Well the nature of autism being a "spectrum disorder" (per the DSM, the officialest psychology book) inherently means that there will be people who are 1%, 2%, 5%, 50% autistic. So boolean labels/diagnoses don't really apply very well in all cases.
I think that fact doesn't sit well with some people and that's worth exploring. Perhaps wanting bucket people to be "neurotypical" or "neurodivergent" (rather than on a normal distribution) may reflect an underlying desire to have an ingroup or outgrop, for example.
Interestingly Simon Baron-Cohen (Yes, Borat's Brother!) proposed the theory that a ton of intelligent people in professional fields and/or academia called "systemizers" carry a slight predisposition toward autism and mate with each other [1]. I haven't followed up how well his theories have held up in the last 5 years.
"Neurotypical" always rubs me the wrong way, because I feel I've never met this person with a typical mind and I'm not sure they exist. I prefer to think of it as a distribution over a very high dimensional space, where the autism spectrum would be one dimension among many. I saw someone make a comment the other day about the average person having "one ovary and one testicle," which is crude but illustrates the point well.
Maybe not typical, but you must know somebody who doesn't suffer from ADHD levels of distraction or an inability to cope with sensory input from autism. like you said, it's a distribution and it's important to recognize that there exist people that trend towards the typical end of the spectrum and aren't severely afflicted by mental illnesses the way some people are.
given that there are people with one testicle and other people with one ovary, the average is probably less than one for both.
I don't know anyone that doesn't have something going on some of the time. Consider that a multimodal distribution in a high dimensional space doesn't really have a center, or has many centers, depending on how you want to look at it. It seems unlikely to me that the geometry would be simple.
To strip out the math metaphor in case it's unhelpful, there is no single way to be a normal or typical person, there are many ways. At first approximation you could think of them as being different archetypes (that metaphor ultimately suffers the same problem that I'm describing with "neurotypical", but just to illustrate). They aren't better or worse, just different. The problem isn't that someone is one type or another, but that the differences lead to confusion and miscommunication.
> given that there are people with one testicle and other people with one ovary, the average is probably less than one for both.
What do you think would happen if we rounded fractional values, given we're talking about something quantized?
you must know people that have less going in those dimensions than others. a friend that never loses their keys, or a friend that's always on time. they don't have to have utterly uneventful and unremarkable lives to be neurotypical, but some people just have less trouble with things than others. Or, you don't have any one who is neurotypical in your life, which is why you question the word. which is entirely valid as well.
as far as the average: I'm just saying the average person has more like .9 ovaries and .9 testicles.
I don't live in a reality where people have 1.8 gonads, I live in a reality where people an integer >= 0 number of gonads (which may be more or less than the mode of 2), so I feel like we're not quite speaking the same language and aren't quite understanding each other.
How many times do you have to forget your keys to be neurodivergent?
If you lived most of your life always remembering your keys, but when you entered your 40s you started to experience some pretty radical shifts in your personality, and as a result you start forgetting your keys - are you neurodivergent now? Were you always?
Similarly, what if you keep forgetting your keys, and you have a lot more trouble at it than other people, but over time you develop systems and skills that work for you. Did you stop being neurodivergent?
the world I live in has people with two testicles or two ovaries, generally, and not one of each. if you want to make it a math problem and average it out then it's just numbers and the math says it's a non-integer value.
if you experience a large personality shift when you hit 40 that results in you needing medication to function as you were before, yeah, I'd call that neurodivergence. that implies that for that person there was a state before where things were typical for them. schizophrenia is something that often manifests before hitting 30, and that's definitely a neurodivergent condition. before it manifests the person could be considered neurotypical for the most part.
if you're able to get to a place approximating a neurotypical person with a heroic amount of effort, you don't stop being neurodivergent because you've lived that whole past life where you had those struggles to be neurotypical so even in this neurotypical state, you can't forget your past.
