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Strategic Plan Question 6: What Does the Future Hold?

Respondent 0013

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

a. Gaps and underrepresented research areas.
My son with ASD is now 46 years old. I have now spent more than half my life working to try to understand and work with his cognitive impairments. I even returned to school and earned a PhD in biochemistry. Why are my efforts to discuss what I have learned over more than 40 years so disregarded? Trying to suggest ideas to the IACC has been like trying to talk to a stone wall. I would appreciate seeing the IACC discuss not only pre- and post-natal problems, but birth itself. This seems to be more of a taboo subject than vaccinations. Obstetric protocols have become more invasive over the same two decade period that autism prevalence has increased. Most important is the evidence (also disregarded) that the auditory system of the brain is injured by asphyxia at birth, which most likely impairs language development.

b. New opportunities.
My first two sons and I participated in the Collaborative Perinatal Study (CPS) which was to have been a prospective study of perinatal health and outcomes. The National Children's Study looks like a re-invention of this idea. The IACC should try to find the data collected in the CPS and find children who developed autism, and try to locate these individuals now. If these data are now thought to be out of date, why is there such a clamor for prospective versus retrospective studies? Then do retrospective studies. I have worked for nearly 18 years at Bridgewater State Hospital in Massachusetts, and in 1994 I applied for a grant to obtain and study developmental records of our patients. I have just proposed to MHM Services (current holder of the contract) that we apply for research grant funding, also to help increase nursing staff and observations of care givers like nurses in the patient milieu may provide more insight than researchers working in ivory-tower laboratories.

c. Research priorities.
We need actuarial scientists, from private insurance companies as well as Social Security to do some down-to-earth research on why autism and all developmental disabilities are on the rise (including problems like kernicterus). We can't just keep appealing to legislators, who more often than not pull out empty pockets and chide us about the duty of family. The basis of a capitalistic society is that All men are created equal and clearly this is no longer true in this polluted world, where medical care is based on invasive and unnatural procedures and pharmaceutical poisons.

Respondent 0016

a. Gaps and underrepresented research areas.
Microboards are based in self determination and person centered planning. People with autism dont need cookie cutter service plans. they need TRUE person centered planning because of their high level uniqueness and interests. Again, not complicated. It requires time and care. People help people have a good life, not policies and procedures.

b. New opportunities.
Connect people through microboards and human service cooperatives. Isolation and lonlieness NOT autism is the most disabling condition.

c. Research priorities.
communication microboards family support

Respondent 0022

a. Gaps and underrepresented research areas.
Death rates in the wonderful new for profit foster care homes that have replaced other options. There is some suggestions that the vulnerable die earlier in this system but none know.

b. New opportunities.
Meaningful community integration programs need to be piloted and then applied.

c. Research priorities.
Why do research if there is then nothing done as a result?

Respondent 0023

John Best
Hating Autism blog

a. Gaps and underrepresented research areas.
You should check the families of all drug company employees for the APO-E4 protein, politicians and yourselves too. Give the flu shots with thimerosal and squalene to any pregnant people who belong to these groups and see if their babies are born with brain damage. Then you can experience what we already know first-hand and you might stop acting like imbeciles.

Respondent 0024

a. Gaps and underrepresented research areas.
The future requires both research into causes and providing services for those in need.

c. Research priorities.
Our resources must be balanced between finding a cause/cure with serving people in need right now.

Respondent 0029

a. Gaps and underrepresented research areas.
What are the long term effects and adverse complications of Risperdal? How many adolescents and adults with autism are on antipsychotics and other psychoactive medications? Do antipsychotics have a benefit for long term use? How is mental illness diagnosed in autism?

c. Research priorities.
An alarming percent of people with autism are being put on psychoactive medications with little study on the impact (like the real possibility we may be creating a generation of adults with autism and diabetes). This will create huge service delivery problems where we will need homes and services that can manage both complex behavioral and medical problems.

Respondent 0031

a. Gaps and underrepresented research areas.
The future is bleak unless something changes and care is provided to adults with ASD.

Respondent 0035

a. Gaps and underrepresented research areas.
I don't know.

b. New opportunities.
I don't know.

c. Research priorities.
I don't know.

Respondent 0037

a. Gaps and underrepresented research areas.
My biggest fear is that you people will do nothing and if your previous meetings and agenda are an example of what we are to expect that is what is going to happen [profane language redacted] NOTHING.

Respondent 0042

a. Gaps and underrepresented research areas.
Adults with autism are not being represented here. Their future is already here. Why are we only focusing on children?

b. New opportunities.
Get out there and talk to adults with autism. They are living my children's future. I want their knowledge to be included in this.

Respondent 0046

a. Gaps and underrepresented research areas.
Medicaid Waiver State reciprocity is underrepresented.

b. New opportunities.
Many families are not aware that they can access assistance through a Medicaid Waiver.

c. Research priorities.
Again, State reciprocity for Medicaid Waivers to promote streamling services.

Respondent 0047

a. Gaps and underrepresented research areas.
See above.

b. New opportunities.
See above.

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

Respondent 0049

a. Gaps and underrepresented research areas.
Autism in the workforce. Individuals on the Spectrum need to be trained to their strengths and the MENTORED. They need to have steady contact with individuals who can help them conduct employment interviews, socialize with coworkers and managers, conduct meetings, make presentations.

b. New opportunities.
ASD individuals tend to excel at solitary, analytical occupations. They often have very valuable insights when it comes to innovation, troubleshooting and testing. Employers in engineering, technical, IT, medical and architectural fields need to cultivate these individuals at a young age, encourage ASD students to apply for internships, summer work programs, and foster ongoing, supportive relationships between employees and the students.

Respondent 0052

a. Gaps and underrepresented research areas.
*How Do You Determine When Someone with ASD has gone as far as they can? and what are the options if they can not reach a level of functionality that we would accept as "normal"? *Social education- How do we teach them how to interact with other people and behave(at least in public)in an appropriate manner? *Vocational education- How do we teach them to use the gifts that they have to become contributing members of society? *Independence- How do we help them to transition from being a dependent kid who has most things done for them to an independent citizen who can do it for themselves?

b. New opportunities.
More effort should be given to determine what they can do rather than focusing on what they seem unable to achieve. Perhaps more research should be done with adults on the spectrum to see what was most effective for them and what things they believe should be encouraged.

c. Research priorities.
ASD is the fastest growing disability in the world and so we have more and more ASD kids becoming adults all the time. We need to figure out what strategies can be used to help them join the community at large in a positive way.

Respondent 0054

a. Gaps and underrepresented research areas.
Adult outcomes of autistics should be published and the true prognosis for adults should be publicized. It certainly is not good and this should be known for people who want to review the efficacy of certain treatments and fund certain types of research and lobby for federal funding of IDEA.

b. New opportunities.
same as above.

c. Research priorities.
same as above.

Respondent 0055

a. Gaps and underrepresented research areas.
The good news is that all these kids stand to live much longer than they would have done in the past. The bad news is we don't know how to find them work, housing or social lives, and we continue to view their difficulties as their disability rather than address the functional deficit. Whatever condition a person has, they need an income and a home and a family of some kind.

b. New opportunities.
The recession is affording an opportunity to rethink old service delivery models and to focus more closely on the individual. Technology will allow us to do the same by providing more granular and frequent information about the individual, monitoring their care more closely while affording them more independence.

c. Research priorities.
Find out how many older adults have what would now be termed ASD but which was diagnosed as something else when they entered the system. (no one's diagnosis ever changes).

Respondent 0057

a. Gaps and underrepresented research areas.
housing, meaningful recreation and community interaction and vocational opportunities more often are lacking than available. Research already validates that most adults with disabilities live at poverty level. Parents need more assistance in creatively assuring their children's futures rather than relying on social security benefits and failing state support.

b. New opportunities.
see above

c. Research priorities.
see above

Respondent 0059

a. Gaps and underrepresented research areas.
The future looks like 1:30 boys if we don't get Tom Insel out and some one honest in. Tom Insel can live off the money his brother earned from Hib vaccine.

b. New opportunities.
* Take a good long hard honest look at vaccines as the cause. * Performing titers and seeing who is immune and needs no more boosters. What are the best treatments (that does not mean no treatment) that is how the doctors act now. Even if you have a child with acid reflux, oxygen issues, inflammatory issues, autoimmune issues. More opportunities would be offered these children if Tom Insel left and some one honest replaced him.

c. Research priorities.
I see most of the United States brain power taken away from us because of Autism. My husband was an engineer, but his autistic son will not be. Tom Insel these injured children are not going to have some big science or research, or engineer job, but just not a big social job. These injuries have taken their intelligence away from them and their job options are called sheltered workshops! Getting rid of Tom Insel and replacing him with some one not connected to the vaccine industry like his brother Richard Insel is what I want to see in the future.

