Autism's Four Core Subtypes | Hacker News Reader

Autism's Four Core Subtypes

thetransmitter.org

141 pointsdomofutu120 comments

Reminds me a bit of the MBTI personality test, where they make up 4 types of question to arbitrarily split the population, so 2x2x2x2 = 16 subtypes. It's true by it's own definition. Which is fine, but are these particular arbitrary boundaries useful? Perhaps. Could the splitting lines have been just as useful in different arbitrary place. Perhaps. A lot of people who take the MBTI find they're on the boundaries flip-flopping into a few different pigeonholes depending on different times they take the test. So it's important to let people know they can be in multiple buckets (are a bit in all of them), and take a little advice from each community.

For this one they split autism into 3 groups (core,social,developmental) then split core into (mild,severe), to make 4 total.

It's not true by its own definition, it's just that if you soak it in, you will actually start to see the patterns behind it among people. It's still going to be pseudoscience because there are a lot of variables, but it often works and even more often people don't know what to look at or what to put together, because you'll find really A LOT of articles on the Internet that try to run mechanics on certain types without understanding what or why. I assume that if you want to put this together more precisely, there is a lot of scope here.

And lest it be said that I'm talking out of turn myself, I only became interested in this whole MBTI thing because an ENFP once told me I was an INTP after a few hours of talking about silly things. That's exactly what these tests once told me. Of course, these are still anecdotes, but we are sciency.

Is it a problem that someone has catalogued autism in this way? Is it a question of lack of precision or bad direction? Am I asking the wrong questions?

It's true by definition because MBTI splits people into two groups, four times in a row. Everyone is going to fall into one bucket or another, just as the last 4 bits of any integer is going to be one of 16. The question is whether the distinction has any practical uses.

My guess as to why MBTI is more popular than other equally valid personality tests is that the splits are defined in such a way as to capture a few traits that people find the most irksome in their everyday relationships. You want to take a rational approach, but your SO gets all emotional? Well, that's a T vs. F thing. It might not be medically meaningful, but IMO it does help us appreciate that other people's minds might be wired differently. Not wrong, just different.

Business idea: AI companions with custom personality out of the box. Choose the MBTI type you want!

You are writing about the highest level of abstraction, instead of the functions assigned to specific type and lower. Besides, it is common to combine the MBTI with the Enneagram. You literally comment on what you see at a glance.

They also posit correlations with epigenetic differences. If there’s distinct biological mechanisms at play, this gives some credence to splitting autism into separate conditions

Reminding is different than being the same.

For example, Big5/OCEAN/FiveFactor model uses factor analysis which has statistical reasoning behind the number of factors. In fact, the semantic meaning of the factors comes up after the analysis, not before. It's the same as clustering or GMM, the semantic meaning of the clusters is applied after the partitioning.

The concept of partitioning people is the same, however, the order by which meaning is applied is opposite which makes them completely different in practice.

descriptive vs prescriptive

Data driven vs some writers who read Jung.

> Troyanskaya and her colleagues investigated the variants associated with a person’s collection of characteristics. They applied a statistical model to data on the traits and behaviors of 5,392 autistic people from the SPARK research cohort. By adjusting the number of groups, the team found the most significant similarities among participants when the model sorted the cohort into four autism subtypes.

https://www.medrxiv.org/content/10.1101/2024.08.15.24312078v...

Not my field, but the statiscal analysis seems legit.

Have not read the article in depth yet, but I am very familiar with the Troyanskaya lab. They are good and their articles are always worth a read.

They are using a geodesic finite mixture model, which I am not familiar with, but seems to be an extension of mixture models to non Euclidean metric?

Pleiotropy can be tricky though, as traits / diagnoses / observations can have causal relationships amongst themselves. For example, a variant that impacts obesity may be statistically associated with heart attacks; but the relationship between the variant and heart attacks is not directly causal in the sense of something like a variant that alters function of an ion channel expressed in cardiac smooth muscle.

If the data is a roughly uniform distribution across the dimension space, then yes absolutely.

If, however, there is significant clustering within the dimension space, and those clusters are taken as groups, then it seems valid.

I would tend to be generous to the researchers and assume a mostly discrete clustering until I see otherwise. To apply grouping like this without discrete clusters would be unprofessionally naive on their part.

The distribution of the data is also the main problem with MBTI, AFAIK. Intra-/extraversion for example have a unimodal distribution with most people being somewhere in the middle. And exactly that middle is where MBTI makes the cut on their classification.

This is a great point. We have a generally tendency to typify in binary[black and white] terms. It overrides our ability to express nuance and un this case pushed out a larger category (if we even wanted to still categorize) of ambiverts.

MBTI speaks more on our drive for categorization than it does on the people being categorized.

There’s a better way to frame this issue: being able to consistently label a characteristic is only useful if it can help in identifying the underlying mechanism or is helpful in choosing an effective treatment.

A whole lot of mental health knowledge fits into the category of repeatably identifiable categories of dubious usefulness.

Think phrenology: it is indeed possible to categorize the shape of people’s head in a statistically valid way… it just has nothing to do with their mental health.

Are you a libra? This sounds like something a libra might would say! /s

“Repeatable identifiable categories of dubious usefulness”

Yep, there’s a lot of this in modern science.

“Is this method of classification useful? wrong question! All you need to ask is, is it easy to write a reproducible paper (or shareable web content) on this method of classification? Yes, yes it is!”

There’s a lamppost problem at work here.

Eh, it's more like the DSM was written primarily with the concept of billing and charting in mind. If you track and bill medical conditions, you need a consistent language for things that will be consistent across medical providers.

