[skissane]

> Yep, I think it's a useful phenotype, not a disease unless the degree to which the otherwise useful traits manifest causes one to struggle to live a happy life.

Yes, it is important to distinguish phenotypes from disorders. If one has the phenotype, but isn’t impaired by it to a clinically significant degree, one does not have the disorder (ASD), but one does have the broad autism phenotype (BAP; aka the broader autism phenotype or subclinical ASD). [0] The number of people who have the phenotype without the disorder is likely several times those having the disorder. The broad phenotype is particularly common among close blood relatives (parents/siblings/children) of those with the disorder. It is also has an elevated prevalence among STEM professionals.

I think it is unfortunate there is not greater public awareness of BAP and its distinction from ASD. Probably many of the people who describe themselves as “on the spectrum” in a colloquial sense have BAP not ASD.

[0] strictly speaking, one can speak of a narrow autism phenotype (phenotype with the clinical disorder) and a broad(er) autism phenotype (phenotype without the clinical disorder), which together make up the autism/ASD phenotype as a whole. Given the distinction between the two is clinical, it is possible in theory for the exact same phenotype to be broad for one person and narrow for another - one person might be in a less supportive environment which produces clinical impairment, the other in a more supportive environment in which impairment remains at a subclinical level - impairment arises through phenotype-environment interaction, it is not always inherent to the phenotype in itself

[CobaltFire]

Thanks for the terminology here! I was diagnosed as Asperger’s over 20 years ago, but in a sealed part of my medical record so I didn’t get booted out of the military. Went on to complete 22 years.

My son, however, has severe ASD and will likely need a caretaker for life.

The difference in the spectrum is astonishing.

[Fnoord]

Military and police famously attract people (primarily males) with autism. I am not related to military but since war in Ukraine I followed a channel called Speak The Truth to understand how a US veteran with Republican leaning background (he himself defines himself more neutral than that) to get context to the war. The guy ticks all the ADHD boxes (ADHD is considered to be related to ASD), to the point it gets hilarious.

Do I agree with him on everything? Well, I am on UA side but politically I am progressive left and European. So I obviously do not agree with him on a lot of matters. But apart from his ads (lot of BS/scams) it has been interesting and, at times, valuable. It is a misconception that people on the spectrum get along with each other.

[PrimeMcFly]

> Yes, it is important to distinguish phenotypes from disorders. If one has the phenotype, but isn’t impaired by it to a clinically significant degree, one does not have the disorder (ASD), but one does have the broad autism phenotype (BAP; aka the broader autism phenotype or subclinical ASD). [0] The number of people who have the phenotype without the disorder is likely several times those having the disorder. v

This seems like a way to try and reason that you can be autistic and not have the 'disorder', but it doesn't work like that. There is no one who has the phenotype without the disorder.

[h0l0cube]

The subset of ASD is really just BAP where the intensity of the traits and/or their particular expression come in conflict with the expectations and basic needs of daily life, requiring support (and diagnosis). Even in absence of this conflict, the acknowledgement of one's autism is useful from a self-compassion and tolerance standpoint

[skissane]

> Even in absence of this conflict, the acknowledgement of one's autism is useful from a self-compassion and tolerance standpoint

What is "autism"? It is a dimension, a continuum, (even a set of dimensions) not an either-or category. Of course, at certain level of extremity or severity of impairment, the dimensional becomes effectively categorical. But as you move along that continuum in the other direction, there is no clearcut boundary between it and "normality"/"neurotypicality", nor is there a clearcut boundary between it and other distinct forms of "aneurotypicality" with which it has significant overlap (e.g ADHD, OCD, the schizophrenia spectrum, personality disorders, PTSD, eating disorders, giftedness and intellectual disability). Clinical diagnosis is always going to have a subjective element – cases far from those boundaries almost everyone will diagnose the same way, but near those boundaries the diagnostic outcome often says more about the clinician than about the patient/client. The boundary is shifting over time, it varies geographically, and it is questionable to what extent the justification for that spatiotemporal variation is scientific, as opposed to social/cultural/political.

Do I have autism? Well, do I want to have autism? I once almost paid over $1000 for an ASD assessment for myself, but my psychologist and psychiatrist talked me out of – they both said "if you really want to pay over $1000 for a piece of paper telling you what you already know, go right ahead-but maybe there are other things you'd rather spend that money on?" I decided for now to take their advice. But if I ever decide I really want to add ASD to my personal diagnosis collection, I can fork that money out and I'd be rather surprised if I didn't get it.

I have the traits I have, but a diagnostic label is not the same thing as the traits it labels. Our son's psychiatrist once said to me something which will always stick in my head: "psychiatric diagnoses are these strange hybrids of scientific theories and cultural constructs; some clinicians put more emphasis on the scientific theory perspective and others more on the cultural construct perspective; I myself don't have a firm view on the correct balance between those two perspectives, because I haven't been keeping up to date with the research literature on those debates"

[h0l0cube]

I'm saying that ASD only really matters for when support is needed. Diagnosis can open doors to government provided support.