Respondent 0060

a. Gaps and underrepresented research areas.
The budget allotted for the development and availability of merged/linked databases for tracking involvement of ASD people should be increased and inclusive of ARI/DAN clinical data.

b. New opportunities.
Due to the numerous interventions currently utilized in the treatment of ASD, clinical trials on efficacy and cost-effectiveness of interventions, services and support to optimize daily functioning should be increased from 2 trials to 5.

Respondent 0063

a. Gaps and underrepresented research areas.
Our public schools are failing to help even Asperger's kids. Their goal is to "make him look like all the other kids" which is laughable. They run on a reactive rather than proactive mode. They won't help unless the child is severely failing--at what permanent cost to the child? Our kids are invisible and they want to keep them that way. They will sacrifice our children's potential to avoid dealing with it. IDEA is a joke. IEP's and the so-called "team" often does not truly include parents or even their doctors. It is appalling that in the United States so many schools are run by people who have no interest in learning. How do we help our children realize their fullest potential in this environment?

Respondent 0074

a. Gaps and underrepresented research areas.
God help us. I don't know what will happen to my son if I die.

Respondent 0075

a. Gaps and underrepresented research areas.
IF the blindly naive treatments of misunderstood behavior displayed by frustrated, apprehensive, and worn down children, is reversed, the enlightened future holds many solutions to current nagging problems. The enlightened future also holds promise of converting much of the waste of currently taught-defective consumers, into positive tax payers. Ominously, the unenlightened future holds HUGE COSTS AND WASTED LIVES, if the naivety of traditional treatments based only on said children is continued.

b. New opportunities.
see VI c

c. Research priorities.
The SPRATS series, a dual hierarchy is a way to realize the personality of a person with the condition fostering autism or ANY other personality WITHOUT historical assumption and bias. 1. The mind's use-and-need of the body's neurological systems in order to relate to its environment and to think. 2. What makes a personality, combined with the minds use and need of body systems. In order to survive and to function optimally, ANY individual's LIFE NEEDS are required in first things first order. The R-W-N-S-eHa-UA-eHoE-ESaC-IdF-aHa-DHoE-EBI series, is a hierarchy of LIFE NEEDS, closely fitting a neurological condition associated with autism. Both series combine into an inclusive hierarchy of use/ need for an individual to have a LIFE, NOT A LIFE SENTENCE. IF the full combination is not complete and working well, in order, any small glitch is likely to become an illustration of cubically reentrant Mobius paths, A TANGLED SPAGHETTI BOWL, TWISTED AROUND, UPSIDE DOWN & INSIDE OUT.

Respondent 0077

a. Gaps and underrepresented research areas.
Long term studies into autistic adults, especially as they age, and examine whether or not they are more or less likely to suffer from other aging related illnesses. How do we encourage persons on the spectrum (who can handle it) to seek access to higher education. I myself hold a master's degree, yet I was shocked to hear that many of the aspies whom I met essentially believed that they were incapable of the challenges. Did they make that judgment, or did others in the educational system make that for them? Employment issues. Too often persons with high functioning Autism Spectrum Disorders are unemployed or underemployed. What is the best way for employers take advantage of their strengths and weaknesses, and contribute to the economy and society at large? For those auties who rely on family member caretakers what are the best ways for them to deal with life's inevitable changes, especially in the wake of the death of a loved one?

b. New opportunities.
I'm not certain. AAGW (http://aagw.net This link exits the Interagency Autism Coordinating Committee Web site) has many high functioning adults, many of whom are in their twenties, who may be willing to participate in such studies.

c. Research priorities.
#1. Understanding the effects of aging and autism. #2. Education. #3. Employment. #4. Family life. #5. Death of caretakers.

Respondent 0095

a. Gaps and underrepresented research areas.
A growing population of young people and adults who will need lots of different kinds of social services....are we ready?

Respondent 0102

a. Gaps and underrepresented research areas.
If the government continues to deny the relationship between vaccines and autism - more of the same. More autism, more lives destroyed, more financial ruin.

Respondent 0105

a. Gaps and underrepresented research areas.
The trend for ASD is on the increase, giving rise to more anticipated problems and highlighting the need to services to be put in place. Time is pressing, money is limited. Funding research is not the only solution. Every dollar spent on research and/or services, must be fully justified, in terms of the outcome and impact on persons with ASD. Every single drop of blood given by the persons with ASD for research purposes, must be fully justified and worthwhile. Education of researchers, educators, judges, police officers, and the population in general, is mandatory and urgent.

b. New opportunities.
Education of the population on autism is an imperative task in order to eliminate the stigma and to improve their lives. As the ignorance about autism, even among the medical community, sometimes is frightening, scaring and unbelievable, any educational effort at school, college and university level, as well as in the communities is absolutely necessary. If not, the Rain Man would remain the main picture of autism, and Hollywood the main educator. Thanks to the continuous efforts and struggle from the different autism societies, the world of ASD persons is much improved nowadays. But this is not enough. Much more must be done urgently at national level.

c. Research priorities.
Although there are some scientific papers related to the above proposed research topics, more accurate research and scientific work needs to be done for valid conclusions to be drawn.

Respondent 0125

a. Gaps and underrepresented research areas.
I do not find this a very helpful line of inquiry.

Respondent 0131

a. Gaps and underrepresented research areas.
Research devoted to examining the content as well as frequency, duration and intensity of treatment programs and how changes in these aspects of treatment best support adult functioning. Examining changes in these aspects of treatment may lead to more information that addresses transitional needs of individuals with ASD.

b. New opportunities.
No comment.

c. Research priorities.
Conduct at least two clinical trials to test the efficacy and cost effectiveness of interventions, services and supports to optimize daily functioning (e.g., educational, vocational, recreational and social experiences) for adolescents, adults or seniors living with ASD by 2012. ASHA believes that this contributes to the goal of examining efficacy and effectiveness of treatment that is foundational to other research initiatives and should include not only content of interventions, services and supports but also examine frequency, duration and intensity issues.

Respondent 0133

a. Gaps and underrepresented research areas.
The future hinges upon the answers to some basic questions that haven't been answered because of the political football ASD has become.

Respondent 0140

a. Gaps and underrepresented research areas.
-The focus should not be genetics but epigenetics and environmental prenatal AND postnatal exposures. - The development of non- aggressive specific testing for specific problems in ASD - the research on the ASD subgroups in terms of biology, metabolism, biochemistry, immune, endocrinological and HPA system -The research on the impact of placebo effects in drugs used to control behavior and on the secondary effects of them -The impact of motor development, speech development, skills developments and medical conditions present (properly tested) in the outcome of ASD subgroups

Respondent 0141

a. Gaps and underrepresented research areas.
This part of the strategic plan says, "Efforts to improve public awareness and community supports could help foster acceptance, inclusion, and appreciation of people with ASD." I think everyone can agree with the above goal. Ironically, a great deal of "autism awareness", as it stands today, does the exact opposite. The public is bombarded with messages about autism that promote fear, hatred, and pity. How can an autistic person be accepted in society when his life is reduced to monetary burden by the "3 million in costs over his lifetime"? How can Autistic people be appreciated for who they are when the general public is told that autism is a horrible disease which must be prevented? Some organizations want the public to think of autism as a tragedy in order to raise money to cure children. What they may not have thought about, is how these messages about autism will affect their children as they get older.

b. New opportunities.
Again, research autistic adults. Find out who is happy, who is not, and why. Ask them what treatments or educational methods were helpful, which were harmful, and which did nothing.

c. Research priorities.
The primary objective should be researching supports and services for Autistic people in adulthood. Then get out of the lab, and make it happen! We need services and supports! We don't need brain biopsies.

Respondent 0146

c. Research priorities.
Recommend priority be given to longitudinal studies and cost effectiveness of a range of interventions.

Respondent 0148

a. Gaps and underrepresented research areas.
How does infant-caregiver relationship across all infants directly effect with synaptogenesis and interconnectivity of the young brain?

b. New opportunities.
MRI and other astounding, nonintrusive technologies promise more precise data that can ultimately be connected to clinically observable behaviors

c. Research priorities.
Stated above

Respondent 0149

a. Gaps and underrepresented research areas.
How about where the adult with ASD will be living? I don't see anything in here about studying the care and living arrangements for adults with ASD.

b. New opportunities.
How about including something in here about developing standards that would be federal and cross state lines? How about developing standards on how to deal with adults with ASD? How about developing guidelines for public personnel (police, bus drivers, train conductors, EMT workers, etc...) on how to deal with adults with ASD? Do they currently receive ANY training at all? I don't see anything in here about increasing the number of unisex public restrooms. Have there been studies conducted to quantify the number of unisex public restrooms for adults with ASD and their caregivers to use?

