I'm one who has identified much with descriptions of Autism but never been diagnosed. In particular, the descriptions of monotropism[0] feel like a personal attack. :) The article doesn't seem to mention it but it's common to see similar commentary from diagnosed autistic people who have been introduced to the idea.
Now just to find a competent neurologist who's willing to run a brain scan.
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.
> Now just to find a competent neurologist who's willing to run a brain scan.
FYI: Autism isn’t diagnosed by brain imaging. It’s an area of active research and there have been a few small studies from researchers claiming progress with fMRI techniques, but there is no current imaging test a doctor can order to check you for autism.
So if you do find a neurologist who claims to be able to diagnose you by brain scan, you should actually leave that doctor and find a better one.
That was a bit tongue-in-cheek; mostly I don’t expect current diagnostic tests to be effective, especially considering how often people will suggest to get many opinions.
I have heard that certain patterns can be seen in the brain activity of autistic people as early as the age of 2. The progress which has been claimed by researchers, I presume. I do expect that to be a more consistent diagnosis option in the future but, to your point, that may just be wishful thinking.
> mostly I don’t expect current diagnostic tests to be effective,
Autism isn’t diagnosed by blood tests or imagining like you might expect from simpler disorders.
> I have heard that certain patterns can be seen in the brain activity of autistic people as early as the age of 2. The progress which has been claimed by researchers, I presume.
These studies start with doctor diagnosed cases of autism and look for patterns that might separate them from controls. Latest research claims to have around an 80% match rate in a decent sized sample but these tests aren’t coming to your local doctor any time soon.
> Autism isn’t diagnosed by blood tests or imagining like you might expect from simpler disorders.
I, perhaps incorrectly, understand a diagnostic test for ASD to be something involving a lot of interaction between the patient and the professionals analyzing the patient’s behavior and described thought processes. That process isn’t perfect but it can work.
The brain imaging method seems more robust in theory. As you point out (thanks for the details!), it’s not particularly advanced and may not be effective in the long run but my hopes are still high for it. It may be a long way off but a future generation might have access to a less costly and more accurate test. I guess calling the current process a “test” seems off?
We both have autism diagnosis and there are so many traits we recognize in our children (5 y.o. female, 3 y.o. male) that in a few years during a heteroanamnesis they also will surely ding ding the boxes. From stimmung to all kind of other behavior we also expressed in our youth. But we remained undiagnosed until well into adulthood and we want our children to land more softly than that.
Yeah my first psychiatrist (who prescribed me citalopram vs depression/anxiety and methylphenidate vs symptoms of AD(H)D but only gave me GAD diagnosis) must've thought along that line. Cause he told me [paraphrasing] he could give me a lot more diagnoses which wouldn't help me. Well, I'd love to have known earlier in my life. Because all my pros and cons, my personality can be deducted to the root being ASD. Meanwhile, my cousin had asperger diagnosis and my mother told me that describes me as well. ASD runs in my family, in both sides.
Anyway, I firmly disagree. Self acceptance knowing you are wired differently and understanding aspects like Theory of Mind are a great opportunity to better function. The earlier the person learns to deal with these fundamentals (with which they likely WILL face issues with including in early childhood), the better.
Case in point: my 5 y.o. daughter just does not read her little brother's social cues. She cannot fathom he does not want X or Y.
I explain her needs and desires do not necessarily align with his and that she must try to notice his (I describe them like do you hear he is yelling because of XYZ). This is largely futile. Because she notices he yells but doesn't understand why. He's only 3, so he mostly plays parallel (normal for his age).
I also describe the circumstances of the situation. Usually it is before dinnertime. So I explain right before dinner isn't a good time to play together. Because they trigger each other. So it is a good time to play solo and respect each other's boundaries. At that time they're hangry and difficult, so often some drama isn't avoidable.
Unfortunately some triggers cannot be avoided. They have to go bath sometimes, and we settled for once a week. He hates to wash his hair. Our daughter had same, as did I.
shes five. i doubt most five year olds really understand social queues. your adult understanding is distilled in cultural expectation, and years of behavioural correction.
That she is not an expert socializer at five years old does not indicate shes autistic. There are tens of thousands of confounding variables.
It is one of the many flags/signs/signals/factors (whatever you want to call it) which we are familiar with. There are many more. Yes, some of her peers also have a couple of these, but I haven't met a peer yet (primary peers being elementary school and mom's friends) who has all these as clear as she does. Though I'd say I leave it up these parents (if (eventually) required).
Until I knew I had a brain injury, I could not figure out how to work around my issues. Everything I tried was a dead end. It was unrelenting failure and judgement.
Knowing what a problem is gives you the ability to solve it. Not everyone will use that knowledge to their benefit, but withholding the knowledge from someone is abusive.
im with you but many people really would choose the blue pill. They just dont want to know.
I was surprised by this when in my high school class the teacher (a doctor) asked the students if they would like to be accutely aware of an unfixable chronic brain impairment (if i recall it was memory impairment in this case). To my horror almost everyone said no.
Actually being trapped in a non-functioning mind or body without knowing the problem would change many minds. Don't read too much into an offhand high school thought experiment.
If anything, as I have interacted with more and more neurotypical people as I have aged, I believe this thought experiment is more representative of the average population than I used to, and more informative.
It's still a thought experiment. People in general lack imagination outside of the range of their experience. Imagination is a skill that has to be practiced or lost.
“Many opinions” meaning to include many medical professionals in the process. “Many” being “more than one” because I’m a sort-of DBA professionally.
I just mean that I commonly hear the advice to get a second or third opinion, or otherwise to involve a team of professionals, were one to seek a diagnosis.
My wife's second opinion meant she got her autism diagnosis because she previously got a different diagnosis. Meanwhile her sister got ADHD diagnosis but second opinion also autism diagnosis. Their brother is as obvious on the spectrum, having the more obvious classical traits (by the T).
Our diagnosis involved heteroanamnesis, and many, many questionnaires and interviews. By a team with each being a specialist in the field on a different facet.
I cannot recommend getting tested enough. Because those who suspect likely researched into it, and are being told traits get recognized or they're facing challenges in their life. But I live in a country with a sort of working social system which (although weakened) so mandatory insurance worked. If you do not have access to that I'd sing a different tune... and in such a society it is very likely a lot of undiagnosed and stuck people are runnin' around.
I'm sure things like these are quite common in normal humans. I have a bunch of odd behavioural characteristics too that overlap with mental conditions: clanging, rocking and stimming, and until my mid-20s if I 'touched' something (including stepping on a tile-edge or crack at an angle) on my one side I had to symmetrify with the other side. But my life was fine. I was and am a successful adult with a job and life. Many of these things are probably just the normal variation of the species. I only found out these are named behaviours within the last year. Till then, it was just things I did sometimes or at some time in the past.
I imagine many others are also like this and have single or few such things. It progresses to being a disorder when people can't function, but when they can, it's probably just a trait.
