I'm diagnosed. No brain scan required, but heteroanamnesis was. People who know you well like your parents or partner will be extensively interviewed. As well as yourself, and you (and they) will get many questionnaires which will be cross referenced.
Doesn't feel like an insult at all to me. But then again I've long ago accepted the way I am (society does not).
The way I feel is constantly between bored and overloaded. Simple tasks can overload, yet complex matter or social settings (birthdays, dinner, chrores, etc) can bore me.
I have this with programming but also putting the dishes in the dishwasher but also in gaming. There are too many possibilities. Yet I really dig the freedom to explore the puzzles. Because if the sandbox is too strict, I feel trapped. Which is why vi is a great editor but also one I will never fully master. And that's OK; c'est la vi.
I had such a hard time researching autism after someone mentioned it might apply to me because I found most articles to be very stigmatizing. A lot of language like "ASD is a developmental disorder that impairs a person's ability to communicate" etc. Looking for actual examples now, I am seeing more nuanced language (eg "People with ASD may respond differently to the world"), but the stigmatizing language I previously found really put me off of it for a long time. Slowly I have embraced my differences as somehow on the spectrum, but I still sort of have this feeling of "different people are different" and I question whether pathologizing differences is that useful. Though I do hear people who say that diagnosis was helpful to them.
It is a spectrum and every person is unique. With every disorder, you need to tick enough boxes in order to fall under the definition (currently using DSM-V though I know one org stubbornly sticking to DSM-IV as it benefits them). Not all boxes may apply, or may apply severely. It is the same in other disorders. But also personality disorders define our very being and are very different to combat, so to conform to them is living in acceptance and harmony with them. Ie. it is something one has to live with. Anyone diagnosing a (personality) disorder worth their salt is going to explain this much better than I just did. And of course one can reap the benefits of a disorder. Stephen Fry, the actor (also a terrific writer) famously is bipolar (a term with a predecessor being manic depression). One thing which triggers some people with autism is wording; they don't have autism; they're autistic. Personally, I don't give a shit about it, but I feel the same regarding pronouns like they/they. Apparently it is a really big deal for others and I need to remind myself about that. Otherwise, I cross the line of bullying. But when I am describing myself or in general (not someone specific) I feel at liberty to pronounce the way I want. Which is careless, I admit, and a bit of self-ridicule seems healthy to me, too.
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.
> 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
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.
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.
> 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.
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
> 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"
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.
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.
> 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.
> 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.
You make a good point. The "I find X difficult" is a 'disability' trait, and disabilities are only really relevant where they conflict with the expectations of wider society. In all cases it's really the social exclusion that's the problem. If someone has a trait that either can't be changed, or takes exceptional effort to mask, it shouldn't be on them to do the impossible. If however it's just habit, or actual lack of effort to change, that's a completely different thing.
> 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.
I think the word autism has become such a loaded term that it has become undesirable. The removal of the distinction between 'autistic person with significant access needs' and 'autistic person with low access needs' (formerly aspies) has been problematic, in that it took a term historically (and incorrectly) associated with Rain Man and conflated with someone who's socially awkward, might struggle with emotional regulation, be hypersensitive, may have difficulty with motor skills, have nervous ticks and habits, shutdown in overwhelming situations, burnout from normal tasks, etc. but otherwise can function in a day job, pay the bills, do the laundry, cook, eat, and bathe themselves, if only with more struggle.
I've heard this plaint a lot lately, that there needs to be different language to talk about this common neurological phenomenon. I heard that there was a push to write the DSM VI in terms of its biological mechanisms. It sounds like an almost insuperable challenge, and might explain why an updated revision of DSM V was released after a decade, instead of a new manual.
