Federal officials are delaying a meeting of a key autism panel after advocates became alarmed that the public was given just days to comment on a plan to reshape the government’s approach to the developmental disability.
The U.S. Department of Health and Human Services told Disability Scoop on Wednesday that it will reschedule a meeting of the Interagency Autism Coordinating Committee, or IACC, for late August. The panel, which is comprised of government officials and members of the autism community, had been expected to meet July 31.
The agency also said it will set a new deadline for public comment to be submitted ahead of the meeting.
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The delay came in response to pushback from autism advocates after the IACC released a draft strategic plan on Monday totaling 336 pages and provided just four days for public feedback. The strategic plan is the IACC’s primary responsibility and provides recommendations to the secretary of health and human services on autism research, services, supports and more.
“For caregivers of people with profound autism, who frequently can’t even get a shower for themselves every four days, this timeline created a barrier to participation,” said Judith Ursitti, cofounder and president of the Profound Autism Alliance.
Ursitti’s group along with the Autism Science Foundation, the Autism Society of America, the Coalition of Autism Scientists, the National Council on Severe Autism, Autism Speaks and the Autistic Self Advocacy Network came together to urge the IACC to extend its public comment period to 90 days.
“After receiving feedback from autism stakeholders, the Interagency Autism Coordinating Committee (IACC) will extend the public comment period,” said Emily Hilliard, a spokesperson for HHS. “The committee appreciates the strong engagement from the autism community and remains committed to ensuring feedback is heard and thoughtfully considered as part of its process.”
Per the Autism CARES Act, the strategic plan is supposed to be updated annually. The plan is often relied on by both federal agencies and private organizations when prioritizing how to allocate resources. The new version has added weight because of a provision in the latest iteration of the autism law that calls for the National Institutes of Health budget for autism research to be informed by the IACC’s strategic plan.
The last time the IACC approved a strategic plan was in 2023 and that version ran nearly 250 pages, covering seven general topics including diagnosis, biology, interventions, services and lifespan issues. The committee spent roughly two years putting it together, soliciting comments about priorities before drafting anything and then convening a work group and going through two drafts before releasing a final plan, according to David Sitcovsky, vice president of advocacy at Autism Speaks.
“The public had repeated opportunities to shape the document as it developed,” he said of the process last time around. “Public input in this cycle is arriving after the document was substantially written, rather than helping to shape it from the outset.”
Earlier this year, HHS Secretary Robert F. Kennedy Jr. overhauled the IACC, sidelining representatives of some of the nation’s most prominent autism groups in favor of several new members who have a history of criticizing vaccines and other questionable approaches.
The new committee has held just one public meeting and the draft strategic plan was developed privately. The proposal is longer than any previous versions of the strategic plan and it’s unclear who was involved in writing the draft, advocates said.
“This plan has a radically different structure to it and covers different ground from prior plans,” said Helen Tager-Flusberg, director of the Center for Autism Research Excellence at Boston University, who’s leading the Coalition of Autism Scientists, a group of more than 300 researchers in the field.
So far, Tager-Flusberg, a former IACC member, said she has skimmed the document and applauded its focus on navigating diagnosis, housing, mental health and other services. But, she said other portions, including a section on improving communication for individuals with autism who are nonspeaking, were concerning.
“It is not clear whether the plan would support continued funding for genetics, neuroscience, screening or treatments other than pharmaceuticals. None of these key topics are included,” she said. “Given that the (plan) includes many proposals that are consistent with (Kennedy’s) views on autism, if this plan is approved by the IACC, this will (give) him license to radically change the priorities for future autism research.”
Ursitti with the Profound Autism Alliance said she was glad to see profound autism included, which is something that had not occurred before.
Several other advocates said they saw a mix of good content and questionable ideas in the plan, but none had been able to thoroughly review the document.
HHS said that the draft was informed by two decades of public comments and Dr. Sylvia Fogel, chair of the IACC, indicated that the committee is acting with urgency to meet its obligations under the Autism CARES Act.
“Many individuals with autism, their families, clinicians, researchers, and advocates have spent years, and in some cases decades, raising concerns, only to feel that their most urgent priorities were not heard or addressed,” Fogel said in a social media post Wednesday about the decision to delay the meeting and comment deadline. “Meaningful public participation requires not only sufficient time to comment on the current Draft, but also responsiveness to concerns raised repeatedly over time.”
Fogel said that the public comment deadline ahead of the IACC’s next meeting will now be Aug. 20 at 5 p.m. ET, but HHS has yet to officially announce dates for the upcoming meeting or comment period.
“Moving forward, I strongly encourage the IACC to conduct their work in the public eye and allow appropriate time for the community to engage,” Ursitti said. “This will pave the path to progress that we all desire.”