Yes, it's odd: I had several debilitating behaviors and symptoms for decades, and nobody had ever identified them with me, so I hadn't discussed them or tried to ameliorate them.
For example: anxiety. I've always suffered from quite debilitating anxiety, which has verged into hypertension, panic attacks, and assorted complications by now. But 30 years ago, nobody was discussing this basic trouble with me, and so I had no tools for even recognizing it, much less reducing its impact on my life.
I was homeless/poor/unemployed for a long, long time, and intellectually I had no satisfying explanation of how I got into those situations. Once I was able to deeply reflect on myself and identify some root causes, and then gain tools to work on those debilitating symptoms, I was much better equipped to fashion a better life, some realistic goals, and a future for myself.
A strange thing about that wikipedia page is, the theory was posited as central to autism, but there is no research cited from after 2010. If it is so central to the autism spectrum, howcome this article is just a bit more than a stub.
User-contributed documentation on the internet related to autism is slanted in a way you wouldn't necessarily expect; many people with autism consider the condition an 'identity' rather than a 'diagnosis' and they also tend to be what's colloquially known as 'terminally online.'
That results in a rather hostile environment for those who wish to label, discuss, contribute etc to the documentation of the subject.
In a similar way the frequently-online Deaf community is remarkably hostile to the idea of cochlear implants in a way that you just don't see among the less-online deaf community.
It’s really not. And a rather ironic choice of words given that mild autism can sometimes make one emphatically logical and “ordered” in how they think. This makes it harder to grasp weird, squishy concepts like language and emotion. So it’s common for autistic children to have language delay and difficulty picking up on social cues.
The more random, disorderly brain of the “typical” person is simply more predisposed to navigating the society made for “typical” persons.
It absolutely is. They are a deviation from the norm in a way that more often than not has negative consequences, in addition to any benefits that may or may not exist.
There are plenty of non-autistic people who are perfectly logical, so that point doesn't matter.
Autistic people thinking NT people need to be more like them is a result of their thinking being out of whack. Things like tolerance in society are irrelevant to that point.
The negative consequences almost exclusively stem from autistics interacting with neurotypical. In this case it’s more akin to a language barrier than a “deviation”. It’s only “out of whack” because you’re on one side of that divide and want to otherize people who are different to you.
And for the record, you can count me among the people who think that the average person could stand being about 20% more autistic. There’s nothing noble or special about being leashed to emotions and arbitrary social cues.
> The negative consequences almost exclusively stem from autistics interacting with neurotypical
When it's not something to do with sensory overload or having trouble navigating something in the world even without any interaction, sure, almost all that is left is problems with interaction.
And even then when the problems are due to interaction, it's not always due to a lack of tolerance or something, it's often due to the autistic person being unable to read social cues and similar, and so that's a negative consequence, not just a neutral difference.
> And for the record, you can count me among the people who think that the average person could stand being about 20% more autistic.
Yeah that's ridiculous. It's like deaf people wanting people that can hear to be deaf.
> There’s nothing noble or special about being leashed to emotions and arbitrary social cues.
NT's are not leashed just because some people are, anymore than all NDs need to rock back and forth or something to deal with sensory overload.
I could easily trigger sensory overload in the vast majority of people. Our society doesn't tend to trigger sensory overload because it's tuned to provide a level of sensory stimulus within a certain arbitrary range which is acceptable to the majority of people. Similarly, most of our built environment is tuned to suit people between 4 and 8 feet tall. Ultimately it's all relative.
Social cues are an arbitrary language, and you can find a very wide degree of competence among the NT, let alone ND. Meanwhile some people suck at hand-eye coordination, some people suck at maths, some people suck at social cues, and some people suck at logical deduction. Negative consequences can stem from any of these deficiencies. If you want to single out one of those and call it a disability, my response is whoop-de-doo.
Analogising autism with deafness tells me that you've never interacted with an autistic person in anything other than a shallow way, or in a cruel ABA-style setting, rendering this conversation pointless. I can only hope you're speaking from actual ignorance and have no influence over the support given to anyone with medium to severe ASD.
This whole comment and line of arguing seems like you're going out of your way to downplay the negative effects of autism while advocating for supposed benefits, and frankly the whole thing reads like you are in denial.
> I could easily trigger sensory overload in the vast majority of people.v
No, you couldn't. Not easily. It can certainly be easily triggered in the vast majority of autistic people though.
> Our society doesn't tend to trigger sensory overload because it's tuned to provide a level of sensory stimulus within a certain arbitrary range which is acceptable to the majority of people
It's not arbitrary, it's the result of human evolution. That's like calling the colors range we can see arbitrary. That autistic people can and often are more sensitive is part of the disorder.
> Social cues are an arbitrary language, and you can find a very wide degree of competence among the NT, let alone ND.
Again, not arbitrary. And yes many NT are competent, many more are not.
> Negative consequences can stem from any of these deficiencies. If you want to single out one of those and call it a disability, my response is whoop-de-doo.
I didn't say disability, I said disorder, but if you have trouble with the most basic human things, which math and logical deduction are not, then yes, you have a disorder, just like if you have very bad coordination to the point you can't catch, throw or maybe even jump or run well.
> Analogising autism with deafness tells me that you've never interacted with an autistic person in anything other than a shallow way
It was to make a point in a specific context, and that point is valid. Maybe don't make more of it than it is.
> I can only hope you're speaking from actual ignorance and have no influence over the support given to anyone with medium to severe ASD.
You say this simply because I think it's ridiculous that you think most people should be more autistic. Which again, is a ridiculous argument and stance, and you should be ashamed for having it and maybe do a whole lot of self-reflection and maybe be honest with yourself about why you think that.
This speaks to a lack of imagination on your part. Absolutely I could. Easily. Of course it would involve something outside of social norms, but that's the whole point. Go on, try to be imaginative.
> It's not arbitrary, it's the result of human evolution.
"It's not your kind of arbitrary, it's this other kind of arbitrary." Autism is a facet of human evolution too, by the way. In a sense, societal norms are nothing more than a tyranny of the majority.
> if you have trouble with the most basic human things
The most basic according to you. Somewhat ironically, society is already doing an excellent job of making some of these "basic human things" less relevant. Face-to-face interaction is less frequent. The "me too" movement is shifting the pendulum away from subtle social cues and towards arbitrary social rules. And the job market has never been better for people with the sort of hyper-rational mindset often correlated with ASD (if they can get past the job interview, which is increasingly automated too).
> It was to make a point in a specific context, and that point is valid.
It really isn't valid. Most mild to moderate autistic people have natural deficits which can be mitigated with targeted education. Some "normal" people have similar natural deficits with respect to sport, which can be mitigated with targeted education.
