Rival ‘shadow’ group to RFK, Jr.’s autism science committee meets in D.C.
Autism researchers are working to counter a federal autism advisory panel that has vaccine skeptic members and, they say, a “striking absence of scientific expertise”
Greggory DiSalvo/Getty Images
WASHINGTON, D.C.—A “shadow committee” of autism researchers and science advocates met in the nation’s capital for the first time on Thursday.
Called the Independent Autism Coordinating Committee (I-ACC), the group rapidly came together as a response to Secretary of Health and Human Services Robert F. Kennedy, Jr., overhauling of the federal government’s Interagency Autism Coordinating Committee (IACC), which provides guidance on autism research. Kennedy’s 21 new appointees to the committee include several who have promoted a disproved connection between vaccines and autism and who have promoted non-evidence-based and potentially dangerous therapies for the condition.
Other similar “shadow” organizations have been created to fill in the public health gaps left by changes under the Trump administration. Medical organizations have put out their own vaccine guidelines, for example, after Kennedy overhauled the Centers for Disease Control and Prevention’s vaccine advisory committee.
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The federal autism committee now has a “striking absence of scientific expertise,” said Craig Snyder, policy lead at the Autism Science Foundation, during the rival group’s meeting on Thursday. “It disproportionately represents the small subset of families who believe, contrary to scientific consensus, that vaccines cause autism while excluding the overwhelming majority of autistic individuals, families and advocates who support evidence-based science.”
The independent group plans to review autism science and recommend research priorities to improve the lives of autistic people—something that many of its members worry the federal committee will no longer prioritize.
“There are some grave concerns that the federal IACC will not be able to continue to do what its true mission is,” said Joshua Gordon, who chaired the IACC when he was director of the National Institute of Mental Health, on Thursday. Gordon is now a member of the independent committee.
At Thursday’s kickoff meeting, members of the new group took turns sharing what gaps in research could be filled to improve the lives of autistic people. These included funding more rigorous trials for therapies and improving communication devices. Several members highlighted the need for research to answer long-standing clinical questions, such as whether certain antidepressants should be prescribed to autistic children with anxiety.
Notably, the federal autism committee was meant to meet on Thursday, too, but postponed its own meeting after the independent group announced it would convene on the same day. The federal IACC’s overhaul is just one of many actions Kennedy has taken to roll back vaccines and muddy long-standing consensus around vaccines and autism since he was appointed to the Trump administration.
Under Kennedy, the Centers for Disease Control and Prevention changed its website to state that “studies have not ruled out the possibility that infant vaccines cause autism,” which is not borne out in evidence, autism researchers say. The Food and Drug Administration has also removed warnings on its website about non-evidence-based and potentially dangerous therapies for autism. These include chelation and hyperbaric oxygen therapies—both of which have been promoted by current IACC members.
“The current committee has been stacked to represent a narrow ideological agenda,” Snyder said at the independent group’s meeting on Thursday. “It sidelines rigorous evidence-based inquiry and thus has great potential to stall scientific progress, to distort research priorities and to squander very scarce taxpayer money—and ultimately, therefore, to harm people with autism and all those who love and support them.”
The federal committee was created in 2006 through the Combating Autism Act, later renamed the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act. This law passed amid the first big wave of the antivaccine movement, says Jim Greenwood, a Republican and a former representative of Pennsylvania, who sponsored an early version of the bill when he was a congressperson. Fears about vaccines had become tied to rising autism rates, and the government had to dedicate the proper attention and funding to autism science, he adds.
“We [needed] to bring together people who really know the science and [could] provide information that overrides these bad, pseudoscience conspiracies,” says Greenwood, who is a member of the independent autism committee.
The federal IACC has historically tried to balance the perspectives of different factions of the autism community, including researchers, families and autistic people themselves. Sitting at the same table fostered understanding and discussion rather than division, according to Gordon. It showed that “working together was better than splintering,” he said at the meeting.
Now “what is at stake is trying to keep this community together,” he added.
In 2019 the federal committee began to include a larger number of autistic people as members. Now the federal group has less representation from autistic people than before, and the independent group has only one autistic member. Neither group includes representatives of autism self-advocacy organizations.
“At present autistic people are losing ground on political representation,” says Ari Ne’eman, co-founder of the Autistic Self Advocacy Network and a health policy researcher at Harvard University. “I don’t think either [group] can be meaningfully said to represent our community at this moment.”
The independent group plans to expand to better represent the autism community and is taking suggestions in public comments. “I think it’s a no-brainer that we must urgently take up adding more autistic people to our group,” said Helen Tager-Flusberg, a professor emerita at Boston University, who leads the Coalition of Autism Scientists, at the Thursday meeting.