[zug_zug]

Note: The title set off all my alarm bells for some kind of ragebait piece, but the title is ironic - this is actually a painfully thoughtful 1-hour exploration of the topic from a philosophical/political angle.

I really liked the beginning but personally am firmly convinced that autism is a serious biological problem/phenomenon that can only be understood by hard-science. It's true that like other disorders (depression, anxiety) it manifests in a wide variety of symptoms, but for sake of illustration if you ate a bunch of lead (causing a strictly biological problem) it'd likely manifest in a whole host of different ways among different people (one might be withdrawn, another might be violent).

Frankly if we're seriously concerned about understanding whether autism is growing, we should develop software-administered questionnaires and take annual samples, you'd only need 2,000 people a year to have a very significant sample.

[maxbond]

I'm under the impression people who have autism take issue with pathologizing it and calling it a "problem" or "illness," and want to be accepted as people who are simply different. The people I know with autism diagnosis are just people, they aren't ill. They might interact with you in a way that feels overly blunt and awkward - but when you understand that's a problem of mismatched expectations, similar to interacting with someone from a different culture who unintentionally comes off as rude, it stops being a problem.

I've been told I'm probably autistic (no formal diagnosis, no interest in pursuing one, I don't really see how that would benefit me and my therapist isn't really interested either) and certainly am neurodivergent in a variety of ways, and when it causes me problems it's usually because I'm a round peg which society wants to shove into a square hole. Not because there is something inherently wrong with me.

[temp-word-hose]

I do not have autism or ADHD, but a significant number of people in my family do* such that the behaviours popularly believed to be associated with autistic people are the cultural norm in my family, it took me a few years, and many missteps to adjust to the wider cultural norms, and even now after decades as a functional neurotypical, there is a joy, and a sense of slipping back into speaking my mother tongue when I find myself in conversation with someone who speaks and acts with the patterns of my childhood. When for example, last week - an 11 year old was barely able to meet my gaze begins arguing a strongly articulated position on the nature of mosquito consciousness or my work colleague who cannot bare turning on his webcam, leaps straight into a discussion of the relative merits of different data structures.

*in my close family - two women - both formally diagnosed as autistic, and at least 4 men among the family elders who trained as mathematicians or engineers are assumed by other family members to be on the autism spectrum, but I am not privy to any formal medical diagnosis.

[zug_zug]

Don't mean to offend -- my intent there with the slash is to convey that I give each individual the right to independently label it as a problem if they feel it is, or to label it as a mere phenomenon if they feel it isn't.

[maxbond]

Gotcha. To be clear I don't take offense, I just thought it was worth pointing out.

I do see what you were going for there, but it is sort of undone when you seem to compare it to eating lead immediately after. I understand you weren't intending to do that, you never draw a direct comparison, but the juxtaposition seems to imply it. The lead thing was what tipped the scale and made me decide to write a comment, I was on the fence about it.

[faeriechangling]

>I'm under the impression people who have autism take issue with pathologizing it and calling it a "problem" or "illness," and want to be accepted as people who are simply different.

If you're talking on Hacker news, this is correct, don't pathologize autism or you are condescending to and infantilising your peers. It is obvious autism played into the success of many in this field, treating autistics as if they simply have an illness is unfair.

This is CONTEXT DEPEDENT though. If you're talking to a mother of an 8 year old who is having problems with their child damaging their brain by smashing their head on the wall repeatedly to self-stimulate, and they say to you "I wish we could cure this disease of autism", that's when you go with the flow.

[atlas_hugged]

Context dependent indeed!

My nephew and I both have it.

I just seem like a weird guy to the average person, and sometimes people will even get offended if I mention that I’m autistic.

My nephew, on the other hand, is what people think of when they think of autism: Arm flapping, making stimming noises/hums, echolalia, etc.

And boy do I just adore that kid.

His sense of humor is one of a kind.

Anyway… I wish there were subcategories like there are for Depression or ADHD.

People getting mad at me for misunderstandings gets old.

[faeriechangling]

There are "levels", but people ignore them. The status quo is that everybody gets put in one bucket called "Autism" regardless of if they're unable to live independently or are multi-billionaires like Elon Musk.

That is not socially useful.

[faeriechangling]

>I really liked the beginning but personally am firmly convinced that autism is a serious biological problem/phenomenon that can only be understood by hard-science.

Autism is a sociopolitical concept which transcends science where anybody considered sufficiently impaired is deemed "Autistic" regardless of the underlying scientific cause of that impairment. Consequently, Autism is really multiple independent medical issues with overlapping symptoms all hiding in a big trench coat. It is hopelessly entangled with a ton of societal baggage and is not and most likely will never be a hard science concept.

