Interagency Autism Coordinating Committee logo


Main content area.

Strategic Plan Question 6: What Does the Future Hold, Particularly for Adults?

Respondent 1

Matthew J. Carey

a. What has been learned about the issues covered in this chapter in the past year?
The future is now. Autism is a lifespan condition and should not be considered as a childhood disorder. There is a large contingent of unidentified adult autistics. The cost estimates for autism include large indirect costs for adults which includes a large loss of income. Obviously there is a large return on investment possible if we can improve the employment opportunities of adults. Even if one assumes that the true autism incidence has been steeply rising, the time to prepare for the autistic children to become adults is now. The time it will take to understand the issues and develop the supports needed is long. We need to focus attention on adult issues. This is probably one of the most important issues the IACC can focus upon and is one of the least funded areas.

Respondent 4

John Best

a. What has been learned about the issues covered in this chapter in the past year?
Standard practice is to throw our kids in asylums, drug them into oblivion and kill them while in restraints, if possible, to save some money on caring for them for 60 or 70 years. You [profane language redacted] know that we could cure many of these people but that would reflect poorly on the medical profession who caused all of the autism so you pieces [profane language redacted] won't do that. I suggest that you could improve the image of doctors by telling them to admit that they screwed up and to start helping people correct their malpractice. The only way to improve quality of life is to undo the brain damage that you caused by shooting way too much mercury into their brains. All that this requires on your part is honesty, something I think you are too corrupt to agree to.

Respondent 5

Gail Elbek
Child Health Advocates

a. What has been learned about the issues covered in this chapter in the past year?
Research on how early endocrine disruptor (ED) intervention can impact health and quality of life outcomes does not mention avoidance of soy ED toxicity.

b. What are the remaining gaps in the subject area covered by this chapter?
The time has come for the IACC to seriously review and inform the public of massive evidence proving soy phytotoxic endocrine disruptor (ED) damage to brain and body development of our children. A child might be able to normally survive soy ED contamination, while known that many children will not. Until it can be proven as to which fetus, infant, child might survive soy ED poisoning this game of soy roulette must become public information to save children from a lifetime of unnecessary pain and suffering.

Respondent 6

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

b. What are the remaining gaps in the subject area covered by this chapter?
The sorrow continues forever.

Respondent 8

a. What has been learned about the issues covered in this chapter in the past year?
Connect family members with other families that have been through it. Here in New York state there is Parent to Parent of New York State Peer Integration.

Respondent 9

Susan Lin
American Occupational Therapy Association

a. What has been learned about the issues covered in this chapter in the past year?
The American Occupational Therapy Association (AOTA) strongly supports the aspirational goal for Question 6: "All people with ASD will have the opportunity to lead self-determined lives in the community of their choice through school, work, community participation, meaningful relationships, and access to necessary and individualized services and supports." We highly commend the IACC for developing the new short-term goals and we view the following two goals as especially important: "Develop at least two individualized community-based interventions that improve quality of life or health outcomes for the spectrum of adults with ASD by 2015. IACC recommended budget: $12,900,000 over five years." Conduct study that builds on carefully characterized cohorts of children and youth with ASD to determine how interventions, services, and supports delivered during childhood impact adult health and quality of life outcomes by 2015.

b. What are the remaining gaps in the subject area covered by this chapter?
A critical piece for Question 6 is transition planning for high school students with an ASD. While transition planning is specified by the Individual with Disabilities Education Act (IDEA), we are concerned about the variability of transition services across school systems. Occupational therapists may be invited to serve on the transition team if the student requires occupational therapy services to benefit from his or her educational program (Conaboy, et al., 2008). However, the individual with an ASD may need to learn independent living skills or job-specific skills to successfully transition to adulthood. Occupational therapy services are often provided in the earlier years of schooling for children with an ASD, focusing on promotion of learning behaviors, handwriting, keyboarding, social skills, toileting, eating, etc. However, for adolescents with an ASD, social skills interventions are needed for dating, working with peers on projects, and communicating with co-workers and supervisors (Tomchek & Case-Smith, 2009). Other skills such as money management, healthy meal preparation, and home maintenance are also important skills for adulthood. Therefore, the efficacy of occupational therapy services should be investigated as students with an ASD transition throughout their school career and post high school graduation. We support studies to identify potential barriers to comprehensive transition planning and development of models, teaming, and resources to implement transition services and plans for positive student outcomes. Once again, thank you for providing this opportunity to comment on the IACC's 2010 Strategic Plan for ASD Research. References Conaboy, K.S., Davis, N.M., Myers, C., Nochajski, S., Sage, J., Schefkind, S., & Schoonover, J. (2008). FAQ: Occupational therapy's role in transition services and planning. American Occupational Therapy Association.

Respondent 10

Andrea Payne

b. What are the remaining gaps in the subject area covered by this chapter?
My son is going to want to work a job and drive a car in six years. That's not going to be possible from where he is right now. Saving for his future is also not possible because of the massive costs we incur that there is NO funding source for; as well as the limits set by Supplemental Security Income (SSI) on how much 'cash' can be 'on hand'. If early intervention along with a behavior and education plan that meets his specific needs are the key to his future success - it should not be so hard to provide these for him. Not even three months of applied behavior analysis (ABA) was $2,600; music therapy is $160 a month; camp is $300...and so on.