> I heard that there was a push to write the DSM VI in terms of its biological mechanisms
There are two basic problems with that proposal (1) we still largely don't know what those biological mechanisms actually are, especially not with the degree of confidence necessary for them to be used for individual diagnosis (2) there is massive social/cultural/political/institutional/professional/financial investment in some of the current labels (especially autism/ASD), even though they correspond poorly to what is really going on in the brain, and any attempt to replace them with a more accurate system of labelling or diagnosis produces major pushback from people who are threatened by loss of those investments
One proposal (in the second paper I linked) is to merge ASD, ADHD, intellectual disability, borderline personality disorder, oppositional defiance disorder, language impairments, learning disabilities, tic disorders, atypical epilepsy, and reactive attachment disorder into a single disorder (an undifferentiated "neurodevelopmental disorder" or what Christopher Gillberg calls "ESSENCE"). ASD is already a kitchen sink, but still small enough that people can pretend it isn't; let's make a kitchen sink so big that nobody can deny it is one. Including BPD and reactive attachment disorder also helps clarify the complexity of causation, that many children's problems are produced by complex interactions between biological factors (genetics, in utero exposures, etc) and social environmental factors (trauma, abuse, neglect, maltreatment, parental mental illness, etc)–whereas labels like "ASD" wrongly put all the emphasis on the former to the exclusion of the latter
Regarding the two basic problems: I imagine the people involved are aware of the enormity of the challenge, and don't seem to be concerned about Big Psychiatry (nor does new hard-science based diagnosis and treatment threaten profits of that industry). But really I don't know. It was just an off-hand comment from Robert Sapolsky's Human Behavioral Biology lecture series on YouTube, they might not be attempting this at all.
> whereas labels like "ASD" wrongly put all the emphasis on the former to the exclusion of the latter
Early intervention autism treatment has limited success. If you've got dyspraxia, inattention/hyperattention, fidget, avoid eye contact, have meltdowns, speech/processing delay, etc. you're fighting something at the neurological level that can at best be attenuated over time by plasticity, or simply just managed, like epilepsy.
> you're fighting something at the neurological level that can at best be attenuated over time by plasticity, or simply just managed, like epilepsy.
Nowadays, the label "ASD" is applied both to children whose issues become apparent in early childhood, and also to children who don't develop serious issues until later in childhood, even adolescence. A two year old with severe issues, it is much more likely to be predominantly biological in origin. But a ten year old with milder issues, it becomes much harder to say to what extent it is biological compared to what extent it is due to how they've been raised.
Consider families where one of the parents (sometimes even both) has a personality disorder such as BPD or NPD – that can produce difficulties with the parent displaying consistent emotional responsiveness to the child, which can harm the child's emotional development, resulting in attachment disorders, emotional and behavioural disturbances, etc. Ideally, the parent is aware of this and can get professional help in preventing this from happening; however, many such people are in complete denial about their condition, and will refuse to seek help. There is a lot of symptomatic overlap between children with attachment disorders and ASD. Commonly, there is lots of funding and resources available for the ASD label, little or none for any others. If the parents aren't open about what is really going on, few professionals want to go digging. So they'll diagnose the child with ASD. If anyones suggests parental issues may be a contributor, many will trot out the tired talking point of "Bruno Bettelheim's discredited refrigerator mother theory".
Added to this, it isn't like "autistic traits due to bad parenting" and "autistic traits due to biological factors" are mutually exclusive categories. It is entirely possible the child already has a baseline genetic disposition to autistic traits, which are then being amplified by the poor family environment. There is a lot of overlap between personality disorders (especially BPD) and ASD, and some even question the validity of the ASD-BPD boundary – even if they are indeed distinct conditions, they likely have some shared genetic loading.
> Commonly, there is lots of funding and resources available for the ASD label, little or none for any others. If the parents aren't open about what is really going on, few professionals want to go digging. So they'll diagnose the child with ASD.
I agree that there's probably a lot of mis-diagnosis, but that's hard to quantify as an outsider to the profession of psychology. I think this is separate to autism being a nurture over nature thing.
> Added to this, it isn't like "autistic traits due to bad parenting" and "autistic traits due to biological factors" are mutually exclusive categories. It is entirely possible the child already has a baseline genetic disposition to autistic traits, which are then being amplified by the poor family environment.
I agree that genetic, pre-natal, and very early childhood environments have a huge impact on behaviour. My opinion relies heavily on an assumption that there's genetic and pre-natal neurological/gene expression differences for autistic people, and that is probably the source of our disagreement (i.e., nurture vs nature).
> I agree that genetic, pre-natal, and very early childhood environments have a huge impact on behaviour.
I agree, but I don't know why we should have "very early" there. Late childhood and adolescent environments can also have an enormous impact on behaviour.
> My opinion relies heavily on an assumption that there's genetic and pre-natal neurological/gene expression differences for autistic people, and that is probably the source of our disagreement (i.e., nurture vs nature).
