A key panel tasked with guiding the federal government’s strategy on autism has been out of commission for most of the year, but amid heightened attention to the developmental disorder, there are now signs that it could soon be revived.
The U.S. Department of Health and Human Services says it is accepting nominations for public members to serve on its Interagency Autism Coordinating Committee, or IACC. The panel, which is comprised of government officials and members of the autism community, is charged with advising the secretary of health and human services and coordinating federal activities related to the developmental disability.
The committee last met in January just before President Donald Trump took office. Since then, his administration has made autism a centerpiece of its health agenda while largely sidelining leading advocacy groups and longtime researchers.
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In a notice issued last week, HHS indicated that “nominations of individuals from all U.S. states and territories, and individuals representing a range of lived experience, community service perspectives, and/or professional expertise within the autism community are encouraged” for the IACC.
The committee must include at least three members who are diagnosed with autism, three who are parents or legal guardians of someone who is on the spectrum and a minimum of three members who represent leading autism research, advocacy and service organizations, according to the IACC charter.
Members will be selected by HHS Secretary Robert F. Kennedy Jr. “from the pool of submitted nominations and other sources as needed to meet statutory requirements and to form a balanced committee that represents a broad range of expertise and perspectives within the autism community in the United States and its territories,” the notice indicates.
The step toward restarting the IACC comes as the Trump administration is pushing several autism efforts.
Just last week, the National Institutes of Health announced $50 million in grants for 13 projects to study causes and treatments of autism and the Centers for Disease Control and Prevention indicated this month that it plans to fund a study on the long-discredited link between vaccines and autism.
Meanwhile, Trump and Kennedy held a news conference to announce that the administration is working to approve a drug to treat autism and is also adding a warning to Tylenol over a “possible association” with autism when the medication is taken during pregnancy. Both moves drew the ire of many autism experts and medical associations who say that there is insufficient evidence to support either action.
At the event, Trump repeatedly advised expectant mothers against taking Tylenol unless they have an extremely high fever, telling them to “tough it out” instead, and urged parents to space out and delay their children’s vaccines.
In a joint statement endorsed by more than 20 autism and disability groups, advocates derided the Trump administration’s approach and called out the lack of input from stakeholders.
“Claims that autism is ‘preventable’ by taking — or not taking — certain medications are not supported by scientific consensus and serve only to perpetuate stigma against autistic people,” reads the statement from The Arc of the United States, the American Association of People with Disabilities, the Autism Society, the Autistic Self Advocacy Network and other organizations. “Autistic people deserve respect and support. There are many policy and program changes HHS could pursue that would materially improve the lives of autistic people and our families. Avenues to provide suggestions have been limited. The only federal body specifically designed to include engagement from the autism community, the Interagency Autism Coordinating Committee (IACC), has not convened since the start of the Trump administration.”
Sam Crane, a self-advocate who served on the most recent iteration of the IACC, expressed concerns about what the future of the committee could look like given the current landscape.
“I’m a bit nervous that the IACC will be politicized much as other parts of the NIH and CDC have been. There is a real risk that the next IACC will have a membership stacked with people advocating further research into unscientific, fringe theories of causation, as well as dangerous and disproven ‘treatments,’” Crane said. “There is also a risk that this administration will try to exclude organizations that have been critical of its autism and health care policies, which would be a serious problem. IACC will not benefit our community unless it is truly representative of it — including ensuring a critical mass of autistic IACC members and representation from major autism science and advocacy nonprofits.”
HHS said that individuals can nominate themselves or others to serve on the IACC through Nov. 10. Officials with the agency did not respond to questions about why new members were not sought sooner and when the new committee is expected to be appointed and convene again.
