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What Other Comments Do You Have About the IACC Strategic Plan for ASD Research?

Respondent 0013

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

Developmental language disorder is the core handicap of children with autism. This needs to be the priority for research on autism. Children learn to speak through hearing. Auditory processing disorders need to be looked for. Evidence published decades ago revealed the vulnerability of the auditory system to injury from any factor that disrupts aerobic metabolism. Perinatal anoxia, prenatal exposure to toxic substances like alcohol or medications like valproic acid (Depakote), and postnatal treatments including vitamin K, antibiotics, and vaccine administration can lead to impairment of metabolism in the auditory system. Every perinatal intervention should be investigated as a possible root cause of injury.

Respondent 0016

Contact me. [redacted personally identifying information]. I'm happy to contribute to the discussion via conference call. My son has a pretty good life for having severe autism, but I can't do this forever. We introduce him to others through his microboard. He is a human being and deserves a quality life even after I'm no longer able to pull all the strings together every day, hourly, etc.

Respondent 0017

There is no other disorder of which I am aware where even the most far flung; obtuse, undocumented treatments are legitimized through "labs" and treatments. Replication studies, Meta analyses, literature reviews are essential for maintaining the health of families of children with autism. Families are the core means of support for these individuals throughout their lifetime and research should be aimed where it will do these individuals the most good. What is pragmatic should supersede what is "interesting" and our funding of research should reflect this emphasis.

Respondent 0018

You involvement in this process should be viewed as an honor. You should not want to do anything else. Hundreds of thousands of children and many more waiting to be born depend on it. Don't let petty politics or favoritism to industry get in the way of you doing your mission. The cause and solution is out there. The pieces are falling together and children (including my own) are already being helped. It is your job to make sure the money is there to put the final pieces together and save this generation. DO IT.

Respondent 0022

There are lots of research plans, there is no care. What good is the research then?

Respondent 0023

John Best
Hating Autism blog

In all this time, you haven't done a [profane language redacted] thing besides having useless meetings. Stop wasting time.

Respondent 0029

A key priority is what model of health care delivery is going to work for people with autism, especially adolescents and adults. This is a blind spot in the system.

Respondent 0031

Please do something to help adults with ASD. In my state no matter how impaired an adult with ASD is he can not get care unless he also is low IQ. In fact until a couple of years ago the top State of Vermont autism experts insisted that a low IQ (below 70) was required to qualify as autism. Now I am told his current testing qualifies him as having autism and needing services but he doesn't qualify for services because he is too rich at a few dollars above Medicaid level.

Respondent 0035

I think it is also very important to research social skill development and functional skill development for the workforce. Talk to children, adolescents, and adults who are on the spectrum and determine what skills are the hardest for them to learn and how they would prefer being taught those skills. Research current social skills curriculum to determine which are the most effective.

Respondent 0037

We need to look at the people on the board and get rid of the persons with a conflict of interest, and people that are there under false pretense like the former vice president of Autism Speaks.

Respondent 0038

Do the right thing. Search for truth. Recognize and discredit propaganda. Understand motives that certain groups have. Don't be intimidated. Thank You, Greg Powell, RPh Savannah, GA

Respondent 0042

Question 5 and six are by far the most important. Too much focus is being put into the children who aren't born yet that could have autism. Not enough focus is being put on adults with autism, or the children who are faced with lack of quality services.

Respondent 0046

More families should be involved in the IACC Strategic Plan.

Respondent 0047

I suggest that the IACC stop making the situation worse by ignoring and/or sabotaging the efforts of parents to speak to these issues from their true life experiences, and start listening to them. The pharmaceutical companies are NOT interested in any solution that would eat into their profits. Allowing this committee to be controlled by people who are on the payrolls of or being contracted by them is a travesty, and completely ignores the intent of Congress when the committee was authorized.

Respondent 0049

Research HFA. Generally the individuals who are high functioning don't get much attention because their symptoms don't cause seizures or chronic pain. But much, much more needs to be learned about how they communicate and how we can communicate with them. And research it as a condition, not a disease or a disorder. It's not a tragedy; it's a challenge, no doubt, but one we can meet if we know what we're doing.

Respondent 0052

I feel that the real issue here is what is going to be most helpful. Much of the areas touched on here have had plenty of research done, but no easily accessible results. I think the most helpful thing that can be done would be to compile the research into a centralized accessible database so that the ASD community would have easy access to reliable information, but more importantly it needs to be done an objective way so that even things that don't seem to work are represented or the widespread confusion that exists now will only get worse.

Respondent 0054

I believe that persons like Ari Ne'eman and Katie Miller who are opposed for a cure for autism should not be allowed to present their views before the IACC. Nor should anyone else who preaches against a cure and prevention of this disorder. I also believe that Stephen Shore should no longer be a public member of the IACC and you should instead appoint someone who is on the spectrum and wants a cure and prevention of this disorder instead. More than one person like this would be a good idea. Also Stephen Shore and John Robison should not be allowed to review research that goes to curing autism at public expense as they are not qualified and they are not in favor of curing autism. Also Morton Gernsbacher's funding should be discontinued immediately.

Respondent 0055

We are at an exciting point in creating long term care options. Long term care is the biggest cost of ASD, but because many parents are dead or burnt out, there is not the advocacy that there is for children. We have to understand the lives and needs of the older population, all the children will be joining them at some point, but right now it is almost uncharted territory.

Respondent 0057

Focus more evenly on progressive interventions for the population at different age levels and not just on prevention

Respondent 0059

Vaccines and esp boosters are the problem, Tom Insel's brother made a lot of money from the invention of the Hib. Tom Insel should excuse himself and let the real truth come out.

Respondent 0060

Mission/Vision statement absent of NIH values on causation, recovery and prevention - integrate. Cross-cutting themes absent of recovery statement - recovery is possible - integrate. Introduction: ASD "is" a national health emergency, not an "emerging" emergency. Higher degree of meaningful public participation via a DOD CDMRP model and Autism Advisory Board is necessary - implement/recommend. Include environmental factor/toxic load screening in early detection. Re-engineer funding process to include allocation of research initiatives among special interest panels to continuously fund through program announcements and other innovative grant-making initiatives - "innovation fund" and process - responding to new research and treatment opportunities. Convene workgroup/workshop to justify substantial increase necessary in research budget based on "cost of disease" model and opportunity in the scientific/clinical communities to perform high-quality research.

Respondent 0074

Why is IACC under NIMH when it is a physical illness? Everything I have read about the IACC indicated you people are about as useful as [profane language redacted] on a bull. I hope whoever reads this will excuse my anger, but you'd be angry too if your child was taken from you in the cruelest way possible.

Respondent 0075

Our experiences working with adults with the NEUROLOGICAL CONDITION THAT CAN AND DOES RESULT IN AUTISM, indicate that IF enough of the SPRATS of an individual with the condition are observed, appropriately studied and understood on their own AND as to their interaction with the individual's real LIFE NEEDS, that with APPROPRIATE recognition, encouragement, and experiential-education, and confidence, there WILL be HIGHLY INFORMATIVE, HIGHLY USEFUL, and HIGHLY MARKETABLE PATTERNS THAT EMERGE.

