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> while others, including parents of children with severe autism, complained that he trivialized the real problems of a real disability.

As a former autism researcher I empathize with these parents. The cohort I worked with, considered mild Autism 20 years ago (now probably considered "severe") had unmistakable psychological impairments. They were not just quirky, or socially awkward, and certainly not giving highly articulate TED talks, or campaigning on twitter for NIH 'normies' to cancel genetic research on Autism.

I don't question there exists a spectrum of asocial phenotypes, with some neurocorrelate. But it's been a great disservice to individuals with Autism 'proper' to be grouped (even if just by name) in a spectrum with folks with such mild issues.

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> But it's been a great disservice to individuals with Autism 'proper' to be grouped (even if just by name) in a spectrum with folks with such mild issues.

I feel like we need to both group and separate.

We need to group because everyone across the spectrum has things in common, and a lot of the accommodations that "mild" and "severe" autistics need be similar (for example, needing quiet spaces), and we shouldn't dismiss these needs in those with "mild" autism because they're coping with things better than others. I feel like we also shouldn't dismiss how helpful the insight gained from autistics who are more easily able to communicate might be in determining appropriate care for those who are less able to communicate.

We need to separate because some autistics have needs that others don't. And it is of course important that we recognise that and give the more disabling impairments the extra attention they deserve.

I agree with you in general. I think over time fields that are "fuzzy" with definitions, like psychology, will hopefully add additional layers of specificity to a number of neuro diseases/ailments/conditions. In the end if you took any condition out of the DSM each human probably falls some where along a spectrum for each one and the ultimate combination is what makes us "us" as individuals.

I could certainly see autism be rated on a 1-10 scale of severity to provide additional clarity or each one of those ten points on the gradient receiving a new diagnostic name. Going further we could probably have a broader scale that includes severe autism on one side and severe empathy on the other. The empathetic traits aren't as well studied even though being severely empathetic can also have a host of social challenges.

Please don't consider autism as opposite to empathy. Autistic individuals are often highly empathetic. It's just that they don't express it in the same way as neurotypical people and it can get lost in translation.

I feel this too. People have different needs. I had an ex who despaired at the idea of marrying me because she didn’t want kids with autism. To me, I’m fine, my kids would be fine, and I don’t want any stigma or to be seen as defective. I just want the same respect anyone else gets, and an ounce of understanding. Other people, however, really struggle, either themselves or to help someone close to them. They don’t want their situation trivialized, and need effective help. Striking this balance will take a mindful culture, and the field can help much in guiding that, along with the other benefits they bring with research and interventions and such.

> We need to group because everyone across the spectrum has things in common

Do they really? One of the articles on here recently was about how Autism is this gigantic smorgasbord of often very different symptoms and that every Autism disgnosis pulls from a different palette of symptoms.

That sounds a lot like psychologists decided to call "Not Neurotypical" (however you define that) as "Autism" and then dumped everything into the category.

> That sounds a lot like psychologists decided to call "Not Neurotypical" (however you define that) as "Autism" and then dumped everything into the category.

"Neurodiverse" includes a lot more conditions, such as ADHD, developmental speech disorders, dyslexia, dysgraphia, dyspraxia, dyscalculia, dysnomia, intellectual disability, Tourette syndrome, schizophrenia, bipolar disorder, schizoaffective disorder, and antisocial personality disorder.

See https://en.wikipedia.org/w/index.php?title=Neurodiversity&ol...

These things are not mutually exclusive. There are people who can speak articulately and campaign on Twitter some days, and have disabling meltdowns and total inability to manage life on other days.

Like many things, the truth is probably somewhere in the middle: I have no doubt that there are also a lot of people who have taken one dubious questionnaire and self-diagnosed as autistic, and I also empathize with the parents of autistic children who seem light-years apart from autistic folk who can at least live mostly independently. I don't know what the future of autism research and funding needs to look like, but it feels like there still needs to be further change.