>Frankly if we're seriously concerned about understanding whether autism is growing, we should develop software-administered questionnaires and take annual samples, you'd only need 2,000 people a year to have a very significant sample.

We have plenty of sampling to test autism incidence.

[zug_zug]

Hard disagree. Currently in the US the CDC puts incidence of Autism at 1/36, a number that has changed significantly every year for the last 30 years. There is no longer a scientific consensus that the rate is not changing because we have little incidence data that is judged by in a consistent manner over decades

[faeriechangling]

I mean, I understand that, yet I just see that as more evidence that Autism sociopolitical concept rather than a scientific one since we seem to keep changing our opinion of what Autism is. I see the incidence data as reflecting changes in the sociopolitical environment, and only being loosely connected to any actual population-wide biological changes.

I don't think you're ever going to objectively measure how much "Autism" as a scientific biological concept is in the population because again, Autism is a bunch of separate conditions wearing a trench coat. If you ever measured it scientifically and objectively, it would risk people losing their diagnosis and the would be unacceptable. You simply can't objectively measure a subjective concept.

More likely when we start measuring thing scientifically and independently we will start testing for the conditions in the trenchcoat rather than for "Autism" itself.

[LargeTomato]

I'm interested in understanding why you think autism is sociopolitical and not knowable through science. You state this many times as fact.

The term "autism" may be an umbrella term that defines multiple conditions. I don't know that to be true but it might be. If that is the case, then it seems likely because we simply don't understand autism well enough to categorize it further, not because autism is unknowable from a scientific or medical perspective. It may be an umbrella term today but so many concepts in science start out as flawed and are refined over time as we build our understanding.

[faeriechangling]

I think if we set out to understand "Autism" itself we will get hopelessly confused. My complaints are part of a more general complaint with the DSM-V rather than Autism specifically. I'm not hung-up on trying to understand what we call "Autism" scientifically, I'm more interested in addressing the symptoms people have.

Here's a paper on the subject, which promotes RDOC instead https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5154554/

"it has become increasingly evident that many central features of the DSM-ICD model do not map adequately onto the state of nature (Sanislow et al., 2010). The high levels of covariation among putatively distinct categories, the large number of intermediate cases, and the substantial phenotypic and etiological heterogeneity of numerous diagnostic categories, among other vexing anomalies, suggest that something is deeply awry with at least some core presuppositions underpinning the neo-Kraepelian model of psychiatric classification. Moreover, these problems have proven stubbornly resistant to repeated efforts at amelioration across multiple DSM and ICD revisions. The shortcomings of the DSM-ICD edifice therefore appear to reflect an inherent deficiency in its architectural floorplan that cannot be fixed merely by adjusting some of its walls."

"During his tenure as NIMH director, Steven Hyman expressed his concern at seeing preclinical researchers attempting to develop animal models that would mimic DSM-based diagnostic criteria. As Hyman put it “The DSM system…created an unintended epistemic prison that was palpably impeding scientific progress…Even animal studies that purported to develop disease models…were often judged by how closely they approximated DSM disorders.”"

Autism incidence as you brought up went from 1 in 10,000 to 1 in 30. If Autism diagnosis has NEVER been stable, isn't that a red flag that there's something going wrong at a conceptual level?

When you see the richest man in the world and some of the most disabled people in society diagnosed with the same condition, isn't that odd?

Why do Autistic people say "If you know one person with autism you know one person with autism" and seem to emphasise the heterogeneity of the condition? Why is there so much overlap with other conditions like ADHD, OCD, and Anxiety? Why do people diagnosed with comorbid conditions not seem to act like people with each condition independently?

Things like we're seeing with TikTok autism is examples of the reification of Autism and Autism presenting itself more as a social contagion than a neurological disorder.

[zug_zug]

So I understand the complaint that perhaps there's evidence that things currently classified as autism might be genetically or otherwise differentiable.

However to my mind that simply strengthens the need to have some sort of computerized system for measuring population samples. Removing human subjectivity from the equation will only give us more hard data to identify exactly what correlates with what.

Moreover I think somewhere in your logic you're making this assumption that autism rates can't be going up by a factor of 10+. I think there's no reason to assume that, we've seen other biological conditions (some even covariate with autism such as allergies) increase and let's just take nearsightedness as an example that has grown more than 10x.

In essence, I think it's entirely plausible that autism rates have gone up and tiktok merely happens to be informing people who have very mild symptoms of what's happening -- and to prove or disprove that hypothesis we'd want tests not administered by a biased human.