> Which again, is a ridiculous argument and stance
Which again, is an understandable reaction if you only had a superficial understanding of autism's extreme outlier cases. Here's an interesting little tidbit for you: there is a school in my city which has an enrolment exclusively comprised of ASD students. If nobody had told you this, you probably couldn't have guessed. The vast, vast majority of autistic people are really no different to the general population except for needing a bit of extra help in a few areas, but — much like the "normal" kind of social awkwardness or deficiency in physical coordination — can be overcome with empathy and education.
I'm going to bow out of the conversation at this point. At this point I'm arguing against feelings not facts, and I suspect you're being quite a bit contrarian also. So much of what you say is flat out wrong, and I don't have the energy for an extended is-too/is-not.
I also suspect you're one of those "needs to have the last word types", which is also common in autistic people (despite supposedly being less emotional according to you), and, well, that's not going to be a productive discussion if that's your motivation or even part of it.
> I'm going to bow out of the conversation at this point.
Except you didn’t. You kept going.
> I also suspect you're one of those "needs to have the last word types"
I physically laughed at that. Framing your opponent in an ongoing discussion as “having the last word” is just a low effort way of deflecting away from substantive conversion, and suggests a lack of seriousness in your prior discourse.
If you have anything useful to add, I’m happy to continue the discussion.
My way of thinking tends to be monotropic (?), so much so that I can't quite conceptualize what it's like to not think in this way – can others just subtly keep way more items in their working memory at once? If so, how can they maintain any significant level of focus without "tightening" their field of view to exclude certain things?
From my perspective, monotropism is almost to be expected as normal in 90%+ of people. Then again, I may just be extrapolating from my own experience, but if I'm really wrong and only a small % of the populace employs this thinking strategy, I'd be truly dumbfounded.
> can others just subtly keep way more items in their working memory at once? If so, how can they maintain any significant level of focus without "tightening" their field of view to exclude certain things?
Anecdotally, I work in layers. If a layer gets too complicated, then a new layer is formed -- breaking apart the current layer, maybe keeping some of the parts and then other parts are only cherry picked into an abstraction and the details shoved into a deeper layer.
Much like I do for software.
Most of the time it works "fine". Sometimes I get so busy building layers that I end up two weeks later and have way too many layers and none of them are clearly identifiable. Ooof. Time for cleanup, another two weeks at least.
My boss calls it "rabbit holes" -- taking things apart, figuring out how they work, picking out what's relevant or useful to me, putting things together simplified...
Moving up layers works in software because the lower layers work automatically. But when using my brain, my subconscious can only do very simple things for me and it's very difficult to teach it anything new. So I can move up a layer when planning, but when I'm in the middle of executing a task the only thing that can possibly be on my mind is that task.
> when using my brain, my subconscious can only do very simple things for me and it's very difficult to teach it anything new.
That's fair. I'll often forget the details or maybe the abstraction isn't good enough, or abstracts the wrong thing. I often have to switch layers, pick up some critical info, and keep that in context when working above. Sometimes it happens often -- forgetting piece A to work on piece B, then forgetting piece B to remember piece A, then having to remember all the intricacies.
I stopped trying. I just write unit tests for the layers and details. It also helps me to keep things simple -- if the unit test is too complicated at a lower layer, then the upper layers are going to be even more complicated. So simplifying that layer is certainly necessary.
I resonate a lot with that, and since llms and adhd meds I have become even more capable of building layers and retightening them and making them all work together.
It feels like a constant rabbit hole because once the layers are there, the features themselves can get built in a blink of an eye, so that the balance goes even further towards layer building.
Because of increased feature velocity so does increased feature “ambition”, so in a way the balance just remains the same…
When you're doing something simple like washing the dishes or similar, does it irritate you when someone interrupts you with a reasonable request, like just to ask what you want for dinner? (This has a more specific definition but many think it stems from monotropism: https://en.wikipedia.org/wiki/Pathological_demand_avoidance. It's also a common trait to see in autistic people (who commonly take issue with the name).)
Does washing the dishes not sound simple and instead sound like something which would take a fair amount of focus to make sure you're doing it right? It does for me, at any rate.
I feel like I'm sort of like this but it's because I'm ADHD and if I happen to be doing the laundry it's probably because I walked by it for the last week, finally noticed it's inattention and wanted to do it RIGHT NOW before I forget about it for another week or until I need clothes.
I'm reading this article you posted because I wasn't sure of any of this terminology and I never have panic attacks or anything like that, though. I more or less just get startled and want a quick back and forth so I can get right back to it. Definitely could occasionally from off as snappy.
Dishes I also forget about unless I do them immediately. So same thing, when I finally walk by the sink and notice them I hyper focus and knock them out super quick like I'm in the zone.
This paragraph is confusing me, first PDA is totally bad at all of the bullet points but if PDA is not diagnosed with classic autism spectrum it's actually all positive social stuff? Sounds strange.
> Although PDA has its own traits that are separate from autism, people with PDA generally meet the diagnostic criteria by having significant difficulties in social interaction and communication.[1] Alternatively, they may instead be diagnosed with ODD.[1] Those who propose that PDA should be a separate diagnosis from classic autism spectrum disorders, observed that, compared to children with classic autism, those with PDA:
* are more sociable
* have better social skills and social understanding
* use apparently socially manipulative and shocking behaviour[3][4]
* are more interested in people than objects
* are more comfortable with pretend play, and
* are more imaginative
A lot of women with autism mask it and perform the examples you mentioned in your last paragraph.
It could also very well describe actors like Henry Cavill.
Also, in DSM-V there is only autism spectrum disorder. And people with ASD can be very imaginative, plus traits can be masked. And trained.
My wife did a social study. Because it fascinated her. Yet she masked a lot in her life. Both our parents (mothers) still refuse to accept themselves as such. And yet we sometimes put their nose in the pie.
I definitely feel an emotional response when I am interrupted from my line of thinking. Whether it's doing a task or thinking through a problem, any sort of request that I need to handle which isn't related to the task can be difficult to switch gears to. Fwiw, I was diagnosed autistic and OCD back in the middle of the pandemic because I loved lock down and didn't want things to go back to the way they were. I had so much uninterrupted time where I could think or solve problems. However I didn't realize that loving lockdown was not a normal thing; someone suggested I talk to a psychologist which is what lead to my diagnosis. Hope you can find some answers for you.
I also loved the lockdowns. I used to joke with everybody that I'd been preparing for it since a teenager, and that all of my favourite activities were solo activities anyway. Finally I didn't have to pretend, I could just be at home and happy for X days, and nobody was judging me for it.
It would have been amazing if it wasn't for that whole pandemic situation.
Lockdown was heaven on earth. Suddenly normal to have only comms via internet, or play games or watch movies. No social BS like birthdays or drinking coffee with friends (they have coffee at home, too). Groceries delivered to the doorstep. Work from home (OK, sucks with kids being noisy), ample amounts of space in train, theatre. Bring own food to theatre. God I loved going to the theatre/movie so much with my oldest kid. Shittiest was the video calls. I hate those, just text or maybe audio is fine (TTS/STT too) can't read the body language anyway. Even had a neat job during lockdown, obviously got laid off recently..