Respondent 0077

I personally believe way more resources need to be dedicated to quality of life issues, rather than seeking "prevention" or "cures." I think that if the money were spent in such a way, we would be able to gain more "bang for our buck" and autistic persons, who are capable and willing, would be able to be contributors to our society, rather than be perceived as drains on it.

Respondent 0095

I have attended two sessions in DC and truly appreciate the work and effort being made. However, I find that each time I watch either by computer or in person, there is not enough urgency placed on getting things going. This is a huge issue and we need the answers NOW. This group has the potential to make a difference in so many families' lives and I just hate watching the ongoing lack of progress. Where is the accountability?

Respondent 0102

DO THE RIGHT THING! Autism is rampant, and can't be caused by genetics alone. Don't waste more money on genetic research - start looking at the environmental triggers causing this horrific epidemic. When thousands and thousands of parents tell the same story of a child who suddenly became ill and regressed into autism following a series of vaccines, you need to LISTEN to them. If one in 100 kids were suddenly going blind, and it happened right after they had a series of vaccines, would you say that was just a coincidence? Or would you do the right thing and look at the vaccines as a probable cause? INDEPENDENT research! Throw out all the [profane language redacted] studies bought and paid for by the drug companies (yes that includes anything done by the CDC) and look at the true science done on vaccine damage. Study health outcomes of vaccinated vs. unvaccinated kids! This is the study the vaccine companies fear the most - because they know as well as you and I do what it will reveal.

Respondent 0105

Bridge the gap between research results and their implementation in the ASD communities. Unfortunately I had no time to make more comments please, post my comments as well as my name. Dr. Linda-Angelique Papadimitriou-Varsou, PhD, MPH, DABCC, Mother of a 24 y.o. son with autism. Currently Assistant Professor at the University of Athens School of Medicine in Greece, Immunologist, Hygienist and Clinical Biochemist, trained in the US at the University of Maryland School of Medicine and at the Johns Hopkins University School of Medicine and Kennedy Krieger Institute in neurosciences and autism. Advocate for the rights and strengths of persons with autism, Board and founding member of the Greek Society for the Protection of Autistic People, long standing member of the Autism Society of America and its Baltimore-Chesapeake Chapter, Member of the Autism-Europe and of the World Autism Organization. 3801 Canterbury Road, Baltimore, MD 21218, E-mail: varlin1@yahoo.com

Respondent 0116

I hope this agency will be able to effect change to allow new medical treatments to be covered by health insurance, including behavior therapy.

Respondent 0131

We suggest that the terms "speech-language therapy" or "speech-language pathology services" be used in place of speech therapy as it is a better reflection of current terminology used in the profession. Additionally, we would suggest that there be a balance to research initiatives to examine both behavioral/ social issues as well as the biological and neurological issues.

Respondent 0133

Go to the families...find out about their experience...and those who do the work on the ground. Accept the many experiences as part of the puzzle. Now that the immune vaccine fund has paid out its first client for immunizations which triggered autism, (Hannah Poling) it is time to stop the obfuscation and gather the data... ASD has become a political diagnosis instead of a developmental diagnosis and it needs to get out of the political arena.

Respondent 0134

As mentioned, I do not know whether the IACC Strategic Plan for ASD Research included vitamin D, but I would guess that it did not. Vitamin D has only recently become very important in so many disorders, that I do not believe it has been considered by the committee.

Respondent 0136

Read the book Habakkuk in the Old Testament and have faith. The righteous live by this (2:4). Those involved all have good intentions. I have prayed for this for many years. Those who sit on these "panels" are all "representatives" of an agency, view or someone involved from a personal perspective. This is good. Add someone to this group who listens, prays and God will reveal His purpose in this "illness."

Respondent 0141

Language is important and can be hurtful. Please gain input from Autistic people to prevent using insulting, degrading language. Please respect our rights as human beings to be treated, referred to, and spoken about with dignity. It's already bad enough to be spoken about, and frequently spoken for, by people who are not one of us. Please allow us the freedom and power to choose what is said about us and in what way. We all have thoughts and feelings.

Respondent 0148

In my opinion, the ABA research and political initiatives in state legislative bodies has placed them in an awkward position. They appear to be advocating insurance reimbursement only for ABA services for ASD and related disorders. The insurance industry, medical and all professions associated with treating at risk children are all pledged to present a choice of reasonable treatment options. ABA is advocating legislation that would make them the only viable choice. Secondly, they now have begun claiming that their methods includes all the features of distinctly different treatment approaches to ASD, etc. By doing both, they have pitted themselves against the greater scientific community when they could be collaborating and sharing perspectives with other approaches to successfully treating at risk children of all ages.

Respondent 0149

This contains a lot of great ideas and suggestions for research studies, but not much practical information. There should be a federal website that links all the state websites on autism and that lists all the services that are available to people with ASD, with links to those services. There should be SOME coordination of services and schools among all states. This is lacking. There should also be something that addresses the LACK OF TRAINING among educators in the mainstream schools, among law enforcement personnel (police, judges, etc...), among healthcare providers (doctors, nurses, dentists, EMT, aids), among transportation personnel (bus , train , airport security, airline personnel), among sales staff in retail stores and food establishments, among postal workers - on how to deal effectively with people with ASD. I also didn't see anything about studying where adults with ASD will live and who will care for them. Needs of adults with ASD isn't strongly addressed.

Respondent 0151

Thank You!

Respondent 0152

I think that the IACC Strategic Plan for ASD Research is a long-needed and very positive way to solicit current information about ASDs from multiple disciplines, as well as from families and individuals directly affected by ASDs. The commitment to annual review and updating is also encouraging, as is the relative easy accessibility to the forum via the computer. No one is left behind, so to speak, who has an interest in adding their thoughts, wishes, frustrations, as well as new ideas and suggestions for augmented or even brand new avenues of research into the many facets of Autism Spectrum Disorders.

Respondent 0153

I have really one thing to say, that I became concerned two days ago that ultrasound events might be linked to autism. I'm not a researcher, but I would very much like to be reassured that this research has been done. I feel like there was research done 16 years ago (Campbell 1993) showing a possible link and animal studies done three years ago (Ang, et al 2006) showing another, but that this area is deeply under researched.

Respondent 0154

Autism is treatable and what is worse is that it is PREVENTABLE.......Our own ignorance and arrogance to this medical issue is creating a generation of disable people, to which our society will not be able to sustain. Stop over vaccinating.....stop overusing antibiotics.....check titers....

Respondent 0157

Thank you for the opportunity to comment.

Respondent 0161

It's about freaking time to get yourselves in gear. According to the soon-to-be-released prevalence study, 1 in 38 boys is now autistic. You need to be running around like your hair is on fire, not calmly re-examining the same old medical theories from 40 years ago.

Respondent 0168

I am not sure where this goes, but we really need research to help with tools to measure and identify people who truly have a disorder or disability, as in an Autism Spectrum Disorder from those that have features of, past, or more mild, but not impairing symptoms of an Autism Spectrum Condition. Since there is a continuum in ASD, the line from disorder to features has large implications for resource use and the debate on whether autism is increasing.

Respondent 0173

Thanks for working on behalf of kids like my son.

