I think there's a communication issue with regards to how a syndrome is portrayed in non-technical media. And it doesn't get any better when we replace "syndrome" with "condition" or "spectrum disorder" or what have you. A syndrome is just a description of what a black box looks like to us from the outside. We collect different outward expressions (symptoms) and give some sort of statistical baseline - e.g. a certain collection of symptoms clusters together in 70% of cases. In the case of psychological/neurological syndromes - our most poorly understood black boxes - we then create tests which are effectively subjective surveys, aggrandized Turing Tests. And to complete the picture, we also try to cluster with regard to treatment - assuming that if X modality treats Y cases well, those Y cases are all of the same syndrome.

All this is to say that while there might be one "source insult" that creates most of what we cluster as Autism, it is extremely unlikely. There are probably multiple different insults that create multiple conditions that we crudely cluster under the same Autistic umbrella. It is useless to try and define what is the "true" Autism - we need to understand the underlying mechanism first - maybe then we can give whatever we do understand better its own name.

As to why we are quick to label, I'll just say that in my country, as a child psychiatrist put it to me - before the mid-90s parents were angry with him when he made the autistic diagnosis, a trend that was then abruptly reversed and parents started to demand he label their neurodivergent kids autistic, even if he didn't find the diagnosis to be accurate. What changed? The country started to give disability benefits to parents with autistic children.

Two thoughts on "quick to label":

1) One big change is the recognition that Autism, regardless of particular definition, responds to therapeutic attempts much more effectively in early childhood, rather than later.

2) Much of the effective work is around "functioning" -- if you can't speak, well, an "autism" diagnosis is going to change what's attempted in response, but the goal is still going to be to get a kid to be able to speak. That's much easier when a child is still 2 or 3.

> Because I don't buy this narrative from the article or in medical research that there are two kinds of autism.

I'd like to preface this by saying I don't feel strongly about the naming issue in either direction.

Initially I figured the authors were using the word "Autism" as used in DSM-5, where it's a blanket term for a range of conditions. But, their repeated assertion of "two types" of autism doesn't line up with that theory: DSM-5 defines three levels, not two.

They definitely aren't using the DSM-IV definition of Autism (the stricter definition that you prefer), and they also aren't following the taxonomy laid out in DSM-5. Where did their definition of Autism come from?

Was it implied that their two-level model was derived from the results of their tests? If so, I missed that part. They mention a correlation between brain overgrowth and severity of symptoms, but they don't mention a clear separation in the test data that would justify classification into two distinct groups.

I understand that DSM isn't gospel, but if they're going to make up their own taxonomy, they should provide some rationale for it.

Do you think it could be LLM-generated content in regards to two versus three?

Hardly, the study it self refers to which subtypes they are talking about in the conclusion:

> the biological bases of two subtypes of ASD social and brain development—profound autism and mild autism.

The Methodology section actually specifies they are using DSM-V (sic) and “Mann–Whitney U to test ASD clinical subtype differences in symptom severity” as well as that they test for IQ. They also specify which instruments they used to test symptom severity, neither of which actually measures subtypes of autism.

This is highly confusing as DSM-5 does not have any subtypes of autism. It has 3 severity levels for two of the symptoms criteria which is used to specify the accommodation needs. Those symptoms criteria is social communication and repetitive and fixated behavior. Intellectual ability is not on this severity level, instead psychiatrists are instructed to specify whether or not autism is accompanied with intellectual impairment. Further if you look at their table 1[1] you can see what they mean by the two subtypes, which is basically, low IQ vs. normal IQ.

This is actually much closer to ICD-11 where one of the 8 subtype of autism is 6A02.0 - without disorder of intellectual development and with mild or not impairment of functional language. So it looks like the authors used DSM-5 to diagnose autism, and then used the philosophy behind ICD-11 amend the DSM-5 diagnosis. Note that the ICD-11 approach has been heavily criticized as researchers have shown pretty thoroughly that there is hardly any correlation between intellectual ability (or IQ) and other symptoms of autism. That is the only reason to specify intellectual impairment at all is so that autistic individuals with intellectual impairment need additional accommodations for their disabilities.

I suspect what happened here is that the reason they specified these two supposed sub-types of autism is political. That they basically took what used to be called Asperger’s and said that was one of two subtypes of autism.

1: https://molecularautism.biomedcentral.com/articles/10.1186/s...