> can others just subtly keep way more items in their working memory at once?
This is how my mind works, but I've actually found it to be extremely unusual, and I would say your estimate of 90% of people's not thinking like me is, if anything, low.
I normally have anywhere from 4-7 things going on in my mind at once. This is comfortable for me. It takes concerted effort to keep things from popping into the 4th slot if it ever empties out.
I start to notice overwhelm at 10, and become incapacitated at 12. Whenever I reach the point of needing to brain dump and write things down because I'm getting overwhelmed, there end up being 10 things on the list. At 12, I short circuit.
But I'm ruminating on 4-7 things at any given time. My dreams are mostly lucid, and this happens in them too.
I don't know how to answer the "how" question, because as far as I can tell, I've been this way since very early childhood. I remember being 3 or 4 years old and having an adult tell me it's not possible to talk about one thing when you're thinking about something else, and laughing openly because I thought they were kidding. Of course it's possible. What other way is there?
But as you noted, I've found my experience to be extremely uncommon. I think most people can handle two or three things if they have to, but that's all. I can no more understand what it's like to be able to do that without being understimulated than I imagine they can understand what it would be like to experience my brain without being overwhelmed.
The linked wiki page on monotropism states "some students have trouble taking notes in class while listening to a teacher"
So, pretty much in every class I have ever taken the teacher starts out by saying that we don't need to take notes because their lecture materials will be posted online. Why do they say this? Because almost everyone can't take notes and also hear everything the teacher says. The only exception is probably court stenographers.
It feels like professional educators spend a lot of time coming up with ways to categorize people as a bad fit for the classroom rather than evaluating their own teaching methods.
Additionally a significant, perhgaps required, part of the diagnosis would be a history that shows differentiating childhood patterns (symptomology, academic trajectory, social experience, etc). All aligning into a cohesive picture.
>can others just subtly keep way more items in their working memory at once?
I think on the contrary. As I imagine it, you focus on one item, keep it in your working memory, then refocus on the other item, so that you can put both together. For me, both items are just there, and no special effort is needed to handle them.
I don't think that the concept of working memory even applies to those who are not "monotropic".
Neurotypical people are overwhelmingly monotropic. Humans will often focus largely on the social aspect of the conversation at the cost of reason. Walk for an hour and not notice 99% of the information around them. Internal systems that select points of interest in the data coming in aim monotropism. It is an intended feature not a bug.
Is there an opposite to monoropism? To use your "take a walk" example, when I take a walk I end up mentally and emotionally exhausted, having been hyperaware of too much data during my walk. Examples would be the sounds of traffic, snippets of conversation, the color of bricks of buildings, bird nest locations, the unnatural mix of smells. My walks happen in an urban environment, obviously, but you get the idea. I feel flooded.
There is also something specific happening with the way my brain processes sound. When I go to dinner with my wife, for example, I can hear and can't help but focus on every conversation happening in the room, making it difficult to stay focused on my wife (she is blessedly understanding about this because she can see that I am in slight distress if I am not wearing my attenuating earplugs). I describe it to people as being akin to all sound in a given space "coming in at the same volume" which is not what is actually happening, but gets the idea across. This happens while still taking in too much visual info too, but sound definitely dominates me.
I've approached two doctors about this, but they seem quite clueless. I was diagnosed with GAD about 14 years ago, and the last doc chalked it up to that and sent me to a psych who wanted me on an SSRI after only 20 minutes of speaking to me, a drug that has done very little to improve this condition in the past.
I work in a field that requires earplugs (or good earbuds) basically all the time, so thankfully those help me cope. It's not debilitating, I can still function out in public in a limited-engagement capacity, but I have a plan ahead for hours, sometimes days of decompression because of this sensory overload.
That is interesting and sounds plausable. I actually experienced what you described on a few occasions in my life, and it kept progressing until the center part of my vision doesnt work and I couldnt read. It only happened to me two or three times.
I also experienced a milder form of what you describe when I stopped taking benzos, but that sideffect went away.
But generally I find walks in the park nice for the opposite of what you describe. Nature sounds do not stimulate or annoy me in the way background human noise does.
I struggle to disagree, actually. It makes me wonder if the observations which we refer to as autism are really just observations of the differences people have with where they choose to focus their attention. That doesn’t explain the particularly debilitating experiences that some suffer but it may explain how others can relate so strongly but still hold down a job.
Anyway, I haven’t really heard of “polytropism”. Maybe nobody thinks that way. I don’t know how much that topic has been explored.
We likely wont have a strong theory of how brain architecture results in unique emergent temperments and subjective experiences until weve got data collected from millions of people with chips in their head, and a large database to work with.
Until then, I will remain agnostic on any theory unless it is very obviously causal.
This is an interesting take that I hadn't considered the reality of, before. We rely a lot on self-reporting but only for lack of a better option that doesn't violate ethical conventions. Self-reporting is subjective, making the data shakey at best, but even an objective observer can misinterpret what is being observed. I'm mot much of a scientist or philosopher, but that seems like a remarkably large problem when it comes to truly understanding the human brain.
How does neuroscience get around this problem, and how close are we to actual "brain chips" that could provide viable diagnostic data?
Differential diagnosis for adult type 1 autism is really tricky. Due to the fact that so many symptoms are shared with other diagnoses. In addition to monotropism, you'd want to find at least one or two other differentiating traits that are not commonly shared with other diagnoses.
You can probably do much of that research and introspection on your own. At least to the point of getting more of a head start. The clinical option is a team diagnosis, which will be expensive. You'd want to weigh what the benefits vs risks (cost, medical records, etc) are for formal diagnosis vs informal (yourself as diagnostician). Especially considering lack of direct treatments.
A rightly sensitive and complex subject all round, for some reasons I have acquaintances seek my counsel on this subject and in the absence of a diagnosis, which can be hard to get, I suggest applying any of the no harm mitigating strategies often suggested where possible, if it works, you'll probably recognise that, then you can make adaptations with your control at least, a formal diagnosis might not make as much difference as one might feel it should.
There are a lot of therapies that can be helpful for people on the autism spectrum and aren’t harmful. One example might be helping people learn how to get out of “Defense Mode”, as advocated by https://www.aspergerexperts.com (there’s a bit of a sales vibe here since they are a business, but the general perspective has proven very helpful to me as a parent of someone on the spectrum).
It’s true that these same therapies might generally be helpful for all people, but that’s why it’s a spectrum.
I had a team diagnosis. Cost depends on where you live. Here in NL there's a waiting list (adult nearly a year pre-corona, since corona kids even longer) and you'll burn through your medical "own risk" (currently IIRC 485 EUR a year) but you might already burn through that and they tried to fit in as much as possible in a year (besides the diagnosis also counseling). We both had a different diagnosis before our current. The thing is: diagnoses can co-exist but the other ones stem from autism. Autism is the root of the problem (or the roit of being if ya wanna word with cup half full).
