A group of autism researchers and advocates with ties to Dr. Paul Offit on Tuesday said they formed their own autism research committee in protest of changes made by U.S. Health Secretary Robert F. Kennedy Jr. to the official government panel of autism advisers.
On Jan. 28, Kennedy appointed 21 new members to the Interagency Autism Coordinating Committee (IACC), a committee that coordinates federal efforts on autism, including policy and government-funded research. Kennedy said in a statement:
“President Trump directed us to bring autism research into the 21st century. … We are doing that by appointing the most qualified experts — leaders with decades of experience studying, researching, and treating autism. These public servants will pursue rigorous science and deliver the answers Americans deserve.”
Former committee members claimed Kennedy’s overhaul of the committee undermined its scientific integrity.
Helen Tager-Flusberg, Ph.D., a member of the new Independent Autism Coordinating Committee, founder of the Coalition of Autism Scientists and a former IACC member, said in a press release that the new group “restores the rigor and coordination needed to accurately assess progress and ensure that evidence-based progress continues to be made.”
The new committee plans to submit annual reports to Congress and issue recommendations on autism research priorities, Medscape reported.
U.S. Department of Health and Human Services (HHS) Press Secretary Emily G. Hilliard told The Defender that the new committee doesn’t replace the federal committee appointed by Kennedy, which operates under HHS. She said:
“The federal IACC will continue to fulfill President Trump’s directive to bring autism research to the 21st century and support breakthroughs in autism diagnosis, treatment, and prevention.”
Former IACC members prioritized research on genetic causes of autism, failed to find answers
John Gilmore, executive director of the Autism Action Network and one of the new members appointed by Kennedy to the IACC, told The Defender that Kennedy’s overhaul was warranted because the committee’s former members failed to answer many parents’ questions about autism.
“The IACC began 25 years ago, but since then, we have failed to find the cause or causes of autism. No treatments have been developed, no prevention, no cures,” he said.
Kennedy’s overhaul brought in many families whose voices were previously discounted, Dr. Sylvia Fogel, chair of the new IACC under HHS, told The New York Times.
Fogel is an assistant in psychiatry at Massachusetts General Hospital, an instructor of psychiatry at Harvard Medical School, and the mother of a son with profound autism.
For years, the IACC had prioritized research on the genetic causes of autism, which failed to generate answers for the many families whose previously healthy children regressed into profound autism, she said.
Fogel’s son was a typical 2-year-old who sang songs and spoke in three- to four-word phrases. After a respiratory infection, he lost the ability to communicate verbally, maintain eye contact or engage socially. “He was a shell of his former self,” Fogel told the Times. “Nobody could tell me what happened with my son. And no one could offer any treatment.”
The IACC’s charter requires the committee to include at least three members who are autistic, three who are parents or legal guardians of someone on the spectrum, and at least three members who represent organizations active in autism advocacy, research or service.
Before Kennedy reshaped it, the IACC had historically been led by people “on the more high-functioning side of the spectrum,” according to Jackie Kancir, executive director of the National Council on Severe Autism and parent of a profoundly autistic 22-year-old daughter.
Many parents of profoundly autistic children were “jumping for joy, feeling like they’ve finally been heard” when Kennedy announced the new members, Kancir told the Times.
Gilmore said the new independent committee, comprised largely of former IACC members, would likely ignore these parents’ concerns. “Clearly, they have no intention of listening to any of the voices many of them spent years trying to silence,” he said.
The new independent committee plans to meet on the same day and time as the IACC so it can “respond quickly to any recommendations that are not supported by science,” according to a press release.
Both groups will meet on March 19. “It’s like a jilted lover throwing a big party on the wedding day of the former partner,” Gilmore said. “This is bizarre, creepy behavior.”
The new independent committee includes Jim Greenwood, the former president and CEO of the largest biotechnology trade group and former U.S. representative for Pennsylvania. Greenwood sponsored the Children’s Health Act of 2000, which established the IACC.
IACC would ‘strike fear in people’ if it advised HHS to study vaccine-autism link
Alison Singer, a former IACC member and member of the new independent committee, told The Washington Post it would “strike fear in people” if the IACC announced that the government should study whether vaccines cause autism.
The Post is credited with first reporting on the new committee.
“Why is any avenue of investigation off limits?” asked Karl Jablonowski, Ph.D., Children’s Health Defense’s (CHD) senior research scientist. “It is appropriate to look hard everywhere, and look much harder where powerful interests tell you not to.”
Singer, president of the Autism Science Foundation, is largely responsible for forming the new independent committee, Medscape reported.
The Autism Science Foundation’s board of directors includes Offit, a long-time promoter of vaccines. Offit has historically donated profits from the sale of his book “Deadly Choices: How the Anti-Vaccine Movement Threatens Us All” to the nonprofit, which has doled out over $5 million for autism research.
Singer told the Post there are “dozens and dozens of studies” that “exonerate vaccines as a cause of autism.” The Post linked to a list of studies procured by the Autism Science Foundation to back up her claim.
However, the majority of studies cited by the nonprofit looked only at the MMR (measles-mumps-rubella) vaccine or thimerosal-containing vaccines, according to Brian Hooker, Ph.D., CHD’s chief scientific officer.
The other studies claiming to have found no link between vaccination and autism are “dubious in quality and fraught with conflicts of interest,” he said.
Hooker said the Autism Science Foundation’s list omitted recent studies suggesting a link between vaccines and autism — including a 2025 peer-reviewed study showing that vaccinated children were at least four times more likely to receive an autism diagnosis compared to unvaccinated children.
A 2025 peer-reviewed paper in Molecular Neurobiology, which reviewed 519 studies, determined that autism is not a genetic disorder. The authors concluded that autism may arise from a dynamic and potentially modifiable set of biological drivers, including immune system disruption, environmental exposures and gut-brain physiology.
A comprehensive review of 300 studies published in October 2025 identified vaccination as the leading “modifiable risk factor” for autism.
The Defender asked a representative of the new independent committee if the members believe that research has ruled out the possibility that a vaccine, or a combination of vaccines administered over time, could increase the risk of autism in genetically susceptible children. The group did not respond by the deadline.
In addition to Singer, Tager-Flusberg and Greenwood, the new independent committee members are:
- Dr. Zack Williams, UCLA, Autistic Scientist/Self Advocate
- Dr. Joshua Gordon, former Director, National Institute of Mental Health; IACC Chair (2016-2024)
- Dr. Tom Insel, former Director, National Institute of Mental Health; IACC Chair (2002-2015)
- Joseph Joyce, President and CEO, Autism Society of America
- Dr. Amy Lutz, University of Pennsylvania; Autism Parent
- Dr. David Mandell, University of Pennsylvania; former IACC member
- Dr. Kristin Sohl, American Academy of Pediatrics
- Dr. Matthew State, UCSF, Scientific Director, Aligning Research to Impact Autism
- Dr. John Walkup, American Academy of Child and Adolescent Psychiatry
