An independent panel of autism experts plans to meet in Washington, D.C., to challenge the new membership and direction of the federal Interagency Autism Coordinating Committee (IACC), whose roster was reshaped recently by Health and Human Services Secretary Robert F. Kennedy Jr.
The group, calling itself the Independent Autism Coordinating Committee (I-ACC), bills itself as a science-based alternative to the federal panel. Its first meeting follows Kennedy’s appointment of 21 new members to the IACC — many of whom support Kennedy’s Make America Healthy Again (MAHA) initiative and some of whom endorse the long-debunked idea that vaccines can cause autism.
“We in the autism science and advocacy community were just appalled at the way he went about selecting members,” says Helen Tager-Flusberg, professor emerita at Boston University and a member of the independent committee. Alison Singer, president of the Autism Science Foundation and another independent committee member, accused the federal group of being “hijacked by a narrow ideological agenda” that doesn’t reflect the broader autism community or current science.
Kennedy, in an HHS press release announcing the federal appointments, called his picks “the most qualified experts” who will “pursue rigorous science.” The independent committee, announced March 3, includes five former federal members, two former directors of the National Institute of Mental Health, prominent scientists, advocacy organization representatives, and one person who identifies as autistic.
Some advocates say representation of autistic people in the independent group is still too small. “I wish that there was more representation of autistic people,” says Eric Garcia, author of We’re Not Broken: Changing the Autism Conversation. Garcia, while criticizing the lack of autistic voices, supports the independent committee’s effort to combat unscientific claims about autism.
Led by Singer, the new group plans to focus on causes of autism and on how to support autistic people. Singer says research that continues to re-litigate vaccine causation diverts resources from investigating actual causes and improving supports. She intends to push for more research on profound autism — individuals who are nonverbal and require high levels of support — including whether commonly used interventions were ever adequately tested on this population.
Tager-Flusberg plans to discuss the future of language and communication research in autism and to explore ways to harness technology to help nonverbal autistic people communicate.
Thursday’s meeting was timed to coincide with a scheduled IACC session. After the independent committee announced its plans, HHS postponed the federal meeting without explanation. The independent group met as planned.
The decision to form an independent autism committee follows a precedent set last year by scientists concerned about federal vaccine policy changes. The Vaccine Integrity Project at the University of Minnesota was created after Kennedy began altering the Advisory Committee on Immunization Practices; it has since worked with groups such as the American Academy of Pediatrics and the American Medical Association to produce its own vaccine recommendations.
Like the federal IACC — which advises the government on autism research and services — the independent group plans to prepare reports for Congress and to engage with major funders like the National Institutes of Health and the Centers for Disease Control and Prevention. A significant part of its work will also target research funded by nongovernmental organizations, where private funding for autism research has been growing.
The independent committee’s influence is limited by its unofficial status. “Nothing replaces the official imprimatur of the U.S. federal government,” Garcia notes, and federal funding capacity is unmatched. Still, committee members argue that private funders are increasingly important and that independent oversight can help ensure research dollars are spent on scientifically sound priorities.