Ever since we got our diagnoses our life has been in full motion once again. Though we also became parents right after (twice) and that alone is a rollercoaster.
I don't know if this will be helpful to you specifically, or maybe just someone else who reads these comments, but I also thought for years that I was autistic, without having been formally diagnosed. Even my mother thought so when I explained it to her.
Difficulty reading social cues, sensory overwhelm, robotic affect and processing--all totally normal for me.
In my case, I later discovered that early childhood trauma's symptoms can often mimic autism, especially if the perpetrator is the type of gaslighter who denies that they meant what every nonverbal cue suggested they meant.
Even the sensory overwhelm can happen because of trauma, because if you were not safe when your neural pathways were forming, you may have learned to pay keener attention to your environment looking for threats, at the same time that your parasympathetic nervous system never developed the normal ability to down-regulate your stress responses because the threat was never really over.
There's every chance you specifically are an autistic adult who's never been diagnosed, or who just has autism-like traits. I just want to bring it up for anyone for whom it might be helpful.
I'm also not diagnosed but I certainly have some traits. Especially Asperger traits. I'm not sure if I have it either. I've asked some professionals and they all tended towards no, though most were a long time ago. Personally I think yes. Someone else said it could be ADHD which I also have some overlap with but also not a strong match.
But I'm not going out of my way to label it. I'm clearly not neurotypical but whatever label I put on it doesn't really change that. Learning to live with it does make it a lot more bearable though.
I had suspected something like that in myself. I have no trouble reading social cues but am often overly sensitive to them and overreact or freeze up and avoid talking to people or showing emotion out of anxiety, which in some ways is just as bad as being unable to read cues.
In my case I think its due to issues with my father who was not abusive but angry and unpredictable, and unable to empathise with or mirror anyone else’s emotional state. This lead to a lot of trust issues with people that probably comes across as autism but is more anxiety and social awkwardness.
I can relate to this as well. Father figure with narcissistic traits. Everything had to be done his ways and other opinions were never respected. No empathy at all.
As a result I think I formed some kind of protection shell. Outwards I appeared indifferent, apathic or stoic while the kernel was very sensitive. In my teens I suspected psychopathic tendencies because of this shell. At other times Aspergers but it didn't fully match.
Nowadays I guess I have developed some kind of schizoid personality.
Internal Family Systems therapy has helped me understand and work through this a lot.
I have a very robotic "manager" part that spent a lot of time running things for me. It takes input from the nearest authority figure and precisely meets expectations, but doesn't feel, doesn't internalize, doesn't connect.
It was protecting a lot of confused, vulnerable little parts that had been kind of pushed out of conscious awareness when I was young, because it sounds like we had similar fathers.
I heard this great line that really helped crystalize part of it for me too:
When children are dealing with unstable parents, they don't doubt the parent. They doubt themselves. They don't stop loving the parent. They stop loving themselves.
It's a process I'm still working through every day, but at least it finally feels like I'm moving forward, not backward or spinning my wheels in place.
In my case, it turned out not to be, as working through the trauma eliminated the symptoms that had previously been interpreted as caused by autism, but it's certainly possible to be both autistic and a trauma survivor.
First time in the wild I've seen someone else reference monotropism- I also feel like it describes me to a t. Thanks for sharing your experience here. Hope you're getting along ok :)
Yeah, I encountered it once in comments here, and then a bit more recently as I was doing research. It’s interesting that it’s not more widely discussed but I suspect it’s just because it’s not well-studied.
> Hope you're getting along ok :)
Thanks! It certainly helps to have a clearer idea of the differences (or potential differences as I try to remind myself) in how I think compared to how others think. I’m glad you feel confidence in the idea as well! I’ve seen it elsewhere but it’s always nice to have this independently “agreed upon” (since I don’t quite want to call it “confirmed”).
Depends: I m probably the opposite of someone with autism: I love chatting with strangers, I can dance with girls in clubs until 8am on a whim at the despair of my gf, I m very chatty in general and overshare. I suffer strongly when I see others suffer so I probably have working mirror neurons (empathy). I seek social connections and moved to Hong Kong to be surrounded by dense population rather than feel so lonely in Paris. This immigration adventure was the highlight of my life and I enjoyed tremendously the danger, the unknown, the overloading of things to do and learn.
Yet, I feel connected to monotropism in some way: I can only get interested almost obsessively in one thing at a time and completely forget and disregard anything and anyone else. It s very annoying for people around me and many find me autistic somehow, geeky at best.
All Im saying is, either it s really what a "spectrum" is or it s just a sort of common human traits. Us programmers had to be a bit obsessed with computers to dedicate most of our waking time to it, and everyone here is probably sharing this trait, none of us being really autists and may sound disrespectful or misguided calling ourselves so ?
> I suffer strongly when I see others suffer (empathy)
It might be worth looking more into this. I’d describe myself similarly and I’ve heard it described similarly:
> Many autistic individuals report feelings of excessive empathy, yet their experience is not reflected by most of the current literature, typically suggesting that autism is characterized by intact emotional and reduced cognitive empathy.
The rest is very interesting! It might be a bit “exposing”, if you’ll pardon the pun, but there are many “masking” behaviors an autistic person might learn.
It’s also not unheard of for autistic people to live healthy social lives and even engage socially to varying degrees. I wouldn’t discount it even based on the all-night clubbing given what I’ve read but that’s definitely getting way more into my personal opinion and factually exceptional territory for those who’ve been formally diagnosed.
(Not trying to lead you too strongly. Just offering information in case you haven’t encountered it. You know how you think better than anyone else!)
The point about “spectrum” or “regular” is interesting too. I think that’s kinda why I find this monotropism vs. “polytropism?” idea so fascinating. I want to hear about the other thing more, at this point -- assuming it exists. It feels like a good topic to explore more.
Edit: Just caught this too:
> I m very chatty in general and overshare
This can also describe an autistic person’s social behavior. Generally, I’ve read it manifests as talking a bit too much about a topic they’re interested in, possibly even irritating others with their focus on it. (A lot of “me irl” stuff in this personally.) I’ll even go out on a limb and guess you’ve been accused multiple times of “dominating a conversation”. Correct me if I’m wrong! Anyway, it just makes me wonder more about the real differences in how people think. Why does that sort of disagreement even happen?
Not a clinician or anything, but I'm autistic and honestly you sound pretty similar to me. In fact I'm writing this from Singapore where I'm surrounded by folks haha. I don't think being autistic is really what it's made out to be frankly, and the description of the condition is generally the outsider's view not the insider's view.
