After more than a year, federal health officials are reviving a key panel tasked with guiding the government’s strategy on autism, but the new committee members and the way in which they were appointed are raising concerns.
The U.S. Department of Health and Human Services announced Wednesday that 21 new members were appointed to the 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.
“These public servants will pursue rigorous science and deliver the answers Americans deserve,” HHS Secretary Robert F. Kennedy, Jr. said of the new members.
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Traditionally, the group’s public membership has reflected a mix of self-advocates and family members, academics and representatives of various autism advocacy groups.
The latest selection, however, excludes representatives from some of the most established groups in research and advocacy like the Simons Foundation and Autism Speaks in favor of several new members who have a history of criticizing vaccines. They include John Gilmore, founder and executive director of the Autism Action Network; Honey Rinicella, executive director of the Medical Academy of Pediatrics and Special Needs; Ginger Taylor, a parent advocate; and Toby Rogers, a fellow at the Brownstone Institute for Social and Economic Research; among others.
“The IACC used to be an advisory group that included public members who represented a wide variety of lived and professional experiences, but who respected scientific evidence. The bulk of the recently appointed members appear to be people who adhere to untested, disproven, and sometimes dangerous ideas about what causes autism and the best ways to care for autistic people,” said David Mandell, a professor of psychiatry and an autism researcher at the University of Pennsylvania who has served on the IACC. “The group appears stacked to give Secretary Kennedy political cover to continue his assault on life-saving vaccines and to promote unproven treatments.”
Mandell noted that the biographical information provided by HHS for each of the new members “for the most part leaves out any of the work they have done to promote untested or disproven theories about cause or treatment.”
HHS opted not to reappoint any existing IACC members who were eligible for a second term. And, the new IACC includes fewer self-advocates — only the three required by law, down from seven, according to Sam Crane, a self-advocate and disability law expert who has served two terms on the IACC.
“This is a major step backwards for the autistic community, which deserves meaningful representation in all conversations that concern us,” she said.
Meanwhile, the Autism Science Foundation questioned whether the new slate of members satisfies the legal requirements for the IACC, which is supposed to include representation from leading research, advocacy and service organizations for individuals with autism.
“The newly constituted IACC represents a complete and unprecedented overhaul, with no continuity from prior committees and a striking absence of scientific expertise,” said Alison Singer, president of the Autism Science Foundation, who served three terms on the IACC.
The manner in which the appointments were revealed is also raising concerns. In a highly unusual break from the past, many of the new members took to social media to announce their appointments well ahead of the HHS announcement, in some cases before the deadline for nominations had even passed.
In addition, a “standard orientation meeting” for members occurred last week before the appointments were made public, according to Andrew Nixon, an HHS spokesman.
“Ordinarily you wouldn’t have people announcing on social media that they’ve been selected, much less sworn in, before the roster is published,” Crane said. “I don’t remember having any sort of ‘orientation’ meeting either — statutorily, all meetings of IACC need to be publicly noticed and open to the public. It’s a really troubling lack of transparency.”
Prior to the recent orientation meeting, the IACC last met in January 2025. Since that time, the Trump administration has focused heavily on autism. The National Institutes of Health announced $50 million in grants for 13 projects to study autism causes and treatments and the Centers for Disease Control and Prevention indicated that it plans to fund a study on the long-discredited link between vaccines and the developmental disability.
In addition, during a September news conference, administration officials said that they were working to approve a drug to treat autism and adding a warning to Tylenol over a “possible association” with autism when the medication is taken during pregnancy. The announcements were criticized by many medical associations and experts in the field who said that there is inadequate evidence to support either action.
