United States Autism Research Agenda Being Decided

Date First Published: December 14, 2007
Date Last Updated: December 26, 2007

On November 30, 2007 the Interagency Autism Coordinating Committee (IACC) met to discuss how autism research priorities in the United States will be determined. This is of utmost importance to individuals with Autism Spectrum Disorder (ASD) and their families. Decisions made now will determine how millions in autism research funds are spent over the next few years.

The Combating Autism Act and the IACC

The Combating Autism Act of 2006 is a federal law mandating the expansion of autism research activities in the United States. Because autism research takes place in a wide variety of institutions and disciplines, coordination of this complex effort is necessary. The Act established the Interagency Autism Coordinating Committee (IACC), which must:

1. Develop and annually update a summary of advances in ASD research.
2. Monitor federal activities with respect to ASD.
3. Make recommendations to the Secretary of the Department of Health and Human Services regarding any changes to such activities.
4. Make recommendations to the Secretary regarding public participation in decisions relating to ASD.
5. Develop and annually update a strategic plan for the conduct of ASD research, including budgetary requirements.
6. Submit to Congress this strategic plan, as well as any updates to it.

The members of the IACC are drawn from several sources, including major government medical and research institutions, such as the Centers for Disease Control (CDC) and the National Institutes of Health (NIH); other government institutions which are impacted by ASD (such as the Department of Education and the Centers for Medicare and Medicaid); autism advocacy organizations (such as Autism Speaks and the Autism Society of America); and individuals impacted by autism, including adults with ASD and families of individuals with ASD.

IACC Meeting on November 30, 2007

The IACC convened on the morning of November 30, 2007 in the Rotunda Room of the Ronald Reagan Building in Washington D.C.

Michael Leavitt, Secretary of the U.S. Department of Health and Human Services, called the meeting to order. Elias Zerhouni, the Director of the National Institutes of Health (NIH), then gave a fascinating presentation on the broader context in which autism research will take place, explaining that we are in the midst of a shift from 20^th century medicine, which was based on a reactive model, to 21^st century medicine, which will be based on a preventive and preemptive model, as follows:

This 21^st century "Preventive/Preemptive" model will be based on four "Ps." It will be:

1. Predictive -- the goal is to unravel the mystery of any disease or disorder so that we can predict who is at risk of developing it.
   
2. Personalized -- care will be tailored to the individual's genetic and environmental make-up and circumstances.
   
3. Preemptive -- medicine will intervene before a disease or disorder strikes.
   
4. Participatory -- science and the communities impacted by a disease will collaborate in finding answers.

After Director Zerhouni's introduction, Thomas Insel, the IACC chairman and the Director of the National Institute of Mental Health (NIMH), led the meeting.

The meeting had two major goals. The first was for this new committee's eighteen members to begin to know one another. (For a list of members, please see the IACC Meeting Agenda.) The second was to quickly agree on how to put in place a strategic plan for autism research. The Combating Autism Act requires that the IACC present such a plan to Congress.

Public Input: A Key Element of the Strategic Plan

Joyce Chung, M.D., the NIMH Autism Coordinator, proposed a process for creating the Strategic Plan for Autism Research to the Committee. This process outlined how the Strategic Plan required by the Combating Autism Act would be created quickly, with input from all Committee members and the public.

There was vigorous debate by the Committee members on how best to accomplish this. A process for developing the Strategic Plan was accepted ultimately by unanimous vote subject to some changes, including a desire by advocacy groups for the inclusion of services research. Services research describes the services available to individuals on the autism spectrum and their families, and which groups actually receive those services.

Most important was the repeated emphasis that, in accordance with Dr. Zerhouni's emphasis on collaboration between science and the communities it serves, public participation is central to the planning process. The IACC will therefore be seeking input from important stakeholders, including individuals with ASDs and their families. What do members of the the autism community view as their greatest needs? What is causing them the greatest pain? What types of research will best serve them in the short run and long run?

Sharing Your Opinion: IACC RFI and IAN Autism Research Priority Survey

The IACC has now issued a Request for Information (RFI) to which members of the public can respond. The RFI, with a response due date of January 4, 2008, is entitled Research Priorities for the Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorders. 

If you wish to share your opinion on the direction autism research should take in the United States, you can follow the above link to the RFI instructions and submit your thoughts about autism research priorities directly to the IACC. 

In addition, IAN is developing a questionnaire that will allow families participating in IAN Research to express quickly and easily their opinions about their needs and priorities. We are also developing a similar online survey for members of the autism community who are not yet participating in IAN Research: adults with ASD, grandparents, siblings, teachers, therapists, and anyone whose life is impacted by autism.

Watch for an Autism Research Priorities Survey from IAN. Answering this survey will provide an easy way to convey your opinions to the IACC in order to influence the autism research agenda of the United States.