residents of your community.

Respondent 0219

a. Gaps and underrepresented research areas.
More research based on evidence of specific teaching procedures based on the Science of Applied Behavior Analysis.

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

c. Research priorities.
4)Nonverbal and low-communicating people with autism should be included in the Strategic Plan for Autism Spectrum Disorder Research. 5) There are few, if any, interventions that work for these individuals and currently there is no research to develop them. We need research to develop successful interventions for this group. 6) In spite of lack of communication being their most severe deficit, there

Respondent 0221

a. Gaps and underrepresented research areas.
About 50% of people with autism are nonverbal or have minimal verbal communication, including my 19 year old son. More research needs to be done to find ways to help these individuals communicate their needs, wants, pain and discomfort and share their hopes and dreams. We need to encourage research in this area ASAP. These folks are the most difficult to work with and need the most help.

b. New opportunities.
Many of these people who are nonverbal are good with computers and can type. I would focus on typing to communicate.

c. Research priorities.
Any research in this area would be helpful at this point when none is being done.

Respondent 0222

a. Gaps and underrepresented research areas.
There is very little provided for nonverbal or low-communicating individuals with autism. Also, older individuals with autism seem to be left out of the mix. We need more research into treatments and interventions to help beyond the early intervention years.

b. New opportunities.
Include non verbal/low-communicating individuals and older individuals in research efforts.

Respondent 0224

a. Gaps and underrepresented research areas.
There is not enough research on how to help nonverbal children. This would fall into research as well on why some children regress in skills. These seem to be the children most greatly affected by autism. They had skills which they lost and have not been able to gain back. Why did they regress? What enzyme or gene failed to kick in to keep their development going and caused them to regress? These are usually the children who are nonverbal. What can we do when that regression first begins to stop it? My son still regresses to this day at 10 years old. Also, more research needs to be done on the sensory aspects of autism. What are the defects in those who are nonverbal and how can we get around them. Also, the motor-planning is derailed in the nonverbal. Why, what can we do to get around that?

b. New opportunities.
We need more sophisticated methods to teach communication to the nonverbal, than PECS. We need to delve more into how computers can help with communication. Just like computers help the paralyzed communicate, we need to use computers to help us realize the thoughts and needs of those unable to speak.

c. Research priorities.
We have 20% of autistic people who are nonverbal and combining that with those who can speak, but are "low communicators", you have 50% of autistic people trapped in their own bodies, unable to let people know their thoughts and needs and whether something hurts or they are being abused. If that isn' t priority #1, I don't know what could be. How about making the most vulnerable, the most affected, the highest priority. It's easy to fix mild problems. The challenge and the most priority should be the hopeless and forgotten one's who can't speak for themselves.

Respondent 0227

a. Gaps and underrepresented research areas.
As a parent of a child with autism, I strongly feel that research needs to be done on interventions that will help nonverbal and low-communicating children. There has been a dearth of research done on this population and this population needs the most help. Please, please consider this as a top priority!

Respondent 0229

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

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

Respondent 0232

b. New opportunities.
Rapid prompting method needs to have further funding for research. It is a teaching method that empowers nonverbals to spell out their thoughts.

Respondent 0235

a. Gaps and underrepresented research areas.
There is very little information or help offered for non verbal or low-communicating autistic teenagers and young adults. Research needs to focus on what interventions will help improve the lives of these people with no voice. What methods work and what does not? Can new methods be developed?

b. New opportunities.
More study of teenagers and young adults who are non verbal or low-communicating needs to happen. What changes happens at puberty? Does regression often happen at puberty? Why does regression happen at puberty?

c. Research priorities.
The most important issue is improving communication for those with no voice and for Autistic people who are non verbal and low-communicating. New methods are needed for those people that the traditional pointing at pictures does not work well for.

Respondent 0236

a. Gaps and underrepresented research areas.
A History of Autism with treatment options would be a terrific research project. Every few years there's another "cure treatment" and the old ones don't' go away either, some are just repackaged to look new for the next round of vulnerable parents. We need to have a clear understanding of what is sound and finally provide some guidance for families!

b. New opportunities.
Comparative studies separating quackery from sound and effective treatment.

Respondent 0242

a. Gaps and underrepresented research areas.
Hi. I am the mother of a smart, sweet-tempered, 5.5 year old boy with autism. In some ways my son is low-symptom in that he is pretty flexible (no sound, schedule, etc. rigidities), and he can show/receive affection. But he has a great deal of trouble is social skills and communication. He is almost totally nonverbal (/b/, /m/, /p/, \"buh buh ma ma"), and he consistently does not respond speech/language very well. His eye contact is poor, his "Theory of Mind" is poor, and his receptive language for multi-step directions is currently fairly low but progressing. My son has been receiving intensive intervention since the age of 2 and he makes continues to progress, but according to HIS schedule. He will be mainstreamed in kindergarten this year with a personal aide and an overall spec ed aide in addition to the classroom teacher. He already has many pre-kindergarten academics down pat -- numbers, letters, colors, shapes, SIGHT WORDS, beginning math, etc.

b. New opportunities.
My son has been receiving intensive intervention since the age of 2 and he makes continues to progress, but according to HIS schedule. He will be mainstreamed in kindergarten this year with a personal aide and an overall spec ed aide in addition to the classroom teacher. He already has many pre-kindergarten academics down pat -- numbers, letters, colors, shapes, SIGHT WORDS, beginning math, etc. My son has varying success with communication. He uses PECs (Pictoral Exchange Communication System) VERY WELL. After 3 years of intervention he is successfully nodding his head to respond YES / NO. He successfully uses gestures and pointing. More complicated communication remains to be developed.

c. Research priorities.
I am EXTREMELY interested in strategies and interventions which would allow a nonverbal child to efficiently learn more advanced / abstract academic concepts. MY SON IS FULLY SMART ENOUGH TO ABSORB THIS LEARNING, if it could be presented appropriately. I am EXTREMELY interested in assessments of the various assistive technologies to see which are most effective. I am interested in the practical management of a classroom with mainstreamed special ed children, to identify best practices. My son is a representative of a population that CAN MAKE PROGRESS, with the appropriate techniques and resources. I hope some research funds can be allocated specifically to study the situation of the nonverbal and low-verbal autistic population.

Respondent 0243

a. Gaps and underrepresented research areas.
As the parent of two children on the autism spectrum who are often referred to as "low-functioning" and "nonverbal," I am very disappointed in the lack of research into this population. Specifically, there needs to be more research into effective communication strategies for this population.

b. New opportunities.
Research opportunities seem to focus on high-functioning children and very young children. We live in close proximity to Vanderbilt and frequently participated in research until my children reached school age. Despite the increase in the number of studies being conducted, my children are not eligible for participation in almost all of them because of their functioning ability. This is a significant portion (20-50%) of the autistic population that is not being studied. It is not the case that interventions developed for the higher functioning population will work equally well in the lower-functioning population. Research centers like Vanderbilt exist around the country, and this provides an opportunity to study people with autism at all levels of functioning nationwide.

c. Research priorities.
Research that focuses on lower-functioning or lower-communicating individuals with autism is necessary to improve the quality of life for these individuals. Very little is known about this population, and it cannot be assumed that results gleaned from studies of higher-functioning individuals will hold true for the lower-functioning cohort. In addition to supporting studies specifically designed for this population, it is also necessary to tailor broad studies so that lower-functioning individuals with autism can participate.

Respondent 0244

a. Gaps and underrepresented research areas.
Under third paragraph...the reference to Lord and McGee, 2001 and McClannahan, MacDuff, & Krantz, 2002; Weiss & Harris, 2001...More up to date data instead of referencing 2000-2002 data... Suggest adding more detailed data on improved skills with adolescent and adults instead of referencing the 2000-2002 data...This means that the reader which will most likely be a family member trying to get more information will have to look up the reference... Under 4th paragraph: Medications...Need more detail on Respiradone usage and side effects in children under age 4...Stress the side effects of this medication in detail since the parents/caregivers will need to be fully informed... Under 5th paragraph: nutritional supplements and diets (gluten-casein free diets). These diets are very restrictive and in some instances can be harsh or unpleasant to the recipient that is on them...especially a child that has not been diagnosed with celiac disease.

b. New opportunities.
Under first Bullet: 'Clinical trials that assess the safety and efficacy of widely used interventions that improve functioning and quality of life for people with ASD across the lifespan ....' Place this last in order of priority and make a separate bullet... Bullet # 3 'Early interventions...' should come before bullet # 2...'Interventions...

c. Research priorities.
No additional comments...

Respondent 0245

c. Research priorities.
Sensory Integration and visual and auditory therapy.

Respondent 0246

a. Gaps and underrepresented research areas.
Chelation of heavy metals supplement with vitamins, minerals, to keep body in homeostasis therapies to address deficits: auditory, visual, sensory

b. New opportunities.
These work - for my son and for countless others with autism

Respondent 0247

a. Gaps and underrepresented research areas.
I want to see more research dedicated to nonverbal/low-communicating autistics. My son is mostly nonverbal (he'll talk if we make him) but I know he's a bright and cool kid. If I and his teachers could just communicate with him, I know he'd be a fully productive member of society.

b. New opportunities.
Lots of new technology based solutions. Ones for wide spread relatively inexpensive platforms like the new iPod would be great (my son has one uses it like a pro)

c. Research priorities.
More funding for non verbal/low-communicating children

Respondent 0251

a. Gaps and underrepresented research areas.
Research alternative therapies to address the biomedical aspects of ASD

b. New opportunities.
Better treatments and more treatments.

c. Research priorities.
Biomedical testing, addressing those issues, testing investigational therapies such as HBOT etc

Respondent 0253

a. Gaps and underrepresented research areas.
I am a Speech Therapist with 25 years experience in the educational setting. When I first started working most school districts only served a few students with autism. Last school year, I served more than 20 students with autism on my elementary school campus. More than half of those children were either totally nonverbal or, the limited language they did exhibit was virtually non-functional. There are more and more of these children enrolling in the public schools because their parents, rightly so, are desiring that their child experience some form of normalcy. Please do not forget that these children, because they are suffering from autism in the severest form, are not only unable to comprehend and understand in the simplest form, but they are human beings without the ability to communicate, verbal or nonverbal, their simplest desire. More research in the area of nonverbal/limited language autism is imperative if they are to become functional, independent people. Thank you.

Respondent 0259

a. Gaps and underrepresented research areas.
Communication devices. We need to research the use of communication devices in younger children so that those in power will start using them earlier. My daughter is being assessed only at our request and finally in 6th grade. This should have been started much earlier, but the schools will not do this without effective research that proves to them that it is vital. We also need better understanding of how to help low-verbal and nonverbal individuals to speak.

Respondent 0261

a. Gaps and underrepresented research areas.
Treatments for nonverbal and low-communicating people.

Respondent 0262

b. New opportunities.
As the father of a child who has not responded to any kind of therapy, I have a difficult time with this issue. Children without verbal or communication skills are least served by current therapy methods, and I can only ask that every effort be made to advance the state of interventions and therapy for these children.

Respondent 0265

a. Gaps and underrepresented research areas.
Research needs to be done on children who are non-vocal or do not communicate through spoken language.

