Latest iteration of U.S. federal autism committee comes under fire

The U.S. Department of Health and Human Services announced new members of the committee that sets priorities for federal autism research. The memo, released yesterday, names 21 additions and no overlap with previous membership, marking one of several departures from past cohorts.

The Interagency Autism Coordinating Committee (IACC) typically comprises both scientists and advocates. The group convenes through the Autism CARES Act, the most recent version of which former President Joe Biden signed into law in December 2024. That version included a $1.95 billion investment earmarked for autism research.

The new committee includes parents of children with autism, medical practitioners, self-advocates and an autistic high school student.

“I am very concerned about the minimal scientific expertise on the committee, and the degree to which it is stacked with vocal proponents of the discredited notion that vaccines contribute to autism,” says Joshua Gordon, former director of the National Institute of Mental Health and past IACC chair.

Several of the new IACC members have expressed skepticism regarding vaccination or have promoted unconventional treatments. For example, Daniel Rossignol has researched hyperbaric therapy as a possible treatment for autism and Ginger Taylor founded an organization to push against mandatory vaccines, out of a false belief that they can cause autism.

Although about half of the committee is typically composed of members of the federal government, yesterday’s announcement did not include any.

The change in committee composition comes as the HHS has expressed an increased openness to less established areas of autism research. HHS Secretary Robert F. Kennedy Jr. announced last year a goal of understanding the root causes of autism by last September and held a press conference about the department’s plan to expand the use of leucovorin to treat autism traits in children with cerebral folate deficiency. Autism scientists condemned those moves, citing Kennedy’s disregard for decades of research.

In response to The Transmitter’s questions, experts in the field expressed concern over the committee’s new composition and direction. Read what some experts—all of whom are past IACC members—said, in their own words.

Responses have been lightly edited for length and clarity.

David Amaral, distinguished professor of psychiatry and behavioral sciences, University of California, Davis MIND Institute: “The newly appointed committee is not representative of the larger autism research community, or even of autism advocates and funding organizations. The committee represents a very limited scope of backgrounds and opinions that are sympathetic to the eccentric views of the Secretary of Health and Human Services.

“When I was on a previous iteration of the committee several years ago, my major frustration was that the IACC had very little power to actually influence the kinds of autism research that was carried out. We could advocate for greater levels of funding for autism-related science, but this had little or no effect on how funds were allocated within the NIH. So, unless the mandate of the committee changes drastically, this new panel will have little actual impact on autism research for the years to come.

“I know that none of the autism scientist colleagues who were on the previous committee have been invited back. I am actually not familiar with many of the people that are on this new panel. It does seem odd that there is no continuity between previous committees and the current one. I suspect that this will become a platform for much of the autism pseudoscience that is being promulgated by the current administration and the secretary of HHS.”

Aisha Dickerson, associate professor of epidemiology, Johns Hopkins University: “As far as I can tell, none of the previous members remain. That is highly unusual, as often people serve two terms. I had applied to serve for a second term, and based on the number of people listed, those are probably the only people who will be included, and I will not, this round.”

Dena Gassner, senior research scientist, A.J. Drexel Autism Institute, Drexel University: “I was very excited about coming back to IACC for a second term. I felt that the multiplicity of identities that I bring to the table—being autistic, a researcher, having a son on the spectrum, having worked in grassroots-level community-based social work primarily focusing on adults and their families who were living with autism, combined with my Ph.D.—were really good credentials in terms of determining my competency to be on the committee. I felt that we finally had an IACC that was coalescing into the ability to really hear one another. And now I’m afraid that we have lost that diversity of experiences, and I feel that we have lost the voices of science. 

“We’ve gone from seven autistic adults—many of whom were not there to advocate for themselves but for siblings or for other people in the community—to two people. Although I have great faith in those two autistic people, based on reputation and colleagues that we share, I do worry that their having limited to no exposure to the IACC puts them in an incredibly vulnerable position, and, for that matter, it will take a minimum of a year for the others with no experience to get up to speed. This is progress lost. I also have concern at how whitewashed the committee has become. And I’m concerned that the vast majority of the autistic population, people who internalize their features of autism, which we now believe to be between 60 and 70 percent, have minimal representation at that table. I 100 percent agree that people with the highest support needs, people whose autism is externalized and notable and measurable and subjectively observable, need better everything. But what I’m concerned about equally is that this represents a disproportionately small percentage of the population overall.”

Joshua Gordon, former director, National Institute of Mental Health:  “I am very concerned about the minimal scientific expertise on the committee, and the degree to which it is stacked with vocal proponents of the discredited notion that vaccines contribute to autism. It suggests that this new IACC will waste time and money considering nonscientific approaches to autism rather than addressing the important and underserved needs of the autism community.