Some autistic folks will avoid sensory stimulation while others seek it out. I'm definitely one of the ones that seeks it out and I'm pretty extroverted. It's a heterogeneous condition, and indeed a spectrum. Who knows for your situation, but you may be autistic.
That being said though, I think the important thing isn't the neurotype but rather that you've found what matters to you and what makes you happy. At the end of the day that's what counts, not the underlying neurology.
Based upon my observations of a family member an ideal description of autism is constant signal overload that results in faulty assumptions, often hasty or convenient to the moment.
The result is decisions that are remarkably short of the careful considerations nominally applied, and taken for granted, by neurotypical people as well as many unfounded fears. My other observation is that this behavior is entirely unrelated to intelligence but it does dictate personality indexes, for example higher neuroticism and lower conscientiousness.
I suspect many people incorrectly assume the monotropism as a factor because of an over simplification in isolation.
This is a straightforward consequence of the bias-variance tradeoff, autistic brains tend to get too much information which is mathematically indistinguishable from noise.
This is why many of the repetitive patterns, social blindness, strong habituation, meltdowns, shutdowns, isolation, etc, work, they are informationally-linked coping mechanisms.
It is weird to me how advanced in some areas we are and how pop sci or culturally narrative driven in others. These are some extraordinarily basic ideas from basic and moderate information theory, there are more but it is difficult for me to summarize well and distinctly.
Everyone go read Shannon, then Varley's info theory for complex system scientists. So many brain (and otherwise) phenomenons make sense and have strong predictive power for the complexity of the model, but that is sort of trivial since the brain does operate with informational dynamics by default.
Fellow autistic person here, and in my mind you've hit the nail on the head.
It's an information game for sure, like trying to drink from a fire hose of information and make sense of it somehow. I guess it's a matter of using Fourier analysis in a way, but that's a hard ask to do on your own thoughts, feelings, and sensations.
I don't think this is the same thing as "noisy brain", but I'm wondering if anyone else has experienced this before since it sounded similar. Sometimes, typically when I'm sick and I'm trying to sleep through the symptoms (e.g. sleep all night and all day), it seems like my brain gets bored or something and suddenly I cannot stop thinking/dreaming about something. That something is different every time it happens, but it's the same thing over and over repeating in my head. Eventually my head starts to hurt and I'm seemingly forced to be awake as it is the only way to stop this.
Not uncommon at all, it sounds like you’re describing the literal “Fever Dream” phenomena, where you have strange and intense dreams and thoughts while asleep and drifting off.
Brilliant! I finally have a term for it. Though, while it does happen more often when I'm sick, it still sometimes happens when I'm not. Maybe I just have a hot-running brain. Anyways, thank you again for an actual term I can search with.
I found that podcasts help a lot with noisy brain at night, particularly long-form multi-episode podcasts that force you to pay attention.
Podcasts flood my brain with non-anxious information and, unlike books, you don't stop "reading" them when you are dozing off and in the early phases of sleep.
That happened to me a lot more as a child but i think still sometimes as an adult. I remember a dream just bouncing a basketball over and over. It's weird.
A lot of the problem of this idea is that there's only a smal set of ASD people who can even engage in this kind of work. It's a big argument in the community about higher functioning austistic people speaking as if they represent all.
Personally, I think we have a lot of foundational research to do since I'm not convinced that what we call autism isn't like 3 or 4 diseases/disorders in a trench coat.
>It's a big argument in the community about higher functioning austistic people speaking as if they represent all.
I've spent much time mulling this point and have concluded I don't give a damn. If people are constantly running into the problem of any specific definition of "Autism" not encompassing the entire population, the problem isn't me, the problem is that the word "Autism" itself is overloaded. I'm not going to spend even 1 second doing anything but trying to destigmatise autism and talk about autistics being strong and capable, I literally don't care if that makes people mad, they can come up with a new word to describe these more impaired autistics if they don't feel I'm representing their interests. I'm not going to sabotage my own interests out of some misguided sense of morality.
We used to distinguish between Aspergers and Autism, people can go back to a system like that if it makes them happy.
What. Most people are high functioning ASD, it's a pareto distribution like almost every neurodivergent condition. Also, a shocking amount of competent researchers are autistic.
As to the cause issue, yes, many potential causes, classification bins are useful when a cause has a shared dynamic since the symptom groups are similar.
Just like 'cancer', they're all different.
I know very few excellent (as in near top of the field) researchers who aren't autistic or ADHD or neurodivergent in some kind of a way, I have no idea where you're getting this idea from. It's one of the few fields that we excel at far and above other people (bias-variance tradeoff, as per an earlier comment of mine).
> What. Most people are high functioning ASD, it's a pareto distribution like almost every neurodivergent condition
You're probably overstating this - only about 20% of (diagnosed) autistic adults have jobs [1, 2], and a huge percentage of those who are, work part-time. Around 30% of autistic people are "minimally verbal" (speak 30 or fewer words) [3], and will need support for life. More than half overall will never live a normal life.
Obv this doesn't count undiaignosed cases, but people with autism who can live an independent life, keep relationships and hold down a job are in the minority, and an awful lot of the discourse around autism just ignores this outright.
Yes, this is one other slice of the pie that gives a more accurate picture of what it is looking at.
The struggles of autism are significant, and while people on the spectrum make excellent researchers/engineers and such, many absolutely struggle in their personal life.
Being rather autistic myself, I understand this struggle very, very well. This is a struggle of many of my autistic friends too, unfortunately, though most have income sources in a non-normal manner that is better suited to their autism.
There is a lot of nuance go this issue for sure, and I appreciate your points here.
Yeah, this is my worry about autism research/diagnosis as well. When/If we lump together what are actually a number of different underlying causes it makes it a lot more challenging to come up with strategies for treatment.
I was hired as a co-researcher by a local autism research team, and the first thing we did was research what autistic adults would like to see researched, ie what problems have we come across that we feel need investigating.
I pretty much have to blast random noise to stop my brain from going weird places when I’m trying to sleep.
Some weird examples:
- Simulated conversations between random people. I might not even be involved
- Wait did I remember to do this? (Usually something related to code)
- Geometric nightmares (it’s hard to describe. I’m awake and conscious but there’s a large expanding object in my head and it makes me want to jump out the window)
Had issues for years until I realized that putting on podcasts in foreign languages or just random assortments of sounds (no patterns or else I’ll think about it) stops it from wandering.
Is this a case of a noisy brain or do I have actual issues?
Wow; this is the first I've seen someone else describe "geometric nightmares". You're spot on in that they're "hard to describe" - they used to happen very frequently when I was younger and could never explain them.
As a child I used to get “trapped” in the corner of the room - I’d be lying in bed and my consciousness would get locked in to the corner where the walls meet the ceiling. Felt like I was pushed hard into the corner
Never heard of anyone else having this until it was mentioned on hacker news a while ago and someone linked to Alice in Wonderland Syndrome which matches my experience perfectly - maybe your geometric nightmares are like this?
