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The Federal Response to Autism: A Report From The IACC

The federal panel responsible for coordinating the nation’s autism policy – the Interagency Autism Coordinating Committee (IACC) -- held its first meeting on July 10 since it was reconstituted under last year’s Combating Autism Reauthorization Act (CARA.) The meeting surveyed the landscape of current research and federal funding on autism, but was peppered throughout with expressions of frustration from the public about the seemingly slow pace in making new progress.

The IACC meeting, the first in nearly a year, featured presentations by Secretary of Health and Human Services Kathleen Sebelius, Autism Speaks’ Chief Science Officer and IACC member Geraldine Dawson, Ph.D. and Peter Bell, Autism Speaks’ executive vice president for programs and services. Dr. Dawson presented “Autism and Epilepsy: Clinical Profile across the Lifespan.” Epilepsy affects approximately 15 to 30 percent of people with autism, she said, noting that research into clinical evaluation and treatment has resulted in clinical guidelines developed by the Autism Speaks Autism Treatment Network. (For more on Dr. Dawson’s presentation, read her blog here.)

Bell led a discussion of the growing number of health insurance laws to address coverage of behavioral health treatments related to autism. Thirty-two states, comprising nearly 75 percent of the population, now require autism coverage. Recently, the Office of Personnel and Management (OPM) removed the exclusion of autism treatments for coverage under its plans for federal employees. After a review of the science, OPM re-classified ABA as a medical therapy instead of purely an educational service. As part of the discussion, new IACC Member David Mandell, Sc.D. emphasized that the importance of the movement to cover habilitative care.

Secretary Sebelius emphasized that President Obama had made autism one of his top three national health priorities in 2009. She addressed the impact the Affordable Care Act (ACA) will have on individuals with disabilities. Specifically, the Secretary highlighted how ACA forbids exclusions based on preexisting conditions, requires funding for autism screening, and ends lifetime caps on coverage.

The co-chairs of the Congressional Autism Caucus, Reps. Chris Smith (R-NJ) and Mike Doyle (D-PA), discussed their commitment to advance the federal response to autism. Smith said that while the $693 million authorized by CARA was an important step, it still is not enough to address the autism crisis. He also highlighted the global issues of autism, with an estimated 67 million affected. Doyle called the latest autism prevalence report issued by the CDC “shocking” and said it demonstrates the urgent need to do more to understand and address the causes of autism.

The Director of the National Institutes of Health (NIH,) Francis Collins, M.D., Ph.D., discussed the opportunities for autism through the NIH’s new National Center for Advancing Translational Sciences (NCATS) which will encourage new ideas and provide access to compounds that were never approved for testing. Collins cited progress in early diagnosis through studies on eye movement to help diagnose children between one and three, and that behavioral interventions clearly improve functions when closely followed. But he felt that more research was needed on the causes of autism, particularly in the area of gene-environment interaction. He noted that there has been interesting research on the metabolic functions of pregnant women.

IACC Chair and NIMH Director Thomas Insel, M.D. reported on research developments since the last meetingincluding:

·     A study on predictive diagnostics, using eye gaze as a screening technique, was published in the Journal of Pediatrics

·     Synaptic pathology disorder

·     Genomic risk factors from de novo mutations

·     Environmental risk factors identified in the CHARGE study

·     Biomarker-driven clinical trials

·     Behavioral interventions to pre-empt treatment for at-risk individuals

Susan A. Daniels, Ph.D., acting director of the Office of Autism Research Coordination (OARC) and the IACC’s Executive Secretary, discussed the release of the following committee documents which include a new web tool to search autism research by subject and strategic plan category:

·     2011 IACC Summary of Advances

·     2010 IACC ASD Research Portfolio Analysis Report

·     IACC/OARC Portfolio Analysis Web Tool

·     IACC/OARC ASD Research Publications Analysis

During the public comment session, several speakers raised concerns about the pace and focus of autism research, citing inadequate attention on environmental risk factors such as vaccines, immune autoantibodies, and the use of ultrasounds in pregnancies. According to one analysis that was cited, only seven percent of research funding has been dedicated to environmental causation. The IACC was also criticized for focusing too heavily on early intervention at the expense of adult needs.

The IACC is required to update the strategic plan for autism research by the end of 2012 as required by law. A research subcommittee was designated to prioritize the research objectives in the existing plan, identify gaps in research where new value can be added, and to devise a process to measure progress and delineate between autism-specific research and autism-related research.

The IACC will reconvene by phone in about one month to discuss the public comments

raised during the meeting.

The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.