Thank you for this, extremely appreciative of it.

> narrative from the article or in medical research that there are two kinds of autism. In my opinion, there's only one, and that one has SEVERE conditions

I'm not sure that's a narrative? In fact quite the opposite, currently anything from the 'different kind of brain wiring' you mention through to the 'SEVERE conditions' that you acknowledge as autism are all seen as varying aspects and varying degrees of the same underlying difference. Once you get more acquainted with the less dramatic forms of autism there are significant commonalities.

That said, however well-founded the reasons for merging Asperger's Syndrome with the umbrella Autism Spectrum Disorder, I do feel we've lost some nuance in the process. There definitely seems to be a qualitative difference between "person who's a bit different and struggles with some aspects of life, but may be exceptional in others" and "person who's severely impaired and will never be able to navigate life on their own (even if exceptional in others)." Having shorthand terms to identify the two independently was useful.

I fully agree. The amount of people that have “minor” autism and get upset at people looking for a cure is huge, for instance.

For them they’re just a little bit different, and they wouldn’t want to be someone else. They don’t realize there are people like my cousin that needs to live in a group home because he’s almost non-verbal.

> The amount of people that have “minor” autism and get upset at people looking for a cure is huge, for instance.

Yeah, it reminds me of that X-Men meme with Rogue talking about a cure and Storm saying there's nothing to cure because it's not a disease. "I'd take a cure" thinks the nonverbal kid with severe everything who needs 24/7 care. "Shut up, we're perf" says the girl who's the world expert on diffractometry but doesn't always pick up social cues.

I tend to liken the term ASD to saying 'lower limb impairment disorder'. Did I stub my toe? Is one leg off at the knee? Was I born with no legs at all? Who knows, it's just LLID! What are you meant to do with that information? No idea.

I really think in a lot of ways it'd help to have a couple of smaller buckets inside the giant bucket that is ASD.

> I really think in a lot of ways it'd help to have a couple of smaller buckets inside the giant bucket that is ASD.

The reason we don't is because it's not possible. Every time someone tries to make a high / medium / low-functioning distinction, some PhD gymnast running three companies and a dog shelter who can't reliably feed herself has a weeks-long non-verbal episode after she wore the wrong colours to an investor meeting, and completely ruins their categorisation system thereby.

If there's one thing all autistic people have in common, it's not being well-described by the paradigms according to which you want to bucket them.

That's not to say there aren't apparent subtypes of autism, just as there are apparent subtypes of allism. But they're hard to pin down, and they're not really useful for what you want to use them for: there are people in each of them who live happy, fulfilled lives, and who struggle to function on a daily basis – and who could be described by both of those clauses, for that matter.

I think this is a really good way to put it. It feels like there's a rush to label and self-diagnose which ultimately results in a ton of pathologization of relatively normal behaviors. That is: "normal" as in we expect to see some diversity of behavior. Maybe less labeling would lead to more acceptance and understanding, which seems after all to be one of the goals...

Judging by how things go at my kids' school, it's quite the opposite. I and several of my friends have neurodivergent kids. The kids are quite open about it at school, and generally don't pathologize it at all. It's a huge difference from the traumatic childhood I experienced, where I was undiagnosed and also openly bullied for being a little bit weird.

If I may get a bit direct, if you believe that the move toward classifying some things as spectrum disorders, and neurodiversity in general, is about pathologizing the range of human behavior, I'd encourage you to spend some more time looking into it.

"I had a childhood health complication that was somewhat similar to this, therefore I am very well suited to comment on something that affected a relative that is not in my immediate family."

I have a son who is on the spectrum, he is often assumed to be neuro-typical by people he doesn't spend a lot of time with. He is "high functioning", but is still vastly different to his peers with issues that I don't think anyone would categorise as "severe", but the impact on him emotionally and our family unit as a whole is severe and pervasive.

To be clear, I am not offended or upset, I just feel that you need to be made aware that you are deeply ignorant on a topic that is only a blip in your world.

We have a son, nearly five now, who matches this description. He has, in my amateur opinion, severe sensory processing issues. He is extremely highly strung, prone to meltdowns at the drop of a hat, has trouble regulating, focusing, and so on. He is only young, so it all may change, but he is behind in micro and gross motor skills, behind in writing because of this, and is almost impossible to help because any time he senses a hint that he isn't perfect he shuts down, eventually with a meltdown if pressed. A meltdown for him involves spinning around on the floor, hitting himself over and over. He calms himself by going into a dark space and sucking on a comforter.