It seems trivial, but I do actually think the average thing is the core of our disagreement. I suspect our different interpretations of questions like that are at the root of our different viewpoints. I don't think either of us are going to change or mind here, but I appreciate your perspective. Thanks for sharing.
>"Neurotypical" always rubs me the wrong way, because I feel I've never met this person with a typical mind and I'm not sure they exist.
The variation of "traits over a very high dimensional space" doesn't really prevent the distinction.
"A distribution over a very high dimensional space" can still have clustered groups on one side of the high dimentional space vs the other side, based on a set of X traits.
And neurotypicals are clustered away from neurodivergent people of various types, on the relevant traits.
(Plus, of course, traits that are equally variable within both groups are neutral as far as the classification is concerned).
>Well the nature of autism being a "spectrum disorder" (per the DSM, the officialest psychology book) inherently means that there will be people who are 1%, 2%, 5%, 50% autistic.
Not exactly how "spectrum" works. It's about the variation of type and severity, not merely the variation of severity.
And there's no 1% or 50% autistic per the DSM. It's just autistic (or non-autistic), and autistic comes at 3 levels, which is not 33% 66% and 100% autistic, but autistic with low, mid, and high support needs.
If you're diagnosed as autistic you're not 5% autistic or 30% autistic, you're autistic, period. Your support needs just vary (and the 3 levels is a crude, but "good enough", breakdown for policy decision making).
Sure the DSM isn’t capable of assigning a % but that’s just a practical simplification it makes. There are over 100 genes strongly linked to autism and many other correlates. There are obviously people in the world who stim every minute, some every hour, some once a day, some once a week, etc. All of these symptoms fall on a range (be it eye contact). Often with these cases a sibling has a more severe case.
>There are obviously people in the world who stim every minute, some every hour, some once a day, some once a week, etc. All of these symptoms fall on a range (be it eye contact)
Those are just the easiest to spot and measure outward symptoms. Not that relevant for giving some imaginary finegrained "autism score", just to diagnose.
Internal symptoms, the important ones, like sensory issues, social adaptability issues, routine issues, emotional regulation issues, and so on, are not quantifiable like that, and those are the ones that actually matter.
But whether external or internal, the symptoms don't neatly fall on some specific range for a single individual, but vary with age, external conditions, factors like stress, sensory triggers, environment, emotional state, masking, and so on.
There's no "this person stims about X% with some specific interval" measurent" (or whatever other symtom you want). And thus there's non measurable "autism percentage within this 0-100" (whether on a linear scale or in some higher dimentional space).
The website the "Institute for the Study of the Neurologically Typical" existed back in the 90s. Back in those days, it just meant "not on the autism spectrum". People parodied how other people acted to express pride in themselves and of course mock the weakness of others, so as to prove they are the best.
Autistics have been using "Neurotypical" to describe the out-group for decades and won't stop anytime soon. It serves a social purpose due to social failures elsewhere that cause autistics to be rather stigmatised.
Enticing theory, but doesn’t seem to have held up, even mentioned in that wiki a little. There seems to be lots of criticism of his work. It’s not wholly bad I don’t think, but probably too simplistic.
The "Extreme male brain" theory aged like milk, that autistics have more "male" brains than the rest of the population. Years after that theory we saw extremely high incidence of MtF transgenderism among autistics. Living as a woman doesn't really seem like an extreme male brained thing to do.
It aged quite well, it's just the name that didn't age well, because in 2024 you can't say males have more of X trait and women have more Y trait for political reasons.
That certainly plays into the unpopularity of the concept, but even independent of that, this doesn't address the central criticism that autistics seem to be more likely to be MtF transgender.
We know that MtF transgender people that the brains of transgender women resemble the brains of cisgender women, than the rains of cisgender men resemble the brains of cisgender men.[1] Transgender women have extremely androgynous brains, not extreme male brains.
