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by Fnoord 884 days ago
Fuck BAP and all these people with ASD who don't have it severe and end up being in denial, proposing masking and "getting over it" and other tough boy talk.

If you got diagnosed with ASD, you have ASD and there are tons of false negatives out there (undiagnosed people) as well as those claiming they're true positive (in reality undiagnosed, they may very well have ASD in some form, or not). It is also possible you have misdiagnosed false positives. Psychopaths, for example, could very well benefit from such.

I know I am not the latter. I know I have empathy, and when I don't, it is likely because of overstimulation otherwise. I recognize this in my children as well. My mother's late best friend (geez, typing this makes me realize how much I miss her) who was different in life as status quo in a way irrelevant to this discussion described my kids when tbey were very young as "friendly". A simple thing to say, but her observation was so aptly sound, I shluld remind myself about it more often next temper tantrums.

2 comments

> Fuck BAP and all these people with ASD who don't have it severe and end up being in denial, proposing masking and "getting over it" and other tough boy talk.

BAP is a construct developed by researchers, see e.g. https://pubmed.ncbi.nlm.nih.gov/30995078/ – we can debate its value as a scientific theory, but all this stuff about "being in denial" is irrelevant to its scientific status.

> If you got diagnosed with ASD, you have ASD

There's this MIT PhD thesis I really like, Phech Colatat's Essays in the sociology of autism diagnosis. https://dspace.mit.edu/handle/1721.1/90070 In the first half of his thesis, Colatat looked at three specialist clinics in the US, all run by Kaiser Permanente (which in his thesis he refers to by the pseudonym "Allied Health") – management was already aware that three clinics had significantly different diagnosis rates, but those differences were being ascribed to patient characteristics and referral patterns. Based on statistical analysis of medical records, Colatat argues that neither of those explanations actually work, and instead the real explanation is differences in the professional culture of each clinic – an explanation he backs up by considering the organisational history of the clinics, and the different diagnostic philosophies which influenced their respective founders. He concludes that approximately one-third of the outcome of an autism diagnosis in those clinics is determined by the culture of the clinician – and he notes that, despite these significant differences in clinical culture, they were all specialist clinics which put great emphasis on diagnostic rigour, and many diagnoses are done in generalist clinics with significantly less rigour, so it is entirely possible the cultural contribution might turn out to be even bigger if one brought those diagnoses into the analysis. So, one third (maybe even more) of the time, whether you have ASD depends, not on you, but on which clinician you see.

> instead the real explanation is differences in the professional culture of each clinic

A cultural aspect is that some practitioners believe the line between ASD and 'not-ASD' is in a different place. In my view, the pathologized label of ASD only really belongs to people that need support (even then I find the 'disorder' label problematic), but a broader autistic label belongs to anyone affected by autistic traits. The distinction of how many traits is the minimum for a autistic label is somewhat arbitrary, and whether someone cares to identify as autistic in light of these traits is outside the purview of the clinic.

> and whether someone cares to identify as autistic in light of these traits is outside the purview of the clinic

Yes, because autism is a cultural construct, and each individual gets to negotiate their own relationship with that cultural construct

Which is not saying it is purely a cultural construct - we started with some very real traits, and then cooked up a family of (unproven) scientific theories to try to explain those traits, and then erected a cultural construct on top of that, which has a rather complex relationship to the traits and theories which it justifies itself with

It's not exactly what I meant. If you have the traits, you may not wish to describe yourself as autistic. Some of that comes down to the stigma. If you don't have autistic traits and you claim to be autistic, that's just being dishonest.

The 'cultural aspect' is that every society develops tacit rules around conversation, dress, eye contact, politeness, taboos, how to move and touch etc. and penalizes people who can't divine and follow them. However, some cultures are more aligned with autistic traits. Like in Russia it's considered strange (even false) to smile without reason. Some countries have avoidance of eye contact as a feature.