Glad I'm not the only one! I also remember this feeling of terror associated with being ground or crushed by the object. I'd wake in a panic but still semi-asleep and unable to shake the feeling of terror, stuck in an waking abstract nightmare and completely inconsolable. I also remember a weird auditory effect during this waking part where it was very quiet but the quiet would seem unbearably loud. Kind of like when you turn up the gain on a stereo and that background hissing noise gets louder and louder.
Please take my offer of compassion. Look up hypnogogia. It can be extreme, but everyone has it to a degree. it's the brain switching gears. It's like swapping out a nintendo cartridge while it's powered on. Try to relax and trust it as a natural phenomenon. Self-help junkies actually use this to make changes :)
i just remembered last weekend, having a hard hungover, i was half-asleep and my brain was just repeating the number "142". Like, on repeat, for god knows how long. felt lowkey creepy, i imagine stuff like that happens regularly i just dont remember it afterwards
I have a feeling this might be the cause of the Ballmer peak. I'm ASD, used to be way worse, grew partially out of it, but when it's bad, the Ballmer peak makes me function like a normal human with the focus of an autist. The rest of the time, it's a normal buzz.
ADHD is often comorbid with ASD and people with ADHD disproportionally use drugs and alcohol to self-medicate. I certainly focus much better on my work after a beer, but not two. Cannabis does it, too, but similar deal of "one, not two," just not as easily quantifiable.
I'm really bad with sound sensitivities, but magnesium helps make them less sharp and painful, great for helping me get to sleep also. It can give me erectile dysfunction though.
Another autistic person put me on to magnesium, their reckoning was that it could be an ion channel issue.
“It’s nice that they use hindpaw stimulation as it adds a translational component” says Anubhuti Goel, assistant professor of psychology at the University of California, Riverside, who was not involved in the study. Past research has often opted for whisker stimulation, which is clearly not relevant to people, she says.
Translational means it can translate more easily to people? I don't really get it tho.
Like the mice in question, humans also have limbs. Unlike the mice in question, we do not have whiskers. So this study shows that the previously observed trend is not whisker-dependent.
Doesn’t strike me as a particularly significant nor interesting point.
I guess it isn't -- if you're knowledgeable in this I suppose -- I just didn't understand it, sorry. Haha! :)
So the translational refers to how the results can translate across species or at least translate from previous studies by showing it's not dependent on whiskers, alright, cool. Thank you! :)
The term translational is frequently used to describe basic research (eg. with cells or mice) that has applications to human health - findings in lab that make it to the clinic.
A multi-"salt" magnesium plus some glutathione antioxidant could temporarily calm some of the noise. Look into trans-cranial ultrasound (low power for 30-90 second sessions once or twice a day separated by at least 4 hours) (but this isn't even beyond trials yet), and Earthing which is stepping out barefoot onto the ground). Then vitamin C to recycle the glutathione, protecting it from its breakdown through its job.
All of these therapies would be calming inflammation and oxidative stress (both related to each other and to stray/excess electrical charges in the wrong places or out of control).
The magnesium I would use is "Magnesium Breakthrough" by "BIOptimizers" since it contains a large variety of salts. The bio-availability and especially the preferential uptake into specific organs...of Mg seems to be dependent on form, or salt.
And MIT students, a few years back, invented Magnesium-Threonate is also of therapeutic use as one possible tool, since it increases synapse density and neuroplasticity. Giving the chance of a brain to basically re-wire itself can be helpful when it is not functioning properly.
Lastly, fish oil, not snake oil, is going to help the body make the best membrane-encapsulated neuron bodies so that the brain is shuttling its neurotransmitters (which are basically signaling molecules) in a smooth and balanced functional pattern.
Other areas for YOU to RESEARCH before purchasing anything are these two things: Probiotics (like Seed DS-01), and Light. Look for a red and infrared light for winter and even summer use. It modifies the power of mitochondria. See this study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3179978/#:~:tex....
It always helps to be the doctor but if you can't be for lack of time or dont have a naturally discerning mind, then get an opinion from a hormone or sports clinic which is designed to optimize, not a family doctor who wants food on kids' plates rather than competition with supplements. And your kid does need to eat food too, as a base. It might just be that doctors have an inborn instinct to protect their valuable secret knowledge from falling into three wrong hands like a Google algorithm unless you have the right keywords, then you'll be rewarded with the right knowledge. I'd like a conversation of such insights as you might have about this and autism, given the fact that also when I was a child, I felt like I was pretty much just watching the life around me and taking notes, or not developing attention and communicating with kids my age in school or making friends.
If you want your kid to talk more but they have autism, maybe introduce from an interest of their's to a conversational style designed to be technical and teach the vocabulary of the thing that they like learning about.
Diagnosed, perhaps. Something like EDS is also a spectrum, you can have mild forms of it and not have them be enough of a concern to investigate, but obviously any amount of collagen disorder is going to have wide-ranging systemic effects.
There are a number of current studies looking more specifically into collagen disorders and autism and I expect them to find a broad correlation between the two.
It is with liposomal supplementation. This means that it has a surrounding lipid so microscopic balls containing the difficult to absorb substance (especially any thiol-containing molecular compounds) like Glutathione, can make it past without other peptides inhibiting its absorption.
Thiols science:
This research is informative for the topic of the role thiol compounds plays in the antioxidant system, of which, Glutathione is scientifically considered the body's master antioxidant, it recycling (think of "guarding") SOD (Super Oxide Dismutase) and Glutathione itself being recycled by Vitamin C.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7041647/
I'm forming a hypothesis tonight, as a "citizen scientist", that the very reason why thiols are hard to absorb is because thiols are often helping to get oxidized lipids and oxidizing chemicals OUT of the body in the two ways that can physically happen. It seems interesting to me.
I have, and it was in a period of my life where I was taking all <sorts> of nootropics. Im sure you've heard of them but they're not just ADHD meds rebranded as mind enhancing or memory boosters like some of the hype would lead you to believe.
Ask me about my TEN K For The Mind. It is a stack I had fun designing in my free time and even if it never sees the light of day, it still will always be The Extraordinary Nootropic Kit For The Mind!
I'm autistic and while it's nice to see ongoing research, I can't help but feel like this misses the point somewhat.
In particular I've seen a number of studies that make the jump from Fragile X syndrome to autism which I think is ill advised to say the least. There are a large number of genes[1] that are related to autistic individuals, and it's a very heterogeneous condition. In particular many, perhaps even most autistic individuals don't suffer from intellectual disability, don't have any physical characteristics which would set them apart from others, and don't tend to have problems with memory. All of these are characteristics of Fragile X syndrome.
> “Imagine being at a party, talking to a friend while music is playing in the background,” Frick says. “You have to integrate the sound of their voice with the movement of their lips.” But if there’s variability in sensory processing, socializing will be more challenging, he says.
