New 2010 IACC Strategic Plan Emphasizes Research Infrastructure, Non-Verbal People with ASD and the Full Spectrum from Young Children to Adults

Wednesday, February 3, 2010

The first update to the Interagency Autism Coordinating Committee (IACC) strategic plan for autism research received unanimous approval from the 19-member advisory group that drafted the recommendations. The IACC, created under the Combating Autism Act (CAA) of 2006, finalized the 2010 Plan at their meeting on January 19, 2010. The document gives guidance on what areas of research should be pursued to advance the understanding of autism, a developmental disorder marked by impaired development of social and communication skills that affects 1 in 110 children in the U.S. The Plan, which is annually updated as required by the CAA, is advisory to the Department of Health and Human Services and serves as a basis for partnerships with other federal agencies and private organizations involved in autism research and services.

This first update to the Plan included extensive input from the public and the scientific community to identify areas of research where significant scientific advances provided new research opportunities or areas where more attention was needed.

"The IACC heard the need for more research on adults, more focus on non-verbal people with ASD, and the need for better infrastructure for research – from bio-repositories to better surveillance," said Dr. Thomas Insel, M.D., who serves as the IACC Chair and the Director of the National Institute of Mental Health, part of the National Institutes of Health (NIH).

This input led to substantial revisions to the 2009 Plan. The new 2010 Plan adds 32 new research objectives and contains an entirely new chapter on infrastructure needed to support autism research.

"On this first update of the Plan, the IACC really put its shoulder to the wheel," Dr. Insel said of the extensive revision.

The new objectives cover topics such as health disparities in early diagnosis, characterization of children with reported regression, and the biology and treatment of co-occurring conditions. The additional chapter on infrastructure development includes objectives aimed at enhancing the ASD research workforce, data sharing, surveillance programs, biological specimen repositories and communication and implementation of research findings. In addition, the updated Plan more fully addresses the needs of the people with ASD across the spectrum, from young children to adults, and places new emphasis on both non-verbal and cognitively-impaired people with ASD.

The process that yielded these updates included a two-day scientific workshop where researchers, clinicians, and personal stakeholders selected by the IACC convened to discuss gaps in the 2009 strategic plan, new research opportunities, and priorities. The workshop participants considered public comments on the existing Plan that had been received during a Request for Information issued during the summer of 2009. They also considered a portfolio analysis of the ASD research (PDF – 148 KB) recently funded by federal agencies and private organizations, in addition to a summary of major research advances in the field. After synthesizing this information, the workshop members produced a set of recommendations for the update, which were translated by members of the IACC into edits to the Plan and voted on by the full committee.

The 2010 Plan is released after a landmark year for autism research, with the American Reinvestment and Recovery Act (ARRA). Total NIH funding for ASD research increased from $118 million in the 2008 fiscal year to $196 million in FY 2009, including $132 in non-ARRA funding and $64 million in ARRA funds. The IACC is currently in the process of launching plans for the 2011 update and has discussed the importance of tracking how recent grants and research outcomes in both the public and private sector align with the objectives in the Plan.

With recent reports that autism spectrum disorder (ASD) is becoming more prevalent, the work of the IACC becomes increasingly urgent. The 2010 Strategic Plan will serve as an important guide for future research efforts to understand the disorder, develop effective interventions and improve the quality of life for people with ASD and their families.

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The IACC is a Federal advisory committee that was created by Congress in an effort to accelerate progress in ASD research and services. The IACC works to improve coordination and communication across the Federal government and work in partnership with the autism community. The Committee is composed of officials from many different Federal agencies involved in autism research and services, as well as people with ASD, parents, advocates, and other members of the autism community. The documents and recommendations produced by the IACC reflect the views of the Committee as an independent advisory body and the expertise of the members of the Committee, but do not represent the views, official statements, policies or positions of the Federal government.  For more information on the IACC, please visit: www.iacc.hhs.gov.