7 ms·

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

35 points by iscream26 3y ago

zug_zug 3y 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 https://en.wikipedia.org/wiki/Simon_Baron-Cohen
- art-not 3y ago
  What a thoughtful comment. Thank you for providing a valuable perspective that made me question how I view some things.
- maxbond 3y 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.
  - fragmede 3y 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.
    - maxbond 3y ago
      I don't know anyone that doesn't have something going on some of the time. Consider that a multimodal distribution in a high dimensional space doesn't really have a center, or has many centers, depending on how you want to look at it. It seems unlikely to me that the geometry would be simple. To strip out the math metaphor in case it's unhelpful, there is no single way to be a normal or typical person, there are many ways. At first approximation you could think of them as being different archetypes (that metaphor ultimately suffers the same problem that I'm describing with "neurotypical", but just to illustrate). They aren't better or worse, just different. The problem isn't that someone is one type or another, but that the differences lead to confusion and miscommunication. > given that there are people with one testicle and other people with one ovary, the average is probably less than one for both. What do you think would happen if we rounded fractional values, given we're talking about something quantized?
      - fragmede 3y ago
        you must know people that have less going in those dimensions than others. a friend that never loses their keys, or a friend that's always on time. they don't have to have utterly uneventful and unremarkable lives to be neurotypical, but some people just have less trouble with things than others. Or, you don't have any one who is neurotypical in your life, which is why you question the word. which is entirely valid as well. as far as the average: I'm just saying the average person has more like .9 ovaries and .9 testicles.
        maxbond 3y ago
        I don't live in a reality where people have 1.8 gonads, I live in a reality where people an integer >= 0 number of gonads (which may be more or less than the mode of 2), so I feel like we're not quite speaking the same language and aren't quite understanding each other. How many times do you have to forget your keys to be neurodivergent? If you lived most of your life always remembering your keys, but when you entered your 40s you started to experience some pretty radical shifts in your personality, and as a result you start forgetting your keys - are you neurodivergent now? Were you always? Similarly, what if you keep forgetting your keys, and you have a lot more trouble at it than other people, but over time you develop systems and skills that work for you. Did you stop being neurodivergent?
  - coldtea 3y 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_hugged 3y 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.
  - faeriechangling 3y 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.
    - atlas_hugged 3y ago
      Oh yeah! That part of his research, especially, just screamed out of touch with reality.
    - coldtea 3y ago
      It aged quite well, it's just the name that didn't age well, because in 2024 you can't say males have more of X trait and women have more Y trait for political reasons.
      - faeriechangling 3y ago
        That certainly plays into the unpopularity of the concept, but even independent of that, this doesn't address the central criticism that autistics seem to be more likely to be MtF transgender. We know that MtF transgender people that the brains of transgender women resemble the brains of cisgender women, than the rains of cisgender men resemble the brains of cisgender men.[1] Transgender women have extremely androgynous brains, not extreme male brains. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8955456/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8955456/ Generally, if you rephrase the concept as the "Emphasising-Systemising theory of autism" it becomes a lot less implausible. "Extreme maleness" implies being more male across the board to an extreme, and that does not appear to be the case with autistics, they might have a few male-coded traits but they're not extremely male.
- faeriechangling 3y 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.
- faeriechangling 3y 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 3y ago
  Simon is Sacha's cousin (according to Wikipedia).
- coldtea 3y 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_zug 3y 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.
    - coldtea 3y ago
      >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) Those are just the easiest to spot and measure outward symptoms. Not that relevant for giving some imaginary finegrained "autism score", just to diagnose. Internal symptoms, the important ones, like sensory issues, social adaptability issues, routine issues, emotional regulation issues, and so on, are not quantifiable like that, and those are the ones that actually matter. But whether external or internal, the symptoms don't neatly fall on some specific range for a single individual, but vary with age, external conditions, factors like stress, sensory triggers, environment, emotional state, masking, and so on. There's no "this person stims about X% with some specific interval" measurent" (or whatever other symtom you want). And thus there's non measurable "autism percentage within this 0-100" (whether on a linear scale or in some higher dimentional space).
notso411 3y ago
[dead]
zug_zug 3y 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.
- maxbond 3y 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_zug 3y 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.
    - 3y ago
slowhand09 3y ago
[flagged]
faeriechangling 3y 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.
aaron695 3y ago
[dead]
reify 3y 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.