Generally, if you rephrase the concept as the "Emphasising-Systemising theory of autism" it becomes a lot less implausible. "Extreme maleness" implies being more male across the board to an extreme, and that does not appear to be the case with autistics, they might have a few male-coded traits but they're not extremely male.
That study, and others with similar results, do not control for sexual orientation - even though it's already well established that homosexuality correlates with some brain structures being atypical for one's sex.
In the studies that do control for sexual orientation, no such shift towards the opposite sex is found to correlate with gender dysphoria.
Instead, what has been shown are differences in structural and functional connectivity within the default mode network of the brain, which is essential for body perception and self-referential processing. See for example https://www.nature.com/articles/s41598-017-17352-8.
Note: The title set off all my alarm bells for some kind of ragebait piece, but the title is ironic - this is actually a painfully thoughtful 1-hour exploration of the topic from a philosophical/political angle.
I really liked the beginning but personally am firmly convinced that autism is a serious biological problem/phenomenon that can only be understood by hard-science. It's true that like other disorders (depression, anxiety) it manifests in a wide variety of symptoms, but for sake of illustration if you ate a bunch of lead (causing a strictly biological problem) it'd likely manifest in a whole host of different ways among different people (one might be withdrawn, another might be violent).
Frankly if we're seriously concerned about understanding whether autism is growing, we should develop software-administered questionnaires and take annual samples, you'd only need 2,000 people a year to have a very significant sample.
I'm under the impression people who have autism take issue with pathologizing it and calling it a "problem" or "illness," and want to be accepted as people who are simply different. The people I know with autism diagnosis are just people, they aren't ill. They might interact with you in a way that feels overly blunt and awkward - but when you understand that's a problem of mismatched expectations, similar to interacting with someone from a different culture who unintentionally comes off as rude, it stops being a problem.
I've been told I'm probably autistic (no formal diagnosis, no interest in pursuing one, I don't really see how that would benefit me and my therapist isn't really interested either) and certainly am neurodivergent in a variety of ways, and when it causes me problems it's usually because I'm a round peg which society wants to shove into a square hole. Not because there is something inherently wrong with me.
I do not have autism or ADHD,
but a significant number of people in my family do*
such that the behaviours popularly believed to be associated with autistic people are the cultural norm in my family, it took me a few years, and many missteps to adjust to the wider cultural norms, and even now after decades as a functional neurotypical, there is a joy, and a sense of slipping back into speaking my mother tongue when I find myself in conversation with someone who speaks and acts with the patterns of my childhood. When for example, last week - an 11 year old was barely able to meet my gaze begins arguing a strongly articulated position on the nature of mosquito consciousness or my work colleague who cannot bare turning on his webcam, leaps straight into a discussion of the relative merits of different data structures.
*in my close family - two women - both formally diagnosed as autistic, and at least 4 men among the family elders who trained as mathematicians or engineers are assumed by other family members to be on the autism spectrum, but I am not privy to any formal medical diagnosis.
Don't mean to offend -- my intent there with the slash is to convey that I give each individual the right to independently label it as a problem if they feel it is, or to label it as a mere phenomenon if they feel it isn't.
Gotcha. To be clear I don't take offense, I just thought it was worth pointing out.
I do see what you were going for there, but it is sort of undone when you seem to compare it to eating lead immediately after. I understand you weren't intending to do that, you never draw a direct comparison, but the juxtaposition seems to imply it. The lead thing was what tipped the scale and made me decide to write a comment, I was on the fence about it.
>I'm under the impression people who have autism take issue with pathologizing it and calling it a "problem" or "illness," and want to be accepted as people who are simply different.
If you're talking on Hacker news, this is correct, don't pathologize autism or you are condescending to and infantilising your peers. It is obvious autism played into the success of many in this field, treating autistics as if they simply have an illness is unfair.
This is CONTEXT DEPEDENT though. If you're talking to a mother of an 8 year old who is having problems with their child damaging their brain by smashing their head on the wall repeatedly to self-stimulate, and they say to you "I wish we could cure this disease of autism", that's when you go with the flow.