Respondent 0268

a. Gaps and underrepresented research areas.
Services are needed that involve the body mind and spirit. Therapeutic environments that help the individual become more comfortable in his body should be the number one goal. There is a myriad of alternative therapies that would be helpful, in addition to a form of entrainment using a person with a dominant rhythm to serve as a catalyst.

b. New opportunities.
Communicating at a soul level, telling them you are aware of their competence is primary. Providing a safety net and physical presence for new explorations, preventing fear or failure through slow removal of prompts. Everything from massage therapy, sacral cranial, chiropractic, binaural beats, swinging, bouncing, rhythmic entrainment, water play, walking on the beach or in the woods next to a flowing river on uneven terrain, reflexology, acupressure, horseback riding, meditation, new movement patterns. Anything that encourages them to readily engage in physical experiences.

c. Research priorities.
Meet with me and others who openly admit to having similar experiences. Leave those who have perhaps spoken half-truths in the past or are simply not able to go beyond their current sensory based reality out of the group. What is needed is open minded thinkers, not afraid of ridicule willing to take a stand and get to work. These remarkable individuals are currently being not only ignored but extremely underutilized!

Respondent 0269

a. Gaps and underrepresented research areas.
The nonverbal group is NOT included in the Strategic Plan

c. Research priorities.
Include the nonverbal group in the strategic plan

Respondent 0270

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

Respondent 0275

a. Gaps and underrepresented research areas.
Outcome studies of the effectiveness of affective, relationship-based therapies and approaches. Outcome studies of the effectiveness of interpersonal, affective interaction-based intervention.

b. New opportunities.
Large scale studies on interventions with focus on parent training as a component of intervention with the goal of facilitating therapeutic carryover with decreased cost and increased dose. Strategies of interpersonal content, affective interactions and the use of close relationships, to facilitate adaptive behavioral responses and reduced symptoms. Interventions that include improvement for the family as a whole, incorporating individuals with ASD as an equal participant in family occupations. Treatments that address ways of living, behavioral and environmental adaptations, to enhance the quality of life for the individual with ASD and other family members.

c. Research priorities.
Short term Objectives: Test efficacy of affective, relationship-based intervention in deceasing symptoms of ASD and increasing adaptive behavioral responses. Test efficacy of affective, relationship-based intervention including parent training as it relates to quality of life for entire family. Long term Objectives: Develop and support parent training protocol enhancing affective interactions between family members, teaching interactional strategies to decrease symptoms of ASD and increase adaptive behavioral responses.

Respondent 0276

a. Gaps and underrepresented research areas.
Again, focus research on individuals who are in the lower end of the spectrum.

Respondent 0280

a. Gaps and underrepresented research areas.
As the mother of a 14-year-old boy with autism, I strongly urge you to include nonverbal and low-communicating people with autism in the Strategic Plan for Autism Spectrum Disorder Research. There are few, if any, interventions that work for these individuals, and currently there is no research to develop them. There is great interest in studying and working with young people with Asperger's Syndrome, and that's as it should be, but the "lower functioning" individuals with autism need help and support just as much--if not more--if they are to have any hope of leading a productive and meaningful life. Research should focus on methods of communication, which educational and behavioral interventions work best, ways to increase socialization, and enhancing vocational aptitude.

c. Research priorities.
1. HELP THEM COMMUNICATE WITH OTHER PEOPLE 2. HELP THEM FORM RELATIONSHIPS 3. HELP THEM SELF-REGULATE THEIR BEHAVIORS 4. HELP THEM LEARN A SKILL SO THEY CAN BE PART OF THE LARGER SOCIETY

Respondent 0281

a. Gaps and underrepresented research areas.
It is time to look beyond ABA. Communication is foundational for the success of any individual's interactions with one's environment and their participation in their own life. No child should arrive at age 3-4 without communication of some kind. We need to research the benefits of AAC/technology in the development of communication skills and its support of speech development.

b. New opportunities.
Facilitated Communication is being used successfully by many nonverbal individuals. We need to look at how people become independent typers...or more independent and what support therapies help individuals become more independent.

c. Research priorities.
Facilitated Communication and how people become independent. Access to technology and the development of speech for those who are nonverbal or have limited verbal abilities Access to communication and the benefits of full inclusion for those who are considered nonverbal or minimally verbal.

Respondent 0285

a. Gaps and underrepresented research areas.
It is my understanding that there is no research being done for nonverbal autistic children and that that group, including the low-communicating autistic children, add up to about 50% of autistic children. This is a travesty. All parts of the spectrum should be treated equally. Please include this group in the strategic plan!

Respondent 0288

a. Gaps and underrepresented research areas.
I'm told that the nonverbal or low-communicating autistic children are not included in the current research. I would petition the IACC to include this large group of children, about 50% I understand. The outlook for these children is bleak with few interventions that work.

Respondent 0293

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

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

c. Research priorities.
Please place some priority in researching learning methods for nonverbal children.

Respondent 0294

a. Gaps and underrepresented research areas.
See above

b. New opportunities.
Helping the 50% of autistic people live better lives is the best opportunity I can think of.

c. Research priorities.
What are the genetics of non-communication? What is the history these people? Did they receive any early intervention? What kind? WAs speech gained at some level and lost?

Respondent 0297

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

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

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

Respondent 0298

a. Gaps and underrepresented research areas.
Additional research is needed for non verbal children. They are underrepresented in current research. Their needs are overwhelming yet no effective means of communication have been developed. No cause no cure no effective treatment. Please help the non verbal low-functioning children and their families. WE NEED HELP.

Respondent 0299

a. Gaps and underrepresented research areas.
I am writing as a parent of a son, now 40 who has autism with limited verbal ability. It is essential that this population be included in autism research efforts and successful communications strategies be explored in order to release people like my son from the prisons of their bodies. At the age of 39 my son, considered low-functioning and retarded even though he taught himself to read at an early age and can sort alphabetically and numerically faster than most people, was able to ask questions and communicate for the first time in his life. He did this with Soma Mukhopadhyay using her Rapid Prompt Method of nonverbal communication. We discovered that he was interested in what women thought about him, knew how the stock market functioned and was surprised to discover that he was "really smart". He did this by poking a pencil through the letter outlines of an alphabet stencil. Since he said the letters aloud before poking, the authorship of his communication is unquestioned.

b. New opportunities.
Given what I have written, skeptics would say that I may be raising "false hopes" by suggesting that my son and others like him may have severe communications deficits but may still be functioning on an average or above average cognitive level. If I am correct, as my son's experience shows, how many lives are being wasted in boring, useless programs such as the one my son attends, spending billions of federal dollars in the process? Should we not be investigating the possibility that people with low-communicating or nonverbal autism, like some victims of strokes, may have no avenue of communicating their ever so normal thoughts and are trapped inside bodies that do not work in a manner that we consider to be normal?

c. Research priorities.
People with nonverbal and low-communicating autism must be prioritized in the Strategic Plan for Autism Spectrum Disorder Research. There is currently minimal if any research being done to develop and discover communication interventions that work for this population. I have suggested one method that has worked for my son as well as for others I know who have tried it. Shouldn't that success be further explored? How many lives and how many billions of dollars must be wasted until successful communications strategies allow people like my son to be released from their prisons?

Respondent 0301

a. Gaps and underrepresented research areas.
As a retired "regular ed" classroom teacher, I recall feeling frustrated in not having the skills to deal with nonverbal and low-communicating students placed in my classes. Now, as a family member of three boys that are nonverbal and low-communicating, I would strongly encourage including this population in continued research.

Respondent 0304

a. Gaps and underrepresented research areas.
Individuals along the ASD who are nonverbal or low-communicating are severely underrepresented in the Strategic Plan geared towards positive outcomes (i.e., research, funding, and treatments). As a parent of an adult child afflicted with ASD who has lost most verbal communication since adolescence, I am particularly interested in this issue, as well as the overall funding of research studies for adults with ASD. Please make certain that these two overlapping populations, who comprise a significant and growing portion of those with ASD, are left out of your invaluable efforts moving forward. Thank you for your time and energy, as well as your prompt attention to this matter.

Respondent 0306

a. Gaps and underrepresented research areas.
Diet is HUGE - taking out toxins, gluten and casein made a big difference. ABA therapy helps, but not until you address the physical problems.

b. New opportunities.
Look at diet. Look at HBOT. Talk to the DAN docs.

c. Research priorities.
Talk to the Autism Research institute. Talk to the folks at TACA and Gen Rescue.

Respondent 0307

a. Gaps and underrepresented research areas.
Here's an intervention - stop vaccinating children and study them to see what their rates of autism are related to the rest of the population. I'll volunteer my UNVACCINATED, totally neurotypical daughter to be part of this study. She was the lucky one, and didn't get the autism, like her vaccinated brother.

Respondent 0309

a. Gaps and underrepresented research areas.
More on ABA and the best time to start.

b. New opportunities.
The numbers are growing so fast that this has to be a huge priority. The longer we delay interventions, the harder it is to break behaviors!

c. Research priorities.
ABA- get the research on paper so that we have more success getting it paid for and prescribed. Get this information out to the Physicians, because nothing is being done!

Respondent 0310

a. Gaps and underrepresented research areas.
Biomedical interventions are dismissed with "some parents find them effective," but Risperdone is "effective." Maybe some side effects known to be cause by Risperdone - increased thoughts of suicide, tardive dyskinesia, tumors - should be included in your little message to parents

b. New opportunities.
The secretin study was not well done; it was a single dose study of very short duration which used synthetic and not natural secretin. Do a proper one. Study hyperbaric treatment. Study diet. Study specific supplements. Study chelation.

c. Research priorities.
Why do these children have so much metal in their bodies? Lead, mercury, aluminum, etc. Where does it come from? How can we get it out? If we do get it out, do they improve?

Respondent 0312

a. Gaps and underrepresented research areas.
Where is Defeat Autism Now? Where is Jane Johnson, DAN president and founder of Thoughtful House? Where is Bryan Jepson parent and physician? Where are people with experience treating medically complicated children? Where is an expert in autism and dietary interventions?

b. New opportunities.
Dietary intervention research with nutritionist Julie Matthews Study IVIG, study chelation, study anti-inflammatories and GI disease, study HBOT, study seizure medications

c. Research priorities.
Prioritize issues which are greatly harming ASD children and causing them pain- now Study GI intervention and dietary interventions Where is Peter Bell and Lyn Redwood, they know about the whole spectrum of behavioral and biological interventions?

Respondent 0316

a. Gaps and underrepresented research areas.
The women I've spoken with children on the spectrum speak of HBOT, diet restrictions, supplements (vitamins and hormones), yeast control, and chelation.

Respondent 0318

a. Gaps and underrepresented research areas.
Research should look at what types of skills are needed in the real world. Research should look at how typical children learn how to think dynamically and problem solve and then transfer this process to the children with ASD. Relationship Development Intervention or RDI targets such processes.

b. New opportunities.
RDI should be studied. Initial studies show success, it is an evidence based practice, it addresses the core deficits of autism, and it makes the parent-child relationship a priority. It is easy to study and measure because there is a continuous stream of video documentation of the work, a curriculum, and a protocol.

c. Research priorities.
Prioritize treatments that assume a pathway of autistic development and the capacity for neuro-developmental remediation, rather than assuming a discrete etiology and cure. That will lead to the most helpful and economic treatment for families now. RDI is one such treatment.

