“Profound Autism”: The New Category That Could Change Everything
They just drew a new line in autism. Here’s why it matters.
This article originally appeared on The Defender and was republished with permission.
Guest post by Michael Nevradakis, Ph.D.
A federal advisory committee last week recommended adopting the term “profound autism” to refer to a subset of people with autism who require the greatest degree of support in their day-to-day lives — but whose cognitive abilities are not limited. “Not all non-speaking people with high support needs have an intellectual disability, but many have severe motor disabilities,” said John Gilmore, one of the committee members.
A federal advisory committee last week recommended adopting the term “profound autism” to refer to a subset of people with autism who require the greatest degree of support in their day-to-day lives.
The new recommended definition differs from previous definitions — if adopted, the term will no longer include limited cognitive ability as a condition of being diagnosed with profound autism.
The Interagency Autism Coordinating Committee (IACC), which reports to U.S. Health Secretary Robert F. Kennedy Jr., made the recommendation during its first meeting since Kennedy took over at the U.S. Department of Health and Human Services (HHS).
In January, Kennedy appointed 21 new members to the committee, which advises the secretary on autism-related policy and research. The committee’s recommendations are non-binding.
According to the IACC’s recommendation, the term “profound autism” would include people age 8 or older with a preexisting autism diagnosis and with the following characteristics:
Minimal or no functional speech, defined as non-speaking; or limited to single words or 2-3 word phrases used primarily for basic needs, wants, or protests; and/or with limited ability to engage in flexible, reciprocal, or generative communication — meaning spontaneous, non-prompted, and contextually varied communication exchange.
A need for continuous or near-continuous supervision and substantial assistance with activities of daily living to meet basic needs.
If adopted, the recommended definition will act as a “standardized functional research and policy designation” that would inform federal research and policymaking on autism-related issues.
‘Intellectual disability is not … a necessary symptom for an autism diagnosis’
In 2022, a Lancet Commission report formally endorsed the use of the term “profound autism” for the first time. The report classified people with profound autism as being at least 8 years old, in need of 24-hour access to an adult carer, and with a limited cognitive ability — an IQ below 50 and/or minimal or no verbal ability.
According to the Profound Autism Alliance, the needs of people in this category “are consistent over time, and across different settings.”
John Gilmore, a member of the IACC and the father of an adult autistic son, told The Defender the IACC’s proposed definition would focus only on autistic people with very high support needs and “minimal or no spoken language.”
“I see this recommendation simply acknowledges reality, a quality missing from much of autism policy,” Gilmore said. “Not all non-speaking people with high support needs have an intellectual disability, but many have severe motor disabilities.”
The new definition corrects a deficiency as it “acknowledges that people with very high support needs who are non-speaking do not necessarily have an intellectual disability.”
“Intellectual disability is not, and never has been, a necessary symptom for an autism diagnosis. The recommendation eliminates an inconsistency in diagnostic criteria applied only to the most affected people,” Gilmore said.
Brian Hooker, Ph.D., chief scientific officer for Children’s Health Defense (CHD), told The Defender that “the instruments used to judge intelligence in autism are outmoded and don’t reflect nor accommodate for any problems with praxis.”
Hooker said existing instruments often fail to measure the intelligence of people with severe autism.
“My son struggled as we taught him rudimentary math and English until his 26th birthday, when he started openly communicating using a letter board,” Hooker said. “Then we found out he could do calculus, physics, and read and understand German.”
Improved definition may lead to better education opportunities
Michelle M. Guppy, the mother of an adult son with profound autism, said that the condition hasn’t been correctly defined until now. Instead, “It has been hidden, ignored, masked, insulted.”
Guppy said her reaction at the news of the IACC’s recommendation was one of “sheer validation.” She characterized the IACC’s move as a step toward “draining the IACC swamp” from people who represented “corporate, pharmaceutical and legislative interests.”
Health and medical freedom advocates criticized previous iterations of the IACC for being beholden to Big Pharma’s interests and for their failure to identify the causes of autism or deliver meaningful change or progress for autistic people.
“One of the great shames of the IACC is that, after 25 years of existence, we still have no officially accepted treatments for autism,” Gilmore said. “Many of those newly appointed advocates I have known for decades — and for them to finally be given an opportunity to share the raw, unfiltered, unbiased truth is a victory in itself,” Guppy said.
Experts told The Defender that the current definition of “profound autism” has harmed people with severe autism and denied them opportunities. According to Gilmore, this included the manner in which people with profound autism are educated. He said:
“The assumption of intellectual disability has condemned many people with ‘profound autism’ to years of schooling that never went beyond the nursery school level.
“People with profound autism who have acquired the ability to communicate through spelling and other alternate means let us know about the years of torture they endured at the hands of well-meaning educators who assume they are intellectually disabled. Perhaps [the proposed definition] will lead to more people getting education appropriate for their intellectual ability.”