Respondent 0176

Thank you for this valuable opportunity to provide feedback regarding ASD research and strategic planning. Like many parents of children with ASD, I have spent my life and my life's savings assisting my son in gaining critical abilities that were stripped by autism's continuous, pervasive, regressive insistence. As my son reaches middle school, he perches on the last window of opportunity to develop the social skills necessary to move on as an independent, employable, fully capable adult. He speaks, but he has no friends. He has interests, but cannot carry on a two-turn conversation. There are precious little resources to assist me in assisting him and so much ground to cover. We availed ourselves of every intervention that I could afford. He made progress that made autism tolerable, yet I look at the boy who is taller than me now and see the ongoing level of support he requires to navigate the world. I pray for him and his cohorts, working to create a world that works for them.

Respondent 0177

It is my opinion that the parents need more help. Many communities don't have enough support for the children and families. Many move to areas where more help is available which then puts stress on that community that may already be serving more children than they can afford. There should never be a waiting list, a waiting list is time lost for the child, and in a many cases it makes it impossible for the child to catch up or progress. I feel that immediately after your child receives this diagnosis every option should be readily available to them. I also believe that parents like myself should be offered some kind of mental health support or financial support as autism changes the entire life of the family. I am a single Mom raising a son with autism who is nonverbal and as well as a son with Asperger's. I have been financially and emotionally devastated and those are both difficult to overcome without appropriate help. We must study the affects this has on the parents and help them.

Respondent 0178

Words can not express the depth of my anger and bitterness toward the IACC! That statement may allow committee members to justify their ability to dismiss parental concerns about objectivity. From my perspective, I would rather have my passion and some compromised objectivity than have the debilitating disease of denial afflicting many IACC committee members and especially Dr. Insel. Please get rid of Insel. I will continue to pray for the committee members for the courage to face their worst fears, because those fears are true, and may God bless Dr Insel.

Respondent 0181

SPAN's foremost commitment is to children with the greatest need due to disability; poverty; discrimination based on race, sex, or language; geographic location; or other special circumstances. It is from these perspectives, the perspectives of the many families we assist, and our own experiences as parents of children with special needs, that we are sharing these comments. Personally, as the Family Voices Coordinator for New Jersey, I am the parent of a child with multiple disabilities, including autism. Our Mission: To empower families and inform and involve professionals and other individuals interested in the healthy development and educational rights of children, to enable all children to become fully participating and contributing members of our communities and society.

Respondent 0184

It would be helpful to let people know how much money is available, over how many years it is to be spent, what the process will be of applying for/granting money, whether the projects approved will be posted someplace (for all to know about) and how the results will be presented. That is, let us know the "flow" of the task before the IACC, especially relating to project approval and money distribution.

Respondent 0187

Please include more nonverbal subjects in your research. No research has been done on this group. This is a critical area that is missing from the autism research 'road map'. It is critical that cognitive testing for this group be developed.

Respondent 0194

We believe that the strategic planning process would be improved with input from federal agencies that do not currently participate on the IACC. Although the mandating statute for the IACC makes the committee responsible for "monitor[ing] Federal activities with respect to autism spectrum disorder," only the representatives of the Department of Health and Human Services and the Department of Education attend IACC meetings. Seeking the input of the Department of Labor and other agencies whose activities affect the lives of people with autism would augment the IACC's efforts to develop a strategic plan for autism spectrum disorder research.

Respondent 0195

I am frustrated as a parent whether it is research or community based programs little is being done to help my nonverbal quote unquote lower functioning 10 yr old boy. Time is ticking and as a parent I will need to make choices about my son's future that no parent should have to make - group home or residential home as an adult when I can no longer care for him. Do the research now and help me give him and others like him and children in the future a fighting chance. Do not let Autism keep him silent forever. Why does he not have a voice - I NEED TO KNOW - why does he find it so hard to communicate his needs to us - I NEED TO KNOW. What happened to my little boy who said "MAMA AND DADA" and clapped and smiled for the camera, where did he go? On his birthday every year - we celebrate - his life, his love, his hard work and buy his favorite things. However alone in my bed at night I cry on his birthday because I am a year closer to making choices about his future. HELP US!

Respondent 0199

My family has paid our taxes, supported many other organizations, exercised our right to vote etc. My husband works 60-70 hrs per week to support our family while I stay home with our PDD son. Who is 20. We receive little to no support from agencies. In fact he has been kicked out of 2 programs because there are no proper day programs for him due to his autism. We need help!

Respondent 0200

Please help the nonverbal children and adults.

Respondent 0202

All children are different, with different needs....please do not leave our children out, that have no voice!!!!!! Have a heart.

Respondent 0203

My experience has been that finding a communication system that works is the single most important factor in a child's success. Once they can let us know what they think and feel, we can find ways to change the environment, challenge them intellectually, and truly include them in their family, school and community. Facilitated Communication has been highly controversial, and has been totally dismissed by many. In my experience, it has changed lives dramatically and deserves further study.

Respondent 0208

Please remember our children on the spectrum who are very intelligent but nonverbal- they seem to be the forgotten ones in this whole process

Respondent 0210

Many of our young adults with autism could be living independently if there were a subsidy or other financial assistance for them and their families. Too many disabled adults live with their parents and never have the opportunity to learn the skills required for independent living. When family members pass on, these folks are left to the care of the community in expensive nursing and care homes. With proper assistance and training, many can learn to live independently with minimal supports. We urge the IACC to consider housing and related services for adults with ASD to be a priority area for this research agenda. While it's critical to strive for more information concerning individuals under 22 years of age and we do support much of what has been presented in the IACC strategic plan, we're concerned that not enough research is dedicated to understanding how to best support older individuals who have equally intensive needs and are often without supportive environments.

Respondent 0215

So much emphasis seems to have been placed on the needs of the very young (which I completely understand, because if we can intervene when they're young hopefully we reduce or eliminate the needs as they get older). However, we have a whole nation of aging adults with autism! Also, the needs of those who are nonverbal (what some might call) seems also essential when looking for causes or cures. My typical son desperately wants to know if he is a genetic carrier and what his chances are bringing more children like his sister into the world. How can we help people like him??

Respondent 0221

focus on medical aspects of autism. Healing the gut should be the first priority.

Respondent 0222

If a person can beg, I am begging you to please not forget those who are beyond the early intervention age. Our children deserve to be included in research. There seems to be so very little said about services, research or resources once kids get older. And there also seems to be little being done to help low-communicating people. I believe there are ways to help these people communicate and we need research to discover them. Don't forget us, and there are a lot of us who need to be a part of the research and planning.

Respondent 0224

Why is there a spectrum of ASD? What is the difference in the brains of the high and low-functioning? Find out what is missing and in the meantime, above all, do more research on the 20-50% of those most in need of help.

Respondent 0229

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

Respondent 0231

The IACC needs to be more inclusive of individuals across the autism spectrum. Autism is not one condition, and one size fits all does NOT apply.

Respondent 0235

Please do not forget those autistic people without a voice of their own! Nonverbal does not mean that someone has no feelings or worth. If you have a difficult time expressing yourself you need MORE help and research done for you, not less. Children grow into adults. More focus needs to be on what to do once someone hits their teens and twenties and beyond. Just because someone hits 22 does not mean that all hope should be lost. What works for the nonverbal adult with autism? The world will want to know this one day as more of these people present themselves.

Respondent 0236

There needs to be a very clear and loud message that autism is not just a childhood condition, it is lifelong, and the sooner we start thinking of providing support and services for the lifespan we will be able to move ahead! What research is being done can have a huge impact here!

