In The Politics of Autism, I discuss the Interagency Autism Coordinating Committee and research priorities.
From the Autism Science Foundation:
Today, the U.S. Department of Health and Human Services (HHS) announced a complete reconstitution of the Interagency Autism Coordinating Committee (IACC), appointing 21 new members while excluding the scientific and advocacy leadership that has historically guided the committee.O. Rose Broderick at STAT:
The IACC, created through the efforts of the broad autism community’s work with Congress and sustained for more than two decades by the dedicated service of leading scientists, advocates, and public servants, has been fundamentally compromised. The current committee has been hijacked by a narrow ideological agenda that does not reflect either the autism community or the state of autism science. By sidelining rigorous, evidence-based inquiry, this shift will stall scientific progress, distort research priorities, and ultimately harm people with autism and all who love and support them.
“The newly constituted IACC represents a complete and unprecedented overhaul, with no continuity from prior committees and a striking absence of scientific expertise,” said Autism Science Foundation President Alison Singer, who served three terms as an IACC public member. “Consistent with other federal advisory committees under Secretary Kennedy’s leadership, like the Advisory Committee on Immunization Practices (ACIP), committee members have been cherry-picked to reach a predetermined conclusion, not to seek broad, good-faith input from qualified experts and stakeholders.”
This committee does not reflect the breadth of the autism community. It disproportionately represents a very small subset of families who believe vaccines cause autism, while excluding the overwhelming majority of autistic individuals, families, and advocates who support evidence-based science. Notably, none of the advocacy organizations represented on the committee fund autism research. Past IACCs included a wide range of viewpoints and expertise, enabling meaningful discussion of scientific advances and policy priorities. That balance is now gone.
Beyond concerns about expertise and representation, there are serious questions about whether the current committee complies with the law. Federal statute requires representation by leading research, advocacy, and service organizations for individuals with autism spectrum disorder, as well as the capacity to summarize advances in autism research on causes, prevention, treatment, screening, diagnosis, interventions, and access to services and supports across the lifespan. We have little confidence that the current IACC can fulfill these responsibilities or reflect current scientific understanding.
As constituted, this committee neither represents the autism community nor advances its interests. It undermines decades of progress toward evidence-based policymaking and risks reversing hard-won gains in autism research, services, and public trust in science.
“Much like the vaccine advisory panels, which [promote] improper false information, the American people are going to be lied to by the IACC under the wrong leadership,” said Joshua Gordon, the former director of the National Institute of Mental Health and chair of IACC for eight years between 2016 and 2024.
Six people have publicly announced their selection onto the autism committee in recent weeks, including John Gilmore, executive director of the Autism Action Network; Honey Rinicella, executive director of the Medical Academy of Pediatric and Special Needs; Jennifer Philips, founder of Make a Stand 4 Autism; Ginger Taylor, former director of the Maine Center for Vaccine Choice; Tracy Slepcevic, organizer of the Autism Health Summit and host of a fundraiser for Kennedy during his failed presidential bid; and Caden Larson, a nonspeaking autistic man from Minnesota.
