"Profound autism": The dire consequences of diagnostic overshadowing.

Waizbard-Bartov et al. (2023) argued autism assessments should be broadened into co-occurring difficulties, impairments, and support needs. Potentially, to create autism subgroups, like the proposed “profound autism,” requires persons to express “severe” autism, co-occurring intellectual disability and/or language impairment. However, co-occurring difficulties should already be accounted for during autism diagnostic assessments, as diagnosis requires alternative explanations to be dismissed. Diagnostic categories as described within the American Psychiatric Diagnostic Manual (DSM-5), are not designed to map large sections of a person's spiky profile, with residual categories commonly diagnosed. Often pertinent parts of a person's spiky profile are missed during assessments, consequently, DSM-5 contains a section for cross-categorical tools, and it is common to have multiple diagnoses (American Psychiatric Association, 2013). Frequently the differences between diagnostic categories are arbitrary, with clinicians' bias affecting what a person is diagnosed with, such as through diagnostic substitution. Our concern is diagnostic overshadowing, particularly when the lines are blurred between what is autism, and what isn't. This leads to the belief that certain experiences or symptoms associated with other conditions are part of being autistic when they are indicative of another condition entirely. This is a common occurrence in anxiety and personality disorders, conditions involving seizure activity and motor coordination difficulties, such as dyspraxia. Autistic people who have a co-occurring intellectual disability and who are minimally speaking have their co-occurring conditions dismissed as “autism” (Mazurek et al., 2021; Nicolaidis et al., 2015). The literature contains examples of this, including a non-standard pain and trauma response related to a broken ankle being dismissed as autistic regression (Goldschmidt, 2017). Another example includes the dismissal of explicitly severe physical symptoms of amyotrophic lateral sclerosis, and multiple sclerosis as “oppositional behavior” due to the patients being non-speaking Autistics (Smith et al., 2012). A challenge to another regularly proposed autism subgroup “pathological demand avoidance” (PDA) is, at least superficially, PDA reattributes behaviors typically associated with oppositional defiant disorder to autism (Green et al., 2018a). Autistic people are already more likely to die in hospital and specific co-occurring conditions—including neurological conditions—are indicators for this increased likelihood (Akobirshoev et al., 2020). Autistic people are associated with lower life expectancy, especially with multiple co-occurring medical issues (Hirvikoski et al., 2018). “Profound autism” could easily contribute to the breakdown in understanding between autistic people and non-autistic people as part of the double empathy phenomenon. High support needs exist in many combinations, and the level of support needs often fluctuates. It is clearer to use brief descriptions detailing a person's features and current support needs (Pukki et al., 2022). Considering the above factors, if “profound autism” is realized, at best co-occurring conditions and their associated supports will be missed, at worst it will likely contribute towards preventable deaths. Autism subgroups are controversial because Autistic persons as a population are suffering greatly due to a lack of sufficient support. Autism itself cannot be successfully divided into subgroups. The differences reported between subgroups in studies often result from the use of circular methods (Woods, 2020). This is highlighted in the use of co-occurring difficulties to create “profound autism.” Waizbard-Bartov et al. (2023) have added “severe” autism to the term, underscoring there is no consensus over what “profound autism” is. There is resistance against “profound autism,” and its utility remains undemonstrated. Catherine Lord observed the same issues with PDA (Hess, 2022). The concerns about PDA's risk to the validity of established clinical language, turning nosology on its head, and its potential for research and clinical confusion (Green et al., 2018b), can be applied to “profound autism.” “Profound autism” is viewed by many autistic persons to be representing an over 30-year step backwards. It would not be sufficient to guide service delivery, exactly as functioning levels never were (Pukki et al., 2022). Following PDA's commodification of autistic self-agency, benefiting entrenched interests (Woods, 2017), we ask: who predictably benefits from “profound autism,” especially financially? Authors thank Laurence Cobbaert for their contributions to initial discussions for the article. Richard Woods PhD is partly funded by Student Finance England and receives income for delivering autism and PDA training activities. Kathryn Williams's PhD study is funded by the Economic and Social Research Council and has a voluntary non-executive directorship at Autistic UK CIC, undertaking consultancy and systems advocacy regarding autism policy and practice. Courtney Watts has an Australian government funded fees only scholarship placement at the University of Newcastle. There is no original human or animal subject data reported in this paper. Therefore, there is no need for an ethics statement.