In The Politics of Autism, I write:
The most basic questions trigger angry arguments. For instance, into what category do we put autism in the first place? In 2013, President Obama said that “we’re still unable to cure diseases like Alzheimer's or autism or fully reverse the effects of a stroke.” The language of “disease” and “cure” offends some in the autism community. “We don’t view autism as a disease to be cured and we don’t think we need fixing,” says Ari Ne’eman of the Autistic Self-Advocacy Network. “We do feel comfortable with the word disability because we understand what it means.” From this perspective, autism is difference that requires accommodation, not an illness that requires eradication. Adherents of this position liken autism to homosexuality, which psychiatrists once deemed to be a disorder. Conversely, some parents take offense at opposition to a cure. “Anyone with the mental and verbal ability to challenge autism research is not autistic on a scale that I care to recognize,” writes autism parent James Terminello. “Opposition to finding a cure is particularly hurtful to parents who still mourn the loss of the child that could have been. A line has been crossed.”
An important contribution from Matthew Siegel, Catherine L. Lord, Helen Tager-Flusberg, Judith Ursitti, Alycia Halladay & Alison T. Singer
Siegel, M., Lord, C.L., Tager-Flusberg, H. et al. Developing a consensus research definition for profound autism using a modified Delphi method. Molecular Autism 17, 28 (2026). https://doi.org/10.1186/s13229-026-00727-y
Abstract
Background
The diagnostic term, autism spectrum disorder, encompasses the full range of impairments associated with the autism spectrum, a significant change from earlier DSM definitions that identified various subtypes of autism. However, the majority of autism-related research and cultural representations in recent years has focused on autistic individuals with strong language and cognitive abilities. In 2021, the administrative term Profound Autism (PA) was proposed by a Lancet Commission to draw attention to autistic people whose impairments require lifelong, round-the-clock care. The initial definition of PA included a minimum age and requiring 24/7 access to an adult to ensure safety, and suggested considering IQ, and verbal ability when defining this group. However, researchers have subsequently utilized widely varying criteria in studies of this group, producing results that are difficult to compare and limit the potential for the identification of this group to advance knowledge about their strengths and needs.
Methods
To address the need for studies that use comparable samples and increase clarity in communication and interpretation of results, we carried out a systematic, multi-stage Delphi consensus study with over 70 participants who identified as researchers, caregivers, autistic individuals, and clinicians, to measure consensus on components of a research definition of PA. A series of questions was developed for the primary domains of interest.
Results
After two rounds of review and voting, 76% of the respondents agreed on a research definition of PA of: adaptive functioning well below age level, requiring adult supervision to ensure physical and mental health, safety and well-being, being at least 8 years old, diagnosed with ASD, and having severely impaired cognitive abilities (reflected by IQ score below 50) and/or not verbally communicating other than single words or fixed phrases used predominantly to have their basic needs met.
Limitations
Variations in access to measurement tools, as well as access to services across the world, limit the utility of this definition outside research practices, and a response rate of 58% yielded a final round sample size of 78 that may underrepresent portions of the stakeholder community and was overwhelmingly composed of respondents from the United States.
Conclusions
Based on these findings, a new working research definition of profound autism is proposed. Adoption of this definition could improve comparability across research studies, enhance the impact and generalizability of results, and better target interventions and supports for this high-needs group.
From the article:
Our modified Delphi study led to a consensus research definition of profound autism that states a person with Profound Autism:and/or
- meets the diagnostic criteria for Autism Spectrum Disorder,
- requires adult supervision to ensure physical and mental health, safety, and well-being,
- demonstrates adaptive behavior skills well below age level, with an inability to independently perform most activities of daily living,
- has severely impaired cognitive abilities (reflected by IQ score below 50).
These criteria are neither intermittent nor transient and persist across different environmental settings and situations.
- does not verbally communicate other than single words or fixed phrases, and
- communicates predominantly to have their basic needs met
- is at least 8 years old (acknowledging that some characteristics consistent with profound autism are evident earlier),