Respondent 0320

a. Gaps and underrepresented research areas.
Dear Sir/Madam: I am writing you today as a Washington DC Psychologist who works with children with learning disorders. I urge you to include nonverbal and low-communicating people with autism in the Strategic Plan for ASD Research. This is a sub population within Autistic children that has for too long been left out of important research. Please, include the nonverbal subgroup in your future research designs. Sincerely, Imran Riaz, Psy.D. Washington DC

Respondent 0322

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

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

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

Respondent 0323

a. Gaps and underrepresented research areas.
Recovering children are teaching confirming that autism is a multifactoral disease. Children with autism need to be study for underlying medical conditions so that we can learn, through evidence based medicine, the true etiology of autism. Studies of the endocrine systems and mitochondrial health of children with autism may lead to many answers and many children receiving biomedical treatment respond so well to treatments that addresses these issues.

b. New opportunities.
Advance the work of Dr. Martha Herbert and look at myelin sheath damage.

c. Research priorities.
Focus should be placed on the metabolic health and multifactoral diseases associated with autism.

Respondent 0324

a. Gaps and underrepresented research areas.
Research regarding models of support or specific interventions to assist adults succeed in higher education, work and independent or supported living.

c. Research priorities.
1. RCT on early intervention. 2. RCT of interventions; effective teaching strategies for school age children and adolescents. 3. Research on effective models of supports for adult in education, work, and living. 4. Research to identify which interventions work for which types of individuals. 5. Research to verify that alternative therapies either do or don't work.

Respondent 0325

a. Gaps and underrepresented research areas.
See previous

b. New opportunities.
See previous

c. Research priorities.
See previous

Respondent 0328

a. Gaps and underrepresented research areas.
Unbiased analyses of DAN! Biomedical treatment protocols. Nutritional supplements such as Methyl B-12, B-6, curcumin, fatty acids. Special diets such as GF/CF, SCD, etc. Antivirals, antifungals, NAET, steroids. Hyperbaric oxygen therapy. Mercury chelation studies using Alpha Lipoic Acid and/or DMSA, such as the protocol refined by Washington state chemist Andrew Hall Cutler, PhD, PE.

b. New opportunities.
Unbiased analyses of DAN! biomedical treatment protocols. Nutritional supplements such as Methyl B-12, B-6, curcumin, fatty acids. Special diets such as GF/CF, SCD, etc. Antivirals, antifungals, NAET, steroids. Hyperbaric oxygen therapy. Mercury chelation studies using Alpha Lipoic Acid and/or DMSA, such as the protocol refined by Washington state chemist Andrew Hall Cutler, PhD, PE.

c. Research priorities.
Unbiased analyses of DAN! biomedical treatment protocols. Nutritional supplements such as Methyl B-12, B-6, curcumin, fatty acids. Special diets such as GF/CF, SCD, etc. Antivirals, antifungals, NAET, steroids. Hyperbaric oxygen therapy. Mercury chelation studies using Alpha Lipoic Acid and/or DMSA, such as the protocol refined by Washington state chemist Andrew Hall Cutler, PhD, PE.

Respondent 0329

a. Gaps and underrepresented research areas.
Study children who have improved or recovered

Respondent 0330

a. Gaps and underrepresented research areas.
Research should look at how children and parents manage breakdowns and repairs rather than at a child's performance. Research should look at changes in flexible thinking, emotional resilience, and self awareness and control, processes needed in the real world. Relationship Development Intervention or RDI targets such processes.

b. New opportunities.
RDI should be studied. Initial studies show success, it is an evidence based practice, it addresses the core deficits of autism, and it makes the parent-child relationship a priority. It is easy to study and measure because there is a continuous stream of video documentation of the work, a curriculum, and a protocol.

c. Research priorities.
Prioritize treatments that assume a pathway of autistic development and the capacity for neuro-developmental remediation, rather than assuming a discreet etiology and cure. That will lead to the most helpful and economic treatment for families now. RDI is one such treatment.

Respondent 0332

a. Gaps and underrepresented research areas.
My son is a nonverbal autistic. He understands what is being said to him yet he cannot speak. The blind have Braille. The deaf have sign language. Nonverbal autistic people have nothing. The new pointing method as shown in the book "strange son" shows great promise. Most schools do nothing for nonverbal autistic people. My son is very intelligent, yet in Montana we have people ignorant about the fact that these children and adults are trapped without a way to communicate. I feel strongly this must be rectified now. So many people have written off these children as retarded. NOT TRUE! This country needs to put help into the nonverbal population that has been overlooked throughout history. Nonverbal people need your help now. How can this great country overlook such a large population of people with any conscience? States need to be held responsible for this child neglect. I urge you to implement the pointing method so that these children and adults can finally have a voice. Pam Tate

Respondent 0333

a. Gaps and underrepresented research areas.
Help us. Or better yet, help us help YOU.

Respondent 0335

c. Research priorities.
Research into treatments needs to be based on answering scientifically sound questions. We shouldn't be researching every alternative medicine treatment that has some following. We need good answers to how to help autistics. We need to place highest priority on those questions which have a good basis in our understanding of autism.

Respondent 0337

a. Gaps and underrepresented research areas.
- Randomized studies of available therapies, in particular cognitive ones - Investigate effectiveness of speech therapy in language development, as it is unknown - Investigate effects of drugs on developing brains - Develop simple strategies to cope with anxiety and joint attention problems

Respondent 0340

a. Gaps and underrepresented research areas.
Biomedical intervention is underrepresented.

b. New opportunities.
Biomedical interventions should not be limited to only "five widely used interventions" - rather, it should include interventions that parents and caregivers endorse.

c. Research priorities.
Coming up with methods for measuring changes in core symptoms of ASD from treatment should, of course, be done first so it can be used to measure the effectiveness of other interventions.

Respondent 0343

a. Gaps and underrepresented research areas.
* Chelation therapies to help these kids clear heavy metals/toxins from their systems. * Dietary treatments, especially to eliminate MSG/glutamic acid from their diets. This includes a GF/CF diet, which are both high in glutamic acid. * The Tomatis Method, to help some of them overcome their ultra sensitivity to sound. (Their senses are not wired properly, from the damage to their myelin sheathing. This includes dyslexia/sight.) * Essential fatty acids (EFAs), to help overcome the damage done to their myelin sheathing from vaccines and their contaminants, and possibly from genetic damage. * Color filters on TV screens, to help their eyesight/neural pathways. * PET scans, to uncover the areas of their brains that are not functioning optimally.

Respondent 0345

a. Gaps and underrepresented research areas.
- DAN! doctors and researchers who are doing lab work on affected children are key to looking at patterns related to biomedical manifestations. - Why do the children have abnormal bacteria, viral, and fungal labs? - Why do the children have varied yet large amounts of metals i.e.- lead, aluminum and for some, mercury?

c. Research priorities.
- Vaccine outcomes: vaccinated vs. unvaccinated study - biomedical implications, labs of affected children (blood- viral titers, aso/strep; stool-bacteria (ex- clostridia, strep), metals; urine- yeast/candida, etc.

Respondent 0347

a. Gaps and underrepresented research areas.
Do not forget the nonverbal autistic.

Respondent 0348

a. Gaps and underrepresented research areas.
There is a need for more research into interventions for individuals who lack or have limited speech. ABA has proven to have limited value for these individuals. PECS and other picture systems have limited value, as they are dependent upon the picture options chosen by the communication partner from which the individual must make her selection. Many individuals have learned to independently type or point to letter boards to spell out their thoughts through Facilitated Communication (FC) or the Rapid Prompt Method (RPM). Yet, instead of looking more carefully at these methods and listening to those who are successfully communicating (and in some cases succeeding in colleges), a group of studies that have raised more questions than they have answered have squelched further research in this area. It is inexcusable to ignore these most promising of communication interventions.

Respondent 0349

a. Gaps and underrepresented research areas.
Bio-med treatments for our sick children are what truly help. We need more studies on so many bio-med interventions.

Respondent 0350

a. Gaps and underrepresented research areas.
Special diets, food allergies, bowel disorders, immune disorders are all subjects that need more attention.

c. Research priorities.
Contact the Autism Research Institute. Founder Bernie Rimland was right on when he stressed "Refrigerator Mothers" were not the cause of autism. The ARI has data on thousands of children - on what has helped and what hasn't. Why can't the IACC tap into this incredibly valuable resource?

Respondent 0353

a. Gaps and underrepresented research areas.
I personally have witnessed dozens of children improve through medically investigating and treating their underlying medical conditions. I have never seen a child dramatically improve with any other intervention. Just as we know now that autism is not caused by refrigerator mothers, it is time once again for a major paradigm shift, to see autism for what it truly is - neurological, as well as immune and gastrointestinal, manifestations of medical problems caused by an environmental trigger or triggers prenatally, or in infancy. It is hardly "alternative" to use enzyme therapy for CF or lactose intolerance, or to implement dietary restrictions in the treatment of heart disease, diabetes, or high blood pressure. Yet these very effective, simple interventions which help thousands of ASD children function in comfort and make use of their educational interventions are mocked by conventional pediatricians and labeled "alternative." Why?

c. Research priorities.
Prioritize medical research by first, setting aside the hostility and politics, second, ensuring that the panel is made up entirely of neutral, objective, scientifically minded parties with no former or current ties to vaccine manufacturers, and third, working closely with parents and physicians who are successfully diagnosing and treating the medical conditions associated with autism, instead of ignoring them while 1:38 boys under age 8 who remain medically untreated while pediatricians shake their heads and researchers give us useless information on head circumference and brain wave imaging, now head, with frightening speed, for the social security disability and Medicare lines.

Respondent 0354

a. Gaps and underrepresented research areas.
Why can my son not talk but he has autism but so intelligent and has 100% understanding of receptive language and he cannot speak words? WHY NOT? If he could speak or communicate he could show how smart he is-- we NEED research for the 50% of our kids who cannot communicate or low communicators to find why and what will be cure to bring speech back.

Respondent 0356

a. Gaps and underrepresented research areas.
I believe much more emphasis needs to be given to low verbal and nonverbal kids. Currently, these children, including my own are left out. My daughter with severe autism can't get services at a local university autism center because she is over 13. She could if she were an adult with Asperger's. I would like to see more studies on adolescents and even adults. New information about neuroplasticity states the brain is more malleable than we thought throughout the life span. What kind of capabilities do the nonverbal and low verbal kids have cognitively? I believe the capabilities of this group have been underestimated.

b. New opportunities.
Typing is a treatment that needs to be studied. There are now several reports of kids who are nonverbal and extremely autistic being able to type their thoughts. How did this work? Who could benefit? With my own daughter who can answer more questions typing than she can verbally, I now have been able to find out her opinion on certain matters. Before I knew her basic wants and needs but never what she thought about anything. Using typing techniques it has been easier to help her anticipate certain events...trips, visits, changes in her life. I was even able to give her a few chores and explain that she would earn an allowance. For this to develop would mean more opportunities to explain the world and assess her understanding of what is going on. And with that she could be taught new skills that would help her interact and be more in-sync with life around her.

c. Research priorities.
Nonverbal kids and low verbal kids are left out and need to be made a priority. It is ironic with so many gadgets out there -- many kids who could benefit from typing or an augmentive communication device don't have them. It is far easier for an adolescent with Asperger's to find a social group and intervention but the use of Assistive Technology to help expand speech and communication is hard to find for nonverbal kids or low verbal kids. The presumption seems to be that autistic kids don't have the cognitive ability to communicate any better than they are. AT and its use is an ignored area and needs to be explored. Cognitive ability and capabilities of low verbal and nonverbal needs to be studied more.

Respondent 0360

a. Gaps and underrepresented research areas.
We already KNOW that biomedical treatments for autism work for MANY children. If you want to know which treatments and interventions will help study children who have recovered! Autism IS treatable and children ARE recovering.

b. New opportunities.
If you continue to deny a vaccine connection and refuse to fund research in that area, you are not truly looking for effective treatments and interventions.