Edit: Interesting aside is Sabine Hossenfelder's video on autism. She takes a self-assessment at the end which yields a positive result, and then concludes, "I don't think I'm autistic, I'm just rude and German", which I think isn't some confirmation that autistic traits don't exist in the context of Germany (Hans Asperger was a Nazi instrument and from nearby Austria after all) but that some countries don't exclude people with autistic traits. And that kind of tolerance is really the ideal end goal.

> It's not exactly what I meant. If you have the traits, you may not wish to describe yourself as autistic. Some of that comes down to the stigma. If you don't have autistic traits and you claim to be autistic, that's just being dishonest.

I have a different perspective. What makes some traits "autistic" and others not? Okay, there is some positive correlation between them - but lots of "non-autistic" traits are positively correlated with "autistic" traits too. How big is the difference in correlation between different "autistic" traits on the one hand, and between "autistic" and non-"autistic" traits on the other? Is that differene in correlation big enough to provide scientific validity for the distinction between those two sets of traits?

Lynn Waterhouse argues that autism originated in a couple of related but distinct scientific hypothesises – Leo Kanner's "early infantile autism" and Hans Asperger's "autistic psychopathy" – both concerning a cluster of postively correlated traits in certain children, which displayed some similarities to those traits displayed in adults with schizophrenia which Blueler had labelled "autistic". As those related hypotheses evolved, they were eventually merged into a single hypothesis "ASD" – which however, is so vague and amorphous as to be essentially unfalsifiable. Waterhouse argues that Kanner's and Asperger's hypotheses were perfectly legitimate for their time (the 1940s), but have never been confirmed, and the best interpretation of the available evidence is that "autism"/"ASD" (in all its versions) is a false theory, that should be filed in the annals of the history of science next to phlogiston and the luminiferous aether. But, like Ptolemy's epicycles, rather than abandoning a scientific dead end, people keep on fiddling with theory to try to keep it alive.

But, even if Waterhouse is right, and "autism" is an inescapable scientific failure - it has had enormous cultural success. And that's what I mean to say it is a culutral construct. Indeed, its cultural success is arguably a major factor stopping people from moving on from it, even if (Waterhouse argues) that is the right thing to do from a purely scientific perspective. And to be clear, while Waterhouse denies that "autism" is anything other than an arbitrary grouping of traits, a label based on history rather than the best current science, she doesn't deny for a minute that sometimes these traits can produce significant impairment–and even if we judge it a failure as a scientific theory, that doesn't in itself answer the separate question of the benefits or harms of the cultural construct that theory has sprouted.

Laurent Mottron's perspective [0] is less radical than Waterhouse's, but has some overlap. He argues (contra Waterhouse) that it is too early to declare the narrower 1980s/1990s idea of "autism" (and even its cousin "Asperger's") a scientific dead end. But, he thinks we've blown up its boundaries to the point that it has lost all scientific value, and so at that point he agrees with Waterhouse that 2020s ASD is a scientific dead end. However, rather than Waterhouse's proposal of abandoning the concept entirely, and looking for complete replacements, he wants to go back to a focus on the older narrower concept (which he labels "prototypical autism"). I think he'd agree with Waterhouse that the current concept is largely a cultural construct riding on the back of a failed scientific theory; but they disagree about the scientific value of its prior iterations.

[0] see https://onlinelibrary.wiley.com/doi/10.1002/aur.2494 and https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9054657/

What was once autism is disintegrating into the neurodiversity movement, which I don't disagree with. I suppose it just becomes unwieldy when certain traits cluster frequently to say one has, by example, Sensory Processing Disorder, Dyspraxia, Inattentive ADHD, Social Anxiety Disorder, engages in stimming and regulating behaviours, avoids eye contact, occasional meltdowns, etc. etc. Autism was a shorthand for a kind of fuzzy classification of this clustering. I can see the merit to the opposing argument, but I speculate that there will be some neurological commonality that is found, and this fuzzy classification will have been fruitful.

There's growing evidence of neuroanatomical differences between ASD and control populations in (replicable) studies, and I think further neurological study can be the only path forward to settling this debate as to whether autism needs to fragment, change shape, or be abolished as a concept entirely.

I'm sorry for whatever caused you to feel the need to respond this rudely to the discussion, but I was talking about myself in my comment, not you.