There's genetic and pre-natal neurological/gene expression differences for lots of people–yes, including "autistic" people, but also including people with "non-autistic" disorders (such as ADHD, OCD, personality disorders, schizophrenia spectrum, bipolar). I'm unconvinced there is any fundamental difference between "autism" and "non-autistic neurodiversity"–"autism" is a heterogenous collection of many distinct differences, and some individuals with "autism" likely have more in common with certain cases of "non-autistic neurodiversity" than they do with most other cases of "autism". The same difference in gene expression or neuroanatomy can produce radically different behavioural results in different social environments
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).
When I was 18, I attended an elective subject at college about "Professional communication". It was the first time I learnt that body language is even a thing. There's definitely courses to help with communication skills, particularly in a professional context, though I imagine the quality of said courses would vary dramatically. Not to mention there's a whole cottage industry of unqualified 'life coaches', 'style coaches', and so on, though their value is probably even more variable. I'm not sure if they could help employability, but such services are available to everyone.
I got help. Not when I was 18 when I needed it (could not finish my education), or at the very least nothing of substance but with a severe lack of empathy. As an adult, as part of my autism diagnosis was therapy understanding autism. That was fascinating, it helped me a lot. I also followed an adult education aimed at people with autism. It didn't fully align with my interests so I had to find something related to that within the job market. I ended up with a job within that field, with 3 one year contracts. Because I already was deemed 100% unemployed the org got benefits for contracting me. Unfortunately, my neighbors complained about our kids noise and even accused me of being a child predator/rapist. The former (regarding the noise) being truth though something we do try to minimize and the latter BS but also my worst nightmare before becoming a parent. I ended up with a burnout (and on the brink of a psychosis) and slowly got back to working full-time. I reported myself 75% better, but unfortunately my contract didn't get renewed (that sword of Damocles was apparent back when I got the burnout, so it was of little surprise).
The day I got unemployed I had to report to the government employment agency, and the above was basically not believed. I feel misunderstood. I already mentioned the story truthful though omitting some personal details, so I'd like to add the art of cooking a dinner as well as programming are some of the most awesome things one can perform, in my opinion. But because of the endless possibilities and the many small steps I can only perform very simple, basic, archaic instruction sets.
You neighbors sound like trash. That sounds like a tough situation, and it's a small mercy that you have at least the financial support of the government. Autistic burnout is real, and I've cumulatively spent years out of work because of it—once again I was fortunate to have the financial buffer. I eventually got to a better place, but not before being in the workforce again. If it helps to talk, I've put my Slowly ID in my bio for a few days
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.
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.
> 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.
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.
> There's growing evidence of neuroanatomical differences between ASD and control populations in (replicable) studies
I'm not sure how many of those studies actually have been replicated. My impression is that most of them fail to replicate.
And even those which do replicate, have two serious issues: (1) they only establish group differences not individual differences-even if on average people with ASD are more likely to have X, some ASD individuals will lack X and some non-ASD individuals will have it, meaning we can't actually say X=ASD; (2) most of them are flawed in only considering a single diagnosis (e.g. ASD vs "typically developing"), not multiple diagnoses (e.g. ASD-only vs ADHD-only vs OCD-only vs two or more of the above vs "typically developing"), which renders them incapable to answer questions about the scientific validity of the boundary between ASD and its related diagnoses
Don't take it from me, take it from the first link on a cursory google search:
> Autism Spectrum Disorders (ASDs) are a heterogeneous group of neurodevelopmental disorders that are diagnosed solely on the basis of behaviour. A large body of work has reported neuroanatomical differences between individuals with ASD and neurotypical controls. Despite the huge clinical and genetic heterogeneity that typifies autism, some of these anatomical features appear to be either present in most cases or so dramatically altered in some that their presence is now reasonably well replicated in a number of studies. One such finding is the tendency towards overgrowth of the frontal cortex during the early postnatal period.
My interest in this thread is exhausted, so I'll agree to disagree with you on the biological deterministic aspects of autism, and let you dig down that rabbit hole.