Respondent 0237

Please research the connection between prenatal ultrasound and autism.

Respondent 0241

HELP US!!!!!!!!!!!!!!!!!!!!!!!!!! HELP THOSE WHO CAN NOT HELP THEMSELVES!!!!!

Respondent 0243

As a parent of two children with autism who are nonverbal and considered low-functioning, I would like to encourage the committee to support new research into this sub-population of ASD. Specifically, research is needed that would address communication deficits and that could lead to the development of effective interventions for low-communicating and low-functioning people with autism. In addition, I encourage the committee to support studies that are designed to include low-functioning people with autism.

Respondent 0244

No additional comments...

Respondent 0246

Address this now! Parents largely see regression after vaccines. Others with autism from birth - parents may have gotten vaccines, infections, dental mercury, etc... High neurotoxins Clean up our environment - no mercury, and make our vaccines safe. More vaccines is not the answer, nor is more pharmaceutical$ the an$wer

Respondent 0256

Research the work at http://www.liafoundation.com This link exits the Interagency Autism Coordinating Committee Web site it is top notch and the future of research in autism. Dedicate work to the nonverbal or those with limited verbal through augmentative devices etc.

Respondent 0257

Responses are on Section 1, 2 and apply to all sections. Key point: Optimal health and maintenance: Believe valuable to defragment medical care and at the same time make it more comprehensive; traditional plus alternative medicine with regular attention to nutrition and diet. Good for everyone, especially the autistic with a complex and sensitive immunological/medical profile. Research directions: CHROMOSOME 6. (SEE 2 -c; GI, autoimmunity, etc.)

Respondent 0264

I feel the IACC is in a pivotal position to encourage researching the relationship between prenatal ultrasound and autism spectrum disorder. Every lead must be vigorously pursued until we find what is causing this devastating condition. By taking the bold, necessary steps into new research directions, the IACC can lead the way in this vital endeavor.

Respondent 0268

None! The questions were difficult to understand and answer. I know that research into the spiritual giftedness, and telepathic like abilities needs to be explored. I can help!

Respondent 0269

In the past decade, there have been tremendous advances made with autism; however there has been nothing to help me understand why my beautiful young adult son has never been able to speak to me.........

Respondent 0270

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

Respondent 0279

Perhaps this is where I should have put my responses. Please review. Thanks.

Respondent 0280

You MUST start including nonverbal and low-communicating people with ASD in your research! We exist in great numbers, and studies need to start reflecting the ENTIRE autism spectrum, not just the "higher-functioning" individuals. PLEASE!

Respondent 0281

It is vitally important that we partner with individuals who are nonverbal yet successful in accessing AAC/FC to have a rich and included life. Communication is foundational to the success of any individual achieving the basic skill in life. There is TOO much emphasis being placed on becoming verbal. Too many young children are left silent in the hopes that verbal skills will develop. There is no reason that someone should remain silent and without communication. AAC/FC strategies actually assist in the development of verbal speech...and of course in the meantime allow individuals to participate in full inclusion activities such as education. There are NOT enough people who understand AAC/FC. Parents are not receiving the necessary information needed to support their nonverbal child's access to communication. This must become a priority.

Respondent 0293

Sadly, in spite of the huge gains that have been made in the past decade, our kids have not been benefited and there are still almost no interventions that work for our kids and no research to better understand the nonverbal and low-communicating population, their cognitive abilities, genetic characteristics, educational needs or to develop successful interventions. Perhaps most importantly this population needs communication interventions and at present there is no research being done in this area.

Respondent 0294

Thank you for the opportunity to submit replies. Please take it seriously. Maybe someone can reach my son better before I die. I'm now 75. Years of advocacy have found him a decent place to live. I have helped hundreds of people with autism find the best intervention in the area where I live; started a pre=school, etc. But I still don't know what my son Chris is thinking.

Respondent 0297

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

Respondent 0298

Please help those at the lowest end of the autism spectrum. Please include them in research. Families are desperate.

Respondent 0299

A considerable sized population of people with ASD is being overlooked by not devoting research money to the question of developing communication methods for nonverbal and people with limited verbal abilities. If these people could communicate, many behavioral problems that manifest themselves could be eliminated. Cognitive abilities that are now unknown could be discovered. It is time to put an emphasis on this population.

Respondent 0302

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

Respondent 0307

Tom Insel needs to step down. The IACC is not credible with him as the director. If you can't see the conflict of interest, then I'm sure you can't legitimately study the safety of vaccines and the correlation between the spike in autism and the amount of vaccines that are given to our innocent children.

Respondent 0309

I desperately want you to add more stakeholders to the IACC. You have people from government agencies all the way to Tom Insel who have no idea of what it is like to live with Autism Everyday, no disrespect meant. I would like to invite the members of the IACC to spend a day with my son, and live with "the Autism" we live with. If you don't live it, you will never feel the urgency that we feel. Dr Insel, you ended the IACC meeting early recently. It was even said that the people who were waiting to talk with you, should have been sitting in there and ready, when they were planning on a certain time. We CAN'T SIT and wait with our kids! You need to have a meeting where we do not have to submit our statement for approval; PUBLIC COMMENT should mean JUST THAT! A time that we the people can come and speak to you! Your decisions are directly impacting our present and future! We have a right to be represented, ALL OF US DO, not just the ones that agree with you!

Respondent 0310

Please don't disappoint us with a bureaucratic corrupt business as usual refusal to study of "vaccines, vaccine components and multiple vaccine administration in autism causation and severity through a variety of approaches including cell and animal studies and understanding whether and how certain subpopulations in humans may be more susceptible to adverse effects of vaccines." We deserve better. We are entitled to honest, well researched answers or else we will no longer be a captive market for your vaccines.

Respondent 0312

IACC is not reflective of the autism community. It is packed with bureaucrats with little to no experience with autism. The parents involved, other than Grossman and Redwood, represent no child but there own. Insel has fought real public member participation and IACC needs to require that public members represent real autism orgs with at least 1,000 members. Instead Insel has chosen friends and neighbors to represent the community. Far too many conflicts of interest.

Respondent 0315

Please include the importance of SPEED with all this. There are too many children out there without autism included insurance coverage, and no where to turn (except for very underfunded public school systems and counties) for interventions and therapies. ABA has helped my daughter incredibly, but I had to find it (her pediatrician STILL doesn't know what it is) and pay for it ourselves. WE NEED HELP! Thank you very much

Respondent 0316

Do a vaccinated versus unvaccinated study already! Do it right--by people without conflicts of interest. It's the only way this issue is going to go away. The parents who believe their children were vaccine damaged will not go away simply because the news stories on their televisions (in between pharmaceutical company commercials) tell them to. Oh and by the way-- '[redacted personally identifying information]' IS a valid email address...

Respondent 0318

I would urge the council to put forth effort into evaluating the RDI (Relationship Development Intervention) program. This developmental model works to remediate the core deficits of ASD. It's primary goal is quality of life for people with ASD. If you look at outcome studies for currently "proven effective" and "evidenced based" models of treatment, the prognosis is bleak. RDI is not targeting static skills, it is developing dynamic thinking...it is changing the brain! It is the only model that doesn't work around the autism or compensates for it. It working directly on the autism! I don't want to see research on ASD adults, I want to see them in fulfilling jobs and living independently and this can't happen until we take a look at what we have been doing in the field of ASD and how we are falling short when we have a better option available...RDI!