It solves a problem, just not the problem most people think it solves.

https://en.wikipedia.org/wiki/DSM-5

If we consider science as a way to document reality (among other things) then "information -> decision" is an elegant point of view (if information doesn't help make decision, it is just noise). https://news.ycombinator.com/item?id=41881872

It reminds me of "brain (mostly) for movement " (no decisions to make, no brain is necessary). Sea squirts being a prime example: "As an adult, the sea squirt attaches itself to a stationary object and then digests most of its own brain." (Rodolfo R. Llinas I of the Vortex: From Neurons to Self) https://www.amazon.com/Vortex-Neurons-Rodolfo-R-Llinas/dp/02...

It’s probably more helpful to think of them as spectra or overlapping circles of behavior. When we talk about psychological disorders, they are clustered and only useful insofar as they allow professionals to talk to one another and mean the same things.

Undoubtedly each human displays a unique case and manifestation of whatever behavior we choose to specify, and that individuality can pull from different “trait” or “behavior” groups on a scale.

It’s only when we start to lump together many cases that we begin to discern between types and patterns, but it’s silly to make a harsh distinction between clusters and then pretend like they are emphatically different from the next. Grouping can have its uses, but we shouldn’t forget each person presents uniquely.

Well said. Psychological diagnoses are genres for the brain.

As someone with a close family member who is autistic, I am always bothered by the phrase "if you have met one person with autism, you have met one person with autism". Autism as a diagnostic classification is so broad that the non verbal are lumped in with those with rigidity behavior, when at least to me they seem like they should just have a different diagnosis. This is not just playing semantics if they're able to correlate against specific sets of genes. This work seems highly relevant, IMO

Merging autism with asperger went the exact opposite direction of where it needed to.

The reasons why the change was made (https://www.thetransmitter.org/spectrum/why-fold-asperger-sy...) still make sense to me. The autism spectrum is quite wide, and I'd 100% believe something meaningful coming from the source study, but the specific category of Asperger's was based on factors that don't seem to matter much and weren't being reliably evaluated.

The problem was that a diagnosis of Asperger's was unreliable and therefore useless. We definitely need to identify individuals within the diagnosis of autism spectrum disorder that can reliably be identified and benefit from specific interventions. However, Asperger's did not provide that.

The problem was that asperger was a problematic physician at best.

I'd argue that having the descriptor of "asperger's" is much more useful than simply having a blanket descriptor of "autism". Low functioning people who are described as having autism, have very little in common with most of the high functioning type.

> have very little in common

[citation needed]

Do you really need a citation that a non-verbal, uncommunicative and non-independent "non-functional" traditional autism case is different from what would often be referred to as "Asperger's", which is common amongst software developers? Or take people like Elon Musk, Bill Gross and David Byrne, who all claim to have Asperger's, Bill and David having been formally diagnosed. These people, who achieved great success, and went through most of their lives without needing a diagnosis, are clearly nothing like the non-functional patients with clearer traditional cases of autism.

First you claimed that they "have very little in common", and now merely that it "is different"... although in the next sentence you go back to "clearly nothing like"?? You seem quite undecided about what you actually want to say.

They're obviously "different", but there's plenty of reasons to believe that they have a lot in common, so going against established science should require some citations.

No, the problem was that psychiatrists could bill insurers more to treat autism than they could Asperger's. You aren't cynical enough.

If it wasn't a scientific distinction, why are we still identifying autism subtypes?

I think this is precisely why for-profit healthcare is wild. If it weren’t for ideology we could get behind socialised care and cut out all of the nonsense.

Do you have any information on patients could be billed more for an autism diagnosis? I've never heard this claim before.

Mostly anecdotal, my school psychologist back in the day sure believed it, and this would vary from place to place. She was a champion of "You give children the diagnosis that gives them the services they need". Autism being the one which gave children the services they needed, and she often expressed frustration at not being able to get such a diagnosis.

In general Aspergers basically meant no verbal delays, where Autism meant verbal delay. Autism was also around longer as a diagnosis. In general, I think theres a reason they changed the name of Aspergers to Autism and not the other way around.

I thought they changed the name in part because Hans Asperger was a Nazi collaborator.

Interesting that the diagnosis of autism apparently wasn't available to her. Do you know what she would have been referring to by the autism diagnosis being able to get children the services they needed, that the "asperger's" diagnosis would not?

It can be helpful to get a diagnosis of autism for kids in public school. Kids end up needing additional one on one time and resources are limited. Those with the biggest problems are the first to be approved for these resources, and a formal diagnosis makes it easier to get that approval.

>diagnosis of Asperger's was unreliable and therefore useless

If this is true, then in what way is the diagnosis of autism reliable, that the Asperger's label was not?

Asperger's was not reliably diagnosable between healthcare workers trained to diagnose it. In other words, a diagnosis of Asperger's in someone's medical chart was not a reliable way of knowing if they had Asperger's.

This isn't really providing any clarity to the question, since you're simply restating your previous claim. How is a diagnosis of autism any more reliable?

As in it has a higher inter rater reliability. The statistical term of reliability that is used when describing the likelihood to reproduce a measure under similar conditions.

What matters here is not the general inter-rater reliability for all autism diagnoses, but only those for the patients which would have otherwise been described as having Asperger's, which can often present as a very mild disorder. Given that many Asperger's cases are mild, it is no surprise that there is low inter-rater reliability. Is there evidence that for this type of individual, there is a higher inter-rater reliability with the diagnosis of "autism"?

It almost feels like a cynical ploy to nerf autism so insurance companies don't have to pay for anything.

There's a huge, huge, difference between "I'm awkward" and "my kid cannot talk".

The expression you quoted is completely agreeing with you! It’s a play on the expected idiomatic ending “then you have met everyone with autism”, pointing out that the diagnosis is broad and everyone is different

Why even have the word autism? It's almost meaningless.

