Federal Autism Advisory Committee Holds First Meeting Since Kennedy Replaced Scientific Experts with Activists

HHS Secretary Robert F. Kennedy Jr. fired most scientific experts from the Interagency Autism Coordinating Committee and replaced them with activists and advocates, including members who share his views linking childhood vaccines to autism despite researchers finding no credible connection. The restructured committee met for the first time in 19 months in Bethesda, Maryland, focusing on profound autism affecting about a quarter of people on the spectrum. Chairman Sylvia Fogel, a Harvard Medical School psychiatrist, proposed redefining profound autism to emphasize functional limitations rather than the 2022 Lancet definition based on IQ below 50 and minimal speaking ability. The committee voted to recommend this definitional change and urged new safety measures and Medicaid guidelines, though many federal members abstained after being given only days instead of the usual weeks to review proposals. The Simons Foundation, Autism Speaks, and Autistic Self-Advocacy Network lost their seats, fundamentally reshaping influence over the federal autism research agenda and its hundreds of millions of dollars in funding.

Kennedy's Controversial Restructuring of the Federal Autism Committee

• ▪Several new Interagency Autism Coordinating Committee members have views that align with Kennedy's claim that childhood vaccines can cause autism
• ▪The Simons Foundation, Autism Speaks, and the Autistic Self-Advocacy Network no longer have seats on the Interagency Autism Coordinating Committee
• ▪Robert F. Kennedy Jr. fired most of the Interagency Autism Coordinating Committee's scientific experts and replaced them with activists and advocates
• ▪Most of the Interagency Autism Coordinating Committee's public members are new and haven't served on the IACC before
• ▪The Interagency Autism Coordinating Committee helps set the federal autism research agenda and the hundreds of millions of dollars that come with it

Debate Over Defining and Supporting 'Profound Autism'

• ▪The Interagency Autism Coordinating Committee voted to encourage Medicaid to establish guidelines for diagnosis and possible health risks
• ▪Sylvia Fogel is chairman of the Interagency Autism Coordinating Committee
• ▪Sylvia Fogel's proposed definition for profound autism excluded intellectual disability in favor of focusing on functional limitations
• ▪The Interagency Autism Coordinating Committee voted to urge the Department of Health and Human Services to implement coordinated safety measures to help protect autistic people who wander from their caregiver
• ▪Andrea Beckel-Mitchener is part of the National Institutes of Mental Health and deputy director of the NIH BRAIN Initiative
• ▪The Interagency Autism Coordinating Committee met for the first time in 19 months in Bethesda, Maryland
• ▪The Interagency Autism Coordinating Committee focused on how to help autistic people with the highest support needs during its meeting
• ▪Sylvia Fogel is a psychiatrist and Harvard Medical School instructor
• ▪A 2022 article in The Lancet defined profound autism to include people who were minimally speaking and had an IQ below 50
• ▪The Interagency Autism Coordinating Committee voted to recommend changing the existing scientific definition of people with profound autism

Procedural Violations and Conflicts During the Committee Meeting

• ▪Sam Crane is an autistic self-advocate and former public member of the Interagency Autism Coordinating Committee
• ▪Ginger Taylor is a parent of an autistic kid and former director of the Maine Coalition for Vaccine Choice

Perspective of New Interagency Autism Coordinating Committee members aligned with Kennedy

• ▪The existing scientific definition of profound autism based on IQ below 50 and minimal speaking ability needs to be changed

Perspective of Displaced scientific experts and established autism organizations

• ▪Sam Crane, a former public member of the Interagency Autism Coordinating Committee, was removed as part of the restructuring
• ▪The removal of the Simons Foundation, Autism Speaks, and the Autistic Self-Advocacy Network from the Interagency Autism Coordinating Committee eliminates established institutional expertise