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October 23, 2009 IACC Meeting Summary

October 23, 2009

Bethesda, MD (October 23, 2009) -- The Interagency Autism Coordinating Committee (IACC) met on Friday, October 23, at the National Institutes of Health, in Bethesda, Md.

IACC Chair Thomas Insel, M.D. opened the meeting by reporting that NINDS Director Story Landis, Ph.D. had resigned as a federal member of the Committee. In a previous IACC meeting, Dr. Landis had left behind written comments concerning remarks that public member Lyn Redwood had made. Dr. Insel apologized on behalf of the IACC to Ms. Redwood. He said that this situation served as a “teachable moment” for the committee to ensure it was fulfilling one of its core values — to engage in respectful dialogue. He also expressed his concern that the public has lost trust in the IACC. He challenged the members to lead with the power of ideas and to regain this trust through respect of the diversity of views in the autism community.

Following the opening remarks by Dr. Insel, the morning session began with a panel called “Families Living with Autism,” moderated by Autism Speaks Executive Vice President Peter Bell. The panel consisted of a diverse group of individuals with autism and families affected by autism. It included two individuals who presented on their own behalf as well as parents who shared the stories of their children who could not speak. These panelists included individuals who had severe co-existing medical conditions; an individual who was recovered; a highly capable, self-reliant individual; and several children and adults dependent upon parents as their primary caregivers. The panel was intended to inform members of the reasons for their service on the committee to help coordinate the federal response to autism. Brief biographies of the panelists can be found here.

Following this panel, Tony Charman, Ph.D., of the University of London presented on Applied Behavioral Analysis based treatment. Dr. Charman summarized the state of research on evidence-based behavioral treatments. He reported on the challenge of not having enough clinical trials in the field. His conclusions are that ABA treatments are the most rigorously studied and have the strongest base of empirical support; most studies show ABA treatment produces positive outcomes at the group-level; individual studies show that outcomes vary by individual; and recommendations regarding ABA should be made at the clinical level.

The afternoon session began with an update from Michael Huerta, Ph.D., Director, National Database for Autism Research (NDAR). Dr. Huerta said that his team has made significant progress in migrating data from the NIH-funded STAART and CPEA programs since the July meeting. This migration is projected to be completed by May 2010. They are also aggressively pursuing researchers to remind them of their obligation to submit data. Recovery Act funds are being used to support the federation of data, including the Autism Speaks AGRE database, and to supplement grants for NDAR data collection purposes. NDAR will attempt to leverage important scientific breakthroughs in the areas of high-volume data collection; computation and informatics; and collaborating laboratories. This data allows NDAR to associate a single research participant's genetic, imaging, clinical assessment and other information even if the data were collected at different locations or through different studies.

The Services Subcommittee reported on feedback received from the public at its Town Hall meeting held on July 24 in conjunction with Autism Society of America Conference in Chicago. Key findings from the public meeting were the need to provide vocational training; the challenges to implementing a continuum of services for military families and transitioning adults; the importance of addressing family values; and the need for research in best practices.

Dr. Insel reported on the significance of Recovery Act funds in the field of autism research in particular. The preliminary estimate of autism-specific funding is almost $89 million which will be allocated to two-year grants. He said that autism was the only disease to receive a specific funding opportunity, perhaps because the IACC had a strategic plan in place prioritizing funding. Recovery Act funds allowed NIH to fund a short-term objective from each question of the Strategic Plan. The peer-review process for allocating Recovery Act grants included 20 percent public members, including individuals affected by autism. Autism research funding can be found on the new NIH database called RePORT.

Finally, the IACC began its deliberations on its annual update of the Strategic Plan for Autism Research. The deliberations resulted in establishing a process for incorporating the feedback from the Scientific Workshops held September 30-October 1. The IACC members who served as liaisons to each scientific panel will take back themes raised by the IACC to each panel. The panel will review these questions raised by the IACC and the liaisons will report back so the IACC can decide how to integrate into the Strategic Plan. The IACC will begin to work on revisions at its next scheduled meeting on November 10.