"hot" is still a meaningful word even though 100 F°, 1000 F°, and 1,000,000 F° aren't comparable at all. They're nonetheless still all experiencing heat.

Yes, if we could pin it to a linear scale of Degrees Autistic (Farenheit), that could be estimated with reasonable precision for all day-to-day relevant values by feeling the nearby air on your skin, nobody would complain about "Austism" being too broad.

Am I missing something you can though. That's actually kinda how it is. I detest the phrase "high functioning" but that group is roughly your outside temperatures. You'll notice the difference between 30° and 80° and the same temperature 72° can feel different in the summer, winter, before it rains, when it's humid/dry but is still the same intensity. Then there's 1000° degrees where (and this is someone I know) he stripped naked, ran through downtown, and yelled at random restaurant workers calling them fascists for not lettting him in and then got into a fight with the cops.

I think broadly that's what the "spectrum" characterization is meant to convey. And you should expect this, in code there's one happy path and a million different ways to err, some more catastrophic than others.

Usually it's at least 4 scales with no strong correlation (and a couple more that are correlated more). They do have them.

Thus, it is incorrect to refer to Autism as a "spectrum". Instead, we should correctly call it a "manifold".

Locally euclidian?

It seems to me that something could be hot enough, that you could vaporize before your nerves signal your brain.

The symptoms cluster together and are related. Someone with sensory issues is also likely to have food aversions, for example.

It's also useful for diagnostics and treatment. It means you don't have to fight insurance as much or need rediagnostics to get needed therapies. I don't need to get my child with food aversions, speech delay, and sensory issues a new diagnosis for each just because some people with autism don't have those issues.

That sounds like a problem with the medical gatekeeping industry rather than anything fundamental. Like a blanket diagnosis of "human" would get you the same thing, but for the middlemen realizing that would completely destroy one of the levers they use to defraud.

So it solves a problem, then? Its useful? Saying a problem would not be a problem if the universe was a little better is not particularly useful.

With a prevalence rate of < 2% (at least in Australia) this seems like an incredibly mathematically flawed take. Whilst a broad/blanket diagnosis isn't useful for making generalisations about individuals in that group, it's certainly societally useful.

All models are wrong, some are useful. Of course it has some utility, otherwise it would drop out of use on its own. The problem with big catchall symptom based diagnoses are what they drive focus towards and away from. I get that the scientific process has to start somewhere, by putting similar things in a bag, before it can tease out mechanisms and groupings. But when such simplistic models remain how doctors communicate with patients, it crowds out more nuanced understanding. Like even the word "spectrum", trying to add some depth to the pop culture model, is really just a fancy word for a single scalar.

I don’t disagree that pop culture has distilled spectrum down into a magnitude, but that isn’t how the DSM describes it or how professionals diagnose it (or in my experience how they communicate it). The metaphor is supposed to be like the light spectrum not “less autism ranging to more autism”. Severity scale is distinct to interacting traits of social issues and restricted interests and repetitive behaviors (the spectrum bit).

When I said single scalar, I was referencing the light spectrum - it is literally just less energy ranging to more energy (per photon). We just experience it so vibrantly as different colors (etc) because the difference between specific energies are quite important at the level of our existence. So unless there is a single underlying factor whose magnitude causes all of the different distinct traits of autism, it's a poor analogy.

Two beams of light of equal intensity and different frequency contain equal energy not differing amounts of energy.

The actual difference in frequency is the composition of that energy.

If of course you compare a dimmer beam of light with a brighter one the dimmer one will have less energy.

So no less energy is due to lower intensity light, not due to different frequency. You can pretty trivially have 5 flashlights each with a different color of light and all with the same energy.

Sure. The varying "composition" of that energy is what forms the spectrum - it's a single scalar. You're adding one more dimension of dim/bright, making the entire description be two scalars.

Look up the definition of "spectrum", and contrast with "gamut".

I disagree - I'm not adding an additional dimension. You're implicitly including the dimension of intensity without calling it out explicitly.

The only way that two different otherwise identical light sources can output different amounts of energy is if they have different intensity.

Or put differently, in your example if you have different wavelengths and hold intensity constant then energy is also constant. It's your example that has implicitly introduced the concept of intensity without explicitly saying so. And the evidence of that is my example. My example is exactly your example, but holding the intensity consistent between the two different light sources. If you do that, then your example fails.

Different wavelengths of light at the same intensity output the same energy. Meaning wavelength does not change the energy output by light.

Even though photons exist, light is fundamentally not a particle. Your statement would hold if light were a particle and only a particle and did not also have wavelike properties. And generally when discussing light as human perception it's the macro scale and wavelike behavior that is being discussed.

I was talking about the spectrum, not brightness or intensity. The spectrum represents a variation in just a single quantity - energy per photon, or wavelength if you prefer. The spectrum is orthogonal to brightness/intensity/power.

Your comment would probably be less confusing for non-physicists if you said frequency instead of energy (I know, E=hf).

Two meanings of the word spectrum are used in this discussion, definition quoted from wiktionary:

1. "A range; a continuous, infinite, one-dimensional set, possibly bounded by extremes." "Specifically, a range of colours representing light (electromagnetic radiation) of contiguous frequencies"

2. A plot of energy against frequency, e.g. "[t]he pattern of absorption or emission of radiation produced by a substance", or the output of a Fourier transform.

You were talking about the former, BoiledCabbage the latter.

---

I agree with you that the former makes a terrible analogy of autism; and to be honest I really don't see how the latter can be an analogy of autism.

> it crowds out more nuanced understanding. Like even the word "spectrum", trying to add some depth to the pop culture model, is really just a fancy word for a single scalar.

I just disagree with this take.