And yet, in social environments, if he is kept stimulated and has a lot of positive attention, you would never guess at this other side and we feel that people look at us strangely when we mention how hard our family life is. The ironic thing is I'm sitting in my home office right now and I can hear him having a meltdown outside as my wife is trying to keep him entertained.

It causes huge issues for us, and we've been having a difficult time keeping things together as a family. My wife and my relationship has suffered a lot.

PS. We have another son, two years old, who is just a typical child. Challenging at times, but otherwise fine. So it's not like we did anything different.

> any time he senses a hint that he isn't perfect he shuts down, eventually with a meltdown if pressed

This is almost certainly not what is going on inside his head. I can't tell, from your description, what is happening – if you're not being deliberately vague, that suggests that if nothing changes with your schema, you're probably not going to learn what's going on until he figures it out himself, and then figures out how to tell you in terms you'll understand. That might take years.

I doubt it has very much to do with what you see as "him being perfect": that might be the way you conceptualise the pattern, but (except to the extent he's learned this concept from you) I doubt he's thinking anything remotely similar. It is more likely to be https://www.autism.org.uk/advice-and-guidance/topics/behavio... – but however good this description may be, this is not how it feels from the inside, aged 5. Likely any labels or schema you attempt to apply to this from the outside will be intensely distressing, and the perception (e.g. from your body language, or even just a routine expectation) that you're exhibiting judgement might be enough to tip a shutdown over into a meltdown. So… don't do that. (If this is a factor, what "don't do that" entails is beyond me, and probably beyond your son. It's perhaps not beyond you-plus-trial-and-error, and it's perhaps not beyond a child psychologist.)

If this is what's going on (and remember, this is just a guess), then… basically, you haven't a snowball's chance in hell of manipulating him out of it. You're going to have to be understanding, and you're going to have to be honest. Example: if he were refusing to eat / reluctant to eat / shut down over the prospect of eating, you would have to say something like "I don't want you to starve, but you don't have to eat this right now.", or "You can eat something else, if you make sure you're eating lots of different things, and make sure this food isn't wasted.", or whatever your actual requirements are, put in terms he can understand, with options available but not constraining. (If you couldn't do this honestly, you'd have to find some other approach. I cannot stress how important the honesty is: play-acted, exaggerated emotional responses are fine, so long as they're real. Five years old is old enough to see through it.) The details obviously depend, so I don't know how helpful this is.

You're using the usual words, so I expect you're already aware; but, in case you're not, consider the advice in https://www.autism.org.uk/advice-and-guidance/topics/behavio..., especially “identifying the causes” and “sensory considerations”. Be aware that social considerations might be significant (see above… I wrote this all out of order).

I suggest you seek professional help from a child psychologist, specialising in autism. The job of a child psychologist is to figure out what's going on with your child, and explain it: their job's to be a best-effort interpreter so you don't have to wait a decade until your son can invent a complete theory of psychology with which to explain things to you himself.

(Do not go to anyone who promises, or suggests, behavioural modification – especially not if they mention ABA. This will not help your son. (If they're framing some non-coercive play-like activity as giving him tools, teaching him to recognise his feelings, or something like that, it's probably fine – not at all what I'm suggesting in the previous paragraph, but if you've found someone safe, he might find that useful for other reasons. See https://www.autism.org.uk/advice-and-guidance/topics/positiv... for more information. (Stay away from Autism Speaks: they have a lot of webpages about this, but to a first approximation, they're a hate group.)))

> He calms himself by going into a dark space and sucking on a comforter.

Yeah, that points to sensory processing issues, but it sounds like he's already pretty good at self-regulating. That's something to work from. You'll know better than I, but you might be able to involve him in the process of working out what his needs are. If you do, that means you mustn't talk over his head about it. (So: don't listen to what he says, think of an idea, then immediately turn and tell somebody else about it. Not saying you have to involve him in everything, or that everything that happens should be something he understands, but make an actual effort and an obvious one.)

Involving him is probably just making sure he knows there's a puzzle, and he's best at finding the clues, and he can tell you the clues (or his guesses) whenever he wants to: I don't know whether interrogation would yield any results.