“I am hopeful that autism research will be unaffected by the committee, because it will and should be ignored by the research community, and it does not have the power to make binding recommendations. I worry, however, that Secretary Kennedy will attempt to use its recommendations as an assault on legitimate scientific inquiry and attempt to divert attention and funds to wild-goose chases.

“To my knowledge, there are no former members on the new committee, but I could be wrong about that. If that is the case, it would be a first for the IACC since its inception, which always strove to have a few members stay on for continuity.”

Walter Koroshetz, former director, National Institute of Neurological Disorders and Stroke: “The committee structure seems to really emphasize care and services. The IACC had been moving in this direction over time. That, of course, is the greatest concern for families affected by autism. So maybe there will be progress in advocating for greater services. It looks to me that the membership completely changed over; usually there are staggered terms, so turnover occurs gradually. The major autism nonprofits that fund substantial research are not included—i.e., the Simons Foundation, Autism Speaks. No Federal members are mentioned. Past IACCs had representatives from the NIH, CDC, CMS, Department of Education, etc. Maybe they are just releasing the non-feds for now?”

David Mandell, professor of psychiatry, University of Pennsylvania Perelman School of Medicine: “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. The group appears stacked to give Secretary Kennedy political cover to continue his assault on life-saving vaccines and to promote unproven treatments.

“It is striking that the descriptions of each member for the most part leave out any of the work they have done to promote untested or disproven theories about cause or treatment. My hope is that, as IACCs have done in the past, they will focus on the need to increase funding and expand care within the many public systems that serve the overwhelming majority of autistic people, including special education, Medicaid-funded services, and vocational and rehabilitation services.”

Matthew Siegel, chief of clinical enterprise in the psychiatry and behavioral sciences department, Boston Children’s Hospital: “IACC members serve a fixed term. We finished our three-year term in January 2025, and now the next set of committee members has been appointed. This committee has always had scientist members from the public, as required by the authorizing law, and I was one of four scientists appointed last time.   

“The new appointees are a group that continues the current trend away from evidence-based, rigorous, scientifically informed expertise guiding important decisions on federal policy, research and funding for the autism population, and toward decision-making based on fringe theories and inaccurate interpretations of poor-quality evidence.”

Alison Singer, president, Autism Science Foundation: “The IACC, for which the broad autism community worked with Congress to create and repeatedly reauthorize, and on which leading scientists, advocates and public servants have devotedly served for over two decades, has now been hijacked by an ideological cult. This will hurt people with autism, those currently alive and those yet to be born, and all who love them. We can confirm that every IACC has had at least one returning member. We are working on a list of returning members in each reconstitution.”

Ivanova Smith, self-advocate and former activist advocate, AtWork!: “I only served one term, and I really liked it. At times it was hard, but the staff were very accommodating and very supportive. And also, my other IACC members were really helpful. There were some meetings that were hard topics, but it was important that we talk about those topics. And I’m really glad that I was able to set my perspective on the IACC.

“I’m excited for the new autistic committee members. I’m supportive of them. But I don’t know about some of the new language that they’re using for IACC. It’s got me concerned that they are more focused on ‘curing’ and combating autism and not on making life better for autistics. I’m really hopeful the autistic members can help educate the other members on the importance of working with our autism to make things better. 

“I’m also really worried that they’re just going to focus on what causes it. I want to know how to make my life better with this condition and not just what caused it, because that doesn’t help the people who already have the condition. And we should be researching things that make it so that we have a better life and that we’re not being institutionalized.”

Helen Tager-Flusberg, professor emerita of psychological and brain sciences, Boston University: “This group of public members represents a radical departure from all past rosters of the IACC. There is a large number of parents, some of whom are leaders of fringe organizations and advocacy groups. There are few scientists, and none are among the leaders in the field. Instead, they have been chosen for the views they hold rather than for their scientific credentials. As a group, these people appear to have been chosen because their views are aligned with those held by the secretary of HHS, who sees autism as a ‘chronic disease’ that is preventable. These are views that are counter to what we know about autism from decades of rigorous science.”

Carrie Wolinetz, principal and chair, Health and Bioscience Innovation Policy Practice Group, Lewis-Burke Associates: “My initial reaction to the new roster is that it seems like the federal members of the committee, of which I used to be one, have been removed, leaving only the newly appointed public members. I don’t know if that’s an administrative oversight or reflective of reality. Personally, I found the balance of federal leaders and members of the public to be crucially important for the IACC’s work, particularly on development of a coordinated strategic plan. That requires understanding of the roles and authorities of the federal agencies for an effective whole-of-government approach to autism.

“The other notable difference is far fewer scientific members on the committee. I think that will present a challenge for another major function of the IACC, which is an annual review of the scientific literature, because the scientific members were able to do a lot of the translation of those findings in concert with their prioritization by the incredible advocates who served. It is, in my experience, very unusual to change this many committee members at one time; terms are typically staggered so there is a balanced mix of institutional knowledge and fresh perspectives.”