In an effort to challenge the Trump administration’s views on autism spectrum disorder, a new independent panel of experts plans to meet just weeks after Health and Human Services Secretary Robert F. Kennedy Jr. appointed 21 new members to the federal panel.
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Tom Williams/CQ-Roll Call, Inc/Getty Images
In Washington, D.C., an independent panel of autism experts is set to convene on Thursday, aiming to contest the Trump administration’s stance on autism spectrum disorder.
This newly established Independent Autism Coordinating Committee positions itself as a science-driven alternative to the existing Interagency Autism Coordinating Committee managed by the federal government.
Their inaugural meeting is scheduled just a few weeks after Robert F. Kennedy Jr., Health and Human Services Secretary, appointed 21 new members to the federal panel.
These selections align with Kennedy’s Make America Healthy Again initiative, with many sharing 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,” states Alison Singer, a member of the independent committee and president of the Autism Science Foundation.
In a press release introducing the federal group’s new lineup, Kennedy referred to his appointees as “the most qualified experts” who will “pursue rigorous science.”
The independent committee, announced on March 3, comprises five former members of the federal group, two former directors of the National Institute of Mental Health, notable scientists, representatives from autism advocacy organizations, and one individual who identifies as autistic.
“I wish that there was more representation of autistic people,” comments Eric Garcia, author of We’re Not Broken: Changing the Autism Conversation. “I feel like they’re being once again shoved to the side.”
Despite this, Garcia shares the independent group’s concerns about Kennedy’s committee members and supports its efforts to counter unscientific claims about autism.
A shadow committee
Singer, whose adult daughter has profound autism, spearheaded the creation of the new committee.
The group intends to explore the latest ideas on the causes of autism and how to best support those with the condition.
“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 argues.
Initially, Thursday’s meeting was scheduled to coincide with a federal group meeting, but after the independent group’s plans became public, HHS postponed its event without explanation.
The independent group chose to proceed with their meeting regardless.
Singer plans to address the necessity for more research on profound autism, especially for nonverbal individuals who need significant 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 intends to discuss future research on language and communication in autism.
She plans to explore how technology can be leveraged to assist some autistic individuals in communicating without speaking.
Scientists pushing back
The formation of this independent autism committee mirrors a similar initiative from the previous year by scientists concerned about the Trump administration’s vaccine policies.
The Vaccine Integrity Project was established at the University of Minnesota after Kennedy made changes to the CDC’s Advisory Committee on Immunization Practices. This project has since worked with organizations such as the American Academy of Pediatrics and the American Medical Association to develop its own vaccine schedules.
In many respects, the independent autism committee will emulate its federal counterpart, which provides guidance to 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 aims to engage with the National Institutes of Health and the Centers for Disease Control and Prevention, both key funders of autism research.
However, a significant focus of the independent committee will be research funded by nongovernmental organizations.
The committee’s influence may be constrained by its independent status, Garcia notes.
“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.”
Nonetheless, private research funding for autism is on the rise, the committee members assert. They aim to ensure that these funds are utilized effectively.
