‘Slightly unhinged’ federal autism meeting portends unclear research priorities

Scientists have expressed concerns about last week’s meeting of the newest Interagency Autism Coordinating Committee (IACC), raising questions about the meeting’s content, process and impact on future U.S. federal funding for autism research.

“The day was slightly unhinged,” says David Mandell, professor of psychiatry at the University of Pennsylvania Perelman School of Medicine and former IACC member, who attended the public meeting virtually. Mandell is a member of a newly formed research advisory group called the Independent Autism Coordinating Committee (I-ACC), which positions itself as an alternative to the IACC.

U.S. federal law mandates that the IACC—which coordinates the Department of Health and Human Services’ efforts on autism—convene at least twice annually to develop a strategic plan for autism research. But the latest IACC gathering on 28 April did not deliver on that goal, according to Mandell and other former committee members who listened to the meeting. 

Instead, the committee pushed forward three policy proposals in a way that may have violated federal law, according to Mandell and statements by the Autism Science Foundation and the Autistic Self Advocacy Network.  

The main topics in these proposals—profound autism, challenging medical comorbidities and the dangers of wandering and elopement—are worthy of discussion and policy change, Mandell says. “I can make common cause with some of the concerns and ideas that were expressed.” 

But completely absent from the agenda was any development of a strategic plan “for conduct of, and support for, autism spectrum disorder research” as stipulated by the Autism CARES Act, former IACC member Alycia Halladay, chief science officer of the Autism Science Foundation, told The Transmitter. (The Autism Science Foundation serves as the administrative secretariat for the I-ACC.)

This means it’s still unclear what the committee will prioritize. “The IACC failed to discuss plans to develop or update the strategic plan for research, so there is nothing to indicate what kinds of research they are interested in pursuing,” wrote Helen Tager-Flusberg in an email to The Transmitter. Tager-Flusberg is professor emerita of psychological and brain sciences at Boston University and also a former IACC member and current I-ACC member.

That failure could have long-term consequences. By law, the committee has six months to develop this document, but “if there is no strategic plan, there can be no budgetary requirements, and therefore, there may be a lapse in funding,” Halladay wrote in an email to The Transmitter.

Although The Transmitter attempted to ask IACC chair Sylvia Fogel for her response to characterizations of the meeting by some former committee members and to comment on the commission’s approach to profound autism, due to an error on The Transmitter’s part Fogel did not receive the request.

After this article’s publication, Fogel responded on X, objecting to the ways in which The Transmitter’s sources had characterized the meeting. Fogel wrote that the committee was not disordered but instead succeeded in advancing proposals that “families we serve have waited far too long to see acted upon.”

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Fogel asserted during the meeting that the committee would “take the lived experience and urgent concerns of the community and translate them into policy for HHS to consider.” Fogel is a psychiatrist and Harvard Medical School instructor who identified herself during the meeting as a parent of a child with autism. 

In line with Fogel’s comment, the committee’s public members presented their recommendations in the afternoon. 

Notably, the committee members recommended a revised definition for profound autism that does not mention IQ, contrary to existing guidance from the Lancet Commission and Delphi consensus groups. That specific recommendation may reflect the committee’s interest in facilitated communication strategies; many proponents of these approaches object to characterizations of people with autism that use IQ, both Mandell and the Autism Science Foundation pointed out. 

Mandell and Halladay noted that none of the panel’s recommendations fall within the committee’s actual remit of guiding research aims. 

Dena Gassner, senior research scientist at Drexel University’s A.J. Drexel Autism Institute, who is a former member of the IACC and is autistic, pointed to “an astronomical number of procedural violations,” including a lack of transparency around the authorship of the recommendations discussed and a lack of opportunity for public input prior to calling a vote on the proposals. 

The next IACC meeting date has yet to be announced.

Fogel noted in her 7 May post on X that the Autism CARES Act gives IACC greater scope than simply developing a strategic plan for research, including the authority to advise the Secretary of Health and Human Services. She also explained  that the committee’s objections to the use of IQ in defining profound autism reflect the lack of available data for many individual children, among other issues.