Respondent 0361

a. Gaps and underrepresented research areas.
Parent Mediated Programs to Remediate Autism Relationship Development Intervention (RDI)

b. New opportunities.
Relationship Developmental Intervention is a parent mediated program based on developing the 'guided participation relationship' described in the research of Barbara Rogoff in order to develop dynamic thinking skills and ultimately remediate autism. It restores the developmental pathway created in parent child relationships in order to encourage the acquisition of typical motivation, curiosity, experience sharing and problem solving. This work focuses on improving quality of life for children with ASD and their families, now and in the future. Current popular treatments may assist children with ASD in acquiring bodies of knowledge but fall short of helping them to know how to use that knowledge in a variety of contexts that may vary in one dimension or another. There is great need to explore how to help these children acquire more real world problem solving.

c. Research priorities.
There is great need to understand treatments that improve quality of life for individuals on the autism spectrum and to more accurately define 'what is autism?' and not merely accumulate a group of symptoms. This intervention explores treatment of the cognitive processes that present obstacles to the children on the autism spectrum and not just the co-occuring conditions often experienced with this disability. Prioritizing this is critical. Close behind that need is the urgency in finding affordable and manageable treatments where families are not destroyed by their cost, their temporal demands and their emotional toll. Parent mediated programs can serve that purpose in that they occur in natural environments as the family is executing typical daily functions and are cost effective. Research would encourage programmatic support for this approach and elevate the therapeutic partnerships between clinicians and families in order to restore the developmental path for individuals with ASD.

Respondent 0363

a. Gaps and underrepresented research areas.
Biomedical and medical treatment for the very real illnesses that many children affected by Autism, must be addressed. Someone on this committee needs to put together a study of recovered children.

b. New opportunities.
Advancing knowledge will require most on the committee to stop seeing this as a psychiatric condition. The head of this committee should not be a psychiatrist.

Respondent 0364

a. Gaps and underrepresented research areas.
Biomedical treatment research should be done and given more representation.

Respondent 0366

a. Gaps and underrepresented research areas.
1. Assess for food allergies 2. Assess for Candida 3. Assess for heavy metal poisoning 4. Assess for GI dysfunction 5. Hold parent accountable for making sure their child is not eating food they are allergic or intolerant of. A diabetic child would get help from CPS is their parent did not fix their diet. It should be the same for ASD kids who assess positive for food allergies and intolerances.

b. New opportunities.
1. Assess for food allergies 2. Assess for candida 3. Assess for heavy metal poisoning 4. Assess for GI dysfunction 5. Hold parent accountable for making sure their child is not eating food they are allergic or intolerant of. A diabetic child would get help from CPS is their parent did not fix their diet. It should be the same for ASD kids who assess positive for food allergies and intolerances.

c. Research priorities.
1. Assess for food allergies 2. Assess for candida 3. Assess for heavy metal poisoning 4. Assess for GI dysfunction 5. Hold parent accountable for making sure their child is not eating food they are allergic or intolerant of. A diabetic child would get help from CPS is their parent did not fix their diet. It should be the same for ASD kids who assess positive for food allergies and intolerances.

Respondent 0367

a. Gaps and underrepresented research areas.
Homeopathy

Respondent 0368

a. Gaps and underrepresented research areas.
I would like to see research into biomedical treatments? Which of these works and for which kids or adolescents? Who benefits from the gluten-free casein free diet? Who benefit from vitamins? Who benefits from chelation?

b. New opportunities.
We should study children who have recovered from autism. These children have received almost no scientific or media attention. What interventions have worked with them? We should also study interventions that work with adolescents and adults with autism. It was so depressing when my son entered adolescence and the only thing the medical profession had to offer us were heavy duty antipsychotic drugs with serious side effects.

c. Research priorities.
I think these are all pretty important. However, I would like to see priority given to research on adolescents and young adults, since there are has been no research (that I\'m aware of) on non-drug interventions.

Respondent 0369

a. Gaps and underrepresented research areas.
Two recent articles have called into question the long-held assertion that nonverbal, low-functioning, people with autism are mentally retarded. This assumption has profound effect on the educational programs offered to these children, societal expectations for them, their own self-images, and their life-long prognoses. It is great importance to develop an instrument for measuring cognitive ability that accommodate motor planning problems and extended response times that are characteristic of this population. Specifically I would like to see NIMH Support research into the validity of using such instruments as the Stanford-Binet, WISC or Weschler to assess the cognitive abilities of nonverbal persons with autism, and promulgate dissemination of the results of that research. Support the development of modern tests (to supplement or supplant the Ravens Progressive Matrices, which was developed in 1936) that are appropriate for those with motor planning deficits.

Respondent 0370

a. Gaps and underrepresented research areas.
A controlled trial of discreet trials versus floor time interventions.

Respondent 0372

a. Gaps and underrepresented research areas.
Parent-Training or Parent-Based Programs focused at the remediation of Remediate Autism and/or Relationship Development Intervention (RDI)

b. New opportunities.
Relationship Developmental Intervention, RDI, is a parent mediated program based on developing the 'guided participation relationship' (or the Master/Apprentice Relationship) described in the research of Barbara Rogoff in order to develop dynamic thinking skills and ultimately remediate autism. It provides an opportunity for parents to, under the guidance of a certified consultant, restore the developmental pathway created in parent child relationships in order to encourage the acquisition of typical motivation, curiosity, experience sharing and problem solving. RDI focuses on improving quality of life for children with ASD and their families. Current popular and supported treatments may assist children with ASD in acquiring concrete knowledge but fall short of helping them to know how to use that knowledge in a variety of contexts in other words, real world problem solving. There is a great void of research devoted to how these children develop dynamic thinking.

c. Research priorities.
There is great need to understand treatments that improve quality of life for individuals on the autism spectrum instead of defining the symptoms or the co-occuring disorders. RDI explores treatment of the cognitive processes that present obstacles to the children on the autism spectrum and not just the co-occurring conditions often experienced with this disability. Prioritizing the "core deficits" of autism is critical. Close behind that need is the urgency in finding affordable and manageable treatments where families are not destroyed by their cost, their temporal demands and their emotional toll. Parent mediated programs can serve that purpose in that they occur in natural environments as the family is executing typical daily functions and are within their budgets. Research would encourage programmatic support for this approach and elevate the therapeutic partnerships between clinicians and families in order to restore the developmental path for individuals with autism.

Respondent 0373

a. Gaps and underrepresented research areas.
Dr. Richard Deth's research on novel ways to introduce/use therapeutic glutathione.

Respondent 0374

a. Gaps and underrepresented research areas.
I am the mother of a now-12-year-old son, Charlie, who is on the moderate to the severe end of the autism spectrum. For the past three years, I have followed the work of the IACC in developing the Strategic Plan. Under the Core Values section of the Plan, the importance of being consumer-focused is noted: We will focus on making a difference in the lives of people affected by ASD, including people with ASD, their families, medical practitioners, educators, and scientists. It is important to consider the impact of research on the human rights, dignity, and quality of life of people with ASD from prenatal development forward. I wish to underline the importance of keeping the impact of research on the human rights, dignity, and quality of life of people with ASD very much in mind.

b. New opportunities.
While it is important to continue to investigate the causes of autism, I believe that our foremost obligation is to provide the best possible quality of life for individuals on the autism spectrum, while constantly respecting their human rights and dignity. It is necessary to devote the majority of research efforts to find about effective treatments that can help individuals on the spectrum achieve their full potential and to live their lives in the community, with employment and housing in the community. It is imperative that we find out how to most effectively and efficiently provide services and staff (teachers, therapists, job coaches, and many more) to support individuals on the spectrum. Rather than continuing to devote research funds to find out about hypothetical causes of autism, we need to focus our energies on improving the lives of autistic individuals, of their family members, and of those who support them.

c. Research priorities.
Our focus should not be on vaccines and experimental biomedical treatments, but on how to support teachers of autistic students, on how to provide an appropriate public education for all autistic students, on how to provide services and supports for adults on the spectrum throughout their lives and in ways that, again, always take into account their human rights and dignity.

Respondent 0376

a. Gaps and underrepresented research areas.
My child has recovered from vaccine-induced autism (mercury poisoning) using biomedical interventions (dietary restrictions and supplementation, chelation, etc.) that are not paid for by insurance or acknowledged by the general mainstream medical community. Check out organizations such as http://www.generationrescue.org This link exits the Interagency Autism Coordinating Committee Web site or http://www.tacanow.org This link exits the Interagency Autism Coordinating Committee Web site to get an idea of recoveries in progress. Our kids can and do recover, despite Big Pharma's efforts to continue what at this point can only be a government cover-up.

Respondent 0379

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

b. New opportunities.
The vaccinated/unvaccinated study.

c. Research priorities.
The vaccinated/unvaccinated study.

Respondent 0380

a. Gaps and underrepresented research areas.
Nonverbal and low-communicating individuals need to be included in autism research. My 19 yr. old son falls in this group and we have searched and are still searching for a way for him to effectively communicate. He is unable to tell us his needs, wants and thoughts. These individuals need a way to communicate. They are the most vulnerable and underestimated of the disabled people with autism.

Respondent 0382

a. Gaps and underrepresented research areas.
Relationship Development Intervention (RDI), biomedical treatment

c. Research priorities.
RDI, to find out how this could improve the quality of life of ASD

Respondent 0385

a. Gaps and underrepresented research areas.
ASD interventions that focus on quality of life, such as RDI or DIR, must get equal funding as those that are purely IQ-based and standardized-test based like ABA. Rote skills and memorization mean little if a child can't make friends or share interactions and experience share.

c. Research priorities.
There is a huge miss in this area as far as treatment. While ABA is perhaps the most well-known treatment method, these are IQ-based results for the large part and will not determine an individual's quality of life. Will they be happy? Will they have friends? Will they be able to hold a job? Will they get married or have a loving relationship? Funding is needed to study the efficacy of Relationship Development Intervention (RDI) as a viable treatment modality for individuals with ASD. This is a method that examines quality of life. Parents of kids with ASD don't need them to be the smartest kid in class or identify every object in a room or on a page. But they want them to smile, to have friends, to be able to laugh at a joke, and to share experiences with them.

Respondent 0388

a. Gaps and underrepresented research areas.
Whatever will increase the communication? Without communication, what is your starting block? They never cured Helen Keller's blindness or her deafness, but she blossomed when she found a connection to the outside world through COMMUNICATION

Respondent 0389

a. Gaps and underrepresented research areas.
As it is well established that ABA/VB, if a well written and executed program, has become the norm in treating Autism. Usually the earlier it is implemented and preferably up to 40hours/week the better results are for the child. But, I also believe a strong biomedical intervention (i.e., diet, supplements, HBOT (hyperbaric oxygen therapy), Neuro consideration and involvement, etc...) is necessary for the best possible outcome. Add to this another type of therapy for the approx. age 6 and above group: The Informative Pointing Method.

b. New opportunities.
To realize that Autism is a Medical Disorder with the strong involvement of the body's Neurological, Gastrointestinal, and Metabolic systems. Because it involves these systems of the body the signs and symptoms (behaviors) manifests themselves to appear psychiatric in nature. Autism is NOT a Psychiatric disorder. You would act out of the norm too if you had the multi body system involvement as those on the Autism Spectrum.

c. Research priorities.
First, realize Autism is a multi body system involvement (Neuro, G.I., and Metabolic). Second, provide some way for reimbursement for the multidisciplinary treatments and therapy's as the financial strain on families is great. Third, have the special ed teachers in the public school become well versed and highly trained in the best therapies (ABA/VB, etc...) for treating Autism. After all the goal of every parent is for their child to be independent to the best of their abilities, and not of course, to underestimate those abilities. The more time, effort and expense given to these individuals, the less financial burden will be generated overall down the road. So, in essence, help the parents help their children strive and become happy independent individuals with financial support and reimbursement assistance regardless of gross/net income.

