rewrite this title Former federal advisers on autism who were let go by RFK Jr. form a new committee

An independent group of experts plans to offer an alternative to the Trump administration’s autism agenda. The group features prominent scientists who used to serve on a federal advisory committee.

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A group of experts plans to meet tomorrow to challenge the Trump administration’s agenda on autism spectrum disorder. The independent group is billing itself as a science-based alternative to an existing federal advisory committee. NPR’s Jon Hamilton has more.

JON HAMILTON, BYLINE: In late January, Health and Human Services Secretary Robert F. Kennedy Jr. replaced every member of the Interagency Autism Coordinating Committee. Many of the 21 new members share his debunked belief that autism can be caused by vaccines. Alison Singer, president of the Autism Science Foundation, says that’s a problem.

ALISON SINGER: 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.

HAMILTON: Kennedy describes his picks as the most qualified experts. Singer, whose adult daughter has profound autism, led the effort to form a new committee. Announced in March, it includes five former members of the federal group, several prominent scientists and advocates. Singer says the group, called the Independent Autism Coordinating Committee, will focus on the latest ideas about what causes the condition and how to support autistic people.

SINGER: 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.

HAMILTON: The Independent Committee scheduled its session for tomorrow to coincide with the federal group’s annual meeting, but a few days ago, HHS postponed that event. Singer says the new group decided to meet anyway. She plans to speak about the need for more research on profound autism, which includes people who are nonverbal and require high levels of support.

SINGER: We have to go back and determine whether the existing interventions are even appropriate for people with profound autism because they were never tested on people with profound autism.

HAMILTON: Another scheduled speaker is Helen Tager-Flusberg, professor emerita at Boston University and a member of the Independent Committee.

HELEN TAGER-FLUSBERG: I intend to talk about the future of research on language and communication in autism and how might we harness technology.

HAMILTON: Specifically, technology that could make it easier for some autistic people to communicate without speaking. Tager-Flusberg says, in many ways, the Independent Committee plans to mimic its federal counterpart.

TAGER-FLUSBERG: We do plan to prepare reports that we will send to Congress. I very much hope we will be able to speak to the NIH.

HAMILTON: The new group also hopes to coordinate research funded by foundations and other private entities. Tager-Flusberg says the Independent Committee came together quickly and is still evolving. That’s welcome news to Eric Garcia, the author of “We’re Not Broken: Changing The Autism Conversation.”

ERIC GARCIA: I wish that there was more representation of autistic people on this independent board because I feel like they’re being, once again, shoved to the side when autistic people should have a say in this.

HAMILTON: The current roster includes one autistic member. Garcia says he supports the group’s efforts to counter false information about autism and to back a research agenda that’s firmly grounded in science, but he says an independent advisory committee can only do so much.

GARCIA: Nothing replaces the official imprimatur of the U.S. federal government, and nobody can spend as much money as the U.S. federal government.

HAMILTON: Private research funding for autism is on the rise, though, and the independent committee wants to make sure that money is spent wisely.

Jon Hamilton, NPR News.

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