By Robin Respaut
April 28 (Reuters) – A U.S. advisory committee appointed by Health Secretary Robert F. Kennedy Jr. recommended on Tuesday that the government adopt the term “profound autism” for those with the highest support needs, and improve gaps in medical care for people with autism.
The Interagency Autism Coordinating Committee helps guide federal autism research spending, worth about $2 billion annually, and coordinates efforts among government agencies, such as the National Institutes of Health and the Centers for Disease Control and Prevention.
In January, Kennedy appointed a new chairperson and all 20 public members on the board. Another 22 members represent federal agencies.
More than a third of the health secretary’s newly appointed members have promoted the debunked link between vaccines and autism that Kennedy has championed, contrary to established science, alarming some autism researchers. Most of the committee’s public members are parents of autistic children or people with autism.
Kennedy has made autism a signature issue of his tenure and highlighted the plight of autistic individuals with the highest need for support throughout the course of their lives.
In 2021, the Lancet Commission, an international expert panel that assesses autism research and services, designated people with profound autism as those with severe intellectual impairment or minimal verbal communication, and the need for full-time access to a caregiver. In 2023, the CDC estimated that 26.7% of 8-year-olds with autism qualified as profound.
The spotlight on high needs has been welcomed by some advocates who say those with profound autism were left behind as the definition and diagnosis of autism spectrum disorder expanded in recent years to include many high-functioning individuals. Others in the autism community oppose the designation as unnecessary and stigmatizing.
“Individuals with the greatest medical complexity and functional support needs are the most excluded from the research designed to help them,” said IACC Chair Dr. Sylvia Fogel, a psychiatry instructor at Harvard Medical School and parent of a child with autism.
“Existing systems do not reliably capture individuals with the highest support needs, and it’s why a functional designation of profound autism, in my opinion, is needed.”
UNDIAGNOSED CONDITIONS
The committee also prioritized improving medical care for autistic patients who suffer from other health conditions, such as gastrointestinal, sleep, neurological, autoimmune and metabolic disorders. Such illnesses are sometimes undiagnosed by medical providers or assumed to be symptoms of autism, leaving patients without critical care, they said.
“Many in the autism community are facing intense daily hardship driven by undiagnosed conditions, safety risks, and increased mortality,” said Fogel.
“Some experience physical pain that they can’t communicate, from conditions such as gastrointestinal disorders, dental issues, or chronic headaches or migraines. Pain that leads to behaviors that are too often dismissed as just part of autism,” said Fogel. “I have witnessed this repeatedly in my two decades of practice. It is unacceptable.”
The public members of the committee, those appointed by Kennedy to represent the autism community, voted on Tuesday largely in support of making recommendations to him. Many of the federal members, those who represent relevant government bodies, voted to abstain, arguing that the agencies needed more time to review the proposals.
The panel’s recommendations passed and will be sent to Kennedy.
(Reporting by Robin Respaut, additional reporting by Ahmed Aboulenein; editing by Michele Gershberg and Bill Berkrot)
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