There are "levels", but people ignore them. The status quo is that everybody gets put in one bucket called "Autism" regardless of if they're unable to live independently or are multi-billionaires like Elon Musk.
>I really liked the beginning but personally am firmly convinced that autism is a serious biological problem/phenomenon that can only be understood by hard-science.
Autism is a sociopolitical concept which transcends science where anybody considered sufficiently impaired is deemed "Autistic" regardless of the underlying scientific cause of that impairment. Consequently, Autism is really multiple independent medical issues with overlapping symptoms all hiding in a big trench coat. It is hopelessly entangled with a ton of societal baggage and is not and most likely will never be a hard science concept.
>Frankly if we're seriously concerned about understanding whether autism is growing, we should develop software-administered questionnaires and take annual samples, you'd only need 2,000 people a year to have a very significant sample.
We have plenty of sampling to test autism incidence.
Hard disagree. Currently in the US the CDC puts incidence of Autism at 1/36, a number that has changed significantly every year for the last 30 years. There is no longer a scientific consensus that the rate is not changing because we have little incidence data that is judged by in a consistent manner over decades
I mean, I understand that, yet I just see that as more evidence that Autism sociopolitical concept rather than a scientific one since we seem to keep changing our opinion of what Autism is. I see the incidence data as reflecting changes in the sociopolitical environment, and only being loosely connected to any actual population-wide biological changes.
I don't think you're ever going to objectively measure how much "Autism" as a scientific biological concept is in the population because again, Autism is a bunch of separate conditions wearing a trench coat. If you ever measured it scientifically and objectively, it would risk people losing their diagnosis and the would be unacceptable. You simply can't objectively measure a subjective concept.
More likely when we start measuring thing scientifically and independently we will start testing for the conditions in the trenchcoat rather than for "Autism" itself.
I'm interested in understanding why you think autism is sociopolitical and not knowable through science. You state this many times as fact.
The term "autism" may be an umbrella term that defines multiple conditions. I don't know that to be true but it might be. If that is the case, then it seems likely because we simply don't understand autism well enough to categorize it further, not because autism is unknowable from a scientific or medical perspective. It may be an umbrella term today but so many concepts in science start out as flawed and are refined over time as we build our understanding.
I think if we set out to understand "Autism" itself we will get hopelessly confused. My complaints are part of a more general complaint with the DSM-V rather than Autism specifically. I'm not hung-up on trying to understand what we call "Autism" scientifically, I'm more interested in addressing the symptoms people have.
"it has become increasingly evident that many central features of the DSM-ICD model do not map adequately onto the state of nature (Sanislow et al., 2010). The high levels of covariation among putatively distinct categories, the large number of intermediate cases, and the substantial phenotypic and etiological heterogeneity of numerous diagnostic categories, among other vexing anomalies, suggest that something is deeply awry with at least some core presuppositions underpinning the neo-Kraepelian model of psychiatric classification. Moreover, these problems have proven stubbornly resistant to repeated efforts at amelioration across multiple DSM and ICD revisions. The shortcomings of the DSM-ICD edifice therefore appear to reflect an inherent deficiency in its architectural floorplan that cannot be fixed merely by adjusting some of its walls."
"During his tenure as NIMH director, Steven Hyman expressed his concern at seeing preclinical researchers attempting to develop animal models that would mimic DSM-based diagnostic criteria. As Hyman put it “The DSM system…created an unintended epistemic prison that was palpably impeding scientific progress…Even animal studies that purported to develop disease models…were often judged by how closely they approximated DSM disorders.”"
Autism incidence as you brought up went from 1 in 10,000 to 1 in 30. If Autism diagnosis has NEVER been stable, isn't that a red flag that there's something going wrong at a conceptual level?
When you see the richest man in the world and some of the most disabled people in society diagnosed with the same condition, isn't that odd?
