An independent panel of autism experts plans to meet in Washington, D.C., to challenge the federal Interagency Autism Coordinating Committee (IACC) after Health and Human Services Secretary Robert F. Kennedy Jr. appointed 21 new members to the federal panel.
The newly formed Independent Autism Coordinating Committee (I-ACC Autism) bills itself as a science-based alternative to the federal IACC. Its first meeting follows Kennedy’s appointments, many of whom are supporters of his Make America Healthy Again initiative and share his belief 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,” says Helen Tager-Flusberg, a member of the independent committee, professor emerita at Boston University and director of the Center for Autism Research Excellence. “The current committee has been hijacked by a narrow ideological agenda that does not reflect either the broad autism community or the state of autism science,” says Alison Singer, a member of the independent committee and president of the Autism Science Foundation.
In a press release announcing the federal group’s new roster, Kennedy described his picks as “the most qualified experts” who will “pursue rigorous science.” The independent committee, announced March 3, includes five former federal committee 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.
“I wish that that there was more representation of autistic people,” says Eric Garcia, author of We’re Not Broken: Changing the Autism Conversation. “I feel like they’re being once again shoved to the side.” Garcia nonetheless supports the new group’s effort to combat unscientific claims about autism.
Alison Singer led the effort to form the new committee. The group will focus on causes of autism and how 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 says.
Thursday’s session was meant to coincide with a scheduled federal IACC meeting. After the independent group’s plans became public, HHS postponed its own event without explanation. The independent group met as planned. Singer planned to speak about the need for more research on profound autism, including the appropriateness of existing interventions for people who are nonverbal or require high levels of support. Tager-Flusberg planned to discuss future research on language and communication, including ways to “harness technology” to aid nonverbal autistic people.
The move echoes last year’s creation of the Vaccine Integrity Project at the University of Minnesota, formed by scientists concerned about administration changes to the CDC’s Advisory Committee on Immunization Practices. That project has worked with groups like the American Academy of Pediatrics and the American Medical Association to produce recommended vaccine schedules.
Like the federal IACC, the independent committee plans to prepare reports for Congress and hopes to interact with the National Institutes of Health and the Centers for Disease Control and Prevention. A major focus will be guiding nongovernmental research funding. The committee’s independent status limits its official clout — “Nothing replaces the official imprimatur of the U.S. federal government,” Garcia says, “and nobody can spend as much money as the U.S. federal government.” Still, private autism research funding is rising, and committee members want to ensure those dollars are spent wisely.