Respondent 0151

a. Gaps and underrepresented research areas.
I think that providing significant improvement in access to proven alternative treatments in addition to proven "approved" treatments will change what the future holds for them. Additionally, the teachers in special education settings should be provided more intense training for how to effectively teach ASD children. As far as future possibilities, I like to stay optimistic and hope that my children may someday be productive members of society. I would like to see educational grants for autistic persons for any post high school education / programs that they qualify for (including vocational colleges and traditional universities).

b. New opportunities.
Open doors (provide opportunities) for those who need them opened and then collect data to study whether or not they are providing a productive service. Protect them under the law from discrimination. Protect them as children from bullies so that the emotional scarring they will undoubtedly have from being singled out can at least be limited as much as possible. Create loving / nurturing environments for them to learn in with well educated teachers.

c. Research priorities.
Provide early help via better teachers, and school environment, then when out of school, open doors for additional education, training and employment and then monitor for results.

Respondent 0152

c. Research priorities.
Many more normative studies from time of birth on need to be done in order to develop a baseline to be used to development assessment tools which will flag at the earliest possible age any potential cases of ASDs. Practitioners, families, and teachers all need to become more familiar with the ASDs, not just anecdotally or experientially, but through forums such as are being offered here, where all are invited to share their current research and experiences.

Respondent 0154

a. Gaps and underrepresented research areas.
Bleak future, when the government won't acknowledge that the vaccine schedule is too aggressive and most of the vaccines unnecessary. Study the links.... +++++ vaccines +++++++++ overusing antibiotics ++++++++++ weak immune systems ========= AUTISM (Man made)

Respondent 0157

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

Respondent 0161

a. Gaps and underrepresented research areas.
Find the recovered children. There are thousands of them out there, but once you've gone through this exhausting, multi-year ordeal, you tend to want to go forward and never look back. The future can be very bright indeed, but you need to talk to those who have accomplished it, not those who listened to their doctors and did nothing, or worse, institutionalized their poor children.

Respondent 0168

a. Gaps and underrepresented research areas.
Incorporating experience of people on the spectrum at all levels of functioning. So, when possible, not only very verbal individuals, but potentially more impaired individuals who may communicate via typing.

b. New opportunities.
A research approach is needed that incorporates the experiences of people with autism across the functioning range to see what are their goals, what do they think works and doesn't, and how can these ideas be put into practice for better positive support systems?

c. Research priorities.
Understanding the variation and outcome for adults is very important and should be kept as a priority.

Respondent 0173

b. New opportunities.
Parents and guardians need help with planning for higher functioning young adults. Some of these young people are brilliant intellectually, yet still struggle socially or with life skills. My son will need help with making sure that his bills get paid and that laundry is done, etc. He is highly gifted in math and engineering-type skills. SO he has the potential for making money to support himself. What about the rest of the picture?

Respondent 0176

a. Gaps and underrepresented research areas.
It appears that the future places tremendous significance on the ability of researchers to determine the cause and cure of autism. Likewise, it appears that an entire generation of children affected by autism will continue suffering without the types and intensity of services necessary to improve outcomes for this very intelligent yet socially ignorant population. The most relevant research topics are not research topics at all: Children with ASD and their families need help, right here, right now, with a bold swiftness that is heretofore unprecedented. I suggest that we make daily intervention free and available to all school-age children with ASD through intervention "gyms" available in all communities. Intervention gyms would be organized for the needs of children and youth with ASD and staffed with therapeutic professionals specializing in treating ASD. There would be a pool (since swimming is universally therapeutic for individuals with ASD) and a dream OT/PT gym.

b. New opportunities.
Children with ASD and their families need daily support and enrichment opportunities such as those offered through Early Intervention Services, only they need them for the duration that children remain school-age. Children with ASD need intensive behavioral and therapeutic supports such as Applied Behavioral Analysis; Floortime/DIR; RDI; speech-language intervention ranging from learning American Sign Language, PECS, or other speech support system (for nonverbal children) and language and social skills supports, including social stories and comic strip conversations, for verbal children; occupational and physical therapy to do simple tasks such as dressing and undressing, tying shoes, and using buttons, zippers, and snaps. Additionally, children with ASD need access to biological supports such as auditory integration that can assist children in learning by ameliorating sensory overloads, as well as dietary changes, chelation, supplements, and environmental detoxification.

c. Research priorities.
Build or convert gyms in every community for use with children and youth with ASD. Speech-language pathologists, behavioral specialists, occupational therapists, physical therapists, etc. would have offices in the gym building and offer services there. Gyms would have swimming pools and large, open areas with therapeutic implements used by occupational and physical therapists. Individuals with ASD and their families would become members, receiving membership and services for free until children leave secondary school. Individuals and their families could receive services every day the gym was open. Services would include ongoing education for parents regarding interventions, advocacy, and support groups. Services would also include social groups for children on the autism spectrum to practice social skills, turn-taking, perspective-taking, and transition decoding, plus employment support as youth enter working age and living transition assistance and information.

Respondent 0181

a. Gaps and underrepresented research areas.
VI. What Does the Future Hold? We agree that families incur large debts related to medical and educational services not covered through public programs or medical and dental insurance. At last count, we personally have spent $18,000 over two years for therapies for our daughter not covered by the educational or medical system. In fact, as I write these comments today our Governor signed autism insurance legislation requiring about half of the health insurers to cover all needed therapies for children and youth with autism. We support looking at transition not just as school to work but possibly post secondary education and access to adult healthcare, as we have personal and professional experience with youth and young adults with autism who are currently participating in and benefiting from post-secondary education and taking a decision-making role in their own healthcare. We support the look at inappropriate involvement in the juvenile justice system. continued...

b. New opportunities.
Further, we support services for children with a dual diagnosis of developmental disability and mental illness. The DD and mental health communities need to collaborate. Currently the DD system supplies behaviorists but a child saying they're going to kill themselves or someone else needs mental health crisis intervention. The mental health system erroneously believes that children with DD can't benefit from counseling and treatment. Autism is listed in the DSM IV, the Diagnostic and Statistical Manual of Mental Disorders. There must be recognition that autism and mental illness are both brain disorders. continued...

c. Research priorities.
In summary, we support the majority of the strategic plan with the exceptions noted above. We recommend looking into existing diagnostic tools, clinical practice guidelines/policy statements, research, and resources rather than using limited autism research funding for these purposes. Thank you for the opportunity to comment on the proposed IACC strategic plan.

Respondent 0187

a. Gaps and underrepresented research areas.
Research topics that are missing: Please include more nonverbal subjects in your research. No research has been done on this group. This is a critical area that is missing from the autism research 'road map'. The possibilities are limitless, if we can begin the groundwork of including this critical, under-served ASD group.

b. New opportunities.
New opportunities and needs for advancing research include developing cognitive testing for nonverbal ASDs, and studying how this group perceives and tolerates its immediate environment, so that new and effective interventions, therapies, and services can be developed.

c. Research priorities.
1. Include more nonverbal subjects in research. 2. Develop cognitive testing for nonverbal subjects. 3. Study how nonverbal subjects tolerate their immediate environment.

Respondent 0190

a. Gaps and underrepresented research areas.
Successful transition into the adult world requires more than a cursory knowledge base of the individual with ASD or the systems involved in the transition process. It is hoped the IACC will identify opportunities for additional research to improve the methods by which collaboration occurs between educational and adult service agencies as well as to determine a minimal standard of knowledge and skills necessary to sufficiently prepare the youth with ASD to understand and access adult services that support a desired quality of life. Ohio has taken some steps. A transition pilot project, through a partnership with the Ohio Department of Education, OCALI, and the Ohio Department of MRDD has been established to assist school districts to utilize a customized employment approach, developing local Transition Councils and teaming with County Boards of MRDD, the Rehabilitation Services Commission, school districts, and others.

b. New opportunities.
Opportunities for educational training programs for adult service providers that are grounded in evidence based research to build capacity among the adult service system are needed. Minimal competencies should be required for adult service providers and programs. Resources should be allocated to identify, define and operationalize these competencies in light of home, work, and community settings.--- Methods for training and informaton. dissemination will continue to be an ongoing need as more is learned about ASD. Advancing this research opens opportunities to better prepare caregivers and service providers. Ohio is doing so through the Autism Internet Modules (AIM) project. Through the efforts of the OCALI, in coordination with other national partners, AIM is slated to develop a series of 60 online modules by the time the project is complete. These modules will include a host of lifespan topics. Module authors will include experts in ASD from across the nation.

