The autism industry seeks to divide the autism human kind to remove the voice of self-advocating people of the autism human kind…
Pathological demand avoidance: my thoughts on looping effects and commodification of autism
Attempts to subgroup autistic people have been largely unsuccessful and generally unwelcomed by autistic people who can communicate a preference. Parent and author Amy Lutz and her colleagues contend that “studies focusing on those most disabled by autism … should be of paramount concern to everyone in the autism community.” I agree, and I contend that they already are. Despite the underrepresentation in research, and indeed the challenges of including those with higher support needs in research, I contend that autistic people with the greatest challenges and support needs benefit from autistic-led research, when those caring for them are open to autistic community wisdom and scholarship.
Weaponized heterogeneity only harms the most vulnerable autistic people | Spectrum | Autism Research News
The neurodiversity movement is broadly against the subtyping/subgrouping of autism and the “mild autism”, “not like my kid”, and private equity narratives around subtyping.
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?
“Profound autism”: The dire consequences of diagnostic overshadowing – Woods – 2023 – Autism Research – Wiley Online Library
Splitting the autistic community in two based on level of disability or support needs is a false dichotomy. If you are not autistic, it may seem inimical to suggest that autistic people should not be considered as two separate groups, but those of us who live this reality know that we have far more in common across the spectrum than our differences might suggest. This is not to deny the wide range of challenges and support needs, but clinicians, researchers and caregivers who listen to autistic people describe similar issues stand to gain a far deeper understanding of them.
Attempting to split us up and using those differences against us in an attempt to deny the needs of some — thus weaponizing our heterogeneity — only harms those in greatest need. For researchers and caregivers whose goal is prevention and cure, this insight is unlikely to change their perspective, but increasing numbers of clinicians and researchers are appreciating the value of a neurodiversity-affirmative approach to autism.
The way in which autism is framed will have a profound effect on individual outcomes, and there is a profound need to deliver effective supports for all autistic people, regardless of phenotype. In my view, these are the only two contexts in which the word “profound” should be used in relation to autism or autistic people. Focusing on our shared experiences of the world, I believe, will bring us closer, and more quickly, to our shared goal of healthier, happier lives for all autistic people and their families.
Weaponized heterogeneity only harms the most vulnerable autistic people | Spectrum | Autism Research News
The categories within the DSM-5 are not designed to be lumped together to create arbitrary groups, like “Profound Autism.” As Steven Kapp notes, the DSM-5 autism criteria are not designed to create autism subtypes. There is a clear risk that “Profound Autism” will lead to clinical and research confusion. We are clear in our paper such risks are observed with another proposed autism subtype of “Pathological Demand Avoidance.” Arbitrarily using co-occurring Intellectual Disability and/or Language to attribute someone with “Profound Autism” seems nonsensical. We know that many Autistics attempt suicide, and a recent study suggests such behaviours are not inherently due to them being Autistic. Should we attribute Autistic persons showing an impairment of suicide with “Profound Autism”?
Our concern for broadening the definitions of autism to incorporate co-occurring conditions is that it is no longer an autism definition but a definition of complex disability interactions. By collapsing co-occurring difficulties etc. into one diagnostic label, it is unlikely that support needs will be met. To illustrate this, we ask some hypothetical questions: How much do you know about someone who is solely labelled with “Profound Autism” without needing to make assumptions about what that might mean? How much more do you know about someone who is described as Autistic, non-speaking but who uses Augmentative and Alternative Communication (AAC), has hypermobility and fatigue and is a part-time wheelchair user, and who requires support with emotional regulation? Which of the two is likely to be better supported by those around them based on this information? Who is more likely to receive appropriate medical care for their physical co-occurring conditions?
Grave Concerns About Profound Autism
My big concern is that there is no explanation as to how this classification system (I’m not exactly sure what to call it because the original proposal for the term published in the Lancet referred to the profound autism designation as an “administrative term,” but people seem to be using it in a wide variety of ways) will actually increase access to services or improve services planning.
The current system outlined in the DSM-5 is to classify autistic people according to their support needs. The authors of the paper published in Public Health Reports are correct that this classification system needs work, but they don’t provide even a logic model as to how the system they propose will improve providing services to people who need it. They rely on big assumptions that poorly defined criteria such as IQ scores and parent/clinician reports of verbal ability tells us something about the level and type of services that autistic people need. But others have pointed out (see for example Steven Kapp’s work on how scores on IQ tests vary across different tests and subdomains) that these relationships are not clear cut; many autistic people who do not have the characteristics the authors focus on have significant support needs, and support needs can be radically different across different domains, social contexts, and time.
If the goal is to make sure that everyone gets the support they need, why not improve our ability to directly assess support needs? Why focus on features that currently do not have well-characterized relationships with support needs? I haven’t seen any clear explanations about how this is meant to work, especially given that this “new” system looks a lot like the pre- DSM-5 system—and I don’t think there is any evidence that service provision was better under that system.
Explaining “Profound Autism” Pitfalls With Kristen Bottema-Beutel
Recently the Lancet published a Commission on the future of care and clinical research 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, oroverall) 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 feebleminded” 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.
Education Sciences | Free Full-Text | Profound Concerns about “Profound Autism”: Dangers of Severity Scales and Functioning Labels for Support Needs
FWIW, this is exactly what functioning labels (and Asperger’s diagnoses) seem to perpetuate in the discourse. the argument I keep seeing from the community, and which I agree with, is that you are a whole part of the community even if your experience doesn’t perfectly map or overlap, even if you don’t “look autistic” to a neurotypical or a passing glance.
It shares a lot with conversations about invisible disabilities and people who don’t always need their mobility aids but still use them. And, it shares a lot with conversations about people not feeling “queer enough” also.
The point of backing up to the umbrella term is that autism in particular has a lot of variety and a long history of people attempting, clumsily, to sort us into more specific categories, which ultimately do not actually serve us, and do not result in better-tailored assistance.
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