> These things are not mutually exclusive. There are people who can speak articulately and campaign on Twitter some days, and have disabling meltdowns and total inability to manage life on other days.

That describes 90% of the population. The group of kids I worked with I'm sure have never used twitter. My main qualm is with the anti-research advocacy. Those that are advocating against basic research seem worried about losing their autism 'affiliation'. More research means scientists working towards defining physiological underpinnings, which would lead to more scientific diagnosis criteria (e.g. genomic markers, fMRI/DRI markers, etc.). And if they are found to not have those characteristics, well, what does that mean for them? Does it mean their issues aren't real? Of course not. But it certainly doesn't make sense to call them Autistic. Their disorder should be coined a different name.

> have disabling meltdowns and total inability to manage life on other days. > That describes 90% of the population.

It most definitely does not. I used to think it did too because it's my normal. But it turns out that most people manage to get on with life just fine on a consistent basis. Perhaps you have children in mind? But this applies to adults too.

> More research means scientists working towards defining physiological underpinnings, which would lead to more scientific diagnosis criteria (e.g. genomic markers, fMRI/DRI markers, etc.). And if they are found to not have those characteristics, well, what does that mean for them? Does it mean their issues aren't real? Of course not. But it certainly doesn't make sense to call them Autistic. Their disorder should be coined a different name.

I'm definitely in agreement with you that more research is called for and should be encouraged as much as possible.

My strong suspicion is that "mild" and "severe" autism (and quite possibly related conditions like ADHD) will turn out to have to have a common physiological basis. I guess this belief (as lacking in evidence as we are at this point) is partly why I think it does make sense to classify everyone under the label "Autism".

Yes - agree here.

Father to two Autistic children, both of whom are high functioning, attend mainstream school, excel etc.

The sheer burnout my son faces after dealing with social events is palpable - masking utterly drains him.

If someone labels cats and dogs and sheep and goats and a bunch of other animals as "dogs" just because they want to be called dogs, and feed those labeled samples into a classifier for training, when given novel samples of species, the pretrained classifier will recognize ("diagnose") anything on 4 legs as a dog. I imagine the same will happen if we compile a genotype database that includes dna from everyone on the "spectrum" (i.e. the "case" dataset will be highly polluted with control samples, which will no doubt turn up null results).

Don't get me wrong, I take your point. It's just that whatever is underpinning severe autism is subtle, and was already going to be difficult to tease out. Now I feel like it's perhaps impossible.

Case/control is not the only kind of analysis you can do here. You could define a numerical scale describing someone's degree of "autistic-ness" and train a classifier on that instead of a binary categorization, for example. Obviously there are challenges in doing so, just as there are with the binary case. But if a continuous scale turns out to be a better match for the underlying phenomenon, then obviously it's worth modeling in that way.

> the "case" dataset will be highly polluted with control samples, which will no doubt turn up null results

You seem to be assuming the answer to the research here. It's true that polluting the "case" dataset with control samples will make it hard to find patterns/results. But polluting the control dataset with "case" samples causes exactly the same problem.

I would suggest that we'll need lots of studies with different groupings

> a bunch of other animals as "dogs" just because they want to be called dogs

I am not suggesting that we consider people autistic because they want to be autistic. I am suggesting that a lot of the people with "mild" autism seem to have very similar symptoms and subjective experiences to those with "severe" autism (even though it presents very differently). And that it is not at all obvious that the underlying cause is different.

The analogy I would use is that of a noise in the environment. Suppose there is a high pitched whining noise, but it's fairly quiet. That would likely be annoying, but wouldn't majorly affect you. Now suppose the it's louder, akin to a loud concert. That would probably be ok for a while or some of the time, but after a while it would start to get to you and might make you irritable or more tired. Now suppose the noise was really loud, like standing next to a jet engine loud. This would be utterly intolerable and completely debilitating. The cause of the problem in each of these cases is similar, the difference is just the degree of loudness.