For people with autism, the broad criteria help to serve as guideposts for common experiences shared by those with autism. When doing treatment, everyone gets into the specifics of what autism means for the individual.

What you are complaining about is similar to someone complaining that cancer is too broad of a term. After all, the word cancer describes a spectrum of mutations and symptoms everywhere in the body.

How about for people "without autism" that have some of the characteristics (probably everyone), trying to examine their own mental workings (ideally more people) ?

How about for people with "mild autism" that have now been labeled by the medical system as being distinct from people "without autism", even though the main difference was merely passing some arbitrary threshold?

The difference with cancer is that cancer is an unequivocal negative. You can't be just "a little cancerous" and just embrace it. Whereas autism we're seemingly talking about variances in distinct components of what makes up intelligence. So setting some arbitrary threshold below which you're "fine" and above which you have a "problem" is really an artifact of the medical industry and larger economic system rather than actual mechanics.

I think a person is usually capable of figuring out whether some of their traits pose a "problem" in their life or not. And if they're not capable, you're probably able to figure out the answer to that question already without their involvement.

Healthy people usually don't try to find a diagnosis for their mental state.

I guess then my thought is that whether it's one disorder or 4 or any number perhaps is best understood as a statistical question.

For example, if a parent exhibit autism symptom X (e.g. trouble understanding emotions), are there kids more likely to inherit symptom X, or ANY autism symptom.

If X is uniquely heritable, then perhaps it's best as multiple disorders. But if X leads equally likely to X, Y, or Z then it's better understood as one disorder.

Because autism got a shit ton of research funding from scared parents a decade ago

Each seed may land in a unique place, being swept by the wind from the same tree.

So the normies have a way to explain weirdness and go on with their day.

A characteristic autistic trait is having a narrow and deep tunnel of attention.

Perhaps so narrow and deep that you're unable to learn language, because it requires a more holistic processing, and less focus on individual components.

Perhaps so narrow and deep that you're overwhelmed by sensation, processing every touch, sound, sight stimulus individually, leaving little energy to put everything together.

Or perhaps only so narrow and deep that you are extremely focused on math. Or collecting insects. Or memorizing train routes.

I don't know if this is an explanation. But it is extremely plausible for a wide variety of outcomes to be usefully categorized by a singular trait.

You may be interested in reading Wittgenstein on trying to define what a "game" is. In short he found that there are no conditions necessary or sufficient to make something a game. Nevertheless, games exist.

https://en.wikipedia.org/wiki/Family_resemblance

It’s amazing how much Wittgenstein anticipated. You can see here how his philosophy anticipated meaning as being fundamentally a probabilistic superposition of the relationships between words, with no fixed form, predicting today’s model architectures:

> for instance the kinds of number form a family in the same way. Why do we call something a "number"? Well, perhaps because it has a direct relationship with several things that have hitherto been called number; and this can be said to give it an indirect relationship to other things we call the same name. And we extend our concept of number as in spinning a thread we twist fibre on fibre. And the strength of the thread does not reside in the fact that some one fibre runs through its whole length, but in the overlapping of many fibres.

> Autism as a diagnostic classification is so broad that the non verbal are lumped in with those with rigidity behavior, when at least to me they seem like they should just have a different diagnosis.

As someone with a diagnosis, I've gotten into the habit of referring to myself as "on the spectrum" when discussing with people rather than using a specific term. It helps emphasize the fact that there's a range of potential manifestations, and (hopefully) helps remind people that their expectations based on past experience might not fit my behavior exactly.

To me the point of the phrase was to counter prejudice and gatekeeping. "You can't be autistic because I know another autistic person who does the opposite," is a sentiment that autistic people in my life have encountered. It doesn't extend to researchers because (arguably) researchers aren't in the business of telling people that because they are uncomfortable with behaviors associated with autism.

Four classes, to wit:

> We identified one class … referred to as Social/Behavioral … that demonstrated high scores (higher difficulties) across core autism categories of social/communication and restricted/repetitive behaviors, as well as disruptive behaviors, attention, and anxiety, and no reports of developmental delays

> A second class … called Mixed ASD with DD … shows more nuanced presentation within certain categories, with some features enriched and some depleted among the restricted/repetitive behavior, social/communication, and self-injury categories, and an overall strong enrichment of developmental delays

> The last two classes scored consistently lower (fewer difficulties) and consistently higher than other autistic children across all seven categories. These two classes were termed Moderate Challenges and Broadly Impacted, respectively.

sort of off topic, but does anyone else have the experience of consistently having bad interactions in real life any time autism is discussed? like the reasons are so varied but it's so consistently not great. i feel like it's rooted in a "i know autism better than you and i feel threatened anytime something is expressed that differs from my own opinion/experience with it". and sometimes people are offended with any opinion or anecdote or experience expressed on it at all in a "don't mansplain autism to me" sort of way (i'm not a man, just to be clear, and obv mansplaining isnt unique to men).

not saying this to be unkind or mean to anyone. it just feels like such a super touchy topic. i started completely not engaging in conversation around it at all and pretending like i don't know anything about it.

No. The greatest interaction I had was when a kid didn’t hold a door for me and his mom said “I’m sorry he has Asperger’s and it’s a little heavy on the ass.”

Then we ended up in the same waiting room for a while and she talked about accommodating her son and how they managed it. What was really interesting is the kid looked like it was the first time he heard his mom talk to someone else about it and him and I could tell he was embarrassed but really loving her that moment.

> it's a little heavy on the ass

I hadn't heard this idiom before so I looked it up and I couldn't find anything relevant. What does this phrase mean in this context?

The first syllable of Asperger sounds like “ass”, and the mom was making a pun based on that fact (pointing out that her son’s Asperger’s made him an ass).

