Autism Experts Strike an Independent Committee to Counter Federal Panel - Medscape

A group of leading autism researchers has struck an independent advisory committee to respond to non-evidence-based claims about the condition by a long-standing federal panel.

The 12-member Independent Autism Coordinating Committee (I-ACC) will issue recommendations to help guide autism research. Convened largely at the urging of Alison Singer, president and co-founder of the Autism Science Foundation, the panel includes Joshua Gordon, MD, and Tom Insel, MD, both former directors of the National Institute of Mental Health, among other experts.

Both Gordon and Insel are former chairs of the federal Interagency Autism Coordinating Committee (IACC), the panel the new group plans to shadow and respond to.

The I-ACC was formed to push back against what members see as dangerous claims about autism’s causes and treatments that have come from the administration over the past year, said Helen Tager-Flusberg, PhD, professor emerita at Boston University, and a member of the new group.

In January, Health and Human Services (HHS) Secretary Robert F. Kennedy, Jr appointed 21 all-new members to the federal IACC, several of whom have promoted vaccines as a cause of autism or endorsed potentially harmful therapies, Tager-Flusberg said. The independent I-ACC was formed shortly thereafter, she told Medscape Medical News.

“Kennedy’s reconstituted IACC is clearly designed to promote an agenda antithetical to evidence-based policy and practice,” said David Mandell, ScD, associate director of the Center for Autism Research at The Children’s Hospital of Philadelphia and a former IACC member, in a statement to Medscape Medical News. “We hope that the I-ACC will offer an antidote,” he added.

The new committee will meet for the first time March 19 in Washington, DC, coinciding with the federal panel’s inaugural session.

The goal is to serve as a near real-time counterpoint to the federal panel’s discussions, said Tager-Flusberg said.

Established in 2006, the IACC was charged with developing a strategic plan for autism research and providing annual reports to Congress.

The new committee will also submit annual reports to Congress and issue recommendations on research priorities. Some members of Congress have expressed deep concern about the federal panel, which has neither met nor issued an annual report since the start of the Trump administration, Tager-Flusberg said.

The panel will also include former Congressman Jim Greenwood, a Republican who sponsored the legislation that created the federal committee and later served as CEO of BIO, the biotechnology industry trade association.

When asked to comment on the new panel, HHS spokesperson Emily Hilliard 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.”

In addition to Tager-Flusberg, Singer, Mandell, Insel, Gordon, and Greenwood, other members of the committee include Joseph Joyce, president and CEO of the Autism Society of America; Amy Lutz, PhD, a medical historian, parent of a child with autism, and vice president of the National Council on Severe Autism; Kristin Sohl, MD, representing the American Academy of Pediatrics; Matthew State, MD, PhD, scientific director of Aligning Research to Impact Autism; John T. Walkup, MD, representing the American Academy of Child and Adolescent Psychiatry; and Zack Williams, MD, PhD, an autism researcher and self-advocate at the University of California, Los Angeles.

All members of the I-ACC will publicly disclose any potentially relevant conflicts of interest, Tager-Flusberg said.

She added that it is unclear whether the newly appointed members of the federal IACC have undergone a similar vetting process. Transparency is particularly critical for autism advisory panels, she said, especially regarding financial ties to the wellness industry, which she noted represents a larger financial force in autism than the pharmaceutical sector.

Tager-Flusberg added that members of the independent committee are serving on a volunteer basis and will receive administrative support from the Autism Science Foundation.

Tager-Flusberg reported that she is currently receiving funding for three research grants from the National Institutes of Health.

*Alicia Ault is a Saint Petersburg, Florida-based freelance journalist whose work has appeared in many health and science publications, including Smithsonian.com. You can find her on X @aliciaault and on Bluesky @aliciaault.bsky.social. *