And different profiles of Autism could well be similar, having a similar underlying cause despite wildly different presentations. Given that there is evidence that one of the main aspects of Autism is differences in sensory processing this analogy might even be quite literal.

There is some meta humor here about the classifier not understanding absurdism.

> Their disorder should be coined a different name.

But I guess part of the concern may be that they’ll be told there’s no disorder at all. Which could be liberating and empowering for some people, but potentially deeply invalidating for others.

I'll give my devils advocate statement. As a background, I was not diagnosed until I was in my early 30s. That was after years of bouncing from doctor to doctor, every one before that giving a different diagnosis with a treatment that didn't work. None of the previous doctors even touched on ASD/ADHD.

> And if they are found to not have those characteristics, well, what does that mean for them? Does it mean their issues aren't real? Of course not.

No, but I think the fear for some, is the question of "Well WTF happens then?" Diagnosis and treatment of comorbidities (ADHD + social anxiety) let me go from being in a dead end hourly job to a person who has a moderately successful career, has been able to make impactful contributions to open source, and be able to mostly function as an adult.

I'm not against research, but if there is a different thing going on with some people I don't want to see them forgotten.

Do you have some examples of your kind of "anti-research advocacy"? Because the concerns I see are nothing like that. What I see is people being concerned about people wanting to "end autism" when a lot of people diagnosed as autism are not interested in being ended.

Which I think is a valid complaint. There's an endemic fetishization of "normal" that ends up causing a lot of harm [1], ranging from a lot of unnecessary abuse to medicalization [2] of deviance to outright eugenics. I could well believe that a lot of researchers and a lot of research are tainted with that. And I think it's ultimately the job of researchers to both make sure they're not part of it and be clear that they aren't.

[1] described about pilots and cockpits here: https://www.thestar.com/news/insight/2016/01/16/when-us-air-...

[2] https://wiki.ubc.ca/The_Process_of_Medicalization_of_Devianc...

This is exactly the redefinition and recentering process that infuriates me as the parent of a severely autistic child. The "autism" that people are self-advocating against ending and which dominates media discourse is a world of difference away from the totally disabling condition my daughter has. Yet the connotations of the term "autism" have been hijacked away from her by media attention focused on large numbers of high-functioning and self-diagnosed people agitating for their own agenda.

Yes, a lot of neuroatypicals are perfectly happy with their current situations -- as long as they receive accommodations at school and at work and online based on their diagnosis. Their _medical_ diagnosis. I am not for a minute trying to advocate that they be forced to take treatments they don't want. What I do object to, strenuously, is the diversion of resources away from severely impaired people who can barely communicate, let alone advocate for themselves online.

These people _do_ have a true medical condition, are suffering, and have the right to the support of the medical and research community just as much as the less impaired group has the right to forego that support.

You write this in a tone of extreme contradiction. But I don't think I actually said anything that you are contradicting. Did you mean to reply somewhere else?

> I have no doubt that there are also a lot of people who have taken one dubious questionnaire and self-diagnosed as autistic

Not to drop names, but sounds like El$n Mu$k.

As someone with close bonds with people diagnosed with "real" high-functioning autism, it is quite horrible to see random people (Mu$k claiming himself so[1], or mainstream newspapers attaching Asperger's to figures like Putin) being mislabeled as so for visibility, or because AS individuals have acquired this myth of being cool, quirky geniuses in popular culture.

Truth be told (correct me if I am wrong), the most common high-functioning autism symptoms are also present in other syndromes (especially the social ones), and even in neurotypical people, that (as should be obvious) without a proper assessment, such quick speculations or self-assessment are usually garbage.

