TikTok Gave Me Autism: The Politics of Self Diagnosis (2023) [video]

https://www.youtube.com/watch?v=x4ieMzbXiRA

by iscream26 • 2 years ago

35 40 2 years ago

zug_zug6• 2 years ago

Well the nature of autism being a "spectrum disorder" (per the DSM, the officialest psychology book) inherently means that there will be people who are 1%, 2%, 5%, 50% autistic. So boolean labels/diagnoses don't really apply very well in all cases.

I think that fact doesn't sit well with some people and that's worth exploring. Perhaps wanting bucket people to be "neurotypical" or "neurodivergent" (rather than on a normal distribution) may reflect an underlying desire to have an ingroup or outgrop, for example.

Interestingly Simon Baron-Cohen (Yes, Borat's Brother!) proposed the theory that a ton of intelligent people in professional fields and/or academia called "systemizers" carry a slight predisposition toward autism and mate with each other [1]. I haven't followed up how well his theories have held up in the last 5 years.

1 - https://en.wikipedia.org/wiki/Simon_Baron-Cohen

art-not• 2 years ago

What a thoughtful comment. Thank you for providing a valuable perspective that made me question how I view some things.

maxbond6• 2 years ago

"Neurotypical" always rubs me the wrong way, because I feel I've never met this person with a typical mind and I'm not sure they exist. I prefer to think of it as a distribution over a very high dimensional space, where the autism spectrum would be one dimension among many. I saw someone make a comment the other day about the average person having "one ovary and one testicle," which is crude but illustrates the point well.

fragmede4• 2 years ago

Maybe not typical, but you must know somebody who doesn't suffer from ADHD levels of distraction or an inability to cope with sensory input from autism. like you said, it's a distribution and it's important to recognize that there exist people that trend towards the typical end of the spectrum and aren't severely afflicted by mental illnesses the way some people are.

given that there are people with one testicle and other people with one ovary, the average is probably less than one for both.

coldtea4• 2 years ago

"Neurotypical" always rubs me the wrong way, because I feel I've never met this person with a typical mind and I'm not sure they exist.

The variation of "traits over a very high dimensional space" doesn't really prevent the distinction.

"A distribution over a very high dimensional space" can still have clustered groups on one side of the high dimentional space vs the other side, based on a set of X traits.

And neurotypicals are clustered away from neurodivergent people of various types, on the relevant traits.

(Plus, of course, traits that are equally variable within both groups are neutral as far as the classification is concerned).

atlas_hugged3• 2 years ago

Enticing theory, but doesn’t seem to have held up, even mentioned in that wiki a little. There seems to be lots of criticism of his work. It’s not wholly bad I don’t think, but probably too simplistic.

But I’m just a random.

faeriechangling11• 2 years ago

The "Extreme male brain" theory aged like milk, that autistics have more "male" brains than the rest of the population. Years after that theory we saw extremely high incidence of MtF transgenderism among autistics. Living as a woman doesn't really seem like an extreme male brained thing to do.

faeriechangling11• 2 years ago

If you think of things from a political lens, "autistics" being an exclusive group makes sense, so as to not dilute support for those autistics.

faeriechangling11• 2 years ago

The website the "Institute for the Study of the Neurologically Typical" existed back in the 90s. Back in those days, it just meant "not on the autism spectrum". People parodied how other people acted to express pride in themselves and of course mock the weakness of others, so as to prove they are the best.

Autistics have been using "Neurotypical" to describe the out-group for decades and won't stop anytime soon. It serves a social purpose due to social failures elsewhere that cause autistics to be rather stigmatised.

dh5• 2 years ago

Simon is Sacha's cousin (according to Wikipedia).

coldtea4• 2 years ago

Well the nature of autism being a "spectrum disorder" (per the DSM, the officialest psychology book) inherently means that there will be people who are 1%, 2%, 5%, 50% autistic.

Not exactly how "spectrum" works. It's about the variation of type and severity, not merely the variation of severity.

And there's no 1% or 50% autistic per the DSM. It's just autistic (or non-autistic), and autistic comes at 3 levels, which is not 33% 66% and 100% autistic, but autistic with low, mid, and high support needs.

If you're diagnosed as autistic you're not 5% autistic or 30% autistic, you're autistic, period. Your support needs just vary (and the 3 levels is a crude, but "good enough", breakdown for policy decision making).

zug_zug6• 2 years ago

Sure the DSM isn’t capable of assigning a % but that’s just a practical simplification it makes. There are over 100 genes strongly linked to autism and many other correlates. There are obviously people in the world who stim every minute, some every hour, some once a day, some once a week, etc. All of these symptoms fall on a range (be it eye contact). Often with these cases a sibling has a more severe case.

zug_zug6• 2 years ago

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.

maxbond6• 2 years ago

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.

zug_zug6• 2 years ago

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.

temp-word-hose• 2 years ago

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.

faeriechangling11• 2 years ago

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.

faeriechangling11• 2 years ago

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_zug6• 2 years ago

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

faeriechangling11• 2 years ago

The amount of autistic people there are each year has changed every year autism has been diagnosed. Every year it has been observed that when you controlled for SES autism wasn't diagnosed more often in any racial group, but when you diagnosed in the real world you would see diagnosis being socioeconomically stratified (And consequently racially stratified). Psychiatrists also charge THOUSANDS OF DOLLARS for a diagnosis, and of course, the incentive is to not piss off the customer. Since things are so expensive, re-diagnosis is not very common, except when somebody gets told they AREN'T autistic. Psychiatrists regularly say batshit things about what they believe autism diagnosis means and it gets posted on the internet.

All of this has made me a self-diagnosis accelerationist because I don't actually like loose labels like autism conceptually.

TikTok Autism somewhat transcends normal self-diagnosis politics this because the medium is the message, and in the case of TikTok autism, autism often means wearing headphones and "stimming". There is a lot of performative autism which I have never seen millennial autistics do my entire life.

reify• 2 years ago

Similarly in the world of Attachment disorders

In the book: Understanding attachment and attachment disorders: Theory, evidence and practice by Vivain Prior and Danya Glaser.

The authors point out the amount of incoherent, disingenuous and basically fake disagnosis around Attachment disorders making the rounds on the internet.

In 2006 there were 4,990.000 items on the famous search engine referring to the diagnosis of attachment disorders. Apparently the abundance of usage of the term "Attachment disorder dignosis" is not matched by the abundance of understanding as to what it actually means.

Children with "Attachment disorder diganosis" are described as; Liars, thieves, lacking in conscience, and having various other negative attributes.

There seems to be a licence to produce limitless items to characterise this apparent entity:

here is a small list:

1. avoids making eye contact, especially parents but look into your eyes when lying. 2. ask persistent nonsense questions and chatters incessantly. 3. Is fascinated with fire, blood, gore, weapons and evil. 4. engages in food related issues, hording, gorging, refusing to eat and eating strange things 5. Displays cruenty to animals. 6. dosplays no conscience, shows complete lack of remorse.

clearly none of this is true or suppported by any evidence that I have seen in 25 years as a psychotherapist.

TikTok Gave Me Autism: The Politics of Self Diagnosis (2023) [video]

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