My guess is that either you have no lived experience with autism, don't know many people in the autistic community, or have a lack of sensitivity to the very real nature of the disabilities it entails, even in the undiagnosed cohort—enthusiastic misdiagnoses aside. The difficulties from dyspraxia are of very real consequence, regardless of social interpretation. Stimming and regulating behaviours are a real thing, regardless of whether or not it is frowned upon in a social context. Meltdown, i.e., the consequences of not being able to regulate congruently to one's environmental stimulation and fatigue, is a real thing, whether it is accommodated for or not, in the same way that an epileptic fit is a real thing. One could say that a majority of the population is affected by this, and it doesn't change my argument. One could say that some people are so barely affected by their meltdowns, and it doesn't change my argument; they are still real adverse effects of real consequence experienced by people—actual disability—and no amount of equivocating makes them go away. There's perhaps people who are slightly hypochondriac and are looking to pathologize themselves, but this doesn't change my argument, because they aren't autistic, they're just making false claims. There's perhaps some practitioners who are either incompetent or corrupt, and this doesn't change my argument, because they are misdiagnosing.
> ASD-only vs ADHD-only vs OCD-only
Strictly my opinion: the kitchen-sinking of ADHD, OCD, ASD, dyspraxia, meltdowns etc. is due to the gaining traction on the idea that there's a neurological commonality that drives these behaviours, and their attendant comorbidity. Occam's razor.
The D in ASD means "disorder". If people with that weren't impaired in some way, it wouldn't be called a disorder but a personality trait.
Pathologizing is useful in that if ASD was considered a simple personality trait, that would mean there would be no need to help people with ASD in any way.
The idea is that before providing help, which can be in the form of medicine, therapy, special arrangements, welfare, etc... we need some kind of way to establish that you need that help. A diagnosis for a pathology is just that, a way to help people, not a way stigmatize or diminish them. Now, how effective that help will be is another story, but recognizing the pathology is a necessary step.
ASD is the disorder, but being autistic in itself is just a type of neurodivergence (a neurotype). I do not know anyone who is autistic without also counting for ASD, but it is an important distinction.
I don't think we have any examples of people being neurodivergent in a way that is purely positive, so every instance would likely be some sort of disorder.
Plenty of neurotypical people can't handle certain situations. IMHO, neurodivergency can be the same, it's just that the situations that they can't handle can happen to be situations that are expected by society, so they're automatically disordered. Plenty of neurodivergent people have found a way to function in society, they just can't all do it the exact same way as neurotypicals.
Of course you're not wrong that it's likely to come with disorder anyway, since for example the autism spectrum has all sorts of possible symptoms, like being unable to learn how to speak fluently, or at all. It's hard to argue that not being a disorder, just in terms of it being an unnecessary impairment and not just a difference in specialization.
The trick there is to search for stuff written by actual autistic people. A lot of the "official" literature is at best very rude. "ActuallyAutistic" is a keyword that gets used a lot by autistic people writing for autistic people.
> had such a hard time researching autism after someone mentioned it might apply to me because I found most articles to be very stigmatizing.
> I question whether pathologizing differences is that useful.
Homosexuality was first referred to as a "Sexual Deviation" and a "Sociopathic personality disturbance". It's no longer considered a disorder.
Transgenderism (Transsexualism) was referred to as a "psychosexual disorder" or "gender identity disorder". It's no longer considered a disorder but gender dysphoria still is.
Autism is still a disorder, and nothing but a disorder. Autism is defined medically, wholly by weakness, as if that's all autism is. Something we should maybe cure one day, or come up with a pre-natal test for so be can have abortions to ensure such people aren't born.
The "Gold standard" treatment for autism Adaptive Behaviour Analysis has some common heritage between the treatment of Autism and Transgenderism, which involved using adversives (torture), to get people to act in a more gender conforming or less autistic way. I still think about that. If you use essentially the same treatment to modify the behavour of a transgender person or an autistic person, if you do it to the former it's a hate crime, if you do it to the latter it's a medical necessity[1]. I find that VERY revealing as to medicines attitude towards the Autistic, that they are the broken ones who need to change to fit our glorious and perfect society.
The pathologization of Autism is a crime against humanity and probably the first or second most evil thing that has happened to me throughout my entire life. Autism wasn't always a pathology - go 50 years back and nobody considered Autistic here would be considered Autistic by a doctor, wouldn't be considered "Disordered" by their peers, they might have been considered odd but not disordered. Nowadays, there's too much money in pathologizing people as disordered, everybody from parents to schools to doctors to social workers to the autistic people themselves benefit.
I see the status quo as fucked up and firmly believe modern psychiatry has greatly compromised Autistics quality of life through their hateful views on Autism which rub off on the wider popuation. When these esteemed medical experts call you disordered - why shouldn't everybody else think you are?