[1] https://www.inc.com/minda-zetlin/elon-musk-aspergers-self-te..., ironic how the article starts suggesting readers to do an autism self-test

My understanding is that autism is much more complex than "mild"/"severe". I know an autistic with a high-powered career who requires a full time minder because otherwise random shit will happen like frequent skin infections from not keeping hygiene. I know another autistic who can't hold a job but keeps her home in order and is fairly well organized and articulate.

I feel like this is an unintended consequence that the neurodivergent crowd overlooks.

Those most able to advocate for social justice towards (and de-medicalization of) autism are going to be the highest functioning and most socially astute autistic people. The most ‘privileged’ and able to lead comfortable lives.

Making the medical model of autism taboo is going to really negatively impact parents of the severely autistic kids who need constant supervision and access to medical professionals who take the condition seriously.

This is exactly correct. I suspect the next move is going to be to give the original Kanner syndrome autism a new name, as the terms "autism" and "autistic" are increasingly appropriated into a social identity group rather than a medical diagnosis.

What campaign to end genetic research into Autism? I must have missed it. Personally, as someone with hEDS, I wish there was more genetic research into it.

Edit: found it, End Spectrum 10K. There seems to be a concern with negative eugenic screening which I kind of get. My ‘touch of autism’ seems to be a bit of a career advantage but I do worry about the possibility of having a more severely afflicted child. I think more good than harm will come from these studies.

A lot of autistic people (including me) see this as eugenics - the idea of genetic research is to prevent autistic people from being born, not to improve the lives of autistic people.

The gene mutations are going to be found eventually while searching for other things, so at best it’s delaying the inevitable.

By identifying the gene mutations it can make treatments much easier to find as you can often see which exomes are effected and thus which proteins may be missing. Could give rise to an effective peptide treatment similar to an insulin injection.

The knowledge may be inevitable, but the eugenics isn't. It's perfectly plausible that as a society we are not ready for knowledge yet. Look, for example at the plague of sex-selective abortion: https://en.wikipedia.org/wiki/Sex-selective_abortion

It's perfectly possible that knowledge of and tests for, say, genes related to homosexuality would currently result in a huge eugenics campaign in many places. The same could well be true of all sorts of cognitive "deviance", which could be not only a moral horror, but cause long-term damage to the fate of the species.

Imho eugenics is already inevitable. It can confer too great of an advantage and the technology is already eminently accessible. People already do it on the small scale with discretionary abortions for various genetic defects. Going from that to pre selecting IVF embryo candidates is a minor detail of a relatively small amount of money. It can also be done in secret so it’s perfect for a black market. And there is a first mover advantage so maintaining an anti-eugenic cartel would be impossible in the long term.

I do agree that it could result in the nightmare scenario.

Will some number of people do it on a black market? Possibly! But I think that's worlds away from broadly accepted eugenics for non-dangerous characteristics. So I think eugenics is only inevitable in the same sense that slavery is inevitable: we may not be able to eliminate it totally, but we can certainly keep it very much to the margins.

I don't think the taboo of eugenics has any particular durability to it. I think it'll flip rather quickly. You'll get places like Eastern Europe, Russia, and China doing it and all of a sudden we'll have to do it to in order to 'remain competitive'.

Weaponizing drones was taboo for about a nanosecond, now we can look forward to a future WWIII with flying robots raining down death from above, all because it was more convenient at the time.

That one taboo falls quickly is not proof all of them will. The eugenics taboo has endured for more than a century, which sounds like particular durability to me.

I don't know how to not be too blunt but we already do it with down syndrome and others we can detect. It's not called eugenics because they the word has a bad meaning but essentially this is what it is.

Oh, I am quite aware that eugenics is already a thing we do. That doesn't make it right, and it certainly doesn't mean it's something we should be looking to expand.

One might note that down syndrome individuals are often quite happy, and can make others around them quite happy as well. They just don't succeed under capitalism - they can't really work, and because caretaking is not financially compensated, they greatly reduce someone else's ability to work. In a more collectivist society, caring for them would be quite straightforward.