Respondent 0194

a. Gaps and underrepresented research areas.
The clinical course and biology of aging with autism is virtually unknown. Inclusion of biological measures in longitudinal studies will aid in our understanding of individual variation in long term outcome and health. Additionally, there should be efforts to collect biological and clinical data on patients both pre- and post- mortem, granting a more global picture of autism through an individual's life.

b. New opportunities.
Evidence based safety training programs need to be incorporated into curriculum for individuals with ASD to be more fully integrated into the community.

c. Research priorities.
According to United Cerebral Palsy's 2008 report on The Case for Inclusion, 43 states plus the District of Columbia maintain waiting lists for residential services. In 1998 it was estimated that over 87,000 individuals with developmental disabilities were awaiting residential placement (Parish 2002). As more and more children with autism age out of the educational system, it will be imperative that research be conducted to develop and assess the impact on quality of life of various options for residential placements in the community.

Respondent 0200

a. Gaps and underrepresented research areas.
What can these children do with their lives if they cannot communicate?

Respondent 0202

a. Gaps and underrepresented research areas.
WHO KNOWS, BUT WE WILL NEVER GIVE UP!!!!!! MY son has almost no voice but is an intelligent boy inside, must have help to communicate

Respondent 0203

a. Gaps and underrepresented research areas.
What is the impact of finding an effective means of communication - as early as possible in the child's development? What is the impact if communication becomes possible later in life? Communication, communication, communication Focus on kids who struggle to communicate!

Respondent 0210

c. Research priorities.
Focus needed on researching types of housing services that will enable individuals with ASD to lead independent or relatively independent lives. Research needed that focuses on the integration of treatments, therapies, pedagogy, and educational programming based on what is known about long term outcomes and experiences from individuals living with an ASD.

Respondent 0211

c. Research priorities.
eliminating all waiting lists.

Respondent 0213

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

b. New opportunities.
Technological advances have occurred which may be included in research on communication.

c. Research priorities.
Nonverbal and low-communicating individuals with autism should be included.

Respondent 0215

a. Gaps and underrepresented research areas.
The whole arena of adulthood and the issues that go along with 'aging with autism'. My daughter is 20 and I'm finding few resources available to learn from.

b. New opportunities.
As more and more focus turns, rightly so, away from 'congregate care' options and toward more individualized neighborhood living, I'd like to see some attention and guidance given to the existing service provider models and how they can more successfully re-design their models from ones based on old 'MR' clientele and toward the needs and unique learning/living styles of adults with autism. The old models work for some, but not most, in our community here in Illinois.

c. Research priorities.
More research conducted in conjunction with corporate/business community would be outstanding. Or with Chambers of Commerce! To promote employment and reduce our traditional reliance on paternalistic notions of 'care'. More research into issues of aging and practical research leading to better interventions/supports for adults to understand things like body changes as you age; death of loved ones; etc.

Respondent 0222

a. Gaps and underrepresented research areas.
There seems to be very little research being done that relates to older individuals with autism or those who are nonverbal or have low communication skills. My child falls into this category. She is almost 18, talks but has difficulty with communicating; there is a big difference in talking and communicating. She obvious knows so much but has great difficulty expressing herself. I feel there is little being done to find ways to help people like her communicate and I believe there are ways to reach even those who seem the most low-functioning. Please don't give up on these people.

b. New opportunities.
Again, include the entire autism spectrum equally in research efforts. Make sure you are addressing the needs of not only the very young, but also older people. And include everyone equally in the research -- high functioning, low-functioning and low-communicating individuals.

c. Research priorities.
Discovering ways to help low-functioning and low-communicating individuals communicate should be a priority. I feel very little attention has been paid to this area and there are so many people who need help now and in the future.

Respondent 0224

a. Gaps and underrepresented research areas.
The nonverbal have only to look forward to institutions in their futures if strategies are not developed to help them become independent and self-sufficient.

b. New opportunities.
Stopping regression Communication Leisure skills Activities of daily living Meaningful work

c. Research priorities.
Find the enzymes or proteins needed in the brain that will kick-start neuron connections.

Respondent 0232

a. Gaps and underrepresented research areas.
The future needs to plan for functional nonverbal individuals. We are in a new technological age many of these individuals could possibly learn to text message!!! Think BIG

Respondent 0235

a. Gaps and underrepresented research areas.
I have a low-communicating 20 yr son with autism. I have no idea what the future holds for him. His IQ tests at 41. He gets frustrated when he can't get though the barrier that keeps him from communicating. What meaningful things can he do?

b. New opportunities.
The children of autism today will grow into the adults of autism tomorrow. Many of them are nonverbal and low-communicating. How can these people live happy fulfilled lives?

c. Research priorities.
More focus needs to be on developing a lifelong plan for nonverbal and low-communicating people with autism.

Respondent 0236

a. Gaps and underrepresented research areas.
We have a wave of autistic children about to become adults, we have a huge undiagnosed adult population and next to nothing in treatment and services for adults. We need clear numbers: how many people with ASD are there in the US? We need a good picture of the "landscape" in order to advocate for the services, etc.

b. New opportunities.
The future needs to offer some hope to this population. The word hope has been hijacked by those selling a cure. Hope needs to mean an autistic child can get the proper education and skill building to allow them to grow up to reach his or her full potential and as an adult will get the support and opportunities needed for employment, housing and recreation as suited to and desired by that individual. This is after all what we hope for all people!

Respondent 0242

c. Research priorities.
PLEASE survey the middle/high school educational practices, family support initiatives, and student outcomes for the ASD population in all 50 states. I *HUNGER* for information about what I can expect as my child moves through middle school and high school. PLEASE research transition experiences as ASD-affected children "age out" of services. PLEASE survey the ASD population as to what their educational achievements, housing, and job prospects are as of age 25. I *HUNGER* for information on OUTCOMES for ADULTS with ASD. --- THESE STUDIES SHOULD INCLUDE NONVERBAL AND LOW-VERBAL STUDENTS AS WELL AS "HIGHER-FUNCTION" CHILDREN.

Respondent 0244

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

b. New opportunities.
No additional comments...

c. Research priorities.
No additional commments...

Respondent 0246

a. Gaps and underrepresented research areas.
Bankrupt society, if not treated There must be environmental causes, which need to be detected

b. New opportunities.
Clean up the vaccines, which now contain: mercury (2nd only to plutonium for toxicity), aluminum (another neurotoxin), formaldehyde, aborted fetal tissue, anti-freeze, and other impurities, plus live or attenuated viruses No mandatory vaccines, which are untested, untried, unsafe!

c. Research priorities.
Address this NOW!

Respondent 0251

a. Gaps and underrepresented research areas.
all kids on the spectrum, including low-functioning and nonverbal individuals.

c. Research priorities.
include all individuals with ASD

Respondent 0257

a. Gaps and underrepresented research areas.
SEE 2

b. New opportunities.
SEE 2-c

c. Research priorities.
SEE 2-c

Respondent 0262

c. Research priorities.
Again, noble goals. My son's future depends on successful deployment of public services for the severely disabled. All of these goals are important.

Respondent 0268

a. Gaps and underrepresented research areas.
The future is full of possibilities as we allow these incredible souls to show us the phenomenal gifts that union at a subconscious level has on group and individual thought. Ever present in all of us is divine knowledge, a shared understanding of creation and wholeness. In this domain, we feel centered, calm, at peace. It is a feeling of coming home where everything is tended, a Garden of Eden with all nature's principles in balance for ultimate survival. These incredible individuals can show us the way.

b. New opportunities.
An awakening of consciousness and first hand understanding that the brain is more of a diffusing device than an emanating one. These individuals may always need partners, but oh what intelligent and magnificent partners they make. Although they have been somewhat dependent on my knowledge base, they have expanded my awareness. Just think of what could happen if they were paired with experts in various fields. Wouldn't their understanding also improve.

c. Research priorities.
I hope what I have said is being taken seriously. I know my ideas are controversial, but we can just start with simple telepathic sending of material. Perhaps that is all society is currently ready for. Also I believe that research needs to be done in a way that does not cause any harm to these very sensitive souls. An Aptitude for interaction and love needs to be present. I hope enough people have come forward that you will begin to take the altered states demonstrated by these magnificent souls seriously. I am a retired teacher of many nonverbal children with autism. It has been a remarkable journey. I have much to share! I hope I can be of service! The dance needs to begin! Thank you, [redacted personally identifying information] http://www.ezinearticles.com/?expert=Mary_Ann_Harrington This link exits the Interagency Autism Coordinating Committee Web site

Respondent 0269

a. Gaps and underrepresented research areas.
Communication is the most severe deficit and yet there is not funding for this research for nonverbal kids.

Respondent 0270

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

Respondent 0276

a. Gaps and underrepresented research areas.
Research is needed on individuals who are the most challenged, especially those with speech language issues.