Respondent 0390

a. Gaps and underrepresented research areas.
We need to know much more about the developmental course of children identified with autism. This includes identification and description of subgroups. Much of the outcome research does not distinguish between changes related to maturation and intervention. This is particularly striking in language and behavioral development. Most children between 2 and 5 with autism develop language and display improvements in behavior, with or without intervention, and independent of the type of intervention. These changes cannot be claimed as the result of a particular type of intervention without comparison of children without this intervention. We need to develop better measures of changes in core deficits. Children may talk but not improve in the reciprocity of their communication. We need shared measures of reciprocal communication, not just measures of vocabulary and length of utterance. We also need shared measures of communicative initiative and communications that are not simply need based.

b. New opportunities.
With identification of children at younger ages we have the opportunity to look closely at what types of interventions improve their functioning with regard to core deficits. We need to develop measures to look at specific changes in the capacities that underlie these abilities in typically developing children, then to be very fine tuned in our interventions in areas such as joint attention. We need to look closely at variations in underlying processing issues that may contribute to early difficulties. The next step is to tailor interventions to underlying processing differences and develop specific treatment strategies that can be shown to improve functioning in these specific areas. We then can look at the impact of these individualized interventions on the next steps of reciprocal communication and interaction.

c. Research priorities.
Focus on core deficits and not on surface behaviors. Look at the long term effects of intervention on the capacity of children to relate, to communicate, and to think flexibly. Outcome measures need to go beyond placement in typical classes and the capacity for rote academic skills. When we think of the kind of adults we want our children to become, it is clear that intervention effectiveness needs to be measured throughout childhood by the capacity to initiate and to participate in interactions that are truly reciprocal. Outcome variables need to focus on a child being able to develop intentional purposeful behavior and to think logically and reflectively. We need to evaluate intervention not by the mastery of memorized facts and specific skills but by each child's capacity to be able to respond effectively to the challenges encountered throughout life. This begins with reciprocity in infancy and throughout the lifespan.

Respondent 0394

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

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

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

Respondent 0396

a. Gaps and underrepresented research areas.
Relationship-based therapies family therapy

b. New opportunities.
Relationship-based therapies family therapy

c. Research priorities.
Relationship-based therapies family therapy

Respondent 0400

a. Gaps and underrepresented research areas.
There needs to more emphasis on treatments for people with autism who have no or very limited means of communication. In particular, research should be done to benefit adolescents and adults who are considered "lower functioning" and who no longer are receiving the intensive services available to younger children. This population is trapped and needs a way to communicate over their life span.

b. New opportunities.
There should be an opportunity to focus on the study of people with autism who have had a regression in skills over their life span, particularly in language, to determine how to prevent such regression or to alleviate the effects of such regression.

Respondent 0403

a. Gaps and underrepresented research areas.
Finally - fully inclusive plan to research treatments and interventions!

b. New opportunities.
All that were mentioned.

c. Research priorities.
None

Respondent 0408

a. Gaps and underrepresented research areas.
The entire realm of bio-medical treatments needs to be examined and the existing studies on the effectiveness of biomed need to be accepted and acknowledged as valid. For the 2 million ASD patients, there are 500 biomed doctors treating them. No wonder people think autism isn't curable; they don't know about or can't get medical help! Doctors are scared to step out on a limb and accept natural medicine as a capable treatment.

b. New opportunities.
Bio-medical treatments: diet, nutritional supplements, anti-virals, probiotics, glutathione, MB-12, HBOT, chelation, epsom salts

c. Research priorities.
Treatment has to be the VERY FIRST priority. There is a growing population of kids like mine and I shudder to think how many adults we will be saddled with taking care of if we don't find treatment for them now. We have to take action on this NOW and if it is left to parents and the handful of doctors currently tackling this issue, we will always be swimming up the proverbial stream against the current of traditional medicine and autism will be our constant companion.

Respondent 0409

a. Gaps and underrepresented research areas.
Research is needed into identifying what interventions help the nonverbal individual with autism. How does an individual without speech and most often auditory process issues learn to navigate his/her world? We need a list of researched and confirmed options. Multiple areas need to be researched including developmental, social/emotional, academic, and behavioral.

b. New opportunities.
Speech generating devices need to be reasonably priced. Assessments need to be researched, supported, and available. There needs to be a modified curriculum for nonverbal and low-communicating individuals so that they may be taught the state standards. The pace may need to be slower or more experience-based, but we cannot exclude these individuals.

c. Research priorities.
I believe teaching an individual to read and write/keyboard opens up a new world. Priority should be placed here first.

Respondent 0411

a. Gaps and underrepresented research areas.
Interventions are great. ABA has recovered my son. But who is going to pay for these interventions? Insurance should cover these interventions. School districts cannot handle the complete financial burden especially when the feds have NEVER fully funded IDEA.

Respondent 0412

a. Gaps and underrepresented research areas.
There are few interventions which work for autistic people. We need research which includes nonverbal and low-communicating people now.

Respondent 0413

a. Gaps and underrepresented research areas.
I am a trained PhD social scientist with a child with ASD. My wife, also a PhD and I have worked with several forms of interventions but have been most impressed with Relationship Development Intervention (RDI). We would strongly recommend that there would be funding to study the efficacy of Relationship Development Intervention (RDI) as a viable treatment modality for individuals with ASD. We would also suggest treatment studies use quality of life outcomes rather than IQ as the major evaluative criteria for these studies.

Respondent 0416

a. Gaps and underrepresented research areas.
The confounding issues are, of course, the likely genetic sub-types where a treatment/intervention used in one individual with ASD has little or no positive effect and in another individual with ASD the effect is substantial. The numbers of individuals in the RCTs will need to be large enough to detect these differences, and research on treatments and interventions will need also to include samples for biomarkers (even if samples are initially only obtained and not analyzed until the characteristics of the biomarkers are understood). Funding will need to be increased to ensure large enough samples.

c. Research priorities.
Priority needs to be focused on biomedical treatments (e.g., diet, nutritional supplementation, hyperbaric oxygen therapy, etc) to help determine which treatments are effective for most individuals with ASD. Focus on fewer traditional medications for symptom control vs. healing and recovery.

Respondent 0417

a. Gaps and underrepresented research areas.
My spouse and I are PhD health services researchers. We also have a daughter with ASD. Since her diagnosis, we have worked with several forms of interventions but have observed the best outcomes with Relationship Development Intervention (RDI). We strongly recommend funding to study the efficacy of Relationship Development Intervention (RDI) as a viable treatment modality for individuals with ASD.

b. New opportunities.
We suggest treatment studies use quality of life outcomes rather than IQ as the major evaluative criteria for these studies.

Respondent 0419

a. Gaps and underrepresented research areas.
In comparative studies of autistics & neurotypicals, Functional Magnetic Resonance Imaging (fMRI) (and autopsies) show a number of things in autistics: inflammation in certain brain areas, especially the cerebellum. They show under-connectivity in certain areas of the brain with certain areas of over connectivity. They are showing that the brain has the capacity to reroute and strengthen neuronal links to compensate for damaged/impaired areas. Utilizing this information into therapies that benefit our children is very important. Also, there are reasons why metabolic, immune, gut disorders plague so many ASD kids—What are they? Every child arrives at their "autisms" by various routes. What are the environmental factors for this epidemic—Is it: Our food? Our water? Our air? Our vaccines? The chemical "Body Burden" from manmade chemicals is now in everyone's bloodstream. What are the environmental insults that are damaging parental DNA that in turn damage their offspring? Or, that damage

b. New opportunities.
Parents see what helps their kids and what does not. Why do changes in diet help so many of our kids? Probiotics? Supplements? And other biomedical treatments—including Chelation? Are we not to believe our lying eyes? Our before and after videos? SEE: Journal of Toxicology accepted 12 July 09, "The Severity of Autism Is Associated With Toxic Metal Body Burden and Red Blood Cell Glutathione Levels" (this, of course, includes mercury and lead) http://www.hindawi.com/journals/jt/aip.532640.html This link exits the Interagency Autism Coordinating Committee Web site

c. Research priorities.
Independent vaccine studies done by those without conflict-of-interest must go forward of those who are vaccinated vs. the unvaccinated and the alternatively vaccinated. In 2008 the U.S. budget for autism was $108 (much lower than that allotted to breast cancer or AIDS). According to a 2008 article in The Boston Globe: "$108 million is spent every 4 hours in Iraq." Unconscionable. Just think if we had that money to use to prevent and treat autism. Stop diddling. PREVENT AUTISM NOW. Here is a link that is emblematic of what Big harma does to squelch inquiry: http://www.theaustralian.news.com.au/story/0,25197,25272600-2702,00.html This link exits the Interagency Autism Coordinating Committee Web site It's an article from The Australian about an Australian class action lawsuit entitled: "Vioxx maker Merck and Co drew up doctor hit list" by Milanda Rout, April 01, 2009 and speaks to how Merck "made a hit list of doctors who had to be 'neutralised' or 'discredited' because they criticized the anti-arthritis drug the pharmaceutical giant produced." E-mails re

Respondent 0420

a. Gaps and underrepresented research areas.
I have helped hundred maybe thousands of families and I have not heard or seen on mother have another autistic child; once she has become proactive and researched vaccines and either did not vaccinate or limited it. Start eating whole foods and foods rich in probiotics.

c. Research priorities.
Advocates for safer vaccines have analyzed the studies that everyone likes to quote that say vaccines do not cause autism. Not one of your studies proves that it doesn't. Yes, you can do a vaccinated/unvaccinated study. Again, you know the outcome and it will not be convenient for everyone accountable. I'm advocate of letting everyone off the hook and starting from scratch for future generations. There will be so much mistrust with mother and their pediatricians. You are going to have to let the public know that you mislead the pediatricians and that the pharmaceutical companies misled you. Fess up.

Respondent 0421

a. Gaps and underrepresented research areas.
Bio-treatments work...Research this...Digestive enzymes, senitive groups of children, it is not all or none these groups can be saved...ABA needs to be paid by Medicaid and other insurance supplement.

Respondent 0426

a. Gaps and underrepresented research areas.
A study comparing recovered kids to other kids with ASD. Why has no one looked at all the kids who had a diagnosis of autism and lost it? Describe their autism phenotype, their biological (immune, metabolic, etc.) features, their treatment history, and try to find something that explains this phenomenon!

c. Research priorities.
Many of us hope you will look into all the protocols used by the Defeat Autism Now doctors, particularly vitamins and supplements.

Respondent 0427

a. Gaps and underrepresented research areas.
I know for my son, Seth, ABA has been the only thing that has helped. He attended the Autism Learning Center in Monroe, La, for about 7 months and can communicate with us through either mands or signs. Seth will be starting biomedical treatments this month. I have heard positive responses about that. It would be nice if the school system would also have ABA in the classrooms. Autism is growing, and nothing is being done to help our children.