Respondent 0322

COMPREHENSIVE RESEARCH ON ENVIRONMENTAL CAUSES FOR AUTISM, INCLUDING FOOD SAFETY AND VACCINE SAFETY RESEARCH MUST BE UNDERTAKEN IMMEDIATELY. IF THOMAS INSEL CAN'T OR WON'T GET ON BOARD WITH THAT, HE SHOULD BE REMOVED FROM HIS POST AND REPLACED WITH SOMEONE WHO IS INTERESTED IN TRUTH IN SCIENCE.

Respondent 0323

Insel's personal conflict of interest - http://www.ageofautism.com/2009/08/when-vaccine-development-is-family-business-thomas-insels-conflicted-role-on-vaccines-and-autism.html This link exits the Interagency Autism Coordinating Committee Web site http://www.ageofautism.com/2009/08/senator-harkin-takes-on-tom-insel-at-autism-meeting.html (IACC Note: URL is not valid.) http://www.ageofautism.com/2009/08/the-really-big-lie-about-autism-thomas-insel-testifies.html?cid=6a00d8357f3f2969e20120a4f3ac63970b This link exits the Interagency Autism Coordinating Committee Web site

Respondent 0324

Overall, the plan targets many of the most important needs for individuals with ASD and their families. The results of the research should be of great value to states trying to develop cost-effective services in the community. My preference in terms of priorities is more money allocated to research that will help those now living with ASD.

Respondent 0325

We need research that gets away from the old and limited use programs of training for skills. While these programs are essential to help children learn functional daily living skills they are severely limited with regards to social/cognitive/communicative development that enables people to have a quality of life. Social, cognitive, and communicative development are intertwined and allow people to productively inhabit life in the real world. Specific skills do not help people with ASD develop the flexible thinking and adaptation that is required to live in the real world. So, if we are not to limit the outcomes of people with ASD to living in highly structured, protected and atypical environments (schools, sheltered workshops, family enclaves, etc.) we need to put more research effort into devising and studying how to help people with ASD develop these essential skills of dynamic processing and adaptation. RDI provides a starting point and a direction. Goodness, let's do it!

Respondent 0328

As long as Thomas Insel is involved with the IACC, inaction will continue, the true cause(s) of autism will be avoided, and the rate/incidence of autism will continue to increase. He must either resign or be removed from the IACC.

Respondent 0329

The IACC needs new leadership free from conflict. The vaccinated vs. unvaccinated study must be done by an impartial investigator or the questions surrounding vaccines and autism will never be answered.

Respondent 0334

Start including nonverbal and low-communicating people in research now!

Respondent 0335

I appreciate the efforts of the IACC to help autistics. The strategic plan and the process has been good so far. My wish is that this process is not sidetracked, especially by the vaccine question. I look forward to some real answers on questions that can be of direct benefit to autistics and their families. I appreciate that the IACC takes stakeholder input. However, it should remain that way: stakeholders should have input, not drive the process. Autism research needs to stay science oriented, not politically oriented. I would like to see greater representation from autistic adults on the IACC and subcommittees. I believe the various parent groups are represented well already.

Respondent 0340

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

Respondent 0341

http://www.ageofautism.com/2009/08/when-vaccine-development-is-family-business-thomas-insels-conflicted-role-on-vaccines-and-autism.html This link exits the Interagency Autism Coordinating Committee Web site

Respondent 0343

It needs to be as comprehensive as possible - and that should include a plan to compare vaccinated with non-vaccinated cohorts. (Not as difficult or unethical as characterized - there are a number of sources of children who have not been vaccinated, by choice of their parents, and their health care professionals.) This is a multi-faceted task, combining a genetic component with an environmental one. No stone should be left unturned in this research strategy. NO SACRED COWS.

Respondent 0345

I have a very affected 16 year-old daughter diagnosed 14 years ago. It is imperative that we increase our knowledge of what is happening to cause so many children to become sick who then receive a diagnosis of autism. The thousands of parents who have the same story, same child talking, same vaccines, same immune issues (rashes, allergies, GI issues, viruses, high heavy metal loads etc), then no language, bizarre behaviors, identical labs showing abnormal GI flora, bacteria, metals, viral titers, inflammatory markers - GI and brain affected. Psychiatry has a small role in research and treatment for these children so please instead include, immune, GI, environmental, and toxin, specialists.

Respondent 0347

Please research this devastating disease that not only affects the individual but the entire family. Do not forget the nonverbal group. The majority of people in this world think that autistic individuals are savants. Not everyone is a musician, artist etc.

Respondent 0349

Need study on vaccinated vs. unvaccinated children for once and all.

Respondent 0350

Parents are watching you. We are not happy with what you have accomplished so far. Are you willing to tackle some of the unpleasant truths, such as some children regress into what is being called autism after a group of vaccines? Will you try to find out why this is happening at such an alarming rate? Or are you simply buying time while "business as usual" continues on?

Respondent 0353

I am very disappointed so far with the priorities, which seem political and financial rather than science-based, and lack of interest in autism as a treatable medical condition. Science in theory should be objective, not defensive, and certainly not tied to political interests, but so far this plan does not seem so. You have a tremendous opportunity to save future generations of taxpayers billions of dollars in supporting the overwhelming numbers of disabled children, who will all one day be without parents, relying on government services and entitlements, by seriously and earnestly investigating the clear role of environmental triggers in developing such enormous numbers of new cases of autism. I am 40, and I assure you that 1:100 of my peers is not autistic, but misdiagnosed in childhood. There is a very real epidemic here, with 1:64 of the newest generation of children now diagnosed autistic (1:38 boys). There are not 1:38 autistic 40 year olds! Replace Insel, and reverse this trend.

Respondent 0354

FOCUS ON BRINGING SPEECH OR COMMUNICATION BACK TO OUR KIDS!!

Respondent 0356

I am happy that the plan includes studying sex differences. As a mom with a 14 year old daughter with autism, I desperately need that information. I feel strongly that much more attention needs to be made in the area of improving the capabilities of nonverbal adolescents and low verbal to communicate. I feel like after my daughter turned 7, most of the therapeutic world considered her a lost cause. Sub typing and discovering different types is vitals. So many families are wracked with guilt because their child was not capable of being mainstreamed. Parents are exhausted and spent. Frankly, in this economy some are losing their homes because they took out second mortgages to pay for treatments that were ineffective. Your work is vital. Don't leave out the most affected.

Respondent 0360

The IACC Strategic Plan for ASD Research is sorely lacking in a true desire to address the primary concern of most parents.

Respondent 0361

There is significant need to explore more understanding of developmental approaches for treating autism and to further clarify the often misrepresented and misunderstood body of research on behavioral interventions and to differentiate their benefits and shortfalls. PLEASE MAKE THIS A PRIORITY!!!!

Respondent 0363

All those with conflict of interest should resign. All those with any connection to pharmaceutical companies and vaccine manufacturers should resign. This committee should be sworn just as a jury. Open minded just like a jury. All avenues of research including Vaccinated vs. Unvaccinated study will make a difference. Autism is not a psychiatric disorder.