And I'll take issue with this in particular. Frankly, the social issues of autistic individuals are wildly overstated and can be easily explained. Believe me, I know quite a few autistic folks and none of them have issues understanding when someone is speaking, we can tell. However, trying to sync up different minds that operate in different ways is a difficult problem.
Even among men and women with the same neurotype there's enough difference to cause _substantial_ misunderstandings. Enough ink has been spilled on the topic of relations between the sexes to fill oceans. And the difference between neurotypes is far more substantial than the difference between sexes in this regard. It's very easy for me to socialize with other autistic folks, I've had many conversations that have lasted hours on end. Doing the same thing with someone who is neurotypical though is much more difficult, and usually requires a willingness to put up with the awkwardness of not having the same vibe.
Finally, I won't go into anything about using mouse models for complex neurological conditions at the moment. But suffice to say, this article would be more properly titled "Noisy brain may underlie some of Fragile X syndrome's sensory features", but that probably doesn't get the same amount of attention.
> none of them have issues understanding when someone is speaking
This isn't it at all. It's the first part that's the issue. It's not that I can't understand speech, it's I can't focus on having a conversation increasingly as the number of chaotic elements increase.
There's loud(ish) background noise, there's people moving around, there's the uncomfortable feeling of strangers nearer to me than I would optimally like. And so I've realized in my younger attempts to fit in that I couldn't relax and have a good time and talk to people because of some of those things, because they felt to me like immediate urgent things and the conversation while I would like to have it is not getting priority.
A similar thing happens in larger group contexts, more people is more mental overhead, and additionally there's an element of not knowing how to take a turn in group conversation because I either lack an appropriate referent to relate or I don't know when my turn is.
By the time I have both something to say and can pay attention to turn taking the conversation has already moved on and I have to start over.
But neurotype is definitely a strong element in it, both in interests and somehow in things like conversational turn-taking as well. It also helps that a lot of conversations end up happening in text for me, turn-taking isn't an issue when you can both type at the same time.
What they actually mean is that the music is so loud that it's PHYSICALLY impossible to hear, and "neurotypical" people are making up what other people say.
Autism diagnosis benefits health care providers and the other concurrent symptoms can invite a circus of specialists. The targets are usually disadvantaged children whose parents don't really know how to handle the situation and frankly don't care if the costs are covered. There are often financial incentives for the parents as well from additional aid (monthly checks, tax return credits, etc.) while the diagnosis stands.
The symptoms of autism can be just behavioral to get a diagnosis and too many times that can be explained by plain old inadequate parenting. Lots of these parents are themselves depressed, addicted, or suffering from other mental health issues. The resulting behavior from the child makes perfect sense. The resolution can be as simple as letting grandma babysit more often. But that's not an acceptable solution once the public schools have recognized the child as special needs. Of course the schools benefit too. Gotta get those numbers up to justify the subsidies. I've seen it. Many others have too. I don't get why this is controversial.
As an undiagnosed but frequently-accused autistic person:
> Up to 90 percent of autistic people report sensory problems, including heightened sensitivity to sounds or an aversion to certain smells. Yet others barely register sensory cues and may seek out sensations by making loud noises or rocking back and forth.
I couldn't read anything after that last sentence.
It seems like nonsense to me, and therefore it seems that everything after it is also likely to be nonsense.
I don't (and haven't) done things like make loud noise or rock back and forth because I somehow seek to have more sensation. But I have done things like that because the sensations I am perceiving are too intense (even if those sensations do not exist outside of my own head).
In normal daily discourse, the last thing I want is more uncontrolled and inescapable stimulation.
And when uncontrollable stimulation gets to be too much (which can happen in a quiet and empty room, or a very loud and busy room full of colors and scents) and becomes overwhelming, I sometimes seek to whelm myself with things that can be controlled.
But that's never because I'm seeking more. It can be because I want or sometimes need for the noise (eg, the scents, scenes, tastes, sounds, physical sensations, and internal noise like pain and internal dialogue[s] and strong emotions) to cease, but since that is often impossible then the best I can do is give myself something else that I can control to focus on.
And that could mean making loud noises, or rocking. It can also include literally running away, or vocal outrage that surprises anyone around. The antidote could include lots of things.
But it's always just an attempt at an antidote; it isn't ever an attempt to feel more.
I think that if "up to 90 percent of autistic people report sensory problems" is true, then "at least 10% of autistic people are completely misunderstood" must also be true.
>When the article says "90% of autistic people", are they talking about people who can't take care of themselves, or people that don't know what to do with their hands when I see them in the hallway?
well, that's up to the clinician and diagnosing staff rather than the off-hand judgement of someone who watches them in the hallways I guess.
>people who compounded habits into atypical personality traits.
the thing is that some people don't do this when confronted with environments that would prompt the behavior in other people; that alone indicates a difference between the two groups; probably one worth investigating.
Essentially everyone in the modern world has a mobile phone, internet connection, access to lots of media, etc -- but not everyone is autistic. That's the whole interesting catch, right?
>Essentially everyone in the modern world has a mobile phone, internet connection, access to lots of media, etc -- but not everyone is autistic. That's the whole interesting catch, right?
I was talking about ADHD not Autism here. I edited my original post to be more clear. I would agree that essentially everyone has a mobile phone, and the usual apps, and essentially everyone's attention span has gotten worse as a result. Do you think the median attention span has gotten better in the last 10 years?
I think you unintentionally insult those who “habitually practiced poor executive function.” Why would they do that, if it’s harmful to them? Many medical professionals would say these choices are strong indicators of a “hardware problem.”
It’s possible there is severity factor you’re ignoring; do less severe sufferers of ADHD not have ADHD, because they’re not hurting “enough” to satisfy your criteria of disease?
Someone said "the greatest minds of my generation are focused on getting people to click ads".
That is what has lead to habitually poor executive function. Go look at YouTube shorts, or TikTok. There are videos which are literally two videos stacked vertically. Apparently this is because 1 video isn't stimulating enough to keep people from clicking away. That wasn't normal 10 years ago, and would have been uncomfortable for many people to watch. People's brains have changed, formed new habits, through repeated practice. I'm not insulting anyone, most people don't realize they are training their brain in a way they won't appreciate later.
ADHD was first recognized as a condition well before the internet. Clearly there is a way you can have this condition genetically or from your early environment. But now there is a boom in ADHD diagnosis, and it's not because the original etiology has become more prevalent.
Which do you think is more likely: single etiology with varying severity, or multiple etiologies presenting with similar syndromes?
> Why would they do that, if it’s harmful to them?
Because they don't know any better? My understanding is that the two treatment options regardless of diagnosis and regardless of hardware are either "medicine" or "self-awareness leading to behavioral change" (where therapy is often the delivery mechanism, but can also be self-help or mindfulness)
Now just to find a competent neurologist who's willing to run a brain scan.
0: https://en.wikipedia.org/wiki/Monotropism