Saying it out loud made it click. Thank you.

I see this but usually only when someone who has never saught a diagnosis or have any shared experiences keeps referring to their supposed autism in a community with a lot of autistic people who will backlash.

Never seen a discussion go bad _about_ it.

You’re probably going to think I’m very presumptuous but I’m going to say this anyway in case it is helpful for you.

If people are frequently offended when you speak on a topic you’re probably being offensive somehow through content or delivery.

In my experience the thought “[they] feel threatened anytime something is expressed that differs from […]” is not accurate and it also turns off your brain on trying to figure out what is actually going on. I can recommend from personal experience a small apology and transition to more listening in that moment. If more feels appropriate, giving it some time and space and re-engaging gently to discover what went on for them in that moment can yield a lot of value for both sides.

i appreciate the response, this is something i have already considered and i agree there could have been some element to my tone or delivery that contributes to their reaction, though i also don't necessarily claim responsibility for their reaction.

i agree the wording on my post you're replying to comes across the way you're describing. i have more nuanced thoughts about this but it's a lot to type, but will end by saying thank you for the kindly worded comment

The hardest part for me is understanding the difference between legitimate diagnoses and people who use it as a sort of veneer for antisocial behavior.

i mean the point of language is to communicate, saying "i have autism" is usually done to give context to someone's behavior or how to interact with them (though obviously autism is very different person to person). i think this is a tricky conversation because someone could argue the "stolen valor" of autism might cause issues when someone says they have autism, but doesn't, and then the person interacting with them uses it as a learning experience in how to interact with autistic people in the future. however i'm not really sure this holds up as a decent argument, because as it's said all the time and i said earlier, you can't make assumptions about how to interact best with any given person who has autism. you have to ask, "is there anything i can do to make you comfortable or help?", if it's appropriate to do so, and see what they in particular need.

Your two groups aren't mutually exclusionary.

It's possible to have a legitimate diagnosis and also to abuse that diagnosis to attempt to excuse anti-social behavior.

I point this out because at the end of the day a person's diagnosis is for them-- hopefully it helps them get the support they need to have a more successful life. For the rest of us we just need to deal with behavior we will or won't accept.

We should try to afford people some tolerance, diagnosis or not. But ultimately if someone is unwilling or unable to behave in an acceptable way then we won't continue interacting with them. This can happen via a venue rejecting misbehaving participants, or it can happen by behaving participants rejecting a venue that has failed to regulate the conduct of its other participants.

It is certainly one of several topics which really demand some caution to raise, such as religion, abortion, women's reproductive rights and the sexuality/gender debate, not to mention trigger warnings, campus DEI politics and academic freedom.

I am always abashed when I walk into this space and frequently resent it when I am led into it by others.

I like to imagine during the late 18th and early 19th century it was equally hard to have dispassionate discussions about slavery. In the 1920s alcoholism, and feminism. Since many years in many cultures homosexuality and according to Pierre telhard de Chardin almost always since we have looked back in time incest. I think he argued for a genetic component but perhaps not in as many words.

Consider the Rosenbergs, or David Irvine, or Sir Anthony Blunt, and how rancorous debate got. Or, F.R. Leavis and the academic career paths for professors of English at that time. I knew academics whose careers were ruined by being in the wrong department at the wrong time by that.

Or eugenics which until the Nazi rise to power was a tolerably normalised debate. Personally, I am glad we cast that into a different tone of voice but in context it might be indicative of like cases in times past.

My wife and I are on the spectrum hence we read up on it regularly. Especially when we were first diagnosed. Lately we read more on it given our kids are likely on the spectrum with our oldest being in a diagnosis trajectory.

One major thing which annoys me is when autism is being used as a curse-word. Such as 'no autism please' when looking for people to play with in an online game. The irony being this is possibly (non-diagnosed) high functioning autistic who don't want to play with low(er) functioning autistic. One thing to do in such a case is join and prove them wrong (that you are good enough) and then leave saying 'btw I am on the spectrum'. But it generally isn't worth the hassle. If someone uses such language, they're likely toxic, so I just avoid them. Plus, there is the ignore list. This works reasonably well. Though I also use this to ignore people whom I find under-performing.

But one thing which comes to mind is that even though I am on the spectrum it is simply untrue you are compatible with other people who are on the spectrum. For example, when I am under stress I make certain sounds (coping) which my wife finds super annoying. I also remember a guy being hardcore Christian and on the spectrum (he gets annoyed when I curse), while we are agnostic.

> One major thing which annoys me is when autism is being used as a curse-word. Such as 'no autism please' when looking for people to play with in an online game.

I wouldn't read that as a curse word. We always have to abbreviate when we communicate. One way to read "(no autism please)" is

"I've had negative experiences playing with people exhibiting behaviors that I think others (rightly or wrongly) understand as autism and/or I've complained to players about their conduct and received autism as an excuse/justification. I'm not currently feeling up to dealing with that-- maybe due to my own pathologies--, so if you think you might behave that way please find someone else who is feeling more tolerant."

And that's something we can sympathize with, even if sometimes feeling excluded can be disappointing, or knowing that someone might stereotype you might feel reductive and objectifying. But at the same time, no one is entitled to anyone elses time, and it's usually better that someone tells you their preferences rather than feeling those things and saying nothing.

How would you feel if they'd say 'no disabilities please'? Or if you are POC and they say 'no black people please'? You'd feel excluded for something you are; something you cannot change. It is flat out discrimination.

There's an easier variant for:

And it is: 'no toxicity please'. Because autistic or not, toxicity has no excuse. You will not get away with it hiding behind a(ny) disability when you receive a warning and/or ban. Nor would you being a POC allow you to be toxic.

just wanted to say i understand your perspective and i think maybe the GP is maybe not fully understanding it. "no autism please" is really unkind for the reasons you laid out

Your perspective is absolutely valid too.