Respondent 0429

a. Gaps and underrepresented research areas.
Evaluate children who have recovered. A recent NSCH survey found 459 children who had been given an ASD diagnosis, but no longer have the diagnosis (website: http://nschdata.org/DataQuery/DataQueryResults.aspx). (IACC Note: URL not valid.) How did these children recover?

Respondent 0430

a. Gaps and underrepresented research areas.
Study the Defeat Autism Now protocol. Do double blinded placebo controlled studies before dismissing the alternative treatments that parents are finding to be helpful.

b. New opportunities.
Same as above.

c. Research priorities.
Make researching Defeat Autism Now protocols a priority.

Respondent 0431

a. Gaps and underrepresented research areas.
Until such time as research is focused on nonverbal and low-communicating individuals with autism, we will continue to be faced with a dearth of viable treatments and interventions.

Respondent 0432

a. Gaps and underrepresented research areas.
Treatment research should focus on behavioral and biomedical interventions actually in use throughout the community.

Respondent 0436

a. Gaps and underrepresented research areas.
It would be helpful if the different treatments for autism were covered by insurance. They are not presently covered.

Respondent 0437

a. Gaps and underrepresented research areas.
RDI as treatment for neural underconnectivity and dynamic intelligence, quality of life

b. New opportunities.
RDI as treatment for neural underconnectivity and dynamic intelligence, quality of life

c. Research priorities.
I feel ABA is limited and new generation treatments that can have a global effect on developing neural connectivity and improving quality of life are more important at this time.

Respondent 0439

a. Gaps and underrepresented research areas.
Diet needs to be addressed first. It is non-invasive, healthy and doable. Having children eat fresh meat, fruit and vegetables cannot be a bad thing. Research the gluten free/casein free diet and/or the Specific Carbohydrate Diet. When you do research these, which is mandatory since so many children respond positively, develop the study using experts currently proficient in these diets from the autism community. If you have not effectively implemented either of these diets, you will not be capable of designing an study that reflects an accurate result. Research needs to be conducted on oxidative stress in children with autism. Research needs to be conducted on inflammation in children with autism. Research needs to be conducted on gastrointestinal issue in children with autism. You must go to those who are currently treating our children for these issues to design the studies.

c. Research priorities.
RESEARCH BIOMEDICAL INTERVENTIONS! These interventions have been healing children for years. Many children fully recover, losing their autism diagnosis. Children must be healthy before they can learn. That is plain common sense. You have an extensive amount of DAN! doctors currently treating children biomedically. Utilize their expertise to draft the necessary research that will benefit the most children. Once again, use my money effectively and efficiently. I want healthy, happy functioning children. That is supposed to be what we all want.

Respondent 0440

a. Gaps and underrepresented research areas.
Is the existing research held to the same ethical and scientific standards as research unrelated to autism? Are blinding and RCTs being used sufficiently, or is the science of lower quality than research in other areas? What are the risks of these treatments, especially medications and biomedical interventions? Do they have long-term side effects that might not be initially apparent? What are the warning signs for these side effects? Do any of the non-ABA interventions hold promise? Could they be a better fit than ABA for the cognition styles of some autistics? How can we identify which ones are helpful and which are dross? How can we utilize autistic perspectives to identify which interventions and treatments are the most beneficial?

c. Research priorities.
This section is of more or less appropriate priority relative to the other sections. Non-ABA interventions are vastly under-researched. More resources should be devoted to identifying which, if any, of these are of good benefit, and then into expanding the body of research about them. All research in this category should be held to high scientific standards. Blinding and randomized controlled trials should be utilized whenever possible. Particular care should be put into identifying the risks for medical interventions.

Respondent 0442

a. Gaps and underrepresented research areas.
Many parents are recovering their autistic children through biomedical interventions. Diets, supplements, gastrointestinal treatment, just to name a few. Study these kids, talk to their doctors. The AAP and most pediatricians admit they do not know how to help autistic children. Help these pediatricians learn by studying whether biomedical treatments help kids already suffering.

b. New opportunities.
The empirical data is now available for autistic children receiving biomedical treatments. The IACC needs to study the impact of these treatments on recovery. It appears Autism is not just a psychological disorder, but also a physical injury or disease. Help the body heal, and the mind will follow. New opportunities exist to study kids receiving biomedical treatments v. kids who are only receiving ABA therapy or other psych only treatments.

c. Research priorities.
Parents are light years ahead of the IACC in treating their children. The parents are on the front lines. Parents don't do expensive biomedical treatments and diet restrictions unless they see progress in their children.

Respondent 0443

a. Gaps and underrepresented research areas.
We need to study nutritional supplements and diets and chelation, and other alternative medicine such as herbs and Chinese medicine; homeopathy; hyperbaric oxygen; zeolites; colloidal gold; acupuncture and chiropractic and craniosacral; NAET; listening/auditory therapies; neuro and bio feedback; mitochondrial cocktails; sauna; vision therapy; clay; etc.

c. Research priorities.
These should be as high a priority as other therapies such as ABA and OT.

Respondent 0445

a. Gaps and underrepresented research areas.
The systemic component of autism supports the possibility that both the core behaviors and medical issues have a convergent mechanistic basis that if identified, could provide new insights into treatment targets, candidate genes, and strategies for prevention.

c. Research priorities.
EARLY INTERVENTION

Respondent 0449

a. Gaps and underrepresented research areas.
Parent Led Programs to take a developmental approach to overcoming Autism, RDI

b. New opportunities.
RDI can be used to develop dynamic thinking skills and ultimately remediate autism. It focuses on improving quality of life for children with Autism and their families. There is a urgent need to provide treatment that develops more dynamic thinking.

c. Research priorities.
We need to understand treatments that improve quality of life for individuals on the autism spectrum and their families. This intervention focuses on treatment of the issues that present obstacles to the children with Autism. Prioritizing this is critical. We also need to find affordable treatments for families.

Respondent 0450

b. New opportunities.
There should be funding for studying the efficacy of RDI (Relationship Development Intervention) as a viable treatment of the core deficits associated with ASD. While ABA focuses on early childhood development, RDI offers a treatment that is effective at any age and one that can be used lifelong. Further, families using RDI have seen remarkable results in the ability of these children to be able to think and adapt to dynamic environments which is necessary for independent living. Further, RDI is a much less expensive treatment to fund as compared to the intensive ABA. Most traditional treatment methods end up turning these children into robots. Yes they learn words and static skills, but they can't think for themselves. RDI teaches children with ASD to think and adapt in changing environments and is real hope for families dealing with ASD.

c. Research priorities.
Funding the study of RDI needs to be a priority. There are thousands of families worldwide experiencing daily successes using this treatment method. Treatment of ASD cannot just be about building language and increasing test scores, it needs to enable our children to think for themselves, be able to cope with change and dynamic environments and be interested in the world around them. Only then can they hope to be productive members of society. RDI offers this to families with ASD.

Respondent 0452

a. Gaps and underrepresented research areas.
More research on the Relationship Development Intervention (RDI) program developed by Dr. Steven Gutstein and other developmental based intervention approaches for autism.

Respondent 0453

a. Gaps and underrepresented research areas.
Behavioral and biomedical interventions actually in use in the autism community must be researched. Talk to those affected. What are they doing to help their children? What are they finding to be most helpful? There are many children who are being so successfully treated that they are losing their diagnosis! Surely what these parents did to help their children must be studied immediately.

b. New opportunities.
Autism is a disease that affects four major systems in the body: 1) the gastrointestinal system, 2) the immunological system, 3) the toxicological system, and 4) the neurological system. (See: Changing the Course of Autism: A Scientific Approach for Parents and Physicians, by Bryan Jepson, MD). Successful treatments need to address these affected systems. Bryan Jepson works at Thoughtful House, a research center in Texas that focuses on the causes and most effective treatments for those with autism. There are many resources available to assist us to help these children. But funding needs to be directed in the most efficacious directions. Tragically, mainstream medicine is doing nothing effective to help those afflicted (I suspect because of their ties to the vaccine industry). Insurance is not covering the treatments that are most effective. Parents are left trying to figure it out on their own and pay for it on their own. This is bankrupting us! Help us.

c. Research priorities.
Behavioral intervention has been scientifically proven to help these children. But it is expensive. As a single mom and a university professor, I don't have the funds to get my son the behavioral intervention he needs: 40 hours per week of ABA therapy. If I had this, I think my son's counterproductive behaviors would dramatically diminish and he would become increasingly functional. I have also seen results through biomedical interventions. The Defeat Autism Now (DAN!) approach helped my son. Homeopathy, specifically homeovitics, helped my son. Cranial sacral therapy helped my son. Addressing the gastrointestinal issues and the food sensitivities has also been very helpful.

Respondent 0454

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

b. New opportunities.
Research Oxidative stress in autism, research immune disregulation in autism, research mitochondrial symptoms in autism, research chronic viruses' role in brain inflammation in autism.

c. Research priorities.
Vaccine safety, the current vaccine schedule, vaccine ingredients and their effect on these children (again this needs to be unbiased research conducted by parties with absolutely no ties with pharmaceutical companies and vaccine makers).

Respondent 0455

a. Gaps and underrepresented research areas.
All alternative approaches should be studied. There needs to be additional studies on which therapist intervention is most beneficial (structured vs. play/relational based; intense vs. non-intense). Doctors should be required to sit in on these therapy sessions!

Respondent 0458

a. Gaps and underrepresented research areas.
The topic of intervention for nonverbal or low-verbal individuals is sadly underrepresented. What biological factors are keeping individuals from developing speech? What interventions can maximize each individual's ability to communicate?

b. New opportunities.
There should be much more emphasis on nonverbal or low-verbal individuals while researching every area of autism especially interventions. These individuals are suffering the most from the symptoms of autism but because they cannot advocate for themselves they are often ignored. I am the mother of a nonverbal, low-functioning child. Please think of him and others like him when deciding how to spend research dollars!

c. Research priorities.
Priority should be given to lower functioning autistic individuals because they are the ones who suffer the most from their autism. It will also save money in the long term as these individuals gain more skills and require less expensive life time care.

Respondent 0461

a. Gaps and underrepresented research areas.
You need to look at the treatments being done by DAN (defeat autism now) practitioners. These treatments are effective at the minimum of lessening some of the symptoms and in some cases reversing the affects of autism

c. Research priorities.
Look at treatments to boost/repair the immune system, chelating out heavy metals and repairing the neurons in the brain.

Respondent 0463

a. Gaps and underrepresented research areas.
Since 1967 ARI has been collecting parent's ratings of the usefulness of treatments they have tried on their children. Data has been collected from more than 27,000 parents. To review these reports please go to http://www.autism.com This link exits the Interagency Autism Coordinating Committee Web site. To date, the five top-rated interventions in order of success are chelation therapy, supplemental methyl B-12, specific carbohydrate diet, food allergy treatment, and melatonin. These interventions should be subjected to intensive investigations. We believe it's important when designing clinical trials that the tremendous amount of heterogeneity present in those diagnosed with ASD be taken into consideration. Therefore it's essential to not apply treatments across the spectrum, which would tend to dilute effective treatments, but instead to identify sub-groups of those who have documented medical histories or laboratory data indicating they might respond favorably to a particular targeted treatment.

b. New opportunities.
Short term goal number two that addresses co-occurring medical conditions in ASD should target conditions arising from altered/impaired immune, metabolic, and gastrointestinal function in those with autism. Short term goal number six involving assessments of safety and efficacy of five widely used interventions should target those reported by parents as being most effective, such as chelation therapy (or therapy aimed at increasing glutathione and promoting detoxification pathways), supplemental methyl B-12, specific carbohydrate diet, food allergy treatment, and melatonin. Clinical trials should take into consideration heterogeneity and sub-group those with autism based on historical or laboratory data indicating that the child may benefit from the proposed treatment or intervention. Clinical trial methodologies also need to be developed that can accurately assess effectiveness of multiple treatment regimens.

