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! 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.
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.
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.
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.
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
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.
I have a different perspective. What makes some traits "autistic" and others not? Okay, there is some positive correlation between them - but lots of "non-autistic" traits are positively correlated with "autistic" traits too. How big is the difference in correlation between different "autistic" traits on the one hand, and between "autistic" and non-"autistic" traits on the other? Is that differene in correlation big enough to provide scientific validity for the distinction between those two sets of traits?
Lynn Waterhouse argues that autism originated in a couple of related but distinct scientific hypothesises – Leo Kanner's "early infantile autism" and Hans Asperger's "autistic psychopathy" – both concerning a cluster of postively correlated traits in certain children, which displayed some similarities to those traits displayed in adults with schizophrenia which Blueler had labelled "autistic". As those related hypotheses evolved, they were eventually merged into a single hypothesis "ASD" – which however, is so vague and amorphous as to be essentially unfalsifiable. Waterhouse argues that Kanner's and Asperger's hypotheses were perfectly legitimate for their time (the 1940s), but have never been confirmed, and the best interpretation of the available evidence is that "autism"/"ASD" (in all its versions) is a false theory, that should be filed in the annals of the history of science next to phlogiston and the luminiferous aether. But, like Ptolemy's epicycles, rather than abandoning a scientific dead end, people keep on fiddling with theory to try to keep it alive.
But, even if Waterhouse is right, and "autism" is an inescapable scientific failure - it has had enormous cultural success. And that's what I mean to say it is a culutral construct. Indeed, its cultural success is arguably a major factor stopping people from moving on from it, even if (Waterhouse argues) that is the right thing to do from a purely scientific perspective. And to be clear, while Waterhouse denies that "autism" is anything other than an arbitrary grouping of traits, a label based on history rather than the best current science, she doesn't deny for a minute that sometimes these traits can produce significant impairment–and even if we judge it a failure as a scientific theory, that doesn't in itself answer the separate question of the benefits or harms of the cultural construct that theory has sprouted.
Laurent Mottron's perspective [0] is less radical than Waterhouse's, but has some overlap. He argues (contra Waterhouse) that it is too early to declare the narrower 1980s/1990s idea of "autism" (and even its cousin "Asperger's") a scientific dead end. But, he thinks we've blown up its boundaries to the point that it has lost all scientific value, and so at that point he agrees with Waterhouse that 2020s ASD is a scientific dead end. However, rather than Waterhouse's proposal of abandoning the concept entirely, and looking for complete replacements, he wants to go back to a focus on the older narrower concept (which he labels "prototypical autism"). I think he'd agree with Waterhouse that the current concept is largely a cultural construct riding on the back of a failed scientific theory; but they disagree about the scientific value of its prior iterations.
[0] see https://onlinelibrary.wiley.com/doi/10.1002/aur.2494 and https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9054657/
There's growing evidence of neuroanatomical differences between ASD and control populations in (replicable) studies, and I think further neurological study can be the only path forward to settling this debate as to whether autism needs to fragment, change shape, or be abolished as a concept entirely.
I'm 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
> 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.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5192959/
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.
My son, however, has severe ASD and will likely need a caretaker for life.
The difference in the spectrum is astonishing.
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.
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 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.
> 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.
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.
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).
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.
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'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.
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
I think to gain a better understanding of "what's really going on", good places to start are https://www.nature.com/articles/s41398-019-0631-2 and https://link.springer.com/article/10.1007/s40489-016-0085-x and also https://stresstherapysolutions.com/uploads/wp-uploads/RA.pdf
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
> 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.
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.
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, 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
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.
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.