But I also think that 'no toxicity' would actually fail to communicate the intended message. "No toxicity" is already usually the ground rules, unless you're talking about an expressly toxic venue. It's my experience that persons who exhibit obviously autistic behavior online do not recognize their conduct as toxic-- even when it is. I think they're more likely to recognize it as autistic.

Except for the most extreme forms I don't think it would even be correct to call it toxic. But conduct doesn't have to escalate to "toxic" to make a game unfun. E.g. some games are much more fun to play with people who are comfortable with improvisation and are not acting in a rule-bound rigid thinking way that is unwilling or unable to adopt alternative perspectives.

Perhaps if we brainstorm we could come up with an alternative term for sterotype high functioning autistic behavior that the "no autism please" person was probably thinking of which would be recognized as such by people who exhibit that behavior. I'm less confident however that whatever it is wouldn't still be offensive to you, or that even discussing it wouldn't be offensive to you because you appear to have adopted the diagnosis as part of your identity.

Whomever used that phrase was almost certainly referring to a collection of widely recognizable stereotyped behaviors rather than a diagnosis, those sterotypes are no doubt uncharitable and may not apply to any specific autistic person at any specific time. But that doesn't make the phrase ineffective for communicating their desires.

And maybe a clarification: "No autism please" is not "No autists please". The former, I think, refers to a collection of behaviors which anyone could exhibit, though people born a particular way may have more difficulty avoiding. I might have charitably read the latter as a poorly phrased version of the former, but I'd also be quicker to agree that at least as phrased it was more discriminatory.

> Or if you are POC and they say 'no black people please'? You'd feel excluded for something you are; something you cannot change. It is flat out discrimination.

Your example isn't equivalent. Being a POC isn't a different kind of mental structure that causes behavior which can make online playing unfun. It's not particularly relevant relative to its discriminatory power.

Imagine I was soliciting for people to play basketball and advertised "no midgets please". It stinks for short people that they get excluded form some games due to physical properties they were born with and can't control.

But when those properties are relevant to other people's enjoyment of the game, it's not discrimination-- it's just voluntary participants setting out the criteria under which they'll choose to play so that the game is fun for everyone.

And sterotype autistic behaviors are generally more controllable by someone with autism than say being short or having a particular skin tone is.

To be clear about my own perspectives: I would never write "no autists please" or even "no autism please"-- I would simply stop playing with strangers in any environment where that sort of conduct caused me to not have fun, at least when I didn't feel up to dealing with it.

But even though it's something I wouldn't do, I can have sympathy for those who did it.

> But one thing which comes to mind is that even though I am on the spectrum it is simply untrue you are compatible with other people who are on the spectrum.

the experiences i've heard from the people around me is that someone with neurodivergence is significantly less likely to be friends with someone else who also has it. im not making a generalization that this is commonly the case, it's just frequent feedback in my specific social circle

Yes because the diagnostic label is over broad to the point of meaninglessness and people have their own independently valid reasons for wanting autism to be interpreted as either a mild or severe disability because the diagnostic label is over broad to the point of meaninglessness.

Autism and "severe autism" in particular need to be addressed using totally different words.

I’m quite sick of all the studies that only talk about problems. If a side effect of some autistic conditions can mean an advantage their area of deep focus can this not also be celebrated ? Often even people with deep autism with associated problems achieve extraordinary things through their focus and persistence.

Otherwise all is presented is negative with no positive. I’d quite like to be seen also from the positive side when it’s present thank you.

I’m happy that I’m not neurotypical and please can’t they cancel trying to cure this. Sounds all too much like eugenics.

Try telling that to my neighbor whose kid constantly throws violent tantrums multiple times a week. It’s very unfortunate, it happened to some very nice people.

Autism is literally medically defined as a series of deficits, latest criteria = DSM-V-TR

https://www.reddit.com/r/aspergirls/comments/th9hku/dsm5tr_n...

The only positive thing said about autism in that entire gigantic write-up is "Special interests may be a source of pleasure and motivation and provide avenues for education and employment later in life"

Why would doctors treat autism as being anything but negative with no positive when Autism is literally defined in that way? Of course, people since Leo Kanner and Hans Aspergers noted Autistics having extraordinary abilities, and people are vaguely aware of this, but doctors hold autistics in worse contempt than the general population mostly because you can't bill insurance to treat a "difference" or get a study grant to research a "difference". So the system they're in forces them to treat autistics as contemptible and even in need of curing. Besides that, psychiatry is after all the study of mental illness and disorders, not of mental differences, so there's a bias just from training.

Legal, UN definition, trying to cure a mental disorder is not eugenics. It is logically the same idea as eugenics though, the UN just didn't outlaw this idea since the mentally disordered were considered sufficiently inferior. Autistics can also be banned from sperm banks.

There's nothing to be done really as a mere not neurotypical internet dweller. The inertia of the status quo is like a train and many people benefit from it. The only real choice you have is to call yourself something like "Not neurotypical" instead of "Autistic".

Because people with autism have often a very high IQ and also are often very talented in some things (while beeing bad at others).

This combination can be very useful for specialized taks. Like programming, math, research ...

> people with autism have often a very high IQ

I don’t think that’s necessarily true even if we only consider those with high-functioning autism (and the average is significantly lower if we include everyone).

Some people with autism have a very high IQ, just like some people who don’t have it.

e.g. https://pmc.ncbi.nlm.nih.gov/articles/PMC9058071/

Hierarchical clustering applied to brain scans. As a clustering output, it's useful to conceptualize but not definitive of what one can expect from behavior nor development. If I am not mistaken, this is the original paper.[0]

[0] https://www.nature.com/articles/s41593-023-01259-x

You are mistaken. The work described here is based on this paper, currently published as a preprint: https://www.medrxiv.org/content/10.1101/2024.08.15.24312078v...

