The first public meeting of US autism advisers – notably, since Robert F Kennedy Jr reshaped the committee – was cancelled recently with few details, coinciding with the creation of a rival organization that has prompted some questions within the autistic community about their focus.
Kennedy, the secretary of the US Department of Health and Human Services (HHS) who has long argued for a debunked link between vaccines and autism, chose entirely new members for the Interagency Autism Coordinating Committee (IACC) in late January, with fewer autistic people and several anti-vaccine advocates.
The first public meeting was planned for Thursday, but it was cancelled on 7 March with no new date offered.
The IACC is one of the lesser-known advisory committees, but it makes recommendations for nearly $2bn in federal research spending on autism. It can also make recommendations about autism across the federal government – on housing, defense, education, labor, social services and more.
A new, separate yet similarly named organization, called the Independent Autism Coordinating Committee (I-ACC), was announced on 3 March as a pro-science group that would make research recommendations for private donors and institutions, amid growing concerns about the federal committee’s alignment with Kennedy.
The new, independent committee joins a growing movement of organizations rising up in the gaps of federal leadership, experts say – but critics also expressed concerns about the new committee’s approach.
There’s only one autistic person on the new committee, and some members have pushed for a separate “profound autism” category, which others in the autistic community say is not science-based.
The federal committee was formed in 2006 with the Combating Autism Act – an approach that positioned autism as an epidemic to be eliminated, which officials seem to be returning to under the second Trump administration, said Steven Kapp, a senior lecturer in psychology at the University of Portsmouth. By law, the 21-person federal committee must include three autistic members; before Kennedy replaced all of the members, there were seven autistic members of the public and one autistic member from the federal workforce, including several people of color and women.
The federal committee is now a “sham” that Kennedy may use to rationalize bad science, said Matt Carey, who previously served on the committee.
“It’s like his ACIP,” Carey said, referring to the Advisory Committee on Immunization Practices, which Kennedy similarly overhauled. “The IACC is selected to give him the answers he wants.”
Several of the members are anti-vaccine advocates and have promoted dangerous and ineffective “treatments” for autism, including a heavy-metal removal process called chelation, hyperbaric oxygen chambers and industrial bleach enemas – all of which the FDA once warned about on a now-deleted webpage.
The federal committee will “fulfill President Trump’s directive to bring autism research to the 21st century and support breakthroughs in autism diagnosis, treatment and prevention”, said HHS spokesperson Emily Hilliard. The meeting has been postponed indefinitely, and “further information will be shared as available”, she said.
Autistic people like Zoe Gross, director of advocacy at Autistic Self Advocacy Network (ASAN), are worried the federal committee will fund research on, for example, the long-debunked idea that vaccines cause autism, which she called “tantamount to setting money on fire – except worse than that, because not only will they be wasteful of government funds, they’ll also be disastrous for public health”.
A new, science-driven organization could work to counteract moves like these, Gross said – but she’s concerned about the makeup and potential priorities of the new independent committee.
“There’s not many autistic people there, fewer than even the fraudulent IACC has, which isn’t a good look,” Gross said.
Some of the members are also affiliated with the National Council on Severe Autism and have advocated for making “profound autism” its own label.
The conversation around “severe” or “profound” autism is “not really a clinical debate. It’s a policy discussion in disguise as a clinical debate,” Gross said.
Separating different types of autism diagnoses in this way is “not scientifically justified”, said Kapp, who is autistic.
“Despite efforts, no independent research teams have been able to identify valid subtypes of autism,” he said.
Alison Singer, the president of the Autism Science Foundation, which helped form the new committee, is a controversial figure in the autistic community. In 2025, she said Kennedy deserved credit for “wanting to study the causes of autism”, and she has said the prevention of autism should be a “strong focus” of scientific research.
Autistic advocates say autism does not need to be prevented, and they worry about policies that would increase institutionalization and segregation of autistic people, “whether that’s in housing, education or employment”, Gross said. Instead, autistic people should be included and supported in their communities, she said.
The independent committee has a genuine interest in science, Kapp said. Their success “depends on how willing the leadership would be to not just reach out to people, for showing that there’s representation, but also for genuine listening across the organization and for genuine compromise” and room for disagreement, he said.
“My hope is that they will change,” Gross said. The independent committee’s first meeting is also planned for Thursday, to coincide with the now-cancelled federal committee meeting.
The independent committee is working to add new members, said David Mandell, professor of psychiatry at the University of Pennsylvania and a founding member of the committee.
“This group was put together very quickly,” Mandell said. One of the first items of business should be to ask who is represented and who is missing, “and how can we increase and enhance our ranks so that all important perspectives are represented?” he said. He noted that some people and groups were invited but chose not to participate in the committee.
Mandell also said that the independent group’s name may change because it “has a mission that is much narrower” than the federal committee’s.
“We’re really very focused on: ‘What should the research agenda be?’” he said. He hopes the group is able to set the tone for the future of autism studies.
Often, scientists are “rushing” to combat misinformation “after somebody has already let loose in the world something incorrect”, Mandell said.
“The idea that we could proactively identify what a research agenda should look like in autism and present that to private funders, to the public, and hopefully have it ready for when there’s a change in administration and another opportunity to fund high-quality science, that it will be ready then, too – that was very appealing,” he continued.
The conversation should always be evidence-based, Mandell emphasized: “What I’m hoping for [with] this independent group is that whatever people bring to the table, they cite their sources, and that those be rigorous, validated sources.”
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