Respondent 0364

I am concerned about Mr. Insel's possible conflict of interests (family member who has participated in the development of a vaccine - Hib and financially benefited from such development) and believe that he should step down so that needed studies/research into areas such as vaccinated versus unvaccinated populations, the role of thimerosal/aluminum and other additives in vaccines as well as the effect of vaccines given in combination and the possible role they play in the cause of autism can be THOROUGHLY, INDEPENDENTLY and SPEEDILY studied/researched free from any possible conflicts of interests as the autism crisis demands.

Respondent 0366

Save money... test for food allergies and intolerances, candida, heavy metals, clostridia, vitamin and mineral deficiencies before you send kids for expensive ABA, speech, etc. Make parents accountable for feeding their children foods that are not poisonous to their body. These simple things will change a generation and save a fortune in unnecessary treatments.

Respondent 0367

Insel needs to remove himself from the committee. He has his own agenda and is not following the dictates of the Combating Autism Act.

Respondent 0368

I would like to see more parent members on the IACC panel. We are the people who walk the walk and we know where we need to go to find answers. I don't want to see scientists on the panel who haven't actually worked with or treated autistic children or adults. If they don't have actual hands on experience with autism, then they really don't know what they're talking about. I would like to see Dr. Tom Insel resign. I was appalled when he recently ended a meeting a couple of hours early, denying several parents who had brought (at their own expense) their autistic children to testify before the board. The children and their parents were not in the room at the time, because it was not their appointed time to speak. Autistic children cannot sit quietly for several hours on the off chance that other business might wrap up early. His behavior showed an extraordinary lack of sensitivity and a total ignorance of what living with autism is actually like.

Respondent 0369

These are the comments of Dr. Robert A. Rubin statistician/researcher. My wife Rita Rubin submitted her comments earlier, and I was thereafter not able to create a new profile to submit my comments, which are included here under her profile. Can you do something to fix this problem? We are each entitled to make separate comments under our own names

Respondent 0372

As the people charged with the task at improving the lives of children with ASD and their families, we must word towards exploring and understanding more developmental approaches for treating autism and to further clarify the often misrepresented and misunderstood body of research on behavioral interventions and to differentiate their benefits and shortfalls. Too often behavioral interventions are subscribed when it is not developmentally appropriate, cost-effective, or time permitting for the family. PLEASE MAKE THIS A PRIORITY!!!!

Respondent 0373

Dr. Tom Insel has proved over and over again to be very biased about environmental factors affecting genetic risks for autism. Countless family members who live with their loved ones with autism have witnessed terrible regression, because their children fell ill following vaccination. We need to have our concerns addressed by proper research as directed by Congress in the Combating Autism Act. Dr. Insel continues to block and evade all requests for this research. The Combating Autism Act was made possible by family members tirelessly advocating and lobbying, while caring for their loved ones' high needs. It is also very disheartening that my government refuses to call this autism crisis an epidemic and has not published recent numbers since the old "1 in 150".

Respondent 0374

My son Charlie's struggles are numerous (he is minimally verbal, has numerous challenges in his academic learning---he is not yet able to read---and has a history of severe behavior issues). In a previous generation, I think it sadly likely that Charlie would have been removed from his family and institutionalized. Charlie has been able to live with my husband, James T. Fisher, and me and to be a part of the community chiefly because we now know so much more about educating an autistic child, and because we now know so much more about autism. In closing, and on behalf of my son Charlie and my husband Jim, I wish to thank the IACC for providing the opportunity for the public to provide input. And once again, I ask the members of the IACC to keep the "human rights, dignity, and quality of life of people with ASD" always in mind.

Respondent 0375

The time is now. Don't let one more nonverbal person go without research into this subject. Please help them be the people that their parents believe that they are and can become.

Respondent 0376

As long as Tom Insel remains in charge, NOTHING will get accomplished. Perhaps that is what the government wants to happen. HUGE CONFLICT OF INTEREST.

Respondent 0377

I call for the resignation of Thomas Insel because of his violation of federal meeting protocol by "re-voting" for the funding to research a vaccinated/unvaccinated study. This was outrageous! Now I find out that his family is in the vaccine business--a blatant conflict of interest. He does NOT have children's best interest in mind!!

Respondent 0379

I'm appalled at the way by which the original IACC Committee recommendations were removed from the agenda, and those items, decided on by those with the knowledge necessary and with a stake in the outcome, should be returned to the agenda. Especially, the vaccinated/unvaccinated study.

Respondent 0385

As a parent of an amazing 5-year old son with ASD, it's encouraging that a plan of this scope and magnitude is being put together. Thank you from the bottom of my heart. I hope in my comments I've been able to emphasize a few points: 1.) Please look at treatment options like RDI (Relationship Development Intervention) that focus on quality of life outcomes and not IQ-based results. This is such an important distinction. 2.) Focus as much resources on treatment as a cure. While a cure is important, as a parent, if Autism is cured tomorrow, I'll be ecstatic but it still won't help my son or make his life easier. 3.) Raise the minimum requirements for therapists, increasing their required hours and time spent with kids. 4.) More teamwork between agencies that focusing on helping the parents pick a treatment option. 5.) Immediate funding that lets ASDs be treated at the time of diagnosis so that the best outcome can be achieved.

Respondent 0386

I did not have the time to fill out the complete form. However, my message is this: PLEASE we need research into communication needs of nonverbal individuals. Thank you.

Respondent 0390

We need a broad conceptual frame of social, emotional and intellectual development that guides our research and our intervention. Reinforcing behavior that is considered appropriate in a particular context is too narrowly construed. We need to begin by being clear what our children are at risk for in the long term, and build our research and intervention around the challenges in reciprocity of communication and interaction, and in flexibility and thinking that are at the core of the disorder. From infancy through childhood and into adulthood, we cannot lose sight of the goal to help with relating, communicating, and thinking. We need to learn much more about individual differences and how we can tailor our interventions so that each child has the chance to have warm personal connections and satisfying lives.

Respondent 0391

Unvaccinated cohort MUST BE COMPARED to vaccinated cohort.

Respondent 0399

Fire Insel!!! I want Bernadine Healy.

Respondent 0403

Thank you for finally looking into everything associated with our children. I look forward to the answers within your research.

Respondent 0406

Tom Insel needs to resign. He has an undisclosed Conflict of Interest that could be biasing his point of view and the direction of his suggestions for research.

Respondent 0408

You need more public members on the IACC who are interested in TAKING ACTION instead of sitting in planning meetings (or cutting short the meetings so they don't have to sit there and think about depressing things anymore.) At the risk of sounding offensive, PLEASE stop sitting on your [profane language redacted] and DO SOMETHING! We, as parents of autistic children, have turned our lives upside down so that we can help our children as well as prevent other children from becoming victims as well. Please don't make us the only ones who seem to give a [profane language redacted].

Respondent 0409

Please, I beg you, do not overlook the nonverbal or low-communicating individual. They deserve our best. They are whole. They are capable. Why are we not addressing them? They make up 50% of the autism population. Given researched interventions, we could create a future for this population. Please.

Respondent 0412

We need to include nonverbal and low-communicating people, such as my autistic godson-nephew, in the research NOW!!!

Respondent 0416

Please get the research funded and underway!