This preprint is the first link in the article.

I’m sceptical of research based on a single diagnostic label - such research assumes that the boundary between that specific diagnosis, other diagnoses, and no diagnosis, is valid - while (at least some) research which tests that assumption rather than making it, by including cohorts with other diagnoses and also no diagnosis, ends up challenging that assumption - e.g. https://www.nature.com/articles/s41398-019-0631-2 - but if the challenge is correct, how much validity is there in research which relies on it?

As you should be. When we go spelunking for evidence of differences we're engaging in the reinforcement of social categories. When evidence of differences is found it becomes the justification for the category's existence. If that seems backwards and circular in logic, then you would be correct. The same interplay exists between sex and gender and well as a host of other categories.

It's important to note that models that use genome wide association analysis have demonstrated extremely high predictive value across large cohorts sharing geography but are very poor when applied on a geographically distinct population. This suggests that although autism has a strong association with genetics, neurophysiology unique to autism develops in the context of highly complex genetic associations that are likely subject genetic drift across population and time.

When we have a a few genes of interest that are important in screening for a rare disease we accept that novel variants will continue to be identified throughout the years as more people are screened. Autism as a prevalence of 1-3%. I don't remember the exact number but I think something like 30% of autism diagnoses are believed to be secondary to fairly severe but distinct genetic syndromes. So when we talk about a subgroup of autism without clear etiology we are looking at a fraction of 70% of 3% of the population. We're approaching rare disease territory when we talk about subgroups within autism. A rare disease with a highly complex genetic association across the genome that is subject to genetic drift is not a good candidate for genetic screening.

All that being said, studies like this may provide valuable insight into what microbiology is being influenced, even if we can't reliably predict which variants are responsible. Id love to see future investigations relate genetics to biomarkers instead of behavioral tests in autism.

> This suggests that although autism has a strong association with genetics, neurophysiology unique to autism develops in the context of highly complex genetic associations that are likely subject genetic drift across population and time.

Wouldn't it be more likely local culture and brain plasticity are the cause of these differences?

Autism can be reliably diagnosed at 2.5 years of age, so we probably aren't looking at a strong cultural bias in in how kids are presenting with autism. These models using data from countries where the healthcare systems provides support for appropriate screening and testing further minimizing bias due to culture. In other words, one would not expect these models to be overfit to phenotypically distinct representations of autism as a result of culture.

Variations in brain plasticity have been suspected of playing a role in autism for a long time. Brain plasticity may vary by region, throughout development, and at a molecular level. If population dependent variations in plasticity are indeed responsible for the lack of model generalizability, then the next step would be to do as I previously suggested. That is, identify where the many genome wide variations converge on biomarkers driving differences in plasticity.

> Autism can be reliably diagnosed at 2.5 years of age, so we probably aren't looking at a strong cultural bias in in how kids are presenting with autism. These models using data from countries where the healthcare systems provides support for appropriate screening and testing further minimizing bias due to culture.

I'm not talking about bias due to culture but culture having a real physical effect on development. It wouldn't be noticeable in toddlers but would in older children, if present.

> Brain plasticity may vary by region,

That was my point, that local culture can play a large role in shaping how autism can manifest.

> then the next step would be to do as I previously suggested. That is, identify where the many genome wide variations converge on biomarkers driving differences in plasticity.

I think it would make sense to evaluate adults from different cultures with same or similar autism types and compare and contrast their neurology.

Did GPT help you write this, or do you just happen to write in the same style, conditioned by having to write research literature in that style?

It's the latter plus typing on my phone while riding the bus.

Glad they're working away at this.

I've stopped identifying as autistic despite having a dx because I was tired of the way it got me treated worse by the general public who presume I'm far more incompetent than I actually am and medical practitioners who do the same. Last time I sought help for a totally unrelated issue they asked if I had any prior dx and I was foolishly honest so I was subsequently referred to a day program for unemployed people with severe mental health issues. I'm full time employed so I couldn't even attend. This is the outcome of treating "autistics" as a monolith.

After the DSM-IV they decided to consolidate 3 different autism spectrum diagnosis's into one. They said this was scientific, but IMHO, this was done so everybody with Aspergers or PDD-NOS to be eligible for the higher funding levels those categorised as "Autistic" got. Which has done nothing but take away funding from severely disabled people while causing more mildly impaired people to receive inappropriate and condescending treatment, I am fucking eligible for a full time day program where a social worker will be paid to chaperone me because I'm just so fucking needy that's just what needs to be done. This change was great for the psychiatrists through, who simply received more money as a result of making this diagnostic change, nice conflict of interest there.

As a society, we decided having certain labels of disability entitled you to special legal rights and certain financial benefits. Where I live any autism diagnosis, no matter how severe or mild, gets you a flat amount of money, whereas other diagnosis's even if the condition is more severe than autism get nothing. What do you think parents, who can shop around from a variety of private psychiatrists, looking to access therapy for their child that autistic kids also get do? So you might get a kid with ADHD or Anxiety or some speech disorder, and not getting an autism DX, but getting treated like a moderately impaired autistic.

I honestly loathe, absolutely loathe the status quo of autism diagnosis and treatment and am happy for any change to be made that splits the diagnosis up because it creates at least a hope of "Severe autism" receiving higher funding levels than the rest, and "autism light" starting to get similar funding levels to other disabilities so there isn't a perverse incentive. I have not made an online comment on any website in 1 month but this inspired me.

