Vaccines take center stage at federal autism advisory committee

Vaccines took center stage at the federal autism advisory committee meeting Thursday, as committee members explicitly pointed to vaccines as a potential cause of autism, even though the link has been routinely debunked.

“We don’t want to close the door for any potential trigger, and that would include things like glutamate or aspirin, or a vaccination,” said Laura Cellini, the founder and CEO of Elucidate ASD, a nonprofit pushing for more medical treatments of autism. “We are quite open to investigating anything and everything. This plan closes no door.”

Vaccines are not mentioned in the committee’s new and already contentious strategic plan, which was the stated goal of discussion for the meeting. Multiple public members pointed to vaccines as possible culprits for their childrens’ “regression” into autism. None of the committee members challenged those statements — a sign that a new normal has been established on this committee, said Greg Robinson, director of public policy at the Autistic Self Advocacy Network.

“We are seeing right now the harms that come from misinformation around vaccines,” said Robinson, who is autistic, referencing the reports of two measles deaths in Pennsylvania. “We know how it has led to promoting harmful ideas about autistic people, about autism, and about supposed cures or remedies for autism for autistic folks that have been harmful or even deadly in the past.”

The committee members’ comments about vaccines are hardly surprising. 

In January, health secretary Robert F. Kennedy Jr. reshaped the Interagency Autism Coordinating Committee (IACC) with people who closely hew to his views on vaccines. This early brush with controversy has not faded, as autism researchers created a similarly named independent body to counter misinformation they expected from the federal counterpart, which has faced much criticism from the autism community because of its lack of transparency during its initial meeting, and as it has sought public comments about the new strategic plan to guide the federal approach to autism research.

The document radically reshapes the prevailing genetics-first approach to understanding autism, opting instead to fund research into areas with significantly less scientific evidence for their relevance, such as diet, inflammation, metabolic stress, and folate. The plan also calls for nearly doubling federal autism funding from $390 million to $747 million. Committee members voted to approve the plan, which will serve as nonbinding recommendations for Congress and federal health agencies. 

“In every year this committee met [previously], roughly three of every four comments urged this committee to act. Urgency is not new. Acting is,” said IACC chair Sylvia Fogel during her opening remarks, to applause.

Fogel announced the 336-page plan on July 17, giving the general public just three days to read and submit comments. The backlash was swift. A slew of autism advocacy and research organizations put public pressure on Fogel to push back the date of the next meeting, which she eventually did, though not without a fight. The backlash resembled the committee’s first contentious meeting, during which some federal committee members and prior IACC members said the proceedings did not comply with federal advisory rules.

Researchers and advocates are thrilled that the committee wants to alleviate co-occurring conditions such as epilepsy and sleep, and some of them are excited with the shift away from genetics as the main tool to understand autism and autistic people.

“Recognition of motor issues and autism, recognition of communication — those are really important,” said Sam Crane, an autistic self-advocate and former public member of IACC. “Genetics is important, but it probably was overfunded.”

However, what Crane and others saw as bad in the strategic plan outweighed the good for many experts. The loss of early language skills and social engagement — sometimes called regression — receives significant attention in the plan, with the text suggesting that there are some immunological, metabolic, or infectious causes behind regression that are yet to be discovered. The plan also devotes significant attention to leucovorin and other folate-based therapies, despite the overwhelming lack of scientific evidence for their efficacy. 

Robinson found it concerning that the plan did not address helping autistic adults secure employment or live independently.

“A lot of the life course recommendations that they have … are really pushing away from models that have really maximized our ability to be part of our communities,” he said.

Fogel used artificial intelligence to analyze the thousands of public comments the plan received. She says the analysis showed that 50% of commenters were “aligned” with the plan and 40% “mixed,” though she did not elaborate on how the software arrived at those conclusions. The comments included support for profound autism, increased communication access, and better caregiver and housing options. 

Thursday’s meeting was largely devoid of conflict, but some committee members expressed frustration that they were not given a final suite of comments until hours before the meeting. 

“We received yesterday afternoon more than 1,000 pages worth of additional public comments and additional revisions,” said Scott Robertson, a senior policy adviser at the Labor Department who is autistic. “The standard in other advisory committees … is several days to a week before. Less than 24 hours is infeasible for myself and others to adequately process the comments to help inform our engagement on the strategic plan.”

Robertson, who expressed concern about Fogel’s use of AI to analyze public comments, pointed out that the plan’s call to increase funding for autism research clashes with the committee’s appropriations outlined in the Autism CARES Act. He also asked to delay voting for the plan, noting a Wednesday statement from 13 advocacy organizations that pushed the committee to give members more time to review public comments.

“I can’t remember ever, prior to the adoption of a strategic plan, 13 awesome and significant disability organizations coming out and saying, ‘Please don’t rush through this kind of thing,’” he said.

Fogel remained undaunted, suggesting earlier that they can “energize” the community into more funding, and quickly shot down Robertson’s suggestion to delay the vote, saying the plan responds to “two decades of public comments” that did not receive enough attention.

“Some of those agencies who made that statement were well represented on this committee for two decades,” Fogel said. “We considered public comments more than ever in the history of this committee. … I, as chair, am moving to act.” 

It could work. Kennedy has already taken suggestions from the committee, announcing last week the National Autism Missing and Endangered Person Alert initiative, which will connect various emergency management services to curb wandering and elopement, one of the main causes of injury and death among people with autism. Some committee members met with Kennedy and National Institutes of Health Director Jay Bhattacharya and say the federal health leaders will soon adopt new initiatives around helping people with profound autism, in particular.

“The plan is not an ending,” Fogel said. “It does not close the door, it opens it.”

The committed officially adopted the plan — 26 yes, 1 no, 13 abstentions.

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