Respondent 0420

Get some objective people that have no ties to the pharmaceutical industry to look at autism. Try and allow observation into your science. Why are mother's not credible enough when describing their children? A mother takes away milk and bread and tells a doctor that they seem better and this is not enough. This will hold everything back but then again I feel like it's all purposely being held up because it's not convenient for the government. Many of you are old enough that you'll be dead when your predecessors have to worry about the million of autistic adults that you will be dealing with in twenty years. It's easy for you to turn your heads. I feel like I have to keep fighting for all the children that will be born into it because the government can't admit it's wrong. It's hard to be nice when I'm thinking about the poor mother that does not have the time to write to you today because she's cleaning feces off the wall from her child that acts like a wild animal.

Respondent 0421

All biased members need to resign so we can get some real research done. Enough is enough. Parents are tired of waiting, our children are here now...

Respondent 0426

I do wish that the IACC would spend the most CAA money on the question of what is making these people sick. As important as all the other questions are, they are all secondary to the question of what is the disease. Of course it important to learn to hop on one foot when you have glass in the other, but it would be a lot simpler to just remove the shard of glass.

Respondent 0427

We need help. The autism community needs help. This is our lives, we live it every day. I want Seth to receive more ABA treatment, but cannot afford it. It is $40.00 an hr. That may not seem a lot to some, but it's a lot to us. These kids are suffering. As a parent, I'm stressed, always trying to find therapies that will work for Seth. Medicaid, won't pay for anything, besides speech therapy and occupational therapy. Speech therapy and occupational therapy never worked for Seth. What is 30 minutes once a week going to do? Seth was talking, socializing, eating, no frustration before he got the 15 month shot. I look at my videos all the time. I never gave my 2 younger kids all of their shots. Please get our kids help, I don't have time to waste.

Respondent 0429

Conflicts of interest among IACC members must be addressed. Dr. Insel has said the IACC should not investigate the role of vaccines in autism, because its parent organization, HHS, is facing claims in vaccine court. Members of HHS should recuse themselves from decisions regarding the study of vaccines and autism.

Respondent 0430

What is happening in autism is happening on your watch. History is not going to be kind to those who choose to turn a deaf ear or blind eye to the anecdotal stories that parents are sharing. The truth is going to come out even if it has to come from research that parents fund. To get answers in this manner instead of from studies that the IACC Strategic Plan implement will be an embarrassment. It is up to the committee. The ball is in your court at the moment but it will not stay there if you continue to make up the game rules as you go.

Respondent 0436

We need to increase funding.

Respondent 0439

I must express my extreme disappointment in Dr. Insel's performance to date. His removal of the already agreed upon vaccinated vs. unvaccinated study, his lack of knowledge regarding the growing, available population of children who have chosen not to vaccinate and his continual lack of urgency in any of his comments or messages regarding this startling epidemic of children with autism. The statistics currently reflect a figure of 1 in 100 children or 1 in 38 boys! That statistic is terrifying. It needs to be addressed as an emergency. Dr. Insel has failed to represent myself, my child or the other thousands affected by autism. I believe his resignation is in order.

Respondent 0440

I do not understand the difference between questions A and B for each section. Perhaps a clearer phrasing could be devised. It is imperative that all disability policy address the concerns of the people who the policy directly affects. I am heartened to see that the IACC targets autistic individuals for feedback, and I hope that our contributions during this public feedback will be given substantial consideration in the decision-making process even if we are numerically underrepresented among the responses.

Respondent 0442

I am happy to speak with anyone from the IACC about my son and what we have done to help him. Regardless of the cause of autism, helping children and families currently struggling to deal with the care and future of ASD children needs to be a higher priority. Prevention is important but we need to educate the AAP and pediatricians across the country that autism has a physical injury component that can be healed. Just like mending a broken arm or giving an antibiotic for bronchitis, prescribing a course of physical treatments (diets, supplements, gastro disease treatment etc.) can make a difference and help these families. The IACC owes just as much of an obligation to families already suffering than it does to prevent new autistic cases. Don't be afraid to increase education to doctors because of the vaccine controversy. Healing should be the #1 priority, not covering up for past sins.

Respondent 0443

Tom Insel needs to resign. His conflicts of interest make him a bad choice for IACC.

Respondent 0445

research education and early intervention combined with assistance with money for these families

Respondent 0446

I found this form very confusing, so I will sum up my comments again here. Please put vaccinated vs. unvaccinated populations comparative health outcomes study back on the docket. There are pockets of unvaccinated children already in this country (Christian Scientists, Amish, home schooled, natural health families, etc). The government knows who each and everyone one of these children is and why he or she is not vaccinated because the parents have to file a vaccine exemption form with their local health department. There needs to be more job training programs for teens and young adults with autism. Since CAA is about curing autism why is it the only member of IACC that has Autism, Stephen Shore, opposes a cure. Please also add to the panel someone living with Autism who finds living with this condition a struggle and therefore supports a cure.

Respondent 0449

It needs to focus on the individual and the families and realize that just like Autism is a Spectrum, how you deal with it, address it, live with it, reject it, embrace it is a Spectrum and one size does not fit all...

Respondent 0452

So much of the research out there involves children with autism and how to "get through the school years" which is why I feel ABA has such a stronghold on the treatment standards but more and more families are choosing to home school because they want "real life" opportunities to address the core deficits of autism that will prevent their children from being independent and having fulfilling careers and friendships as adults. Please research quality of life as an adult in the real world which is very different from "life at school", not just how kids can be mainstreamed with typical peers when they are young.

Respondent 0454

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

Respondent 0455

The NIH should step back and evaluate its approach to solving these problems.

Respondent 0461

Please do not take out the vaccine vs. autism research. Biomedical research needs to be done.

Respondent 0466

Listen to the parents. We live this every day and want to be part of the solution. Don't shut us out please.

Respondent 0472

The IACC is considering autism under the medical model of disability, considering autism a "disorder" in need of repair. This is an inaccurate and incomplete way of looking at autism. Instead, I urge the IACC to consider autism as a legitimate way of being. We should not be characterized as an epidemic or social crisis, but rather a group of people which is underprivileged in society because of our disability--like members of other disability groups, or other minority groups. This is the framework with which should be examining autism, rather than the medicalized framework which the IACC unfortunately used in the construction of this plan. I strongly urge the IACC to include more autistic people in the construction of its plans. Perhaps then we will see the IACC asking more questions of greater relevance and urgency to autistic people.

Respondent 0474

The New England Center for Children (NECC) appreciates the opportunity to respond to this RFI and have a voice in the decision-making processes of the IACC. As a school that has served individuals diagnosed with autism and related disorders for over 30 years, the Strategic Plan is of great interest to NECC. We hope that our comments will be found to be useful to the IACC. We have been encouraged by the work done by the IACC thus far and we hope that the committee continues to be receptive to feedback provided by schools, educators, and clinicians.

Respondent 0476

Our experiences working with adults with the NEUROLOGICAL CONDITION THAT CAN AND DOES RESULT IN AUTISM, indicate that IF enough of the SPRATS of an individual with the condition are observed, appropriately studied and understood on their own AND as to their interaction with the individual's real LIFE NEEDS, that with APPROPRIATE recognition, encouragement, and experiential-education, and confidence, there WILL be HIGHLY INFORMATIVE, HIGHLY USEFUL, and HIGHLY MARKETABLE PATTERNS THAT EMERGE. Note: I did not enter the \\ characters floating...I tried to remove them twice.