This may be spicy, but I wonder if autism has a higher rate of occurrence in upper middle class homes which is why it has got so much more attention and funding than more serious illnesses as you say.

It seems to me that we’ve always had many people both on the spectrum and with ADHD, but our modern society has such stiff norms that the people who are the most involved with society sees these otherwise often fairly benign variations as diseases to be medicated away.

Schools herd children through something so rigid that a lot of people are told they’re problematic, lazy, stupid, or insufficient in one of millions of ways. And then that continues into adulthood with work and, in a context familiar to many around this site, frameworks for how work should be done. People talk about estimates, and working in bursts or worrying about something your professionalism tells you is important but your boss tells you to ignore become a problem to fix. Finding a level in the hierarchy and a pace that works well for you and being content there is lacking ambition and being lazy.

I guess when a society is sick, its members are diagnosed.

Counterpoint: https://www.youtube.com/watch?v=dntgFIzNKrc First Reference to ADHD Found to be in 1753 by Kloekhof. ADHD has been observed since pre-modern times.

Autism on the other hand is a modern condition, but I don't think there's really much dispute there's SOMETHING there because you see things like savants who are just inexplicable.

However, the rate at which we're diagnosing people today is totally unprecedented. The DSM and ICD-11 are also more like medical dictionaries than rigorously scientific reflections of underlying biological reality. They describe what Autism and ADHD are, but the categorisation is largely based on convention, clinical convenience, and a desire to fit a certain nosology rather than actual science. I've been looking into the alternative frameworks like RDOC and HITOP.

Anyways we're diagnosing people a lot more often nowadays, increasing the patient population, but still acting like research done on a much smaller patient population still holes up. Adaptive Behaviour Analysis therapy for instance is still insured in the United States based on research from the 90s when the average autistic child was very different than an average 2024 autistic child (not to say there hasn't been more research since than), and generally I see money and entrenched laws and bureaucratic guidelines and incentives as creating a sort of system which has no evidence of helping anybody which coincidentally results in a lot more money changing hands and more people getting government money.

Anyways I think the current system we have where we pretend that it's useful to say that Elon Musk and some guy who smashes his head into the wall until it bleeds to self-stimulate have the same disability strains credulity.

In Norway (with a completely different system of public health funding), children of immigrants have several times higher chance of being diagnosed as autistic. Results were "adjusted for parents' education and income". I have no idea how to interpret this. (Hopefully diagnoses didn't involve testing immigrant children on their command of the Norwegian language.)

https://www.nrk.no/norge/barn-av-innvandrere-far-oftere-auti... https://pubmed.ncbi.nlm.nih.gov/36609392/

Throwaway, speaking from personal experience. I will note up front that none of what follows should be read as advocating a value judgement (I have certainly failed to conceal my own biases, regardless).

Lower middle and working class families lack the knowledge and financial resources necessary to obtain diagnoses, if they should feel it worthwhile. In working class families especially, autism and ADHD traits are either vilified as gross character defects or minimized as typical immaturity, with some variation with respect to gender role. In any case, diagnosis is less likely. In middle class families, where expectations of social function and independence are different, the same behaviors are treated very differently.

25 years later, we’ve made zero progress. Sure, we have a broader floor of science and study created from 25 years of additional science. Its pretty simple, and we knew it then - until there are biologic markers and testing, we will not be able to bifuricate the phenotypes. Certainly we can chase this statistically - as Troanskaya et al. have done, and there is certainly validity to the statistical work and it contributes overall.

But it doesn’t get to the core of the problem we face in continuing to use such a wildly broad and subjective diagnosis tool. Its no wonder those society has labeled neurodiverse are so upset - we’re throwing treatment modalities which are clearly not appropriate.

We’ve known how - the problem needs directed science, not academic science. But Academia is resisting. Government is resisting. Frankly - science and professions are resisting. When founding the Mind Institute at UC Davis - Parents tried to convince academics to go this route. They even raised unheard of amounts of money. And were routinely ignored by the system.

And here we are 25 years later. Best guess remains there are 5 to 7 major phenotypes - without even getting into the issues of severity. We haven’t even adequately surveyed the symptomology so we can correlated it to demographics, much less actual biological markers.

We’re chasing the wrong things b/c no one is interested in doing the hard work to carve this problem into digestible and replicable. We need directed research to carve this problem up. There is an indisputable issue in the DX count going from 1:10000 to 1:50 - in our life times. Its not better diagnosis.

Has anyone tried working with the datasets they relied on?

I spend no time considering genetic variations, or genetic correlations, I deal with what's in front of me. This study is _almost_ backcasting; it might improve the model, but, not the outcome.

Maybe the study is fine and valuable, and maybe it'll lead to something. Maybe? But, it does nothing in the present. Not in the here and now.

If we can find specific subtypes it would be extremely helpful. You can’t expect everything to be presented only with a complete solution.

Exactly, lumping in all autism into the same overall category when there could be very different underlying biological mechanisms would potentially block progress.

For example, a medication that could work wonders on one subtype by affecting a biological mechanism unique to that subtype could be found not to meet clinical standards because it didn't work on the other subtypes or even make them worse.

In other words, it's a confounding variable which needs to be discovered and characterized after which it could play significant role in advancing treatments and understanding.

That is a fair point, or two. My frustration with studies of this type is that they provide very little guidance with respect to how to prevent a condition, how to fix a condition, or how to manage a condition. Nor, do they give me much hope that even a long way down the road will they do so. My focus, because of a family situation, is management. Whether there's one type, four types, or more than a thousand types is, to me, immaterial. Even if this study was a complete genetic explanation of the mechanism, it wouldn't help, because I don't work with genes, I work with gene expressions, manifestations and symptoms.

Reply on news.ycombinator.com