‘People with the highest needs have not been included in much of the research’
Judy Chinitz, founder and director of the Mouth to Hand Learning Center, said the proposed definition is imperfect — but is an improvement over the current definition. She said:
“Nonspeakers have self-stimulatory (repetitive) behaviors, but they do not have a disability of language, or social understanding or limited interests. They have an extraordinarily severe motor disability, and what we call ‘the brain/body disconnect’ — they cannot control their own bodies. To suggest that they have a ‘profound’ version of social disability is wrong and misleading.
“That said, the fact that intellectual disability is no longer a part of the definition is a major step forward, and should ultimately lead to more appropriate education, research, and help with effective communication.”
“A deaf child would not take an oral test,” Hooker said. “A blind child would not be required to read a page of text for a test. Why then do we use inappropriate instruments for individuals who struggle with any type of intentional motion?”
Gilmore said that the existing definition of “profound autism” has also skewed research into this category of people with autism.
“People with the highest needs have not been included in much of the research for both the practical difficulties created by their disability, and deliberate exclusion,” Gilmore said. “Hopefully this recommendation can help include the most autistic people in autism research.”
CHD General Counsel Kim Mack Rosenberg said the proposed definition will benefit and streamline research examining severe autism.
“Right now, there is a word cloud of phrases used to describe people who are more severely impacted by autism and those various phrases often have different meanings or considerations.
“IACC’s proposal, based on communication and the need for constant or near constant supervision, cuts through a lot of the inconsistency and will allow for research, support, interagency coordination and other efforts to be applied in a more coordinated and targeted way.”
Last year, the National Institutes of Health (NIH) announced plans to study the causes of autism. Later that month, Kennedy announced that the federal government had launched a “massive testing and research effort” to determine what causes autism.
A 20-page strategy report issued by the White House’s Make America Healthy Again Commission listed research into the root causes of autism among its 128 recommendations for ending the childhood chronic disease epidemic.
In September 2025, HHS said it would study all possible causes of autism, including vaccines, and the NIH announced $50 million in funding for 13 such studies.
Will new definition lead to policy changes that improve access to care?
CHD CEO Mary Holland said the proposed definition may help address “the total inadequacy of autism’s current diagnosis as a psychiatric condition.”
“As members of the new IACC panel discussed at their first meeting, autism is actually a ‘whole body’ condition with severe neurological impact,” Holland said.
Guppy said that the existing definition of “profound autism” also hurt federal healthcare policy for people with severe autism. She said she hopes the new definition, if adopted, will help increase access.
“The real help will come from the policy that dictates the help needed is covered … if there isn’t a way to seek proper insurance-covered or Medicaid-covered intervention, the label won’t matter,” Guppy said.
According to Guppy, people with profound autism often require treatment from specialist physicians “who have been trained for this population.”
“If we don’t allow those physicians who can help to be covered by insurance … we will still be without help, unless you can afford to pay for it out-of-pocket, which most of us rapidly entering retirement cannot,” Guppy said. “Profound autism is an infinite expense for parents like me who have finite means to provide.”
Public support for a revised definition of “profound autism” was reflected in the public comments the IACC received before last week’s meeting.
Dr. Sylvia Fogel, chair of the IACC, an assistant in psychiatry at Massachusetts General Hospital, instructor of psychiatry at Harvard Medical School, and mother of a son with autism, said during the meeting that the term “profound autism” appeared in roughly 35% of the 259 public comments submitted.
Mainstream ignores growing numbers of people with ‘profound’ autism
According to the IACC, data from the Centers for Disease Control and Prevention (CDC) indicate that approximately one-quarter of people with autism “are minimally speaking or non-speaking.”
This figure has held steady even as autism diagnoses have increased. CDC data published last year showed that 1 in 31 U.S. children had autism in 2022 — up from 1 in 36 in 2020 and 1 in 10,000 in the 1970s.
Gilmore questioned mainstream narratives suggesting that the number of autistic people has increased due to better diagnostic tools, and that this overall increase largely captures people with less severe symptoms.
“There is no doubt that the number of people with an autism diagnosis has grown because in practice, the threshold for an autism diagnosis, especially for adults, is lower than it used to be, and there are a lot more professionals credentialed to diagnose autism.”
However, the number of severe cases has also grown, according to Gilmore, who said:
“What we don’t hear about is the horrifying growth in the number of people with the most severe symptoms. These are the people who could not have possibly been overlooked now or at any time in the past.
“Whenever the new autism numbers come out … the exponential growth in the number of people with the most severe cases is conveniently ignored by those who want to diminish concern about the autism epidemic.”
Related articles in The Defender
Autism Committee Hears From Non-Speakers, Parents During First Meeting Under RFK Jr.
RFK Jr.’s New Autism Advisers Set Sights on ‘Many Unanswered Questions’
‘Parents Have Waited for 30 Years’: NIH to Study Causes of Autism
‘Honesty at Last’: CDC Says ‘No Evidence’ to Support Claim that Vaccines Don’t Cause Autism
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