Autism Panel Targets RFK Jr.’s Agenda

The Independent Autism Coordinating Committee (ACC) — a group formed in response to HHS Secretary Robert F. Kennedy Jr.’s recent overhaul of the federal Interagency Autism Coordinating Committee (IACC) — met for the first time Thursday to discuss a national agenda for autism research.

At its inaugural meeting, the Independent ACC identified several research priorities including genetic biomarkers, co-occurring diagnoses, and a better understanding about profound autism.

“We will create a research agenda for autism that reflects the rapid progress and growing promise of autism science,” said co-founder Alison Singer, president of the Autism Science Foundation. “We will report annually on the key advances in autism research across the translational continuum, including basic research on genes and cells, environmental causes, early detection, therapeutics, and services. The group will also respond quickly to any recommendations made by the federal IACC that are not supported by science.”

The Independent ACC came together rapidly, noted member Helen Tager-Flusberg, PhD, of Boston University. The committee was scheduled to meet the same day as the planned first public meeting of Kennedy’s revamped federal IACC but Kennedy’s group cancelled its meeting 2 weeks ago with no explanation.

In January, Kennedy announced 21 new IACC members — many of whom said they believe childhood vaccines cause autism. None had served on the IACC before.

Originally created by the Autism CARES Act (formerly known as the Combating Autism Act) in 2006, the federal IACC was designed to coordinate federal autism efforts and advise the HHS secretary on autism spectrum disorder, ensuring that a wide range of ideas and perspectives were represented and discussed in a public forum. The law requires the IACC to develop an annual strategic plan for autism research and submit an annual summary of scientific advances to Congress.

Kennedy’s IACC appointments were the latest in a series of attacks on the autism community, Tager-Flusberg noted.

Since Kennedy assumed leadership at HHS in 2025, she noted, there have been substantial reductions in NIH and CDC scientific and program staff, termination of NIH autism grants, and cuts to training and early career funding. These drastic changes in priorities and processes have impacted researchers at all levels within NIH.

During Kennedy’s tenure, HHS also has disseminated false information about acetaminophen and leucovorin, Tager-Flusberg said. A CDC website about vaccines and autism was changed and the FDA removed a page about dangerous autism treatments. “All of this has very significant impacts on the science,” she pointed out.

The one positive impact in the past year was the Autism Data Science Initiative, she added.

Independent ACC member Joshua Gordon, MD, PhD, former director of the National Institute of Mental Health who chaired the federal IACC from 2016 to 2024, noted that “we have the opportunity to supplement the federal IACC and continue the work if the federal IACC is unable to do so.”

“There are some grave concerns that the federal IACC will not be able to continue to do what its true mission is,” Gordon said.

“What is at stake now, given the lack of such diverse representation among the federal members, is not only that there might be a skewed research strategy, but also that the federal IACC as composed has the potential to divide rather than unite the autism community,” he added.

One of the Independent ACC’s goals should be to counter that by inclusion rather than by division, Gordon suggested. “We should not assume that the federal IACC as composed won’t be able to accomplish its mission, but rather we should work hard to try to supplement it when it is not, and encourage members of that group to think more broadly, whether it’s by example of us thinking broadly and being inclusive, or by direction and explicit comments when it goes astray from that mission.”

“There are members of that committee who might come from a given perspective but are nonetheless aware and open-minded and want to accomplish that mission,” he said. “And if we can support them in that endeavor — and help to some extent that group not go off the rails completely — we can also achieve our mission as the Independent ACC.”