Respondent 11

G. A. Elbek

b. What are the remaining gaps in the subject area covered by this chapter?
It is past due that the existing massive scientific evidence proving developmental soy phytotoxic endocrine disruptor contamination of fetus, infants, and children become publicly reported as the cause of multiple mental disorders such as autism. The FDA also confirms that soy products are chemical 1.) estrogenic endocrine disruptors, 2.) poisonous plant, and 3.) contains: toxic phytic acid, essential enzyme inhibitors, and multiple heavy metals. Each and all of these are pathologically PROVEN as neurotoxic with greatest risk of the occurrence of brain and body toxicity due to fetal, infant, and child developmental soy poisonous chemical exposure. Several hundred scientific studies repeatedly confirm that these exact adverse soy phytotoxic effects are proven to damage multiple developmental brain cell systems well-known to cause: autism, mental retardation, cerebral palsy, seizures, attention deficit hyperactivity disorder (ADHD) and more.

Respondent 14

Kim

a. What has been learned about the issues covered in this chapter in the past year?
In-home supports are far CHEAPER than institutional or group home placements! Also, there should be a push for psychiatric technicians to be doing IN-HOME nursing care supports through the regional centers, since the institutions are closing, then where the psychiatric technicians are now going to be needed is IN HOMES where these adult autistics are returning!!!

Respondent 16

Family Voices-NJ

a. What has been learned about the issues covered in this chapter in the past year?
We agree with the costs of autism but focus more on the "human" cost. Even in the education system "where services are mostly obligatory," families are having difficulty accessing services for their children. As students transition to adult life, they are put on waiting lists for services. We also feel that the "institutional level of care" requirement for home and community based waivers is too restrictive. We agree that there is little information on ASD and the justice system, but there is much data on mental health which may include autism. For example the National Center for Mental Health and Juvenile Justice study found that 70 percent the children in the system had mental health disorders. Autism is listed in the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition (DSM-IV). There must be recognition that autism and mental illness are both brain disorders. We would highly recommend consultation with Dennis Debbaudt who trains emergency personnel nationally on autism issues (see www.autismriskmanagement.com/index.cfm This link exits the Interagency Autism Coordinating Committee Web site).

b. What are the remaining gaps in the subject area covered by this chapter?
For long-term objectives, we agree with the studies on quality of life or health and would suggest using health outcomes, as overall health determines quality of life; further research shows that people with brain disorders die on average 20 years earlier. However, we don't feel that there needs to be a new objective on further study of cost effectiveness to examine community based supports as this data already exists, unless extended to look at quality of life and health outcomes.

Respondent 18

Holly Masclans

b. What are the remaining gaps in the subject area covered by this chapter?
Who will pay for my children's lifetime care? Will families with vaccine injured children ever see justice?

Respondent 19

b. What are the remaining gaps in the subject area covered by this chapter?
Job placement and coaching and support services need to become available across the country and a best practices consensus needs to be developed to help autistics become employed or run their own business.

Respondent 20

a. What has been learned about the issues covered in this chapter in the past year?
Gliotoxin has been shown to kill CD4 cells and may be responsible for the immune defects seen in autistic children. Lifelong screening for gliotoxin and glutathione levels in these children may be predictive of immunity based outcomes and diseases.

Respondent 22

Aimee Doyle

a. What has been learned about the issues covered in this chapter in the past year?
We've learned that there is a "tidal wave" of young autistic adults coming through the system. They will require an enormous amount of resources to support them throughout their lifespan. The United States services currently in place cannot handle 1% of children becoming autistic adults.

b. What are the remaining gaps in the subject area covered by this chapter?
I want research not just on early intervention (not everyone gets early intervention, and not everyone is helped by early intervention). I want middle-intervention, late intervention, unending intervention. After all, we don't stop treating people with cancer or other medical problems once they become adults. We should continue to research and try treatments and therapies (and more than just zombie-fying drugs) that could help adolescents and adults. Maybe applied behavior analysis (ABA) would be effective with older kids too. What you propose as a new objective is a joke "three trials for adults by 2014." Given the number of autistic kids growing up, you need a lot more than that.

Respondent 24

Ray Gallup

b. What are the remaining gaps in the subject area covered by this chapter?
If the ASD epidemic isn't be stopped there will be human and economic consequences.

Respondent 26

b. What are the remaining gaps in the subject area covered by this chapter?
What I worry about is who will look after my son when the parents are no longer around. I think he will be okay financially. He is an only child and we have no family members who would take on the responsibility of checking in with him. This is probably a community issue but I have not seen any good options to deal with this serious challenge. I worry that many will become homeless with no one to look out for them.