Respondent 0477

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

Respondent 0481

In general, I am pleased to see a higher priority being placed on longitudinal studies, participatory research, and services and supports. I think it is past time for the vaccine issue to meet a much overdue demise, and there should be less emphasis on causation in general. While some of the language was more respectful toward the Autistic population than in past years, there is still room for improvement.

Respondent 0484

Societal devaluation and other dynamics exert a centrifugal force that moves people with autism spectrum disorders out towards greater and greater vulnerability, and even to the edge of survival. People with autism are at best socially marginalized but more often profoundly devalued. Life-wasting of people with autism spectrum disorders must be countered by helping the acquisition of vital, life-sustaining skills. Social role valorization and positive role enhancement exert a centripetal force that moves people with autism spectrum disorders in towards greater social value and status. History records the human paradigm maturing contributions of many considered to have autism spectrum disorders, yet numbered among the valued core of society. Social integration of, and the enhancement of the competencies of, current, and future, people with autism spectrum disorders will greaten the likelihood of contributors to society of the caliber of these historical role models.

Respondent 0485

Dr. Insel, you are a distraction to the cause of combating autism. Resign and let the IACC move forward without the weight of your encumbrance

Respondent 0488

Please look at parent mediated, relationship based interventions (RDI, Hanen). As a practitioner, I see the most meaningful improvements in reduction of family stress, parental sense of their own competence, pleasure in child/parent relationships, increased child motivation to interact as well as increased child independence in activities of daily living in these types of interventions. With the exception of improvement in the activities of daily living, I rarely see these outcomes in my patients who are being treated with intensive behavior programs.

Respondent 0492

You should revise your comment form to make it easier to comment.

Respondent 0493

Parents should lead the way not Dr. Like Insel with conflicts of interest. Study the children not large scale studies that are easily altered and invite a toxicologist. VACCINATED vs. UNVACCINATED TOTAL HEALTH OUTCOME it's being done without you you just don't want to publish that unvaccinated groups don't have autism, less asthma, less hospital visits. It is an unfortunate truth that this population is healthier that doesn't feed the medical or drug system but aren't they rich enough already? They seem to have bought enough people in Government agencies to have allowed this tragedy to continue completely unchecked and will continue to do so is my fear. Hope all of you can sleep at night these families can't but we'll just give them a pill or vaccine for that.

Respondent 0494

Do you want me to shut up about vaccines??? You can do it by budgeting for unbiased vaccine studies that lack conflicts of interest. Prove us wrong and we will move on to other possible sources. Remember, most of us are not anti-vaccine, but we can not support the current schedule and amounts of vaccines that are recommended. Please let us put this issue to rest or give it the attention it needs (based on future unbiased studies.) We need answers now!!!

Respondent 0500

The effectiveness of the IACC is compromised by conflicts of interest and political issues. There are too many people on the board with ties to pharmaceutical corporations, the pharmaceutical lobby, and the insurance lobby. There is too little representation from parents of children with ASD or groups that criticize the above.

Respondent 0501

Focus on autistic people and how to make their lives better, not on autism spectrum disorder and how to treat it. The language and approach matters a lot. Most of the language used in your statements and this questionnaire are de-humanizing! People with autism are people, not a disease. How do you expect to foster inclusion and acceptance when you're talking about them like they're broken and need to be fixed or prevented?

Respondent 0505

The coming wave of h1n1 vaccinations with untested vaccines including untested and known-to-be-dangerous adjuvants will unfortunately provide new opportunities to study ASD. If we continue to study ASD the way we have, we will guarantee further stagnation in meaningful research, further distrust in the government health agencies and vaccination plan, and further decline in birthrate. We will soon be approaching one million ASD children. Our health care system and our society will collapse in a tumble reminiscent of an apocalyptic zombie movie as couples begin declining to run the risk of having children at all.

Respondent 0507

Helen McNabb

Research would best suit the needs of all persons with ASD by allowing those with the most experience – the adults with ASD and their parents' – to be heard and gather their critical information. Further research is needed in the following areas: 1) number of students graduating from high school with a diploma vs. certificate and why; 2) number of adults with ASD suffering from depression/anxiety, 3) Sensory issues: tolerance/intolerance to the five senses, 4) ASD & Memory Deficits, 5) number of Adults with ASD and Math Disabilities, 6) The study of preemies (under 2 pounds) not being diagnosed with ASD until years later due to not meeting their milestones. 7) number of preemies born during 1980-present who were diagnosed with ASD and when they were diagnosed, 8) the difference between language processing disorders and ASD.

Respondent 0508

Find ways to include people that are nonverbal in your studies.

Respondent 0509

It is absolutely terrible that vaccine research deleted from the IACC Strategic plan!!!!!!!!!!!!

Respondent 0510

PLEASE validate and research our concerns! Quench our children's DESPERATE thirst for services, education, and equality!! EDUCATE our Communities, our children are discriminated against by our NEIGHBORS, our FRIENDS, our FAMILIES, our SCHOOLS and their PEERS-we need an initiative against discrimination and to promote education and understanding!!!!! This IS an epidemic and NO family is IMMUNE!!!!

Respondent 0512

It is time to stop beating the dead horse of blaming autism solely on genetics. I am sure they do play a part but there is mounting evidence that something in our environment is triggering this in our children. The time is past for vaccines to be left out of the research. They NEED to be studied as well as pesticides. Children are the ones susceptible to developing autism and one of the major toxic exposures in childhood is from vaccine adjuvants. We need honest research and honest answers that are not paid for or swayed by the pharmaceutical industry. Please consider us (the families of children with autism). WE are the voices for those who can not ask this of you themselves. Thank you.

Respondent 0514

PLEASE DO US A FAVOR - Everyone on the committee that does NOT have an immediate family member with Autism - RESIGN. I've viewed the committee hearing and everyone withOUT autism in the family has the WRONG PRIORITIES. ABSOLUTELY THE WRONG PRIORITIES. Research ischemic and environment events only. Do the vaccinated vs. unvaccinated study as a start.

Respondent 0519

Integration of causation, recovery and prevention in mission/vision statements. Add recovery statement stating its possibility in cross-cutting themes. Update autism as a current national health emergency, not an "emerging" emergency in the introduction. Incorporate additional public participation via a DOD CDMRP model and Autism Advisory Board. Include environmental factor/toxic load screening in early detection. Justify increased research budget based on "cost of disease" model and opportunities to perform high-quality research.

Respondent 0520

We have two Autistic sons and they have both made incredible progress through the RDI treatment. The problem is it costs families money, because at this time it is not covered by the Autism Waiver the Disability Bureau, or Insurance companies. This is a shame because all autistic children should have access to this treatment.

Respondent 0521

Please attend to the needs of low and nonverbal people with autism. The best "evidence based method ABA did not help our son make the gains that Rapid Prompting Method (RPM) has. Measures of IQ with such verbal biases have unnecessarily narrowed the options for our low and nonverbal children. Please make a bold shift in this unfortunate pattern and study these subtypes of autism in a fresh and fair manner

Respondent 0524

Obviously I am an advocate of neurodiversity. While I believe that I differ politically from your organization in many respects, I also know that we all care about improving the quality of human life. I hope that you will consider the input of autistic individuals as you define for yourselves and for society what a well lived, valuable life is. It is possible to help someone to develop strategies for living in the world AND to accept that person's autism at the same time. Thank you for your consideration.

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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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