IACC Chairman Insel Testifies Before House Committee on the Combating Autism Act and the Accomplishments of the IACC
Monday, July 11, 2011
Testifying before the U.S. House of Representatives Energy and Commerce Subcommittee on Health on July 11, Dr. Thomas Insel spoke about the Combating Autism Act of 2006 and the successful federal coordination and public-private partnership efforts that have resulted from the Interagency Autism Coordinating Committee (IACC) that was created as part of the legislation. Without reauthorization of the Combating Autism Act, the IACC will sunset in September 2011. Representatives Christopher Smith (R-NJ) and Michael Doyle (D-PA) introduced the Combating Autism Reauthorization Act of 2011 (H.R. 2005) on May 26, 2011, a bill that, if enacted, would reauthorize the IACC and other federal programs that conduct research and provide services for people with autism spectrum disorders (ASD) and their families.
During his testimony, Dr. Insel, who is the director of the National Institute of Mental Health and chair of the IACC, focused on the work of the IACC in the five years since the Act was enacted, noting that the committee has "really served to focus efforts across the federal government by bringing federal agency representatives for research, services, and education, as well as parents, people with ASD, scientists, clinicians, and others together to work as a team…"
He praised the dedication of the members and noted that the collaboration between public and private members has fostered important partnerships and ensured that a range of voices and perspectives were heard. The committee's strategic plan has guided national research efforts by creating a comprehensive blueprint for autism spectrum disorders (ASD) research.
Since the Combating Autism Act was enacted in 2006, there has been remarkable progress in the identifying symptoms of autism early, in understanding how commonly autism occurs in the community, and in developing effective interventions, particularly for very young children. This research is "moving rapidly toward translation into practical tools that can be used in clinics and community settings to change outcomes for people with ASD," Dr. Insel said.
Health Subcommittee Members asked Dr. Insel a variety of questions, ranging from estimates of autism's economic impact on families and society to racial disparities in diagnosis and recent research advances in the field. Asked about a recent study that suggests environmental risk factors may play a greater role in autism risk than previously thought, Dr. Insel stressed the importance of understanding how both genetics and environment interact to influence risk. He noted that, while less is known about environmental risk factors for autism than genetic factors, a number of projects were underway to follow children from before birth to early childhood to study potential environmental exposures.
When asked about the most significant gaps in ASD research, Dr. Insel cited the lack of knowledge on effectively supporting the transition from adolescence to adulthood and fixing the inconsistent service delivery systems across the country.
During the hearing, Dr. Insel was also asked how the IACC has been successful. He pointed to the committee's achievement in improving coordination between federal agencies as well as between federal agencies and private foundations. He noted the importance of creating specific public-private partnerships around key areas of research interest and community need, citing the Autism Treatment Network (ATN) as an excellent example. The ATN is a partnership between Autism Speaks, the National Institutes of Health (NIH), and the Health Resources and Services Administration (HRSA) that creates a comprehensive model of care for children and adolescents with autism. This network helps involve families in research and provides the latest treatments directly to the community.
In addition, he pointed to the importance of public participation in the committee's activities, creating a public forum for the community's needs to be heard. He credited the families of people with ASD for their tireless work on behalf of the autism community, saying , "There's no group of people that I've met that are more inspiring than the families of people with autism. These are really dedicated parents, who make things happen."
While much has been accomplished, Dr. Insel emphasized the importance of continued Congressional support to build on the advances enabled by the Combating Autism Act of 2006. "While there's been unequivocal progress, much work remains to be done. The reauthorization will be critical for continuing this momentum and the stability of the IACC over the next three years," he said. Dr. Insel stated that reauthorization was only one step and that appropriations were critical for continued progress. He likened the reauthorization to obtaining a driver's license, noting, "The agencies serve as our vehicle. We've got a great road map through this strategic plan that the IACC has put together, but at the end of the day, whether we have gas in the car or not depends on [the availability of funds appropriated by Congress]." If enacted, the Combating Autism Reauthorization Act of 2011 (H.R. 2005) would enable the committee to continue coordinating federal agency and private efforts to advance ASD research and enhance services to meet the needs of people with ASD and their families.
- The text of H.R. 2005 (PDF – 163 KB)
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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.
