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Sunday, December 12, 2021

"Profound Autism"

From the preface to The Politics of Autism.
A major theme of this book is that just about everything concerning autism is subject to argument. There is not even any consensus on what one should call people who have autism and other disabilities. “In the autism community, many self-advocates and their allies prefer terms such as `Autistic,’ `Autistic person,’ or `Autistic individual’ because we understand autism as an inherent part of an individual’s identity,” writes blogger Lydia Brown.[i] Other writers prefer “people-first” language (e.g., “persons with autism”) since it puts the persons ahead of the disability and describes what they have, not who they are.[ii] For the sake of stylistic variety, this book uses both kinds of language, even though this approach will satisfy neither side. I can only say that I mean no offense.
Yesterday, the Lancet Commission on the future of care and clinical research on autism — a group of 32 researchers, clinicians, family members, and self-advocates from around the world — released a comprehensive 64-page report detailing changes that should be made over the next five years to improve the quality of life of autistic people and their families.

Besides a common-sense call for individualized, incrementalized, evidence-based interventions, one of the Commission’s key recommendations is to carve out the most impaired section of the spectrum and give it its own label of “profound autism,” which would include autistic individuals who also have significant intellectual disability (IQ below 50), minimal or no language, and who require round-the-clock supervision and assistance with activities of daily living. The Commission expresses “hope that [the introduction of “profound autism”] will spur both the clinical and research global communities to prioritise the needs of this vulnerable and underserved group of autistic individuals.”

This move represents just the most recent example of a growing dissatisfaction with the monolithic diagnosis of Autism Spectrum Disorder that was introduced in DSM-5 eight years ago in place of more narrowly defined categories such as Asperger Syndrome, Autistic Disorder, and Pervasive Developmental Disability, Not Otherwise Specified (PDD-NOS). Last month, the National Council on Severe Autism (NCSA) — on whose board I serve — issued a position statement calling for a “distinct, stand-alone diagnostic category” for the most impaired, and the use of “autisms” rather than “autism” to emphasize the extraordinarily diverse presentations of the disorder has been popular for several years at the most prominent autism conferences, such as the International Society for Autism Research (INSAR).
Self-advocates with intellectual disabilities and AAC users have long spoken out against the harm caused by functioning labels like “severe autism” or “low-functioning” autism, as have parents of autistic people with the most significant support needs. “Profound autism” is just an attempt to rebrand the same harmful notion. The reality is that autistic people, just like people with Down Syndrome or Cerebral Palsy, have a wide range of abilities and support needs, for lots of different reasons. The Lancet Commission conflates needing 24/7 support with having a measured IQ of 50 or below or being nonspeaking, but this is a harmful oversimplification — for example, there are many autistic people who speak or who have higher IQs but who require around-the-clock services, and there are autistic AAC users who live independently. We also know that IQ tests are notoriously unreliable for autistic people, particularly nonspeaking autistics. Nor is it clear why the presence of co-occurring disabilities like intellectual disability or speech apraxia should result in a different label, when co-occurring disabilities are common in autistic people and already accounted for by the DSM.
Autistic people need and deserve better services, especially those of us with the highest needs — but the “profound autism” label doesn’t help. “Profound autism” doesn’t give us any actionable information about why a person needs support or what support they need. It doesn’t tell us if a person has speech apraxia or complex medical needs, or if the person needs access to AAC or specific mental health supports. It also doesn’t reflect what we know about people with significant developmental disabilities generally, which is that high expectations and inclusive services benefit everyone and we can’t predict what someone can achieve with the right support.