The way forward I see is how we handled homosexuality and transgenderism - de-pathologise being different from other people - but diagnose people with mental conditions that impair quality of life which are associated with Autism - and use those diagnosis's to allocate support and funding. This model also lets you make more sense of things like how both the richest man in the world and profoundly disabled people who can't hold down a job could both be "Autistic".
[1]ABA is not necessarily evil, it's more how it's used for the purpose of making autistics less autistic or transgender people less transgender which is philosophically fucked up
Conformance is an advantage, a way to progress and get what you need or want. I feel weird reading people saying that it would be wrong to try to help people with trouble conforming, conform: what would be the alternative ? Realistically, tolerating differences can only go so far as the other tolerates it: autists and transgenders have similar issues in accepting that the wider society is different from them and the compromise has to start at both ends. And I think nobody's really asking anyone to actually change behavior, but simply to hide it better in temporary/crisis/exceptional situations.
For instance, I think homosexuality's long combat to marry, a very VERY conforming demand, is helping it move away from the view others had of it being a non-conforming sexual behavior. Nobody's talking anymore of the physical act, the actual difference, but instead we talk about their attempt to conform, and it's very hard to find arguments against it.
Autism is literally defined by a deficit in social skills + restricted repetitive behaviours and nothing else so that is basically what gets treated - the symptoms gets treated with behaviourism and the underlying causes of that behaviour are ignored. GI problems are comorbid in like ~40% of autism cases. Do schools stress getting these autistic kids exercising and teaching them how to cook healthy meals so they can overcome these struggles, live a life without pain, so they can not only live a higher quality of life but have an easier and more pleasant time being social? Sometimes - but the overwhelming emphasis is simply making them act more normal in a very simplistic and direct and to the point way. The system isn't designed to improve autistic kids quality of life you see, it's designed to make them less troublesome for the people around them, and hold them accountable for the trouble they're causing, that's people's mindset.
There is a very cold and unemphathetic attitude towards autistic kids where they're just expected to be iron willed stoics who behave using a fake personality that pleases others around them while their underlying issues basically get no attention from the system. I think if autistic people were treated with more empathy, as less of a monolith, as being defined as being more than "social deficits + repetitive behaviours", we would go a long way.
I hesitate. I do see your point, but I find it maybe short sighted: see, pleasing other is self-serving, the more you please them the more they adapt to you. There is an advantage in making others enjoy your existence more, and if we're going to actually help, embracing what societies are, machines crushing difference for a reductive common compromise, teaching autists to pretend to play the game is going to work better than teaching current winners that they should lose a bit to help autists feel better.
I suppose our disagreement might be in how feasible each is: it is easy, maybe lazy, to try to make autists adapt to the rest of us and probably impossible, at best extremely expensive, to make the rest of us more atuned to their needs. Not that we dont want to, but we're all thermodynamics machines trying to save energy: we may never really massively expense some to their benefit, sadly, especially if they dont learn to go our ways, sometimes.
According to the CDC, 52% of schools exempted students with cognitive disability, and 86% exempted students with long-term physical and medical disability from physical education[1].
You talk about what I'm saying being short-sighted because of "extreme expense" and "massive expense", and how society serves to "Crush difference". I call absolute horseshit. Schools spend MORE on the physical education of normal students than they do with the majority of their disabled students. They do NOT crush difference, they alienate their disabled students from the rest of the student body. They discriminate against them, they make them sick though idleness, they set them up for failure, and when they fail to pretend to play the game it's all blamed on their sick minds and weak bodies. It's not the schools fault of course, it's that these students are such freaks that the school is blameless for them failing. Of course kids who don't exercise are failing socially - not exercising makes you ugly, mentally unwell, markedly different from the other kids, and culturally disconnected - if they gave a fuck about autistic kids social functioning they would make them exercise but they don't care.
> And I think nobody's really asking anyone to actually change behavior, And I think nobody's really asking anyone to actually change behavior
Literally regulating behaviors are punished in regular social situations, by parents, teachers, police, etc.
> homosexuality's long combat to marry
Strange tangent. Who is 'homosexuality' here? Demanding equal treatment doesn't necessary mean you need to exercise all liberties that are available. I'm certain there are many that didn't have a desire to marry that also believed in equal treatments and the affordance for those that did want to marry, that they could.
That's the trivial part. Conformance isn't about petty differences in lifestyle or ideas. It's about being able to function together.
