childrenshealthdefense.org 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.
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