WASHINGTON, DC – A “shadow committee” of autism researchers and science advocates met in the nation’s capital for the first time Thursday.
The group, called the Independent Autism Coordinating Committee (I-ACC), quickly came together as a response to Health and Human Services Robert F. Kennedy, Jr.’s overhaul 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 disproven link 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 public health gaps following 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,” Craig Snyder, policy director at the Autism Science Foundation, said during the rival group’s meeting 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 many of its members worry the federal committee will no longer prioritize.
“There are some serious concerns that the federal IACC will not be able to continue to do what its true mission is,” Joshua Gordon, who led the IACC when he was director of the National Institute of Mental Health, said 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 can be filled to improve the lives of autistic people. These included funding more rigorous trials for therapies and improving communication equipment. 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 supposed to meet on Thursday as well, but postponed its own meeting after the independent group announced it would meet on the same day. The federal IACC’s overhaul is just one of many actions Kennedy has taken to roll back vaccines and muddy longstanding 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 say that “studies have not ruled out the possibility that infant vaccines cause autism,” which has not been proven, 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 therapy – 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 Thursday. “It sidelines rigorous evidence-based research and thus has great potential to stall scientific progress, distort research priorities and waste very scarce taxpayer dollars – and ultimately, therefore 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 in the middle of the first big wave of the anti-vaccine movement, said Jim Greenwood, a Republican and former Pennsylvania representative who sponsored an early version of the bill when he was a congressman. Fears about vaccines had been linked to rising autism rates, and the government needed to devote proper attention and funding to autism science, he adds.
“We (need) to bring together people who really know the science and (could) provide information that overrides these bad, pseudoscientific conspiracies,” says Greenwood, who is a member of the Independent Autism Committee.
The federal IACC has historically attempted 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 told the meeting.
Now “what’s 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 autistic representation than before, and the independent group has only one autistic member. Neither group includes representatives of autism self-advocacy organizations.
“At the moment, autistic people are losing ground on political representation,” says Ari Ne’eman, co-founder of the Autistic Self Advocacy Network and health policy researcher at Harvard University. “I don’t think any of these (groups) can meaningfully be said to represent our society at the moment.”
The independent group plans to expand to better represent the autism community and is accepting suggestions in public comment. “I think it’s a blur that we urgently need to start adding more autistic people to our group,” Helen Tager-Flusberg, a professor emerita at Boston University who chairs the Coalition of Autism Scientists, said at Thursday’s meeting.