Eugenics based on who can be "productive" takes you directly to Nazi territory, do not pass Go, do not collect $200. Once you've accepted it, the only question left (assuming we can get "accurate" predictions) is where you draw the line: autistic? deformed limb? mentally ill? criminal? gay? short? black?

And I realize this is a slippery slope argument, but slippery slope arguments are particularly compelling in cases where there is direct historical precedent. Mass sterilization to reduce "undesirable" populations has been done by law in the United States. From there, coerced or even forced abortion is just an improvement in technology.

Will you please go into more detail about the people you worked with, and how they presented? What sorts of deficits and behaviors did you see in the "mild" cases?

I realize it made sense scientifically to merge autism and Asperger’s, but socially it was a terrible thing.

My severely autistic cousin killed their family dog with a knife when he was a teenager because it jumped on him and got him dirty. He’ll never be able to live on his own and his mother’s two divorces were in large part due to his existence.

Mild autistic quirks may make life a little harder, but the impact is absolutely nothing like that.

A non-trivial part of the reason is that Asperger's is named for the Nazi doctor whose research was focused on drawing a line between "functional" autistics, and autistics who should be put to death.

> My severely autistic cousin killed their family dog with a knife when he was a teenager because it jumped on him and got him dirty.

This would seem to indicate a comorbidity; lethal violence is not a typical trait for autistic people, regardless of situation.

They maybe should have renamed it then.

He's severely mentally deficient and as far as I know has never been violent other than that incident. He picked up weight lifting a few years after that, which was pretty scary combined with what he'd done.

In your expertise, What separates the asociality that comes with mild/high functioning autism from that which comes from a coping mechanism for an unhappy childhood of someone who would otherwise be "normal"?

The distinction is subtle but I would say physiology vs. psychology. The former (probably) manifests from genomic, epigenetic, or early developmental biochem conditions; the latter arises from experience (e.g. manifests from stored explicit or implicit memories).

Whether that matters is a different discussion. One area it might is treatment (for those who want it). If two similar disorders have wholly different etiologies, there is a good chance that a treatment that works well for one won't work at all for the other.

> One area it might is treatment (for those who want it). If two similar disorders have wholly different etiologies, there is a good chance that a treatment that works well for one won't work at all for the other.

Which is a prelude to my second set of questions:

How do you determine which is which in a diagnostic setting, where one normally has an n of 1 as an information provider?

How do you determine the need or kind of treatment and whether such treatment is truly effective or little more than a band-aid for what would be complicated sociological issues?

In what way does real or perceived agency (or lack thereof) have a part to play in asociality in relation to in-born or apparent autism itself and by what measure?

I don't know what you mean by n=1. If someone goes to the hospital to get treatment for a rash, the doctor has methods to determine if the rash is from poison ivy, or an allergic reaction, or a burn, or eczema, even if those rashes all look visually similar, even with an N=1 patient. Because we have established diagnostic lab tests to assay for certain biomarkers.

If your question is, how can we currently do this with Autism, the answer is, we cant. Yet. That is the whole point of performing basic research to understand the underlying etiology. If we stop doing this research, we'll never find out.

Wrt. your second question, a lot of medications are simply "bandaids", and that is indeed a problem. Adderall doesn't cure ADHD, Zoloft doesn't cure depression, Levodopa doesn't cure Parkinson's. They are acceptable for now because they offer some relief from the symptoms, but do nothing to fix underlying problem.

So for a concrete example Levodopa is given to both Parkinson's and Huntington's disease patients. However if we get to the point where we can reverse Huntington's disease using CRISPR to edit the trinucleotide repeat issue, should we expect this same method to work with Parkinsons patients just because the two disorders have similar symptoms? Absolutely not. Parkinsons has nothing to do with trinucleotide repeats. Which is good to know, so we don't attempt a highly invasive treatment on people who we know for a fact won't benefit from it (and may likely do more harm than good on them).

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