Independent autism experts panel meets in Washington to push back against HHS research agenda

A newly formed group of independent autism researchers and disability advocates convened in Washington this week to put forward a research agenda that directly contradicts the direction being set by the Department of Health and Human Services under Secretary Robert F. Kennedy Jr. The meeting was organized in explicit response to Kennedy's recent appointment of 21 new members to a federal autism advisory panel, a group that mainstream scientists say does not reflect the current evidence base on autism.

The independent panel included researchers from Johns Hopkins University, the University of California San Francisco, and the Kennedy Krieger Institute, along with autistic self-advocates and representatives from several national disability organizations. Their stated goal was to produce a written research framework that could be submitted to Congress and used to counter what several participants described as an ideologically driven redirection of federal autism funding.

What RFK Jr.'s HHS has actually proposed on autism

Kennedy has publicly promoted the idea that autism rates have increased because of environmental toxins, including heavy metals, food additives, and childhood vaccines. His position on vaccines contradicts a scientific consensus established through dozens of large-scale studies, including a 2019 Danish cohort study covering over 650,000 children that found no association between the MMR vaccine and autism diagnosis. Kennedy has disputed the interpretation of that and similar studies.

At HHS, Kennedy's team has signaled interest in redirecting research funding toward investigating environmental and dietary causes of autism, with less emphasis on the genetic and neurodevelopmental research that has dominated the field for the past two decades. The new federal autism advisory panel members appointed in February 2025 included several individuals with no published record in autism research and at least two who have previously promoted vaccine-autism claims that were rejected by peer-reviewed literature.

What the independent researchers are proposing instead

The independent panel's draft research framework prioritizes three areas. The first is expanding understanding of the genetic architecture of autism, building on work like the SPARK study run by the Simons Foundation, which has enrolled over 50,000 autistic individuals and their families and identified more than 100 genes associated with autism risk. The second is improving access to evidence-based support services for autistic people across the lifespan, including employment support for autistic adults, an area where federal research funding is substantially lower than funding for childhood interventions. The third is conducting research designed and led with meaningful autistic participation.

The framework document explicitly rejects the framing of autism as a disorder caused by preventable toxin exposure. Dr. Alicia Bhatt of Johns Hopkins, one of the panel's lead organizers, said at the Washington meeting that directing federal resources toward investigating vaccine causation diverts funding from research that autistic people and their families have consistently said they need, specifically research on quality of life, mental health supports, and reducing barriers to employment and independent living.

The broader context of the Trump administration's approach to federal health science

The autism dispute is part of a broader pattern of tension between the Trump administration and federal scientific agencies. Kennedy's HHS has also clashed with the CDC over vaccine scheduling recommendations and has initiated reviews of dietary guidelines that involved removing several scientists from advisory panels before their terms ended. The National Institutes of Health, which funds the majority of federally supported autism research through its National Institute of Mental Health and the Eunice Kennedy Shriver National Institute of Child Health and Human Development, has seen several senior program officers reassigned or leave since the new administration took office.

Congress has some oversight authority over how HHS allocates research funding, and the independent panel's decision to submit its framework directly to congressional offices reflects a strategy of working around HHS rather than through it. Senator Patty Murray of Washington, the ranking Democrat on the Senate Health, Education, Labor, and Pensions Committee, accepted a copy of the framework document and said her office would examine whether congressional appropriations language could be used to direct autism research funding toward evidence-based priorities.

Autistic self-advocates and the question of research priorities

One consistent tension in autism research funding debates is that autistic people themselves often have different research priorities than parents of autistic children or government health agencies. The Autistic Self Advocacy Network, which participated in the Washington meeting, has long argued that federal autism research overemphasizes causation and cure-seeking at the expense of research into support services, mental health, and systemic barriers faced by autistic adults. A 2016 survey commissioned by ASAN found that while 68 percent of federal autism research dollars went toward biology, genetics, and causation, autistic adults ranked those as their lowest research priorities.

Kennedy's approach does not resolve that tension. Redirecting research toward environmental causation still prioritizes the question of why autism happens over the question of how autistic people can be better supported. The independent panel's framework, by explicitly including lifespan support and autistic-led research as priorities, attempts to address the gap that autistic advocates have raised for years.

What the federal autism advisory panel appointment process actually involves

The Interagency Autism Coordinating Committee, the federal body Kennedy is reshaping through new appointments, was established by the Combating Autism Act of 2006 and reauthorized multiple times since. It is required under law to include at least one autistic person and at least one parent of an autistic child among its members, alongside federal agency representatives and outside researchers. The law gives the HHS Secretary broad discretion over outside member appointments, which is the authority Kennedy used to install the 21 new members in February 2025.

Several of the removed or replaced members had served on the IACC for multiple terms and had extensive published research records in autism. Dr. James Battey, who had served as the IACC's federal co-chair while directing NIDCD, was among those whose roles were changed in the recent restructuring. The IACC is scheduled to hold its next public meeting on April 14, 2025, which will be the first opportunity to observe how the newly constituted committee operates in practice.