The “profound autism” label has gained traction in recent years as a way to describe individuals on the more severe end of the spectrum, but now there is an effort to clarify exactly who qualifies.
The label came to prominence with a 2021 proposal from an international commission of autism researchers, providers, self-advocates and parents that was published in The Lancet. Since then, however, researchers have used inconsistent criteria when attempting to study this group.
A proposal put forth this summer in the journal Molecular Autism seeks to establish a consensus definition.
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Under the plan, “profound autism” would include those who are at least 8 years old with an autism diagnosis who have adaptive functioning “well below age level” and who need adult supervision to ensure their health, safety and wellbeing. Individuals must have severe cognitive impairment, which is considered an IQ score below 50, or lack verbal communication beyond single words or fixed phrases.
More than 70 researchers, caregivers, individuals with autism and clinicians weighed in, with 76% voting in favor of the proposal.
Establishing a broadly accepted set of criteria is essential, said Judith Ursitti, cofounder and president of the Profound Autism Alliance. She said her group along with the Autism Science Foundation funded the study to establish a standard after the 2024 International Society of Autism Research annual meeting highlighted profound autism and high support needs and she found researchers using a variety of definitions.
“These inconsistencies would not build the body of research needed to provide much needed progress for the population initially identified by The Lancet,” Ursitti said. “Clarity will help identify best practice and provide individualized supports and services across the spectrum.”
Ursitti said her group is working to spread the word within the research community and to lobby lawmakers to utilize the consensus definition within federally funded research.
A 2023 study from the Centers for Disease Control and Prevention found that 26.7% of children on the spectrum had profound autism. More recently, the Interagency Autism Coordinating Committee, or IACC, a panel charged with advising the secretary of health and human services and coordinating federal activities related to the developmental disability, recommended that the government 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.”
Still, not everyone is on board with establishing the profound autism label. A recent toolkit from the Autistic Self Advocacy Network argues that the term “profound autism” hurts people with autism by making it easier to take away their rights, making it harder to get their needs met and encouraging pity.