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

Respondent 0465

a. Gaps and underrepresented research areas.
While ABA and similar therapies have been well studied, there are other treatments for the whole person. Language therapy and physical therapy as well as occupational therapy are important. Non-traditional therapies such as hippotherapy, music and art therapy, and swimming may also be components of a therapeutic modality which seeks to enhance quality of life.

Respondent 0466

a. Gaps and underrepresented research areas.
Look more at natural treatments (diet and nutritional supplementing) that improve the overall function of an individual's immune system, neurological system, gastro-intestinal and endocrine systems. Currently there is far too much emphasis on prescription drugs that do nothing to address body function. Because of the risk of adverse effects, myself and many parents disagree with medicating as a treatment approach for ASD. We want a safe and effective intervention that helps our children.

b. New opportunities.
Diet- Gluten free amd casein free diet for example supplements that support immune function, endocrine function, gastrointestinal processes, inflammation and the neurological system.

c. Research priorities.
Research diet and natural alternatives more. Study/ track the progress of ASD children that have used natural treatment protocols versus those who haven't or relied only on behavioral interventions.

Respondent 0472

c. Research priorities.
Research into alternative means of communication such as PECS (and other forms of Assistive Augmentative Communication or AAC) is vital and should be a top priority. PECS/AAC is good example of practical interventions--tools which will improve many autistic people's lives by providing a means of communication which is not typical but which may be easier and more effective for autistic people. These tools are geared towards promoting autistic communication rather than pure normalization. I applaud the IACC for including this within its research agenda.

Respondent 0473

b. New opportunities.
Develop and test biologically-based treatments for core symptoms of autism since current approach is multi-factorial, the treatment trials should be too (e.g. testing the DAN! protocol as written rather than individual components) Determine symptom presentation (in non-communicative individuals) of various medical morbidities, particularly GI disturbances, and identify appropriate diagnostic assessments and treatments Determine utility of dietary manipulations, use of prebiotics/probiotics, and other complementary-alternative therapies. Pick the low-hanging fruit such as testing anti-oxidants, treating inflammatory bowel diseases, and supplementing with methyl-B12 and other targeted supplements Determine utility/feasibility of immunomodulatory therapies Biological repositories be established for maternal blood samples, cord blood, urine, stool, blood, etc.

Respondent 0474

a. Gaps and underrepresented research areas.
Because it is a proven approach, and one in which research aimed at further advancing and improving services continues, we urge the IACC to specifically support research in applied behavior analysis and, in particular, applied behavior analytic research designed to improve curricula and methods for teaching individuals with autism. Secondly, although effective services exist, they are in extremely short supply. We also urge the IACC to advocate for research on the dissemination of empirically validated services and the training of service providers.

b. New opportunities.
There is a need for continued research within applied behavior analysis. Behavior analysis is a well established science with an active research community that continually advances an empirically-based technology for teaching individuals diagnosed with autism. Research in behavior analysis has produced effective interventions for behavioral symptoms of autism but research in this field is ongoing and funding is needed. Additionally, there is a need for advancing research evaluating methods of dissemination of effective interventions and training professional to implement those interventions.

Respondent 0476

a. Gaps and underrepresented research areas.
70 years of 'behavior treatments' springing from not-the-whole-truth guesswork made while always looking only at negative aspects, and only in frustrated, apprehensive, and worn down children, has done harm to many individuals with unrecognized useful capabilities. From our experience, people living on the autism spectrum can and will often approach near normal behavior and perform quite well, IF they are valued in society for their uncommon capabilities and skills, treated with respect, and challenged appropriately.

b. New opportunities.
Concerning the condition surrounding autism, M has been naively chasing symptoms of a problem, mistakenly assuming the symptoms are the problem. If M... learns the requirements and utility of the SPRATS of an individual with autism symptoms, and the SPRATS interaction with the individuals Life Needs (R-W-N-S-eHa-UA-eHoE-ESaC-IdF-aHa-DHoE-EBI) while employing appropriate POSITIVE BEHAVIOR SUPPORTS, such WILL optimize the development of a large number of eccentric experts, with a positive outlook on self and society instead of a boor with poor social skills. These people, with a real chance for success as an independent adult, will be taxpaying contributors to society and not a drain.

c. Research priorities.
See section IV b.

Respondent 0477

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

Respondent 0480

a. Gaps and underrepresented research areas.
Obtaining an accurate diagnosis is of significant concern for the State of Florida. Making a diagnosis of Down Syndrome simply requires visual identification, confirmed with a genetic blood test. Autism disorders, however, cannot be diagnosed by a physical test, but rather a specified number of characteristics listed in the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) must be present, in ranges inappropriate for the child's age. ASD can be especially difficult to diagnose in young children where speech and reasoning skills are still developing and is even more difficult to reach an accurate diagnosis on the less severe end of the spectrum. Diagnosis is based on a combination of parent interviews, non-medical tests, observation, and professional judgment.

b. New opportunities.
Some noted primary advantages of early intervention are: presence of neurologic plasticity at younger ages; better school placement outcomes, for example, participation in general education versus special education; better chance of graduating from high school; greater developmental gains: higher likelihood to live independently: positive economic impact over a life-time. Early intervention may be successful if it is intensive in hours; families are active participants in their child's intervention; staff persons are well-trained and knowledgeable about the disability; there is objective evaluation of the child's progress; the curricula is highly structured resulting in a predictable daily routine and is focused on developing communication skills as well as other developmental skill areas; teaching procedures emphasize generalization and maintenance of skills; and, transitions to school are carefully planned and well supported.

c. Research priorities.
In Florida ABA services are available to eligible participants on the Developmental Disabilities (DD) Home and Community Based Services (HCBS) Medicaid Waivers. After conducting a behavioral assessment and creating an individualized behavioral plan, the Behavior Analyst typically meets with the individual and/or primary caregivers two hours per week, while the Behavior Analyst Assistant (as another service available on the DD HCBS waiver) meets with the individual and/or primary caregivers for 8-10 hours per week to implement treatment recommendations.

Respondent 0481

a. Gaps and underrepresented research areas.
To the extent that medications are studied, their purpose should be to improve quality of life such as by reducing anxiety, not to change an Autistic person into something else. Medications such as Risperidone that place a child at risk of developing serious long-term health problems should not be casually used to suppress behaviors that could instead be accommodated, and their use in research studies should be subject to very stringent precautions to prevent children from being unnecessarily endangered.

b. New opportunities.
As suggested, more studies on speech and occupational therapy and adaptive technologies would be very helpful, as would studies on individualized school curricula and other school supports. Because there is little evidence to support behavioral programs and because the objective of suppressing harmless differences in a minority population is unethical, funding should be directed elsewhere.

c. Research priorities.
Suggesting that very young children should receive interventions to prevent development of autistic characteristics and reduce family burden is disrespectful to Autistic people. We are citizens whose diversity should be respected, not burdens. More efforts should be made to include Autistic self-advocates in IACC workgroups and other settings. Priorities should be determined according to what Autistic people have found to be helpful. All research should be conducted with due regard for the human rights of the subjects.

Respondent 0484

a. Gaps and underrepresented research areas.
Positive Behavior Support and meeting the unique individual needs of each individual will result in better outcomes for all. Music Therapy, acupuncture, pet therapy and other methods often ignored by many behavior therapists.

Respondent 0485

a. Gaps and underrepresented research areas.
Bio medical, Bio-medical, Bio-medical. This is the cutting edge of therapeutic, safe intervention that is helping numerous children. These therapies are addressing the underlying physical ills of autism.

Respondent 0488

a. Gaps and underrepresented research areas.
Relationship based, family mediated interventions are missing, and in spite of the fact that many families choose these types of interventions after finding behavioral interventions to be only partially effective or not effective at all. Examples of the types of interventions that should be studied include: Relationship Development Intervention and Hanen.

b. New opportunities.
Maybe this is the wrong place for this, but I think we need a better definition of what it means to help. How are we measuring quality of life for the child with ASD? Are we measuring it at a family systems level? Are those measures broadly used as assess outcomes in clinical practice or are they restricted to academic settings?

c. Research priorities.
I often see families and caregivers marginalized in intensive behavior programs. I'd like to see some research in parent-mediated interventions, such as Relationship Development Intervention and Hanen, which places parents at the center of the process. Parents, unlike therapists, have a lifelong commitment to their children and yet we devote very few resources to systematic collaboration with them.

Respondent 0490

a. Gaps and underrepresented research areas.
Please do more research into RDI or relationship develop intervention therapy.

Respondent 0491

a. Gaps and underrepresented research areas.
Section IV discusses behavioral approaches such as ABA, but does not mention developmental-relationship based approaches. Extensive review has shown that there is not enough research to clearly support either approach. The question of which approach is most effective and for what purpose should be a major research topic.

b. New opportunities.
A major research opportunity is investigating the outcomes for children receiving behavioral approaches vs. developmental-relational, affective based interactive therapies such as DIR/Floortime. Multiple small scale studies may offer some advantages in terms of feasibility and fidelity. Because of the great diversity of children labeled ASD, there is more opportunity in small studies to describe individual differences and describe outcomes which are specific to those populations.

c. Research priorities.
Since children often enter therapy at 2, I would recommend that trials for 'early intervention' extend to at least 5 years of age. The amount of money allocated for current and potential future biomedical investigation ($128.9) vs. therapeutic outcomes for current therapies ($49.0) is lopsided. Current intervention is comprised of primarily therapeutic interventions (OT, Speech, Behavior, Floortime, and Education) with very little scientific support for bio-medical interventions (nutrition, medications, bio-medical procedures). Although there is a need for bio-medical studies, this is also covered by understanding the biology of ASD. Funding is needed urgently at this time to clarify the effectiveness of currently available treatment options, such as ABA and DIR/Floortime. The last short term objective to study comprehensive early intervention, does not meet the SMART criteria (specific and realistic) considering the many variables involved, and would make outcomes difficult to interpret.

Respondent 0493

a. Gaps and underrepresented research areas.
Chelation nutritional therapy diet ABA parent involvement in classroom and educational approach they live it 24/7 we could stop treating them like they don't have something to offer.

b. New opportunities.
Detox gets the chemicals injected into the children out.

c. Research priorities.
Biomedical intervention we didn't have to find the breast cancer gene before we offered treatment. Maybe someone should contact Autism Research Institute since they have been working on this since 1967 Oh yeah they actually have 35 some years of parent surveys we wouldn't want to look at what the people living this might have to say.

Respondent 0494

a. Gaps and underrepresented research areas.
First off, insurance coverage must be provided!! This is a medical disorder and should be treated the same way as other childhood diseases. All of the "mainstream" therapies (ABA, Floortime, OT, Speech, RDI, Sensory therapies) must be available for all children. The "crazy" diets work for many kiddos. Research must be done in the biomedical arena. Talk to the doctors that treat their own children with autism. Think outside of the box...the box clearly isn't working for most of our children.

b. New opportunities.
same as a.

c. Research priorities.
same as a.