Respondent 0280

a. Gaps and underrepresented research areas.
There is much discussion about the "window of opportunity" for educating autistic people; that is, the emphasis is on early intervention. We need to know how long an autistic person's brain can keep developing--and in what ways. And this MUST include nonverbal and low-communicating autistic people. Are biomedical approaches the best hope for ameliorating the deficits associated with autism? Is brain surgery possible? Are there ways to "rewire" the brain?

Respondent 0281

a. Gaps and underrepresented research areas.
We need a focus on communication strategies that support individuals who are nonverbal or have limited verbal abilities. And just because someone can verbalize their most basic needs...this is NOT enough. Our wants and needs are only 1% of what we communicate each day. I know the other 99% is the soul of our existence. This needs to be the focus of communication research. AAC/technology and access therapies like Facilitated Communication need to be researched and made available to children in the earliest of days. No one should arrive at age 3 without a communication strategy or strategies that allowe their complete participation including the opportunity for a fully included education with their neuro-typical peers.

b. New opportunities.
We need to hear from individuals with Autism (nonverbal) who have been successful using AAC/FC and technology to achieve full participation in thier world. We can learn a lot from hearing their voices. They can provide information about the support services that helped them achieve their goals. I believe true success will come when we partner with individuals who have the label ASD.

c. Research priorities.
1) Identifying individual who are nonverbal with ASD and have achieved success in accessing a fully included education and participation in the verbal world. 2) Studying the therapies that made these individual a success. 3)Making this information available to professionals and parents alike.

Respondent 0289

a. Gaps and underrepresented research areas.
Nonverbal and low-communicating individuals with autism, (often referred to as low-functioning), have been almost entirely excluded from federally funded research. The nonverbal subgroup represents about 15-20% of the autism spectrum and yet there is no research focused specifically on them.

b. New opportunities.
When you combine the nonverbal group with those who can speak but are unable to communicate (low-communicating), this adds up to approximately 50% of the autism spectrum population, yet they are not represented in current research nor is there any research specifically focused on them. Nonverbal and low-communicating people with autism should be included in the Strategic Plan for Autism Spectrum Disorder Research. There are few, if any, interventions that work for these individuals and currently there is no research to develop them. We need research to develop successful interventions for this group.

c. Research priorities.
There is currently no research to develop communication interventions for nonverbal or low-communicating individuals. We need this kind of research now. Almost nothing is known about nonverbal and low-communicating individuals, yet there is no research focused specifically on better understanding this group. In spite of tremendous advances in autism research in the past decade, this group has not benefited from the progress that has been made and little has changed for them.

Respondent 0294

a. Gaps and underrepresented research areas.
Lots of useful information on the development of autistic brains and forms of communication.

b. New opportunities.
The future hold little if nothing is done for all these autistic people.

c. Research priorities.
See above

Respondent 0297

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

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

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

Respondent 0298

a. Gaps and underrepresented research areas.
What will become of nonverbal low-functioning children with severe behavior problems as they reach adulthood?

Respondent 0302

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

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

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

Respondent 0306

a. Gaps and underrepresented research areas.
well, unless ya'll get off your respective tushes and find the trigger for kids who are regressing, and make it stop, in 20 years, there will be hundreds of thousand autistic adults living on the taxpayers dime in full medical care homes because they can't go the bathroom on their own, and can't be trusted outside a locked ward.

b. New opportunities.
do something.

c. Research priorities.
please.

Respondent 0307

a. Gaps and underrepresented research areas.
Not sure what my son's future will hold. Probably better than most families since we were able to get him into ABA therapy early, and treat him early for the heavy metals in his system. Unfortunately, the future of our next generation is in deep trouble. Especially all those children and pregnant women who will be getting this "safe" H1N1 vaccine. Guess we just have to wait until 1 in 20 children have autism before you take us seriously.

Respondent 0309

a. Gaps and underrepresented research areas.
5 years is too long! These kids will be adults by then! Some already are. In another 8 years, when my son is an adult, there will be so many families with Adults on the spectrum who have not gotten treatment early, that are being cared for by worn out, exhausted parents, who are getting older!

b. New opportunities.
Right now we all function on the "WE CAN'T DIE" Plan. There has to be another option and soon.

c. Research priorities.
Wake up! This is a NATIONAL HEALTHCARE CRISIS! Stop talking about Swine Flu and help us save this generation!

Respondent 0310

a. Gaps and underrepresented research areas.
Studies of vaccinated v. unvaccinated populations

b. New opportunities.
Bring back the plan which recommended that NIH undertake to study of vaccines, vaccine components and multiple vaccine administration in autism causation and severity through a variety of approaches including cell and animal studies and understanding whether and how certain subpopulations in humans may be more susceptible to adverse effects of vaccines.

c. Research priorities.
Do the research now for the study of vaccines, vaccine components and multiple vaccine administration in autism causation and severity through a variety of approaches including cell and animal studies and understanding whether and how certain subpopulations in humans may be more susceptible to adverse effects of vaccines."

Respondent 0312

a. Gaps and underrepresented research areas.
IACC needs more parents here!

Respondent 0318

a. Gaps and underrepresented research areas.
1. The need for outcome studies that demonstrate the efficacy of evidence based programs 2. Research into why if early intervention works then why would we still need services for people into adulthood. 3. Research into the RDI program and how it remediate the core deficits of ASD

b. New opportunities.
I would like to comment on this statement: An overarching goal of ASD research is to enable people with ASD to lead fulfilling and productive lives in the community. If this is your goal then more research should be done on the supposed evidenced based treatments and the question that should be posed is what are they evidenced based to do? If there not evidence that they are remediating the core deficits of autism and therefore not teaching the ability to think dynamically, then there is little chance that these interventions will have any impact in enabling people with ASD to lead fulfilling and productive lives. Teaching static skills, social rules, black and white thinking, scripted responses and routines will not lead to the type of outcome that we are looking for. Programs should only continue to be funded if they are addressing the types of deficits that directly impact quality of life.

c. Research priorities.
Long term objective number 1 and 3 are priorities. Consider RDI within your research. It's goals are specifically quality of life and it is cost effective.

Respondent 0321

a. Gaps and underrepresented research areas.
#1---PLEASE REMOVE DR. INSEL FROM HIS POSITION AT IACC

Respondent 0322

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

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

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

Respondent 0323

a. Gaps and underrepresented research areas.
The future, in terms of the success of the Combating Autism Act and IACC, holds little promise of success as long as Tom Insel chairs the IACC. We need leadership from the EPA or an agency who is experienced in assessing the health outcomes in sub-populations. Insel is the wrong man and NIMH is the wrong agency. I would like to see the leadership of IACC put in the hands of an agency like The National Institute of Child Health and Human Development (NICHD) whose mission is clearly aligned with biomedical research for children who are sick or the National Institute for Environmental Health Sciences (NIEHS) whose mission focuses on finding individual susceptibilities and environmental triggers to disease.

b. New opportunities.
An opportunity would be to partner with the Autism Research institute. The doctors affiliated with ARI and recovering many and improving the health and function of many more children with autism. I know eight in my own family and close social circle who have completely recovered or improved dramatically with medical intervention. And I know dozens more in the broader autism community. Hope is real and recovery is possible and we don't need the current state of IACC getting in the way of the intent of the Combating Autism Act.

c. Research priorities.
Start prioritization with looking closely at the treatments that so many children are responding to. Again turn to ARI for this information

Respondent 0324

c. Research priorities.
The merging and linking of databases in the short and long term objectives should be a lower priority than the research to research regarding effective interventions. The overall amount budgeted for adult research should be increased.

Respondent 0325

a. Gaps and underrepresented research areas.
See previous

b. New opportunities.
See previous

c. Research priorities.
See previous

Respondent 0329

a. Gaps and underrepresented research areas.
studying vaccines, their components, simultaneous vaccinations, vaccinating during illness, antibiotics and vaccines, vaccines and mitochondrial disorders, vaccinated vs. unvaccinated

Respondent 0333

a. Gaps and underrepresented research areas.
This is the million dollar question each parent is asking. And the one that frightens us most.

Respondent 0335

a. Gaps and underrepresented research areas.
There is so much missing here, it is hard to list. This area needs MUCH more attention.

c. Research priorities.
This is the most important subject that research can address right now. "What does the future hold? " Autistic adults are already living "the future". Most autistics are adults. We need to have better ways of finding and serving autistic adults. We need to know what different services autistic adults require compared to other disabilities. We need to find this now so that the large number of identified autistic children can look forward to a better future.

Respondent 0336

a. Gaps and underrepresented research areas.
- Development of new therapies based on current knowledge in neurobiology and behavioral sciences - Impact of educating the persons that interact with the ASD subject on a regular basis about the disorder and how can they accommodate to this person's needs for her or his success

Respondent 0341

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

Respondent 0343

a. Gaps and underrepresented research areas.
Better screening for children with genetic predispositions to be damaged by vaccines.

