An independent panel of autism experts plans to meet in Washington, D.C. on Thursday to challenge the Trump administration's views on autism spectrum disorder.
The newly formed Independent Autism Coordinating Committee is billing itself as a science-based alternative to an existing federal entity called the Interagency Autism Coordinating Committee.
The new group's first meeting comes just weeks after Health and Human Services Secretary Robert F. Kennedy Jr. appointed 21 new members to the federal panel.
Those picks are supporters of Kennedy's Make America Healthy Again initiative. Many also share his belief that autism can be caused by vaccines — a belief 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 members of the federal group, 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, the author of We're Not Broken: Changing the Autism Conversation. "I feel like they're being once again shoved to the side."
Even so, Garcia shares the group's concerns about Kennedy's committee members and supports its efforts to combat unscientific claims about autism.
A shadow committee
Singer, whose adult daughter has profound autism, led the effort to form the new committee.
The group will focus on the latest ideas about what causes the condition and how to support autistic people, she says.
"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 meeting of the federal group. But after the independent group's intentions became public, HHS postponed its own event without explanation.
The new group decided to meet anyway.
Singer plans to speak about the need for more research on profound autism, which includes people who are nonverbal and require high levels of support.
"We have to go back and determine whether the existing interventions are even appropriate for people with profound autism," Singer says, "because they were never tested on people with profound autism."
Tager-Flusberg expects to talk about the future of research on language and communication in autism.
As part of her talk, she plans to discuss ways to "harness technology" to make it easier for some autistic people to communicate without speaking.
Scientists pushing back
The decision to create an independent autism committee echoes a similar move last year by scientists concerned about the Trump administration's vaccine policies.
The Vaccine Integrity Project was created at the University of Minnesota after Kennedy began making changes to the CDC's Advisory Committee on Immunization Practices. The project has since collaborated with groups including the American Academy of Pediatrics and the American Medical Association to produce its own recommended vaccine schedules.
In many ways, the independent autism committee will mimic its federal counterpart, which advises the government on autism research and services.
"We do plan to prepare reports that we will send to Congress," says Tager-Flusberg.
The group also hopes to interact with the National Institutes of Health and the Centers for Disease Control and Prevention, both major funders of autism research.
But a major focus of the independent committee will be research funded by nongovernmental organizations.
The committee's impact is likely to be limited by its independent status, Garcia says.
"Nothing replaces the official imprimatur of the U.S. federal government," he says, "and nobody can spend as much money as the U.S. federal government."
Private research funding for autism is on the rise, though, committee members say. And they want to make sure that money is spent wisely.
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