Humans can't cooperate with other people if they're not predictable enough. The flip side of "theory of mind" is that you're going to have a bad time with me, if you can't intuitively grasp my reactions and behavior. And vice versa. The major job of culture and civilization is to reduce variance in people, because the easier it is for us to understand each other, the better and more peacefully we can cooperate.
Again, this is not about different learning styles or different personal preferences. It's about whether or not I can trust this person to work with me, to live around me. Will they melt down or get violent at slightest provocation? Are they telling the truth? Can I trust them with work, or with not randomly swerving their car into a crowd because fuck knows why? That's the other end of the spectrum of conformance, and people who are stuck there end up being segregated away - committed to prisons or mental institutions or otherwise pushed aside and kept away from civilization's more powerful toys.
In this broader spectrum, it's rather obvious that conformance is both an advantage and a necessity. Not total conformance - just enough to be able to be a part of society. And society itself can be accepting of only so much - there's only so much unpredictability our wetware can process before fight-or-flight kicks in.
> Will they melt down or get violent at slightest provocation?
Autistic meltdown can be made a lot worse if someone hasn't the theory of mind to understand when someone is experiencing it (i.e., the double empathy problem). This can lead to situations, especially where law enforcement is involved, where people get killed. Physical abuse from parents towards autistic children—once again due to lack of empathy—can cause outbursts to be excessively violent.
If you have difficulty reading autistic people, there's training for that, but on the other side, asking autistic people to not meltdown is akin to asking an epileptic person trying not to have a fit. If someone gets particularly violent during meltdowns, they essentially need to be kept away from other people. This can't be trained out with therapy.
> Are they telling the truth?
If they're autistic, likely answer is: To a fault. A higher IQ autist (archaically 'aspies') can learn social mechanisms, rarely even over and above a neurotypical, but with greater conscious effort and delay.
> or with not randomly swerving their car into a crowd because fuck knows why
Sounds like a conflation with psychosis. I'm not sure how it's relevant. Many autistic people do struggle with driving and may have dyspraxia, which may require more lesson time, or not qualifying a driving test. I wouldn't class that as exceptional 'conformance' for autists though.
But truth be told, autistic people are coached all the time by caregivers on proper behavior, because as you say they have to live in the world.
I think you have it backwards. The majority of people don't tolerate the minorities. Go on autism or trans reddit. It's full of people desperately trying to figure out how to fit in. It takes very little effort to respect people who are different from you.
> The majority of people don't tolerate the minorities.
The majority of people don't know, and don't care.
> Go on autism or trans reddit. It's full of people desperately trying to figure out how to fit in.
Obviously, beacuse people who figured out how to fit in just fit in, and don't hang out much on such subreddits. On those boards, you're dealing with a minority within a minority.
> Obviously, beacuse people who figured out how to fit in just fit in, and don't hang out much on such subreddits. On those boards, you're dealing with a minority within a minority.
Social difficulty is probably the most common affliction of autistic people. I've met extravert hypersocial autists, but they are very much the minority of the minority.
From the second line of the wiki article for autistic spectrum:
> Other common signs include difficulty with social interaction
It takes a lot of effort, actually. For instance, Im a minority in my current country: cant speak the language well (Chinese), cant write nor read much, dont look like them at all, work in high level jobs they cant relate to for the most part, and am European to a fault in almost every belief system that matters.
So, what should I or they do ? Tolerate me, they could try, but shouldnt I ... fit in more ? Learn more seriously the language, dress more like them, marry local, put my kids amongst them, or even leave and live amongst my peers ?
I think it s impossible to ask a majority to tolerate me beyond very basic human politeness. My religion, my culture, my beliefs are so foreign for the majority, 1.4bn people, that the most efficient way for us to live together is for me to change and adapt a lot more than for them to do so.
> Conformance is an advantage, a way to progress and get what you need or want.
How much should we expect people to conform? How much effort should we expect a nonconforming person to make, and what kind of social pressure should we apply to those people?
I am generally more in favor of letting people be themselves to the extent that they are happy with it (absent social pressure) and that it does not harm anyone. That means a social standard of accepting non-conformity, rather than expecting it or as is often the case coercing it.
I was born and raised in France. At 26, I emigrated to China, been 9 years.
