An independent group of autism experts convened in Washington, D.C., to contest recent changes to the federal Interagency Autism Coordinating Committee (IACC) after Health and Human Services Secretary Robert F. Kennedy Jr. named 21 new members to the federal panel.
The new body, calling itself the Independent Autism Coordinating Committee (I-ACC Autism), presents itself as a science-based alternative to the federal IACC. Its inaugural meeting came soon after Kennedy’s appointments, many of which are tied to his Make America Healthy Again initiative and include supporters of the view that vaccines can cause autism — a claim that has been thoroughly debunked.
“We in the autism science and advocacy community were just appalled at the way he went about selecting members,” said Helen Tager-Flusberg, a member of the independent committee, professor emerita at Boston University and director of the Center for Autism Research Excellence. Alison Singer, president of the Autism Science Foundation and also part of the independent group, said the federal panel “has been hijacked by a narrow ideological agenda that does not reflect either the broad autism community or the state of autism science.”
In announcing the federal panel’s new roster, Kennedy described his selections as “the most qualified experts” who will “pursue rigorous science.” The independent committee, announced March 3, includes five former federal IACC members, two former directors of the National Institute of Mental Health, prominent scientists, representatives of autism advocacy organizations, and one person who identifies as autistic.
Eric Garcia, author of We’re Not Broken: Changing the Autism Conversation, said he would have liked to see greater autistic representation on the independent panel: “I wish that there was more representation of autistic people. I feel like they’re being once again shoved to the side.” Garcia nevertheless supports the group’s effort to counter unscientific claims about autism.
Alison Singer led the creation of the new committee, which plans to focus on autism causes and how best to support autistic people. “Every dollar that’s spent relitigating whether autism is caused by vaccines is a dollar we don’t have to look for the actual causes,” Singer said.
The independent meeting was scheduled to coincide with a federal IACC session. After the independent group’s plans became public, HHS postponed its meeting without offering an explanation; the independent committee met as planned. Singer intended to address the need for more research on profound autism and whether existing interventions are appropriate for people who are nonverbal or require high levels of support. Tager-Flusberg planned to outline future research on language and communication, including ways to “harness technology” to assist nonverbal autistic people.
The move mirrors last year’s formation of the Vaccine Integrity Project at the University of Minnesota, which was established by scientists concerned about changes to the CDC’s Advisory Committee on Immunization Practices. That project has collaborated with organizations such as the American Academy of Pediatrics and the American Medical Association on recommended vaccine schedules.
Like the federal IACC, the independent committee intends to prepare reports for Congress and seeks engagement with the National Institutes of Health and the Centers for Disease Control and Prevention. A key aim is to guide nongovernmental research funding. The group’s independent status restricts its official authority — “Nothing replaces the official imprimatur of the U.S. federal government,” Garcia noted, “and nobody can spend as much money as the U.S. federal government.” Still, private funding for autism research is increasing, and committee members say they want to help ensure those resources are used wisely.