Open Society

Recently the Lancet published a Commission on the future of care and clinical re- search in autism, which included a side panel that proposed profound autism as an administrative term to describe autistic people likely to have high support needs [1]. The Lancet Commission lacks a clear definition or inclusion criteria for “profound autism” but operationalizes it through IQ at or below 50 (in the verbal or nonverbal domain, or overall) and/or minimal or inconsistent use of phrase speech [1].However, because autistic people have complex diversity in our manifestation of degrees and types of autistic traits and in our support needs, researchers have failed to clearly validate (e.g., independently replicate) subtypes of autism [2]. Even researchers who have championed the idea of multiple “autisms” [3] and described the need to “take autism apart” [4] have abandoned this fruitless quest to instead call for identifying features that are shared between multiple diagnostic categories, e.g., [5]. Indeed, transcending the neurodiversity of individuals, environmental influences such as acceptance versus victimization shape development [6,7]. For example, studies have found that peers are more likely reject autistic people with subtler or “milder” behavioral presentations of autism [8,9,10,11,12,13,14], such as the “active but odd” “social interaction style” proposed by Lorna Wing [9,10,15]. Autistic children with active initiation of prosocial approaches more often encounter rejection than autistic children with passive approaches [8,9,10]. This may explain why “social initiation and affiliation” shows only a weak relationship to other putative “subdomains” of autistic people’s social communication [16], as people who are able and motivated to actively initiate may feel less inclined to do so after rejection. Given the stressful nature of bullying that may target autistic people who appear “odd” rather than “disabled” [11,12,13,14,17,18,19], autistic adolescents’ tendencies to increase in social anxiety even while (a) their typically developing peers decline in it [20] and (b) their autistic traits tend to become less behaviorally pronounced [21], supports evidence that many peers put them into victimization spirals even as they try to “camouflage” or fit in [22,23].Those who argue for reductionist labels often misapply if not misunderstand pioneers of autism research. While Lorna Wing introduced the notion of an autism “spectrum” [24], she did not intend this in a linear sense, but rather believed in autism’s multi- dimensionality [25,26]. Some have referred to autism with intellectual disability as “Kanner’s autism” or “classic autism”, but Leo Kanner in his first paper on autism described the “unquestionabl[e]… good cognitive potentialities” of all autistic children he assessed “Even though most of these children were at one time or another looked upon as fee- bleminded” and railed against the ability of standardized IQ tests to measure the intelligence of autistic children [27] (p. 247). He decried the “dumped” institutionalization of an autistic girl dismissed as “feebleminded” who he thus felt had an underestimated ability [27]. Concerns remain today that “profound autism” could be used to promote segregation, while lacking validity.This evidence-based review argues against reductionist functioning terms and “profound autism” for reasons that overlap with the Lancet Commission’s repeated acknowledgements (e.g., of autistic people’s “heterogeneity” and “potential for change”) [1]. It questions “profound autism”’s limited scientific validity and feasibility in everyday practice. Next, it argues that the term describes autistics whose limited speech or verbal IQ has caused many to underestimate their communication and intelligence. The synthesis suggests instead evidence-based personalized provision for each individual’s profile of strengths and weaknesses, and unity around systemic issues for autistics with the highest support needs to live the lives they want.