A key autism panel that was dramatically reshaped by U.S. Secretary of Health and Human Services Robert F. Kennedy Jr. is recommending that the federal government embrace the term “profound autism,” but the way they are going about it is raising red flags.
The Interagency Autism Coordinating Committee met last week for the first time in over a year. The panel, which is comprised of government officials and members of the autism community, is charged with advising the secretary of health and human services and coordinating federal activities related to the developmental disability.
Earlier this year, Kennedy overhauled the committee, declining to reappoint any existing IACC members who were eligible for a second term and selecting several new members known for promoting the discredited idea that autism is linked to vaccines or advocating for treatments that lack evidence.
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At the meeting, members moved quickly to approve a proposal calling for the federal government to adopt a “standardized functional research and policy designation” for profound autism to be used for “research, federal policy, reporting, training, technical assistance, and program-planning purposes.”
The idea of using a distinct label to classify individuals with autism who have the highest support needs has gained traction in recent years.
In 2021, a commission of top autism researchers, providers, self-advocates and parents from six continents released a report in The Lancet urging a separate diagnosis of profound autism for individuals with severe intellectual disability and minimal communication who need around-the-clock care. And, a 2023 report from the Centers for Disease Control and Prevention found that more than a quarter of children with autism have profound autism, which the agency defined as meaning that they are nonverbal, minimally verbal or have an intelligence quotient of less than 50.
The IACC recommendation, however, defines profound autism as applying to those age 8 or older with an autism diagnosis who have minimal or no functional speech and who require “continuous or near-continuous supervision to ensure safety and substantial assistance with activities of daily living.” It does not stipulate that individuals have intellectual disability or meet an IQ score threshold.
“Requiring an intellectual disability diagnosis as part of the definition of ‘profound autism’ risks excluding individuals who meet criteria based on functional and communication needs but do not have an intellectual disability diagnosis; misclassifying individuals due to known limitations in cognitive and adaptive assessment; and reinforcing systematic underestimation of cognitive capacity,” reads the committee’s recommendation.
The move is drawing hesitation even from those who have long backed the idea of carving out profound autism as its own category.
“Having federal agencies increase the specificity of their autism-related undertakings would be enormously helpful to ensure federal activities better reflect the realities of autism, especially those who are most severely affected,” said Jill Escher, president of the National Council on Severe Autism, which has urged the IACC for years to address profound autism. “I am concerned, however, with the proposal that profound autism need not entail intellectual disability.”
Escher noted that the committee did not cite any studies to back up their exclusion of this criteria and said she believes it’s a nod to facilitated communication, a controversial method where a facilitator helps an individual who is nonspeaking communicate.
“In the view of facilitated communication proponents, profound autism doesn’t necessarily come with these severe cognitive impairments,” Escher said. “It’s not based on any evidence.”
Moreover, there are concerns about how the committee went about approving its recommendation for profound autism and two other proposals — one regarding efforts to address wandering and another related to Medicaid and clinical guidance on autism.
Materials marked “final” with proposals on the three topics were made public just days before the committee meeting — and after the public comment period closed — with no indication about who prepared them or how. The IACC was even presented with a draft letter to Kennedy detailing the recommendations. Then, the panel was expected to vote with little to no opportunity for input.
Several of the committee members who represent federal agencies raised concerns that the approach violated the Federal Advisory Committee Act, a law outlining the responsibilities of such panels, and abstained from voting.
“This undercuts the very purpose of having an advisory committee,” said Alison Singer, president of the Autism Science Foundation. “In my 12 years as a member of the IACC, we never received final documents; we received materials for discussion developed by working groups, which were usually amended after broader discussion and deliberation. We voted at subsequent meetings, not at the meetings where materials were first presented.”
How the committee operates has significant implications, said Colin Killick, executive director of the Autistic Self Advocacy Network. His group opposes the creation of a distinct classification for profound autism.
“A recommendation like this matters because, despite what the IACC chair said, they are making policy when they issue recommendations to the secretary,” he said. “These recommendations carry weight and as the federal members pointed out, federal agencies face expectations that their own work align with the IACC.”
HHS did not respond to questions about whether the IACC recommendations have been formally sent to Kennedy or what the next steps could be.
