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US Autism & Asperger Association
April 27, 2011

USAAA Advisory Board Member Reports from the White House

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Kathleen Sebelius, Secretary of Health and Human Services, addresses autism organization representatives, researchers, professors, parents and individuals on the autism spectrum regarding the needs of individuals affected by Autism Spectrum Disorders at the White House, April 25, 2011.


MacNeilStephen M. Shore, EdD, US Autism & Asperger Association Advisory Board Member, was invited to participate in a special meeting at the White House addressing the needs of individuals affected by autism spectrum disorders. Dr. Shore will be a featured presenter at the USAAA 6th Annual World Conference October 27-30 in Seattle, WA and will have a special debut presentation at the conference on a subject that he has not presented at any previous conference worldwide. Dr. Shore is an Assistant Professor of Special Education at Adelphi University, author of Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome, Author and Contributor of Ask and Tell: Self-Advocacy and Disclosure for people on the Autism Spectrum, Coauthor of Understanding Autism for Dummies, and Co-featured in the newly released DVD Living along the Autism Spectrum: What it means to have Autism or Asperger Syndrome.

WASHINGTON, D.C. Reporting from the White House by Stephen M. Shore, EdD
US Autism & Asperger Association Advisory Board Member

I was invited by the White House to a meeting addressing "Meeting the Needs of People with Autism" and to participate in breakout sessions. The attendees consisted of about 75 leaders of the autism community that included autism organization representatives, researchers, professors, parents and individuals on the autism spectrum.

11:30AM: We passed through numerous security screenings and were welcomed by Valerie Jarrett, Senior Advisor and Assistant to the President for Intergovernmental Affairs and Public Engagement.

At 11:35AM: Kathleen Sebelius, Secretary of Health and Human Services gave a 20 minute talk addressing the urgency that the government feels in addressing the needs of people with autism. She also talked about upcoming positive changes in health care coverage for adults and those with pre-existing conditions. Click here to listen to Secretary Sebelius's speech.

12:00PM: Break

12:45PM: We divided into four breakout groups for a 90-minute session lasting until 1:45PM:

1. Education and Employment
2. Community-based Services
3. Research and Innovation
4. Public Health/Healthcare

I was assigned to the Research and Innovation group, which was led by Dr. Tom Insel, Director of the Interagency Autism Coordinating Committee, which I am a public member. The discussion opened with a query from Dr. Insel into our thoughts of the most compelling areas research needs to focus on.

The first part of my response focused on the need to look into supporting adults with autism in higher education and employment. While people on the autism spectrum may have the expertise required for the position, there are social and other challenges creating barriers for achieving success in both areas.

My second area centered on the need to be careful about potential unwanted consequences in the diagnosis and treatment of autism as related to the upcoming changes in the DSM 5 [Diagnostic and Statistical Manual of Mental Disorders] definitions of autism. For example, the current system of sub-classification in autism (PDD-NOS, Autistic Disorder, and Asperger's Disorder) is proposed to being replaced by a larger single category called Autism Spectrum Disorder and a severity scale.

An example of using this severity scale would be the rate how difficult it is to draw a person with autism away from an area of intense or focused interest – suggesting that it may be more important to concentrate on teaching social interaction or other skills. The potential danger is that if educators take this concept too far, we are potentially eliminating what can be a strength of people on the autism spectrum. That is, engaging deep or special interests to become experts in various fields.

This led to discussion of what society might be missing out on if, for example, Temple Grandin – who designed over half the cattle processing plants in the United States or Albert Einstein were considered as being "too deep in their interests" and not being allowed to pursue them. Perhaps the focus should be placed on directing these deep interests towards potential courses of study and careers.

There was also the tug and tension as members of the groups discussed whether autism is a disability, disorder, or a difference. I commented that autism is not necessarily a disorder but perhaps a different way of being. However, there are a number of things about autism that are disordering and that’s why we are all here – trying to figure these things out.

A second area of tension formed between parents and others focused on children more significantly affected by autism who tend to be nonverbal, have significant behavioral challenges, and have medical complications as opposed to people at the Asperger end of the autism spectrum who have challenges in other areas.

The session concluded with realizations of:

1. Urgency: While a lot of good research as 10-20 year timelines, what can we do to help the approximately 1% of the population that has autism now.
2. Coordination: between groups is needed. Research is more effective with collaboration.
3. Accountability and generalization: Results of research needs to be useful to the practitioner level.

1:45PM: Break

2:00PM: Reporting back to the larger group from the four subgroups. It was interesting to see a significant amount of overlap in the recommendations from the other groups.

2:30PM: Closing remarks from Tony Miller, Deputy Secretary, U.S. Department of Education and others.

In all I thought we had a productive day where participants were afforded an opportunity to contribute their expertise of information to the government of the greatest challenges facing the autism community. There was a solid sense that these high level governmental officials were taking our recommendations directly to President Obama for his consideration.

I feel fortunate in having the opportunity to participate in the historic event.

Click here to hear Kathleen Sebelius, "Meeting the Needs of People with Autism," posted on the White House Blog, April 25, 2011.


SPECIAL NOTE
by Jim McNulty, Public Representative, DSM-5 Task Force, Past President, NAMI; David J. Kupfer, M.D., Chair, DSM-5 Task Force; and, Darrel A. Regier, M.D., M.P.H., Vice-Chair, DSM-5 Task Force

On behalf of the American Psychiatric Association, we invite your participation in an update briefing call for mental health consumer and family organizations on the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5).

This is the promised update call to discuss the proposed new revisions to the DSM-5, which is the standard classification of mental disorders used by mental health and other health professionals for diagnostic and research purposes.

Specifically, we will review proposed changes to the DSM-5’s organizational framework – a restructuring of the chapters and categories of disorders reflecting the latest scientific thinking about how various conditions relate to each other. These revisions, as well as the latest proposed revisions to diagnostic criteria, will be open to a new period of public comment on our website, www.dsm5.org, from May 4 to June 15, 2011. We’ll also provide an update on other revision activities, including the ongoing field trials, which are testing proposed diagnostic criteria changes in real-world clinical settings.

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