Respondent 0497

c. Research priorities.
Relationship Development Intervention, or RDI, should be included in high priority research on treatments/interventions for autism.

Respondent 0500

a. Gaps and underrepresented research areas.
Biomedical treatments for neuro-inflammation. Detoxification of heavy metals. Treatment of gastrointestinal issues.

c. Research priorities.
Biomedical treatments. Detoxification treatments, including chelation. Antifungal treatments for gastrointestinal issues.

Respondent 0501

a. Gaps and underrepresented research areas.
Problems my family faces that needs solutions include: over sensitivity to sensory stimuli, feeding difficulties, short attention spans, sensitive mouths that interfere with hygiene, understanding their learning styles, teaching approaches that are effective, and facilitating communication.

c. Research priorities.
Focus on improving the quality of life of the *people*, not fixing them. Teach individuals with autism and their families and the professionals who work with them how to accommodate and cope with differences.

Respondent 0502

c. Research priorities.
Would like research into the so-called DAN protocol, to settle once and for all if these treatments are effective. Would also like research into different types of stimulant medications (often used with ADHD) for use with autistic kids. More early intervention research for families "at risk," what happens if we start working with the children as babies, etc?

Respondent 0503

a. Gaps and underrepresented research areas.
As the parent of a child with autism, I am concerned that nonverbal and low-communicating individuals have been almost entirely excluded from federally-funded research. Nonverbal and low-communicating individuals with autism deserve to be included in the Strategic Plan for Autism Spectrum Disorders Research. Almost nothing is known about nonverbal and low-communicating individuals. I know of no treatments that have been designed specifically for nonverbal and low-communicating individuals. Since nonverbal and low-communicating individuals make up about 50% of the autism population in this country, it is critically important that research be aimed specifically at this group.

b. New opportunities.
The future right now looks very bleak for individuals with nonverbal or low-communicating autism. Many will end up relying on government assistance for their long-term care. Please help us look forward to a better future for our children by including nonverbal and low-communicating individuals in the federally-funded research.

Respondent 0506

a. Gaps and underrepresented research areas.
We agree with the need to design and support rigorous trials that target psychotropic medications that may help "treat" children with ASD but also want to encourage trials focused on medical co-morbidities such as gastrointestinal issues, neurological issues, nutrition and feeding. Understanding neurologic variations, including EEG, that may affect behaviors (daytime, sleep, etc.) and potential treatments (e.g., anti-epileptic drugs) are important areas of investigation. We also feel that it's important to understand whether certain lab tests (i.e. EEG, MRI) should be included as part of the standard of care for children with autism. This has significant implications for insurance reimbursement and health care policy.

Respondent 0507

Helen McNabb

a. Gaps and underrepresented research areas.
1. Research on a process of "teaching then reviewing" one-to-one with a student. 2. Research on integrading one-to-one Speech Language therapy into the classroom in REAL TIME. 3. An unbiased, independent research on the Maryland State Dept. of Developmental Disabilities Association's - successes and failures. 4. An unbiased, independent research on the Maryland State Dept. of Health & Mental Hygiene relating to services for those with ASD - successes and failures. 5. Research the amount of financial aide needed to support an adult with ASD. 6. Research # of students with ASD attending and graduating from college. 7. Research the schools and colleges that provide the best supports for those with ASD. 8. Research # of adults with ASD that also have mental health illness. 9. Research # of adults getting respite services and those who are not and why.

b. New opportunities.
1. Integratding one-to-one Occupational Therapy to include Daily Activities of Living as a class requirement for those with ASD. 2. Allowing private professionals such as Speech Language Pathologists (hired by the parents) to implement their recommendations into the public school and collect the results. 3. Raise awareness of a clearer understanding of Asperger's Disorder for everyone. 4. Raise awareness of a clearer understanding of ASD for everyone. 5. Raise awareness in the private and public sector to erase the stigma, bullying, etc. 6. Implementing more funds to support the various needs of those with ASD. 7. Teach students in public school about those with special needs - understanding their difficulties. Teach compassion!

c. Research priorities.
1. Address the needs of the older population since they have been waiting for years! They need daily supports in all areas: Financial, educational, medical, respite, etc.

Respondent 0509

a. Gaps and underrepresented research areas.
"Support at least three randomized controlled trials that address co-occurring medical conditions associated with ASD by 2010... and "Conduct five randomized controlled trials of early intervention for infants and toddlers by 2011..." and "Launch three randomized controlled trials of interventions for school-aged and/or adolescents by 2012..." and "Test safety and efficacy of at least five widely used interventions (e.g., nutrition, medications, medical procedures) that have not been rigorously studied for use in ASD by 2012..." Be sure to include DAN! biomedical treatments in these studies, including dietary intervention (GFCFSF and SCD), chelation, vitamins B-12 and B-6, curcumin (Enhansa), digestive enzymes, probiotics.

b. New opportunities.
Rather than simply looking at one biomedical intervention, track a few hundred children who are going through DAN! treatments. Try to determine which children benefit from specific treatments and why. Usually one treatment by itself isn't enough, but a number of treatments in combination can have a gradual effect. This can make research tricky.

c. Research priorities.
Much too little attention has been paid to biomedical treatments.

Respondent 0510

a. Gaps and underrepresented research areas.
How can the average American family obtain access to these options, and how do we tailor them to our children's needs??

b. New opportunities.
same

c. Research priorities.
Provide free access to these options for families with diagnosis-we want to try!!

Respondent 0512

b. New opportunities.
ABA (applied behavioral analysis) therapy should be readily available as part of early intervention programs.

c. Research priorities.
Studies should be conducted to establish whether diet change and supplementation and other biomedical interventions can alleviate autistic symptoms. As a parent of a child with autism, I have watched my child blossom with these types of intervention. These children DESERVE to have EVERY avenue explored on their behalf even if it not a popular position to take.

Respondent 0514

a. Gaps and underrepresented research areas.
Treatments . . . . . it goes without saying that nothing behavior works. Nothing in our health care system has been helpful for 6 years. Create a new doctor available to every Autistic ---- A toxicologist in every hospital. . . . Or create a federal law to pay for DAN doctor treatments this is biologically caused. Do the nonvacinated study vs. vaccinated. And cut out all the toxins the CDC and governments are pimping.

b. New opportunities.
Treatments . . . . . it goes without saying that nothing behavior works. Nothing in our health care system has been helpful for 6 years. Create a new doctor available to every Autistic ---- A toxicologist in every hospital. . . . Or create a federal law to pay for DAN doctor treatments this is biologically caused. Do the nonvacinated study vs. vaccinated. And cut out all the toxins the CDC and governments are pimping.

c. Research priorities.
Treatments . . . . . it goes without saying that nothing behavior works. Nothing in our health care system has been helpful for 6 years. Create a new doctor available to every Autistic ---- A toxicologist in every hospital. . . . Or create a federal law to pay for DAN doctor treatments this is biologically caused. Do the nonvacinated study vs. vaccinated. And cut out all the toxins the CDC and governments are pimping.

Respondent 0516

a. Gaps and underrepresented research areas.
Nonverbal kids with autism are underrepresented in current research. The Strategic Plan for Autism Spectrum Disorder research should include people with autism who are nonverbal. More research is needed to develop interventions that are effective for people with autism who are nonverbal.

b. New opportunities.
Lack of communication is the biggest problem for people with autism who are nonverbal. Research aimed at developing new communication methods is desperately needed. Research designed to better understand people with autism who are nonverbal is also needed and important. Autism research has led to many improvements for people with autism. People with autism who are nonverbal have not experienced as much of this success.

Respondent 0517

a. Gaps and underrepresented research areas.
As the step-parent of a nonverbal child with autism, I am concerned about the lack of funding and research into this major subgroup of autism (15-20% of the autistic population). These kids are written off as "low-functioning" but for those of us who are familiar with these kids and their more verbal counterparts, it is obvious that this label is inaccurate and damaging. His daily struggles to communicate remind me of all I take for granted. I cannot imagine how difficult it is for him to be unable to communicate the simplest messages and information that even very young typically developing children can communicate easily. As an educator, I have become convinced that we have failed to provide him the necessary educational supports to allow him to excel. The prevailing attitude of "education professionals" is biased against him since there is no research to support optimistic goals.

b. New opportunities.
Although there is evidence that some or most of these kids may be primarily auditory learners, no research has been done to validate this evidence or explore the learning opportunities it may present. Some exciting advances in treatment have made significant improvements to the lives "high functioning" kids. Strong emphasis on visual cues and learning modalities in addition to sensory integration, just to name a couple. I have 3 nephews that benefitted from this research. However, we've left behind their nonverbal cousin. It's time to close the gap. As we strive to maintain the research momentum, we need to remember those we are leaving behind and bring a special focus to understanding their condition and abilities and learning how to reach them.

c. Research priorities.
Research aimed at understanding the communication disabilities of the nonverbal kids with autism. Particularly important is research aimed at developing appropriate communication interventions targeted specifically for the nonverbal end of the autism spectrum. I believe it is necessary to explicitly promote the goal of including these kids in future research efforts.

Respondent 0519

a. Gaps and underrepresented research areas.
Implement a more consumer based review process for conducting treatment research similar to the Department of Defense CDMRP for autism to improve transparency and meaningful public participation. Implement increases in short term objectives 1, 2 and 6 by public IACC members in response to this crisis.

b. New opportunities.
Increase and improve research designs to consider subgroups of responders versus the aggregate treatment response with recognition that treatment response can inform phenotype studies. Data-mine clinical data from ARI on interventions that have not been rigorously studied and increase investigation of these interventions to 20.

c. Research priorities.
As in Question 3, remedy balance of federal representation to public IACC representation to prevent skewing of prioritization. Lack of urgency displayed by Federal members does not serve the urgent need of our community.

Respondent 0520

a. Gaps and underrepresented research areas.
I am requesting that there be funding to study the efficacy of Relationship Development Intervention (RDI) as a viable treatment modality for individuals with ASD. We have seen amazing results in both of our ASD children through RDI treatment.

b. New opportunities.
I am requesting that there be funding to study the efficacy of Relationship Development Intervention (RDI) as a viable treatment modality for individuals with ASD. We have seen amazing results in both of our ASD children through RDI treatment.

c. Research priorities.
Allow RDI to be included in the autism waiver and disability services. Allow funding to study RDI as a viable treatment, research studies show that this treatment is working for autistic children and their families. This is not an experimental treatment. It is the gold standard in autism treatment.

Respondent 0521

a. Gaps and underrepresented research areas.
Study low and nonverbal children with autism and the innovative methods like Rapid Prompting Method (RPM) offer. Alternative methods like TRM (Trans magnetic stimulation) may also have merit

b. New opportunities.
Study innovative methods like RPM that may have little empirical research to date but reveal important directions for teaching low and nonverbal children with autism

c. Research priorities.
Allow greater attention to low and nonverbal children to be studied and the innovative methods that help them develop their intellectual, social and physical potential.

Respondent 0524

a. Gaps and underrepresented research areas.
Take a look at DIR/Floortime and RDI, not just ABA. ABA can be great, but it's based on what we want an autistic person to look like on the outside. We need to start assuming that there is a person with human desires and choices on the inside, someone who might be reached through DIR/Floortime, and/or taught to interact meaningfully with RDI.

Respondent 0525

a. Gaps and underrepresented research areas.
Defeat Autism Now treatment protocols.

c. Research priorities.
Stop giving children Toxic Vaccines!

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

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

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