WASHINGTON, D.C.—An assembly of autism researchers and science advocates, termed a “shadow committee,” convened in the nation’s capital for the first time on Thursday.
Known as the Independent Autism Coordinating Committee (I-ACC), this group was swiftly formed in reaction to Secretary of Health and Human Services Robert F. Kennedy, Jr.’s restructuring of the federal Interagency Autism Coordinating Committee (IACC), which is responsible for guiding autism research. Kennedy’s 21 new appointees include several individuals who have advocated for a refuted link between vaccines and autism and have supported therapies for autism that lack scientific validation and could be dangerous.
Similar “shadow” groups have been established to address public health gaps left by policy changes during the Trump administration. For instance, medical organizations have issued their own vaccine guidelines following Kennedy’s overhaul of the Centers for Disease Control and Prevention’s vaccine advisory committee.
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Craig Snyder, policy lead at the Autism Science Foundation, remarked during the independent group’s meeting on Thursday that the federal autism committee now shows a “striking absence of scientific expertise.” He noted that 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 committee aims to evaluate autism research and set research priorities to better the lives of autistic individuals—an objective many members fear the federal committee might deprioritize.
Joshua Gordon, who chaired the IACC while leading the National Institute of Mental Health, expressed on Thursday, “There are some grave concerns that the federal IACC will not be able to continue to do what its true mission is.” Gordon is now part of the independent committee.
During the inaugural meeting on Thursday, the new group members identified research gaps that could enhance the lives of autistic people. These included the need for more rigorous trials for therapies and advancements in communication devices. Some members emphasized the importance of addressing clinical questions such as whether specific antidepressants should be prescribed to autistic children with anxiety.
Interestingly, the federal autism committee had also planned to meet on Thursday but postponed its meeting after the independent group announced its own. The restructuring of the federal IACC is part of a broader series of actions by Kennedy to challenge vaccine policies and disrupt established views on vaccines and autism.
Under Kennedy’s direction, the Centers for Disease Control and Prevention modified its website to state that “studies have not ruled out the possibility that infant vaccines cause autism,” a claim disputed by autism researchers. The Food and Drug Administration has similarly removed warnings on its site regarding non-evidence-based and potentially harmful autism therapies. These therapies include chelation and hyperbaric oxygen therapies, both endorsed by current IACC members.
Snyder stated at the independent meeting on Thursday, “The current committee has been stacked to represent a narrow ideological agenda. 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 established in 2006 through the Combating Autism Act, later renamed the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act, which was enacted during the initial surge of the antivaccine movement, according to Jim Greenwood, a Republican and former Pennsylvania representative who sponsored an early version of the bill. Concerns regarding vaccines had become linked to increasing autism rates, necessitating government attention and funding for autism research, he added.
Greenwood, who is also a member of the independent autism committee, stated, “We [needed] to bring together people who really know the science and [could] provide information that overrides these bad, pseudoscience conspiracies.”
The federal IACC has traditionally attempted to balance the perspectives of various segments of the autism community, including researchers, families, and autistic individuals themselves. According to Gordon, having these groups at the same table fostered understanding and dialogue rather than division. This approach demonstrated that “working together was better than splintering,” he mentioned at the meeting.
He further stressed, “what is at stake is trying to keep this community together.”
In 2019, the federal committee began including a greater number of autistic individuals as members. However, the current federal group has fewer autistic representatives than before, and the independent group currently has only one autistic member. Neither group includes representatives from autism self-advocacy organizations.
Ari Ne’eman, co-founder of the Autistic Self Advocacy Network and a health policy researcher at Harvard University, commented, “At present, autistic people are losing ground on political representation. I don’t think either [group] can be meaningfully said to represent our community at this moment.”
The independent group intends to broaden its representation of the autism community and is accepting public comments. Helen Tager-Flusberg, a professor emerita at Boston University who leads the Coalition of Autism Scientists, stated at the Thursday meeting, “I think it’s a no-brainer that we must urgently take up adding more autistic people to our group.”