Respondent 27

b. What are the remaining gaps in the subject area covered by this chapter?
many

Respondent 34

Marie A. Sherrett
MPA student-Strayer University

a. What has been learned about the issues covered in this chapter in the past year?
To me, any way one looks at it, these individuals grow and live normal lifespan since they seldom drive; don't drink; don't use drugs and yet need jobs, recreation and a sense of purpose in life. To that end, free support services should be available for all those families, including not just special education needs until age 21, but also respite care and assistance to the families. Few know the hidden costs to families of those with autism. Research says the mothers have a hard time at work if they have kids with autism. That's because few want to help unless they get paid and extended families are scared of autism and often just say, "I don't know how you do it," but offer no help. Social Security laws must be changed so once a person is identified with autism, that family immediately gets $1,000 tax-free monthly forever to help pay for autism's costs. It would go a long way to offset the financial deficits connected to autism. Marie A. Sherrett, [personally identifiable information redacted]

Respondent 35

Marc Rosen

a. What has been learned about the issues covered in this chapter in the past year?
Strong probability of discrimination in higher education, housing, employment, and in receipt of services. Especially strong probability that employers will attempt to block individuals from utilizing services they have attempted to access.

b. What are the remaining gaps in the subject area covered by this chapter?
Failure to provide proper education on self-advocacy.

Respondent 38

Audrey Smerbeck

a. What has been learned about the issues covered in this chapter in the past year?
There are no goals pertaining to people with ASDs and the law. There have been multiple recent news stories involving a person with ASD who ended up receiving overly harsh or violent treatment by the police because there was little understanding of the individual's seemingly bizarre behaviors.

b. What are the remaining gaps in the subject area covered by this chapter?
People with ASD have difficulty with complex communication skills like selecting the relevant details or appearing trustworthy. This means that people with ASD may have particular difficulty clearly explaining themselves if they are interviewed by the police, whether as a witness or a suspect. There is a rich literature looking at interview techniques which are most effective with typically developing children. It would be worthwhile to begin examining which interviewing techniques are most effective for people with ASD. Examine access to skilled and knowledgeable practitioners for social skills training, counseling, psychiatry, primary care medicine, etc., particularly keeping in mind that adults with ASD who do achieve some level of independence are still typically underemployed and are unlikely to afford the highest-tier practitioners. There is nothing in the chapter on the neurodiversity movement. It seems to mean different things to different people, but generally speaking it refers to a group of adolescents and adults with primarily high-functioning ASDs who feel the balance between acceptance and treatment should shift more toward acceptance than at present. Establishing studies about quality of life and positive outcomes cannot really be done unless it is understood that people with ASD may have different ideas about what constitutes a quality life or acceptable outcome. For example, a highly intelligent person with ASD who is employed as an auto mechanic may be rated as "underemployed" in an outcome survey, when in fact that individual may truly prefer being a mechanic because it matches his interests. There certainly are people with ASD who really are underemployed because their ASD symptoms prevent them from getting and keeping a job that uses their skills, but the mechanic example shows how the issue is more complicated than a traditional quality of life survey would indicate.

Respondent 39

Ann-Mari Pierotti
American Speech-Language-Hearing Association

b. What are the remaining gaps in the subject area covered by this chapter?
Research devoted to examining the content as well as frequency.

Respondent 42

Peter Bell
Autism Speaks

b. What are the remaining gaps in the subject area covered by this chapter?
Research is needed to develop and validate a life skills assessment and evaluation tool specifically for young adults with autism. Too many individuals with autism exit the educational system without the necessary life skills to hold a job, live as independently as possible, and find their place within their community. Transition plans are put in place, but without an autism specific life skills assessment and evaluation tool, it is difficult to pinpoint exactly what skills have been mastered and what needs to be worked on prior to completion of secondary education. This tool (think an "Assessment of Basic Language and Learning Skills (ABLLS) for Life") would then be used to develop curriculum so educators would have a consistent set of life skills that students with autism would work to accomplish before leaving the educational system so that they would be better prepared for employment, housing and community life.

Respondent 47

Duke Crestfield

a. What has been learned about the issues covered in this chapter in the past year?
A whole new world has emerged as parents of ASD kids are discovering that they are also on the spectrum, and the issue has become popular, with the Wired's 'Geek Syndrome' issue and the movie 'Adam'. This gives us the first view of a productive culture of people on the spectrum who are not defined by pathologies.

b. What are the remaining gaps in the subject area covered by this chapter?
Huge problem with people aging out of services. Teenagers have little available, and adults almost nothing.

Return to top of page

Please note that respondent numbers are not sequential due to the fact that some respondents did not provide an answer to each question or sub-question. Some respondents indicated that they wished to have their name and/or affiliation be associated with their response, and in those cases, the information is provided at the top of the response.

Typographical and spelling errors have been corrected and abbreviations lengthened to facilitate searching the document. Every effort was made to avoid altering the meaning of the comments. Responses that referenced an individual respondent's earlier responses (e.g. "See above.") and did not contain additional information were omitted to make this working document more concise. Profane, abusive and/or threatening language, and personally identifiable information have been redacted.

Return to top of page


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

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