05/27/2025
Profound Autism is Finally Being Acknowledged and Differentiated
At the INSAR 2025 Annual Meeting in Seattle, held April 30 to May 3, 2025, a consensus definition for "profound autism" was announced, addressing a subset of individuals with severe autism spectrum disorder (ASD).
This is not a new diagnosis but a refined classification to better identify and support those with the most significant impairments. The definition, developed through a Delphi process involving various stakeholders, includes the following criteria for profound autism:
- Meets the diagnostic criteria for autism.
- Is at least 8 years old, recognizing that some characteristics may be evident earlier.
- Requires adult supervision beyond age-appropriate levels to ensure physical and mental health, safety, and well-being (e.g., due to risks like elopement or lack of environmental awareness).
- Demonstrates adaptive functioning skills significantly below age level, with an inability to independently perform most activities of daily living (e.g., bathing, food preparation, dressing).
- Has severely impaired cognitive abilities, typically reflected by an IQ under 50, and/or significant communication challenges.
This definition aims to standardize research and interventions for individuals with profound autism, who represent about 27% of autistic children according to CDC data. The term has been in discussion since the Lancet Commission proposed it in 2021, and its formalization at INSAR 2025 is intended to address the historical underrepresentation of this group in research.
Carving up the spectrum allows for more targeted research and interventions. But that only works if everyone does it the same way.