Why do Autistic people say "If you know one person with autism you know one person with autism" and seem to emphasise the heterogeneity of the condition? Why is there so much overlap with other conditions like ADHD, OCD, and Anxiety? Why do people diagnosed with comorbid conditions not seem to act like people with each condition independently?
Things like we're seeing with TikTok autism is examples of the reification of Autism and Autism presenting itself more as a social contagion than a neurological disorder.
So I understand the complaint that perhaps there's evidence that things currently classified as autism might be genetically or otherwise differentiable.
However to my mind that simply strengthens the need to have some sort of computerized system for measuring population samples. Removing human subjectivity from the equation will only give us more hard data to identify exactly what correlates with what.
Moreover I think somewhere in your logic you're making this assumption that autism rates can't be going up by a factor of 10+. I think there's no reason to assume that, we've seen other biological conditions (some even covariate with autism such as allergies) increase and let's just take nearsightedness as an example that has grown more than 10x.
In essence, I think it's entirely plausible that autism rates have gone up and tiktok merely happens to be informing people who have very mild symptoms of what's happening -- and to prove or disprove that hypothesis we'd want tests not administered by a biased human.
Here's one approach in a very small study, which I wouldn't call a perfect approach but I think it's still probably a modest incremental improvement on the status quo.
The amount of autistic people there are each year has changed every year autism has been diagnosed. Every year it has been observed that when you controlled for SES autism wasn't diagnosed more often in any racial group, but when you diagnosed in the real world you would see diagnosis being socioeconomically stratified (And consequently racially stratified). Psychiatrists also charge THOUSANDS OF DOLLARS for a diagnosis, and of course, the incentive is to not piss off the customer. Since things are so expensive, re-diagnosis is not very common, except when somebody gets told they AREN'T autistic. Psychiatrists regularly say batshit things about what they believe autism diagnosis means and it gets posted on the internet.
All of this has made me a self-diagnosis accelerationist because I don't actually like loose labels like autism conceptually.
TikTok Autism somewhat transcends normal self-diagnosis politics this because the medium is the message, and in the case of TikTok autism, autism often means wearing headphones and "stimming". There is a lot of performative autism which I have never seen millennial autistics do my entire life.
In the book:
Understanding attachment and attachment disorders: Theory, evidence and practice by Vivain Prior and Danya Glaser.
The authors point out the amount of incoherent, disingenuous and basically fake disagnosis around Attachment disorders making the rounds on the internet.
In 2006 there were 4,990.000 items on the famous search engine referring to the diagnosis of attachment disorders. Apparently the abundance of usage of the term "Attachment disorder dignosis" is not matched by the abundance of understanding as to what it actually means.
Children with "Attachment disorder diganosis" are described as; Liars, thieves, lacking in conscience, and having various other negative attributes.
There seems to be a licence to produce limitless items to characterise this apparent entity:
here is a small list:
1. avoids making eye contact, especially parents but look into your eyes when lying.
2. ask persistent nonsense questions and chatters incessantly.
3. Is fascinated with fire, blood, gore, weapons and evil.
4. engages in food related issues, hording, gorging, refusing to eat and eating strange things
5. Displays cruenty to animals.
6. dosplays no conscience, shows complete lack of remorse.
clearly none of this is true or suppported by any evidence that I have seen in 25 years as a psychotherapist.
I think that fact doesn't sit well with some people and that's worth exploring. Perhaps wanting bucket people to be "neurotypical" or "neurodivergent" (rather than on a normal distribution) may reflect an underlying desire to have an ingroup or outgrop, for example.
Interestingly Simon Baron-Cohen (Yes, Borat's Brother!) proposed the theory that a ton of intelligent people in professional fields and/or academia called "systemizers" carry a slight predisposition toward autism and mate with each other [1]. I haven't followed up how well his theories have held up in the last 5 years.
1 - https://en.wikipedia.org/wiki/Simon_Baron-Cohen