Respondent 0345

a. Gaps and underrepresented research areas.
again- medical interpretations of the children via labs. focus on toxins, environmental exposure (especially mercury ) but a comparative study on vaccinated vs unvaccinated is imperative.

b. New opportunities.
PLEASE replace Thomas Insel with an objective, no ties to vaccines, honest chair of the Interagency Autism Coordinating Committee (IACC)! It is appalling that he has been able to control and withhold meaningful research into the increasing numbers of children being diagnosed with autism. New information sheds light on this conflict and as a result, Thomas Insel needs to be replaced: http://www.ageofautism.com/2009/08/when-vaccine-development-is-family-business-thomas-insels-conflicted-role-on-vaccines-and-autism.html#more This link exits the Interagency Autism Coordinating Committee Web site "HibTITER® contained the ethyl mercury-based preservative thimerosal, a vaccine component that has been at the center of an ongoing controversy in autism. Many organizations concerned over vaccine safety, including many autism groups, have been asking for increased NIH funding for vaccine safety research, including research into the effects of thimerosal."

Respondent 0347

a. Gaps and underrepresented research areas.
I am not certain where you are going with this, but health care including dental is difficult for special needs individuals and even worse for the nonverbal. Employment is difficult to find for those with autism and even harder if you are nonverbal. What will be in place as the individuals grow old? Will there be senior facilities who will take them?

Respondent 0349

a. Gaps and underrepresented research areas.
The future is dim unless there are changes with vaccines.

Respondent 0350

a. Gaps and underrepresented research areas.
The future does not look very bright for people with autism if the IACC doesn't stop dawdling around the vaccine issue. Will you have the guts to get to the truth? History will judge you.

Respondent 0353

a. Gaps and underrepresented research areas.
The vaccine studies have never been done by objective researchers, not affiliated with vaccine manufacture in some very significant way. There are opportunities to study populations of children who have already not been vaccinated, either for religious reasons or by parents' choice, without requiring that any children whose parents choose vaccination not receive vaccines. The studies that have been done need to be reviewed for conflicts of interest, and the science underlying the autism epidemic needs to leave politics and vaccine interests behind. If it turns out that vaccines are harmless, mercury is perfectly safe to inject into infants despite government warnings about fish, removal from paint, etc., and there is no correlation, then we will simply have to deal with a frightening epidemic that could eventually result in the biggest burden on taxpayers in our nation's history. But if there is a correlation, it would be most cost effective to find it, and stop the increase.

Respondent 0354

a. Gaps and underrepresented research areas.
ADULT SERVICES NEEDED

b. New opportunities.
ADULT SERVICES NEED ESPECIALLY FOR NONVERBAL ASD kids-- who need life long support

Respondent 0359

c. Research priorities.
get rid of Insel, as a parent of an ASD child I have absolutely no faith in him as a leader. I want him out. He has ties to the vaccine industry. He will not look into the vaccine autism link. He is useless to me and as a taxpayer I have no interest in continuing to pay his bloated salary. If he has any humility, any shame, he will quietly step down, go away and let us solve this problem. What do the numbers need to get to get his attention 1-10 children? Under his direction we will get there quickly. Insel out, repeat 100 trillion times. We are all saying it, daily. Has he no shame? He is an embarrassment to science and the vulnerable families. Insel out, NOW!

Respondent 0360

a. Gaps and underrepresented research areas.
Unfortunately if we look for our governmental agencies to truly help children with autism, the future looks very bleak.

b. New opportunities.
The opportunities are not new. Families have begged for vaccine research for over ten years. You obviously are not seeking to advance TRUE research and knowledge about ASD.

c. Research priorities.
FUND A LARGE SCALE INDEPENDENT STUDY OF VACCINATED VS UNVACCINATED CHILDREN IN THIS COUNTRY!

Respondent 0362

a. Gaps and underrepresented research areas.
There needs to be changes in IACC in the near future. First, Dr. Insel should step down because of the conflict of interest issues. He first lost the trust of the public last January when he arranged a vote to rescind the vaccine and autism study that was approved in December 08. That vote was underhanded and should not be tolerated. Secondly, in light of the new information that Dr. Insel has developed vaccines and that his brother developed one of the vaccines in question on the autism/vaccine debate, he needs to step down. That is a conflict of interest plain and simple. Please replace Dr. Insel with someone neutral like Dr. Bernadine Healy. Also, IACC needs more diversity and more public members. That would be another important step to regaining the public's trust.

Respondent 0363

a. Gaps and underrepresented research areas.
What happens to more than 1 in 100 kids when parents can no longer care for them?

Respondent 0366

a. Gaps and underrepresented research areas.
The future is dark unless.......... The AAP provides standards that include testing for food allergies and intolerances, Candida, Clostridium, vitamin deficiencies, mineral deficiencies, and heavy metals. The AAP has failed several generations of children in this regard and the insurance companies are profiting from it. It should be considered one of the major sins made in the modern world.

b. New opportunities.
The AAP should provide standards that include testing for food allergies and intolerances, candida, clostridia, vitamin deficiencies, mineral deficiencies, and heavy metals. The AAP has failed several generations of children in this regard and the insurance companies are profiting from it. It should be considered one of the major sins made in the modern world.

c. Research priorities.
1. Fire any AAP person who does not want to do the following change the standards to first include medical testing for food allergies, food intolerances, candida, clostridia, vitamin deficiencies, mineral deficiencies, and heavy metals. Hire doctors for the AAP who are committed to assessing children with these issues and demanding treatment. If they don't they should all be turned in to CPS for child abuse.

Respondent 0367

a. Gaps and underrepresented research areas.
What happens when my 16 year old graduates. She cannot drive a car. She can take some care of herself, but needs help. I have no idea if she can ever hold a job.

c. Research priorities.
I want people to know that my daughter was damaged. I want her to be able to live independently, have a decent job and some meaningful friends. Just like my other two kids who dodged the bullet of autism. Tom Insel needs to resign. We need someone to run this committee who has first hand knowledge of all the facets of autism.

Respondent 0368

a. Gaps and underrepresented research areas.
We need exact numbers on the number of kids that are being diagnosed with autism. We need to know why it is increasing. When my son was born in 1989, our neurologist told us the rate was 1 in 10,000. In the 1990's I heard it was 1 in 250; then I read it was 1 in 166; now the CDC says the rate is 1 in 150. I understand a recent study found that the rate is 1 in 100 now. Of course that's 1 in 100 children -- since boys outnumber girls four to one, it's much higher for boys. I've heard even worse numbers from other sources -- and it is critical we understand what the real numbers are and why autism is increasing in order to plan for the future. I don't believe it's simply broadened diagnostic criteria and greater awareness. That may account for some of the increase, but not all. We really can't wait for the rate to go to 1 in 50 or 1 in 25.

b. New opportunities.
I'd like to see research on how society will meet the needs of all these kids who will grow into autistic adults who will not be able to care for themselves. It seems that there is a collective will to just stick heads in the sand and hope the problem goes away. It won't.

c. Research priorities.
I think it is critical to find out what the real numbers are (the CDC data is almost 7 years old now) -- see what's happening in other countries -- find out why autism is increasing. There is no such thing as a genetic epidemic, so it's time to stop focusing on genetic research and focus on environmental research.

Respondent 0373

a. Gaps and underrepresented research areas.
An accurate count of persons in the United States with ASD and ages, perhaps could be included by research done by the U.S. Census Bureau.

Respondent 0374

a. Gaps and underrepresented research areas.
Just this past year, our New Jersey school district told my husband and me that they thought that Charlie needed to be placed in a temporary residential placement. My husband Jim and I were shocked to hear this. Raising Charlie has not been easy, but it is a vocation that we have gladly and more than willingly embraced. Hearing educators of autistic children (including a teacher, school administrators, and a psychology professor who is an Applied Behavior Analysis consultant) mention such a temporary residential placement for our son made Jim and me know what parents of a previous generation must have felt, when experts such as Bruno Bettelheim told them that the best way to help their child was to have that child removed from them.

Respondent 0375

a. Gaps and underrepresented research areas.
The fact that there is no research going on for nonverbal people. I don't know because I'm not a scientist. We need to know what treatment will help our children's brains function better with. What is causing nonverbal kids to be nonverbal. A better way to spot it before it gets to late to help them.

Respondent 0376

a. Gaps and underrepresented research areas.
a tidal wave of children with ASD will soon be approaching adulthood and drawing SSI . . . adult services are virtually unavailable . . . waiting lists are years long kids are recovering from autism via biomedical interventions families are financially strapped and stressed beyond belief we need help NOW

Respondent 0379

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

b. New opportunities.
The vaccinated/unvaccinated study.

c. Research priorities.
The vaccinated/unvaccinated study.

