An influential federal committee that advises the health secretary on all things autism and shapes federally funded autism research and support services held an orientation Thursday for new nonfederal members, according to two sources familiar with the meeting.
It was the first gathering of the next iteration of the Interagency Autism Coordinating Committee (IACC), which recently added multiple members who align with health secretary Robert F. Kennedy Jr.’s claim that childhood vaccines can cause autism — decades of scientific research has yet to find any conclusive evidence for such a link. Thursday’s orientation happened before the Department of Health and Human Services has made any formal announcements about the new members of the committee, and neither the committee’s website nor the Federal Register has published any advance information about a gathering of the committee members.
Researchers and autistic self-advocates worry that the new members’ beliefs and the lack of transparency about the committee and its activities are a sign that the influential advisory group could become a vehicle to spread misinformation about the condition and direct federal research dollars into long-debunked claims.
“This is an outrageous process,” said Helen Tager-Flusberg, a former committee member and director of the Center for Autism Research Excellence at Boston University. “This does not bode well for future [IACC] recommendations. It won’t be representing the autism community more broadly.”
The committee was on hiatus for 2025, a break that has happened in previous years. But many people in the autism community found it notable given Kennedy’s rhetoric surrounding the neurodevelopmental disorder — calling a rise in rates an “epidemic” and vowing to “end” autism — and his promise to use every lever of the federal government to find the causes of autism, including a $50 million research initiative, even though much of its etiology has been established by decades of robust research.
Stacking the autism advisory group with members aligned with Kennedy’s Make America Healthy Again movement is not without precedent. In June, the health secretary fired every member of a key advisory committee that helps the Centers for Disease Control and Prevention set vaccine guidance, and soon after appointed new members who share his vaccine criticism — including the group’s chair, who recently questioned the necessity of the polio vaccine.
“Much like the vaccine advisory panels, which [promote] improper false information, the American people are going to be lied to by the IACC under the wrong leadership,” said Joshua Gordon, the former director of the National Institute of Mental Health and chair of IACC for eight years between 2016 and 2024.
Six people have publicly announced their selection onto the autism committee in recent weeks, including John Gilmore, executive director of the Autism Action Network; Honey Rinicella, executive director of the Medical Academy of Pediatric and Special Needs; Jennifer Philips, founder of Make a Stand 4 Autism; Ginger Taylor, former director of the Maine Center for Vaccine Choice; Tracy Slepcevic, organizer of the Autism Health Summit and host of a fundraiser for Kennedy during his failed presidential bid; and Caden Larson, a nonspeaking autistic man from Minnesota.
HHS officials did not comment about the new members, or explain when the rest of the members would be selected — the body is handpicked from federal officials across several agencies and nonfederal public members who are nominated to serve on it.
While IACC’s recommendations are nonbinding, the group still wields significant power. The committee has been around for nearly two decades after the passage of the first Autism CARES Act in 2006 and coordinates all autism-related programs in the federal health infrastructure, roughly $2 billion in federal funding. It presents strategic plans regarding the country’s autism research, services, and policy to Congress and combs through thousands of autism studies published each year to highlight the most important findings. The committee also brings in autistic people to present on understudied topics.
“I was quite influenced by listening to the stories of parents with children and adults dealing with the burden of autism,” said Gordon, the former chair. “[Those stories] really allowed us to talk with scientists and to start programs that encouraged filling in these gaps in the complex picture of autism.”
The group’s charter requires at least three members who are diagnosed with autism, three who are parents or legal guardians of someone on the spectrum, and a minimum of three members who represent leading autism research, advocacy, and service organizations. It is unclear whether the group currently meets these requirements — many autism research organizations declined to comment — but many people in the autism community told STAT that they have not heard from federal officials about their applications to join the committee, even though Kennedy has long promised “radical transparency” with his operations. Tager-Flusberg said none of the 300-plus members of the Coalition of Autism Scientists has heard back about their applications, despite some of the new members announcing their selection in December, the new-member orientation, and the application portal closing on Jan. 2.
The lack of transparency is new for IACC, which, like most advisory committees, had primarily conducted its work in public. It’s unclear if an orientation with nonfederal members rises to the level of a meeting that would statutorily require a notice 15 days in advance, but even if it didn’t, three former committee members confirmed that prior administrations did not hold similar orientations for members before announcing the rest of the list or in advance of the first public meeting.
“The lack of transparency is a big part of this problem,” said Sam Crane, an autistic self-advocate who served on the committee from 2016 to 2024 as a representative of the Autistic Self Advocacy Network. “If they had simply announced all of their nominees at once, then there would be a lot less guesswork to do.”
Crane said it’s not just about the transparency, however. The committee can handle people with different ideas about what autistic people need most — past meetings have gotten quite raucous — but she said it’s crucial to have a leader who can shepherd the group through these ideological differences and focus on improving the lives of autistic people.
“If instead we were to get a leader who didn’t foster that respect, or instead used the committee as their own sort of personal platform, that would dramatically reduce the effectiveness of the committee,” said Crane.
A small coalition of people on IACC could influence the direction of federal funding and orient private organizations in crucial ways. Former members said that it would be easy to write reports and organize study roundups in ways that support further changes to the vaccine schedule, a move Kennedy has pursued as the health secretary. The committee could also push to change the federal attitude toward debunked autism treatments. In December, HHS shuttered a webpage meant to inform the public about the dangers of chelation therapy, which some people in the autism community have promoted as a “cure” despite little evidence and dangerous side effects.
It’s vital that IACC listen to all parts of the autism community, especially autistic self-advocates who experience the world differently, said Stephen Shore, one of the first autistic people selected to the IACC board in 2010. Since his time on the committee, it has become more responsive to the autistic peoples’ needs, especially the unique perspective and needs of autistic adults and girls.
“My hope is that the makeup of the new members will consider and meaningfully consider the autism community,” said Shore, a special education professor at Adelphi University on Long Island in New York.
Tager-Flusberg was less optimistic.
“I think if we are going to have public members and maybe even federal members who are going to distort the science, I think we are far better off not having an IACC at all.”
STAT’s coverage of disability issues is supported by grants from Robert Wood Johnson Foundation and The Commonwealth Fund. Our financial supporters are not involved in any decisions about our journalism.
