independent researchers and advocates convened in Washington, D. C., this week after the federal Interagency Autism Coordinating Committee’s first public meeting was cancelled on 7 March (ET). The new Independent Autism Coordinating Committee (I-ACC) says it will review autism science and recommend research priorities to private donors and institutions. The gathering surfaces a split between scientists and the reconstituted federal panel over membership, expertise and the direction of research funding.
Independent group’s aims and contested makeup
The Independent Autism Coordinating Committee marched into public view as a self-styled pro-science counterweight to the federal panel. The new group assembled to identify research gaps and to suggest priorities for improving the lives of autistic people, including more rigorous trials of therapies and better communication tools. Joshua Gordon, who chaired the IACC when he led the National Institute of Mental Health and is now a member of the independent committee, warned, “There are some grave concerns that the federal IACC will not be able to continue to do what its true mission is. “
Critics have noted the new independent committee’s own limits: it includes only one autistic member, and some participants have pushed for a separate “profound autism” category—an approach others in the autistic community contest. The independent committee’s announcement on 3 March positioned it to make recommendations for private donors and institutions at a moment when some worry federal guidance is shifting.
Federal upheaval, experts and safety concerns
The federal Interagency Autism Coordinating Committee was reshaped by the Department of Health and Human Services under Secretary Robert F. Kennedy Jr., producing a slate of appointees that critics say reduced autistic representation and included vaccine skeptics. Craig Snyder, policy lead at the Autism Science Foundation, characterized the federal panel as having a “striking absence of scientific expertise. ” Steven Kapp, a senior lecturer in psychology at the University of Portsmouth, placed the federal committee’s roots in earlier law and programs designed to mobilize autism research and services.
Several members of the federal panel have promoted interventions widely regarded by scientists as unproven or dangerous. Matt Carey, who previously served on the federal committee, called the revamped panel “a sham” and said, “It’s like his ACIP. The IACC is selected to give him the answers he wants. ” HHS spokesperson Emily Hilliard defended the federal committee’s aims, saying it will “fulfill President Trump’s directive to bring autism research to the 21st century and support breakthroughs in autism diagnosis, treatment and prevention. “
Reactions from advocates and next steps
Researchers and advocates at the independent meeting laid out practical research questions—such as testing promising therapies in rigorous trials and improving clinical guidance—that they say the federal panel may no longer prioritize. Craig Snyder and other members emphasized the need to preserve evidence-based science in decisions that shape research dollars and clinical practice. Autistic advocates have also raised alarms about membership balance and the kinds of research likely to receive funding.
The federal committee’s public meeting was postponed indefinitely, and the independent group says it will continue to meet to set research recommendations for non-federal funders. Observers expect further public sessions from the independent committee and continued scrutiny of federal appointments as stakeholders press for clarity on research priorities and safety. The contest between the federal IACC and the new independent committee will likely shape what studies receive support and how the autism community is represented going forward; the debate remains active as of 7 March (ET), and the independent effort says it will return to public-facing work in the weeks ahead.