Respondent 0385

a. Gaps and underrepresented research areas.
Funding needs to be made available much more quickly than it currently is. To put families on a waiting list for up to two years is to miss a critical time for treatment and intervention. The long-term cost to society of not getting these kids the help they need early is steep. But moreover, it seriously hampers that individuals ability for a happy, productive life. Also, more education is needed on working with individuals with ASD in the schools. These are not 'naughty kids.' They have an impairment and need understanding.

Respondent 0393

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

Respondent 0396

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

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

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

Respondent 0399

a. Gaps and underrepresented research areas.
Parents need $$$$$. We are all broke. The future is bleak for children and parents.

Respondent 0400

a. Gaps and underrepresented research areas.
There needs to be studies done to determine what type of environment would best support the needs of people with autism with no or very limited communication. In addition, how will people with autism with limited leisure and life skills be supported and integrated into the community. What type of skills and training will caregivers need? And how will these caregivers be supported and motivated to enter into this field.

Respondent 0403

a. Gaps and underrepresented research areas.
None

b. New opportunities.
None

c. Research priorities.
None

Respondent 0408

a. Gaps and underrepresented research areas.
The future holds millions of autistic adults unless the money goes to treatment and prevention NOW! Research having organic farms tended by autistic adults who have given their lives so that the next generation isn't as sick as they are.

Respondent 0409

a. Gaps and underrepresented research areas.
Job opportunities for nonverbal individuals. Typically, an individual that doesn't have speech excels in written word. There must be research done into how reading and writing develops. Further, how reading/writing can turn into a life-long career.

c. Research priorities.
Adapted curriculum in order to teach the individuals along with typical peers. Teach math, reading, writing, etc. Why not? These individuals deserve it and the majority of them can do it.

Respondent 0421

a. Gaps and underrepresented research areas.
too much too soon...too many biologicals at such a early age ..our most precious resource our future generations. start listening to the parents there observations are credible. we know our babies and kids best.

c. Research priorities.
the future doesn't hold much. does it if we keep going the way we are..

Respondent 0422

a. Gaps and underrepresented research areas.
If intelligent children with autism cannot be taught to communicate effectively they will have to be supported by the system, can never hold a job, must be constantly protected and will certainly be dependent their entire lives. Not much of a future there.

Respondent 0427

a. Gaps and underrepresented research areas.
I'm not sure.....I know most parents are worried about the future of our kids.

Respondent 0430

a. Gaps and underrepresented research areas.
Research on vaccinated vs. unvaccinated children. Research on children who have regressive autism. Research on treatments autism families are finding helpful.

b. New opportunities.
Research on vaccinated vs. unvaccinated children. Research on children who have regressive autism. Research on treatments autism families are finding helpful. The greatest opportunity would be for Dr. Insel to step down and be replaced by someone who has no agenda other than finding truthful answers to the autism epidemic.

c. Research priorities.
Research on vaccinated vs. unvaccinated children. Research on children who have regressive autism. Research on treatments autism families are finding helpful.

Respondent 0431

a. Gaps and underrepresented research areas.
We must focus research on effective communication methods for nonverbal and low-communicating individuals (through access to technology and otherwise) to prepare them to lead independent, meaningful lives and have access to meaningful employment.

Respondent 0436

a. Gaps and underrepresented research areas.
We need to determine if anything can be done for older autistic persons.

Respondent 0440

a. Gaps and underrepresented research areas.
How can the use of surveillance databases be balanced with adult autistics' right to privacy? How do prejudice and stigma (against both autism in particular and disability in general) affect adult outcome and quality-of-life? What can be done to make our society more autism-friendly?

c. Research priorities.
This section is also massively under-prioritized, albeit not to the extreme that section 5 was. This section not only addresses the future needs of today's autistic children, but also the current needs of today's autistic adults- underfunding in this area affects not only the future but also the present.

Respondent 0445

a. Gaps and underrepresented research areas.
nobody know what the future holds

Respondent 0452

a. Gaps and underrepresented research areas.
More research on the long term outcomes of the intervention programs. Do behavioral approaches or developmental approaches that actually address the core deficits of autism lead to a better quality of life?

Respondent 0454

a. Gaps and underrepresented research areas.
Researching best practices in adult services, what is successful and what works.

b. New opportunities.
Based on stakeholder input, publishing a 50 state resource manual for adult services that are successful in helping families and adults with ASD.

c. Research priorities.
Adult services.

Respondent 0458

a. Gaps and underrepresented research areas.
The topic of quality of life for adults living with autism is missing. These individuals deserve to be as happy as possible. Happiness may be hard to define but it includes maximizing daily functioning skills, minimizing injuries and minimizing aggressive or self-injurious behaviors.

b. New opportunities.
Research on how low-functioning individuals can receive appropriate medical care despite limited ability to communicate illness.

c. Research priorities.
I think research that maximizes the daily functioning of autistic adults should be prioritized.

Respondent 0461

a. Gaps and underrepresented research areas.
where will these children live and work as they get older and family is no longer around/available

Respondent 0472

a. Gaps and underrepresented research areas.
This question is, like previous questions, written with the presumption that readers (and Respondents to this document) are non-autistic parents of autistic children. This is not true. Many autistic adults are concerned with these issues, including autistic adults who have autistic children. I agree that the issues covered in this section are important, but this is not just because family members want to know what their children will be like when they are older. These issues are important because autistic adults exist right now, and may need help. We need to be recognized as the primary stakeholders in these issues. Furthermore, our rights and equality should not be phrased in terms of a cost/benefit analysis. Those involved with autism issues need to learn, and put into practice, the simple yet radical idea that autistic people are inherently valuable members of society who deserve basic human rights.

c. Research priorities.
Research which focuses on new services which we might develop for autistic adults is important, particularly issues relating to employment. Autistic people have many abilities to offer, yet our disabilities often make it difficult for us to find and keep regular employment. This is illegal as per the ADA and needs to be rectified.

Respondent 0473

b. New opportunities.
Documentation and analysis of recovered cases-what did they have in common? Is there a biomarker of treatment response?

Respondent 0476

a. Gaps and underrepresented research areas.
IF the blindly naive treatments of misunderstood behavior displayed by frustrated, apprehensive, and worn down children, is reversed, the enlightened future holds many solutions to current nagging problems. The enlightened future also holds promise of converting much of the waste of currently taught-defective consumers, into positive tax payers. Ominously, the unenlightened future holds HUGE COSTS AND WASTED LIVES, if the naivety of traditional treatments based only on said children is continued.

b. New opportunities.
See section VI c.

c. Research priorities.
The SPRATS series, a dual hierarchy is a way to realize the personality of a person with the condition fostering autism or ANY other personality WITHOUT historical assumption and bias. 1. The mind's use-and-need of the body's neurological systems in order to relate to its environment and to think. 2. What makes a personality, combined with the minds use and need of body systems. In order to survive and to function optimally, ANY individual's LIFE NEEDS are required in first things first order. The R-W-N-S-eHa-UA-eHoE-ESaC-IdF-aHa-DHoE-EBI series, is a hierarchy of LIFE NEEDS linked to neurology. Both series combine into an inclusive hierarchy of use/ need for an individual to have a LIFE, NOT A LIFE SENTENCE. IF the full combination is not complete and working well, in order, any small glitch is likely to become an illustration of cubically reentrant Mobius paths, A TANGLED SPAGHETTI BOWL, TWISTED AROUND, UPSIDE DOWN & INSIDE OUT.

Respondent 0477

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

Respondent 0480

a. Gaps and underrepresented research areas.
School age services in Florida refer to the interventions, such as speech or behavioral therapy, available from ages 3 to 21. School districts provide these services through their special education departments. School-age services focus on facilitating academic education and, by age 16, a plan to transition into adulthood. The school 's special education department is tasked with preparing an Individualized Education Program (IEP). The IEP describes a child's strengths and weaknesses and sets goals and objectives. It also describes how the school will provide the appropriate services. By law, these services must are provided to students at no cost. Families are encouraged to remain involved, even after the IEP is established, by staying in contact wit

b. New opportunities.
Florida's Transition Project through the Florida Department of Education focuses on assisting communities in developing smooth systems to help families with young children who have disabilities and special health care needs move from one agency or program to another.

c. Research priorities.
Other organizations, such as Quest Inc., a nonprofit organization serving people with developmental disabilities in Central Florida, manages the Florida Autism Center of Excellence (FACE). Quest helps people with disabilities achieve their dreams of going to school, having a job, living on their own, and experiencing summer camp. As one of Florida's largest provider of these services, Quest serves more than 1,000 people each day.

