Profound Concerns about “Profound Autism”: Dangers of Severity Scales and Functioning Labels for Support Needs

Abstract

Recently the Lancet published a Commission on the future of care and clinical research of autism, which included a side panel arguing for the adoption of “profound autism”, a term in- tended to describe autistic people who require constant supervision or care, thought to usually have significant intellectual disability, limited or no language, and an inability to advocate for themselves. This state-of-the-art review deconstructs problems with autism sublabels such as “profound autism” and low- and high-functioning labels. It then examines the communicative and cognitive capacities of minimally speaking autistic people, finding that such individuals can communicate (especially with responsive partners) and need nonverbal testing that allows them to demonstrate their potential strengths. It concludes with the ability of minimally speaking autistic people to self-advocate, and the influences of other people to both support and frustrate their communication.

Understanding profound autism: implications for stigma and supports

“…There is disagreement in scientific and advocacy communities about the choice of the term profound autism, with some arguing it is “misleading and counterproductive” [( 29 ), p. 94] to efforts of the neurodiversity movement to conceptualize and advocate for autism as an identity, not a disabling medical condition [see also ( 30 )]. However, clear terms are needed to describe the extensive clinical needs of profoundly autistic individuals and their families.…”

Anti‐ableist language is fully compatible with high‐quality autism research: Response to Singer et al. (2023)

“…In contrast, the terms "required" by Singer et al (e.g., "profound autism," "severe," and "challenging behavior") are limited in their validity, utility, and specificity, are inconsistently defined, and dehumanizing to many autistic people (Kapp, 2023;Pukki et al, 2022). Specific descriptors of cognitive functioning, support needs, or other characteristics of autistic people are more precise and scientifically accurate than ambiguous terms like "profound" and "severe," which gloss over strengths and the contexts in which impairments can become significantly disabling.…”

Neurodiversity and community-led rights-based movements: Barriers and opportunities for global research partnerships

“…While there are lively ongoing debates around issues of language and representation (e.g. Ellis, 2023; Kapp, 2023), the neurodiversity movement is bringing about significant positive shifts within these communities in public understanding and acceptance, and in research, policy, and practice.…”