How much do you think I have to conform vs being myself ? It s not that they re mean in refusing to accept my Frenchness, it's that they cant even care, and if I want anything done, I need to meet them halfway: learn how conventions work in China to not brush them off, how to speak their language, how to dress and behave in a way they can recognize, so many little details that transform me from an alien ghost-faced weirdo to a surprisingly enjoyable human to hang around with.
I wonder if it wouldnt be the same for other groups: maybe minorities in general would enjoy life more if they were given more chance to conform, rather than given more space not to change ? Im not even trying myself, Ill eat my croissant in secret if I want, but for most people, I m a rice noodle eater like every "normal" person here. I hate it, I still do it: I conform, and life goes on.
What are you talking about? Gay people want to and indeed do: marry all the time. It's the government that oftentimes makes such an act illegal and fails to gives the privileges of a lawful union that straight people are given without any issue. Gay people also want to raise children - to put plainly: they just want to pursue a happy life like anyone else.
Marrying is a government assurance that your assets will be distributed to the person you signed the marriage contract with upon your death, nothing much more.
The government MUST accept it, it s the ONLY value of marriage: it is not an "act", it s a legal contract.
Ofc it s stupid not to make it happen, and it has been a long combat. Most of humanity doesnt allow it yet, and maybe from the comfort of where you type from, it's done and away, but here in China, it an exhausting fight.
What were you finding so strange in saying it was a long combat ? I see 100 years at least before it happens here.
Perhaps it's a misunderstanding of your statement? From my perspective, what I understand from what you're saying is that gay people have long fought against the idea of marriage, which I have not seen as being true.
If you're saying it's government and culture (and many religions) that are against gay people marrying, I agree with that.
I grew up with the society value of live and let live (if ye do no harm, do what ye will). Not that it applies to everything (it is relative not absolute) but as a rule of thumb.
Yet there are societies where my wife would have to conform in the sense of having to hide her facial hair due to dominant religion even though she herself is an atheist. If we were to go to such society, we'd have to conform.
Conforming is sometimes necessary, but a trait of assimilation. It isn't as black or white as it is though. There are parts in USA where you cannot be openly gay, and there are parts where you can.
There are also two sexual preferences which have to conform in the West as they're not accepted by society: children and animals as sexual preference. I agree with not accepting these since they're predatory instead of equal terms. However it is relevant to mention as people with these preferences (as well as psychopathy) have to mask it.
Meanwhile, homosexuality is a spectrum as well. There are shades of gray (nuances) between gay and straight, bisexuality being one of them. To put it differently: one does not have to be either. In an ideal world, I'd have grown up openly bisexuality or at least bicurious.
My problem with transgender is very specific: fertile women are attractive to males because of their fertility which is deeply related to their behavior (look, smell, act, etc). This is something transgender females cannot (yet) offer and it firmly puts them outside the definition of being female _for_me_. However, it is irrelevant to me nowadays as I am (the cliché) married with children. I believe it is the root underlying issue related to acceptance though, akin to con-artism. For me it is. But that is my problem, not theirs.
A lot of undiagnosed women with autism conform/assimilate by masking. It is considered harmful on the longer term (as you put: the short term might be beneficial). You get people who are acting as if they're something they're not. And they will fail their act. Then you get a situation like Girl, Interrupted. A temper tantrum, diagnosis borderline (what I believe to be often a undiagnosed autism among females).
The M.O. should be you are yourself at the very least at home. And that requires acceptance and embracing of how you are as a starting point. Masking is going to be required more tgan enough, it shouldn't be the target goal.
I'd like to end my post with an open question: Do you believe we as Western society benefit from people with a sexual preference for children, animals, and psychopaths in general masking themselves?
That’s too funny. I should have known better! I didn’t mean it literally as a personal attack. This comment describes how I meant it: https://news.ycombinator.com/item?id=39050062.
I definitely appreciate that it was taken literally. I often do that unless I’ve already encountered the phrase.
Doesn't feel like an insult at all to me. But then again I've long ago accepted the way I am (society does not).
The way I feel is constantly between bored and overloaded. Simple tasks can overload, yet complex matter or social settings (birthdays, dinner, chrores, etc) can bore me.
I have this with programming but also putting the dishes in the dishwasher but also in gaming. There are too many possibilities. Yet I really dig the freedom to explore the puzzles. Because if the sandbox is too strict, I feel trapped. Which is why vi is a great editor but also one I will never fully master. And that's OK; c'est la vi.