I think self-diagnosis is fine for people who don't require support. Though I've noticed that some people will both not acknowledge it, but at the same time unconsciously hold prejudices in relation to this 'difference' that they don't acknowledge, often in condescending ways.

[skissane]

Which I think was part of what my psychologist and psychiatrist's point was – in spite of my various issues, I somehow manage to have a job that pays well, a wife and two kids, cars, property, investments... I wouldn't be eligible for any government-provided support (nor should I be), no matter what pieces of paper I might purchase. Someone else who doesn't have those things, such a piece of paper can have some real practical benefits for them (irrespective of whether the piece of paper is an "accurate" or "correct" diagnosis)

> I think self-diagnosis is fine for people who don't require support.

This is what I don't agree with. I associate "self-diagnosis" with over-reification of ASD, which is a pet peeve of mine – emphasising categorical over dimensional understandings, ignorance of the doubts over ASD's validity as a scientific theory, ignorance of the evidence that it is (partially) socially constructed. And that's hardly a point unique to ASD, it applies to all psychiatric diagnoses – yet, many people seem to "identify with" ASD as their "true self" to a degree that rarely seen with other disorders – how many people identity with BPD or schizoaffective disorder or dysthymia in that way? And I don't like that identification. Whatever diagnoses I may or may not have, they are not me – and I don't want my children growing up identifying with their diagnoses either.

[h0l0cube]

> Whatever diagnoses I may or may not have, they are not me – and I don't want my children growing up identifying with their diagnoses either

It's not a matter of identity, but explanatory power. To reiterate, the self-acknowledgement/'diagnosis' as autistic (not ASD) is 'useful from a self-compassion and tolerance standpoint'. So instead of, why do I find X difficult when everyone else finds it easy (or even laughs/condescends/points it out), I can say, I'm autistic, that's not easy for me.

I agree that autism is a fuzzy socially-defined phenomenon. The distinction, once again, is only as valuable as how much it comes into conflict with society. So, by example, if a child is being made fun of for not understanding the tacit social rules of the playground, or a teenager of the art of seduction, or an adult of polite conversation, this self-awareness could be useful as a way of understanding one's own difficulties, and also as a way of surmounting or managing them. It can also be useful for others to be more aware or tolerant. I also agree, it's not on the person themselves, they are not broken in some way.

[Firadeoclus]

> It's not a matter of identity, but explanatory power. To reiterate, the self-acknowledgement/'diagnosis' as autistic (not ASD) is 'useful from a self-compassion and tolerance standpoint'. So instead of, why do I find X difficult when everyone else finds it easy (or even laughs/condescends/points it out), I can say, I'm autistic, that's not easy for me.

It bothers me a bit that, if you turn it around, the lack of an explanation would be an impediment to self-compassion and tolerance. "I find X difficult" ought to be enough, whether that coincides with any other traits (autistic or otherwise) or not.

[skissane]

> It's not a matter of identity, but explanatory power. To reiterate, the self-acknowledgement/'diagnosis' as autistic (not ASD) is 'useful from a self-compassion and tolerance standpoint'. So instead of, why do I find X difficult when everyone else finds it easy (or even laughs/condescends/points it out), I can say, I'm autistic, that's not easy for me.

I have no problem saying I have autistic traits, as do both my children. I find some things easier than the average person and other things harder, and no doubt my autistic traits have something to do with both. But I'd much rather say "I have autistic traits" rather than "I am autistic". Traits have far greater reality – and scientific validity – than diagnoses.

Autistic traits are also very common in people with something other than autism – in fact, most psychiatric disorders, a significant subset of those diagnosed with them display heightened (even if subclinical) autistic traits. Identifying with a diagnosis rather than traits encourages ignorance of that reality.

[Fnoord]

Broken or not depends on context and who you ask. In the end we are all HR and as many of us must function in society. Add to that that there's an abundance of jobs due to babyboomers quitting the workforce (though less in USA according to Peter Zeihan) and there is a large benefit having people in general function in society.

My daughter is 5 y.o. and has a best friend on school. Our daughter is undiagnosed for now, we both are. I get the feeling the mother of her best friend isn't happy with them being best friends. Why? Fear of being excluded, I suspect.

Right now I'm unemployed since December and the lack of employed role model for my kids is thus far more harmful than lack of income (though latter will become relevant again within time).

[lcnPylGDnU4H9OF]

> BAP

Thanks! I will remember the categorization. It’s certainly useful to distinguish between a person who needs a full-time caretaker and one who can hold a full-time job where the only categoric similarity is “they think more like each other than not”. I’ll try not to use ASD for myself anymore.

[Fnoord]

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.

[skissane]

> 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.

[h0l0cube]

> 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.

[skissane]

> 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

[h0l0cube]

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.

[s1gnp0st]

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.