Respondent 0481

a. Gaps and underrepresented research areas.
Research on transitions in life should include an investigation of the effects of community attitudes on outcomes, as well as the specific services and supports available; it seems logical that an accepting and understanding community would make successful transitions more likely, and research to that effect would go a long way toward improving community acceptance.

b. New opportunities.
The first paragraph of this section provides an excellent statement of the importance of longitudinal studies and improving public understanding and community supports to foster acceptance, inclusion, and appreciation of Autistic citizens. Unfortunately, the second paragraph, characterizing each Autistic person as a huge financial burden to society, is unfounded (in light of the absence of longitudinal studies that would establish the lifetime costs and contributions of each Autistic person) and runs directly contrary to accomplishing the goal of social acceptance of diversity. We need more studies on services, supports, and long-term outcomes, accomplished in a manner that respects the dignity and value of each Autistic citizen.

c. Research priorities.
Large-scale data collection on Autistic adults is problematical because many such adults do not have a diagnosis and, because of fear of discrimination, would not wish to obtain one or to be included in such a database. As a result, any such data would be seriously skewed. I suggest that a much higher priority be placed on services and supports research, specifically addressing quality of life issues, as well as on longitudinal studies showing what factors are likely to contribute to positive long-term outcomes.

Respondent 0484

a. Gaps and underrepresented research areas.
If we continue with the same old ABA/DT, then we can expect the same dismal results. Hope for the future will come from approaches that accentuate the positive and remediate or accommodate the weaknesses.

Respondent 0485

a. Gaps and underrepresented research areas.
More children with autism is there is no change in course. Make the changes that many of us are recommending.

Respondent 0489

c. Research priorities.
I would like to see a lot more research for and programs developed for nonverbal and low-functioning children. Their needs are so great. I feel that there is so much more that can be offered for them.

Respondent 0493

a. Gaps and underrepresented research areas.
The future looks pretty bleak when people who have blatant conflicts of interest family members who patented vaccines and have no toxicology background stating that thimerosal is safe are out numbering parents in the committee to recommend how and what direction the research should be directed. Did we learn nothing from the total economic breakdown when we let the fox guard the chickens. These are children we should be completely ashamed we let it get this far.

b. New opportunities.
We better get some services in place parents won't live forever and at this rate it will be one in every two before someone looks at what the majority of the parents say He/She was fine until this or that vaccine.

Respondent 0494

a. Gaps and underrepresented research areas.
My heart aches for those with adult children on the spectrum. These people had very little to nothing in terms of support and resources. They are still on the outside. I'm happy to hear that you realize that and are making changes. I hope and pray my son will grow to be a happy productive member of society but I'm scared to death.

Respondent 0501

a. Gaps and underrepresented research areas.
Research ways organizations/governments can facilitate autistic adults' contribution to society. Facilitate interaction with and being a recognized, welcome part of society. Build acceptance and accommodation for autistics in communities.

b. New opportunities.
Consult with autistic adults about what they need and how research can help them!

c. Research priorities.
Focus on acceptance, inclusion, and quality of life. Focus on facilitating contributions to society.

Respondent 0502

c. Research priorities.
Important: "The scope and impact of ASD in adults, including how to diagnose ASD in adulthood, their needs during critical life transitions, assessment of functional and legal outcomes, family relationships, and co-occurring health issues."

Respondent 0505

a. Gaps and underrepresented research areas.
An IACC committed better balanced on the controversial subject of vaccine-induced autism is necessary.

b. New opportunities.
Tom Insel must go as he has abused the public's trust in the IACC.

c. Research priorities.
Tom Insel can step down with grace now or be removed.

Respondent 0507

Helen McNabb

a. Gaps and underrepresented research areas.
Understanding the role of the public school system and students with ASD. Improving support services for secondary education such as: Free tutoring, access to special accommodations, making it mandatory to inform disabled students of their legal right to free tuition. Also, the need to Increase ALL PUBLIC SERVICES - the dollar amount of the SSI, SSDI benefits to allow those with ASD to get the various services/supports needed to sustain them such as: Psychological Assessments, Neuropsychological Testing, Special Education, a Power-of-Attorney, guardianship, and therapies in Speech Language, Occupational, physical therapy, and legal representation with special ed. The parents are supporting these adults in ALL AREAS OF LIFE and won't be able to sustain them much longer.

b. New opportunities.
Educating the entire public beginning with the local, state, and federal gov., especially, those directly in contact with adults of ASD such as: Educators, police, physicians, psych., and group home facilitators so they are better equipped in understanding the symptoms of ASD, especially, in critical situations. Educating children and adults in all schools to reduce stigma. Improving health support services by allowing Medical Assist. to pay for the private ins. premiums already in place. (The adult w/ASD cannot drop the private insurance they started with prior to being diagnosed because of being rejected later with a pre-existing condition.) Solution: Medical Assistance could pay the premium in lieu of paying medical bills. This allows the private insurance to remain in force until the person becomes independent and withdraws from Med. Assist.

c. Research priorities.
First, identify those adults with ASD who are already in the Social Security Administration's database. Second, address their needs - financially, educationally, medically - short & long term care. Third, address the very last "long-term objective" on page 24.

Respondent 0508

a. Gaps and underrepresented research areas.
People with ASD want to live a meaningful life, just as you and I do. What is available once children leave school and enter the adult service system is bleak, especially for those with complex needs. How do we look at the individual needs of people and give them choice and opportunity within their community, not just within a congregate setting. Once nonverbal people are now typing and telling us it is just their beastly bodies doing things they can't control and it has no reference to the person and their desires, locked inside. So much more research on this needs to be done to validate what these people are saying. It needs to be demonstrated so people have a voice and are not simply judged on their behavior. Then they will have access to the community and world they want.

b. New opportunities.
Just what I said. Nonverbal people need to be incorporated into the studies. More and more nonverbal people are typing and telling us what they want, yet they are viewed on Dateline as "medical mysteries"! It is there before our eyes, yet people don't want to believe it. do the research, give these people voice and therefore some control over there lives so they have meaning.

Respondent 0509

a. Gaps and underrepresented research areas.
"Conduct at least two clinical trials to test the efficacy and cost-effectiveness of interventions, services and supports to optimize daily functioning (e.g., educational, vocational, recreational, and social experiences)" This is great, but you should also include biomedical treatments. For example, the GFCFSF diet makes a huge difference for some people in daily functioning, behavior, communication, and cognition.

b. New opportunities.
Include studies on biomedical treatments for adults.

Respondent 0510

a. Gaps and underrepresented research areas.
This is an epidemic-WHY?!

c. Research priorities.
same!

Respondent 0514

a. Gaps and underrepresented research areas.
Future looks like full jails and insane asylums. DO NOT SPEND RESEARCH DOLLARS ON BEHAVIOR. I DON'T GIVE A FLYING PIG! You got the WRONG PRIORITIES. Fire everyone on the committee that does not have an immediate family member with Autism. Research ischemic and environment events only. Do the vaccinated vs unvaccinated study.

b. New opportunities.
Future looks like full jails and insane asylums. DO NOT SPEND RESEARCH DOLLARS ON BEHAVIOR. I DON'T GIVE A FLYING PIG! You got the WRONG PRIORITIES. Fire everyone on the committee that does not have an immediate family member with Autism. Research ischemic and environment events only. Do the vaccinated vs unvaccinated study.

c. Research priorities.
Future looks like full jails and insane asylums. DO NOT SPEND RESEARCH DOLLARS ON BEHAVIOR. I DON'T GIVE A FLYING PIG! You got the WRONG PRIORITIES. Fire everyone on the committee that does not have an immediate family member with Autism. Research ischemic and environment events only. Do the vaccinated vs unvaccinated study.

Respondent 0519

a. Gaps and underrepresented research areas.
Increase budget for merged/linked databases for tracking involvement of ASD people inclusive of ARI/DAN clinical data.

b. New opportunities.
Increase clinical trials on efficacy and cost-effectiveness of interventions, services and support to optimize daily functioning to 10 trials.

Respondent 0520

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

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

Respondent 0521

a. Gaps and underrepresented research areas.
examine exceptions to the rule. Low and nonverbal people with autism who have defied the stereotypes and succeeded

b. New opportunities.
innovation in low and nonverbal children with autism. The future should not be limited to high functioning verbal people with autism.

c. Research priorities.
life long perspective; dignity for all levels of autism. Study low and nonverbal people with autism and the culture of both success and failure they exist within. Study from an anthropological perspective

Respondent 0524

a. Gaps and underrepresented research areas.
We need to remember that today's ASD children are tomorrow's ASD adults. These adults will continue to need support. They will also inherit a place in this very conversation, and they deserve a voice as early as they are able to advocate for themselves. It's important to realize that many of our children will one day be able to read what we are writing about them in these conversations. Are we respecting their personhood, or are we merely treating them as passive victims? Are we asking them what they want for their own futures? After all, they're the ones, ultimately, who will be living with an ASD.

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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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