35 points by iscream26 3y 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 https://en.wikipedia.org/wiki/Simon_Baron-Cohen

art-not 3y ago
What a thoughtful comment. Thank you for providing a valuable perspective that made me question how I view some things.
maxbond 3y 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.
- fragmede 3y 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.
  - maxbond 3y ago
    I don't know anyone that doesn't have something going on some of the time. Consider that a multimodal distribution in a high dimensional space doesn't really have a center, or has many centers, depending on how you want to look at it. It seems unlikely to me that the geometry would be simple. To strip out the math metaphor in case it's unhelpful, there is no single way to be a normal or typical person, there are many ways. At first approximation you could think of them as being different archetypes (that metaphor ultimately suffers the same problem that I'm describing with "neurotypical", but just to illustrate). They aren't better or worse, just different. The problem isn't that someone is one type or another, but that the differences lead to confusion and miscommunication. > given that there are people with one testicle and other people with one ovary, the average is probably less than one for both. What do you think would happen if we rounded fractional values, given we're talking about something quantized?
    - fragmede 3y ago
      you must know people that have less going in those dimensions than others. a friend that never loses their keys, or a friend that's always on time. they don't have to have utterly uneventful and unremarkable lives to be neurotypical, but some people just have less trouble with things than others. Or, you don't have any one who is neurotypical in your life, which is why you question the word. which is entirely valid as well. as far as the average: I'm just saying the average person has more like .9 ovaries and .9 testicles.
      - maxbond 3y ago
        I don't live in a reality where people have 1.8 gonads, I live in a reality where people an integer >= 0 number of gonads (which may be more or less than the mode of 2), so I feel like we're not quite speaking the same language and aren't quite understanding each other. How many times do you have to forget your keys to be neurodivergent? If you lived most of your life always remembering your keys, but when you entered your 40s you started to experience some pretty radical shifts in your personality, and as a result you start forgetting your keys - are you neurodivergent now? Were you always? Similarly, what if you keep forgetting your keys, and you have a lot more trouble at it than other people, but over time you develop systems and skills that work for you. Did you stop being neurodivergent?
- coldtea 3y 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_hugged 3y 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.
- faeriechangling 3y 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.
  - atlas_hugged 3y ago
    Oh yeah! That part of his research, especially, just screamed out of touch with reality.
  - coldtea 3y ago
    It aged quite well, it's just the name that didn't age well, because in 2024 you can't say males have more of X trait and women have more Y trait for political reasons.
    - faeriechangling 3y ago
      That certainly plays into the unpopularity of the concept, but even independent of that, this doesn't address the central criticism that autistics seem to be more likely to be MtF transgender. We know that MtF transgender people that the brains of transgender women resemble the brains of cisgender women, than the rains of cisgender men resemble the brains of cisgender men.[1] Transgender women have extremely androgynous brains, not extreme male brains. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8955456/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8955456/ Generally, if you rephrase the concept as the "Emphasising-Systemising theory of autism" it becomes a lot less implausible. "Extreme maleness" implies being more male across the board to an extreme, and that does not appear to be the case with autistics, they might have a few male-coded traits but they're not extremely male.
faeriechangling 3y 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.
faeriechangling 3y 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 3y ago
Simon is Sacha's cousin (according to Wikipedia).
coldtea 3y 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_zug 3y 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.
  - coldtea 3y ago
    >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) Those are just the easiest to spot and measure outward symptoms. Not that relevant for giving some imaginary finegrained "autism score", just to diagnose. Internal symptoms, the important ones, like sensory issues, social adaptability issues, routine issues, emotional regulation issues, and so on, are not quantifiable like that, and those are the ones that actually matter. But whether external or internal, the symptoms don't neatly fall on some specific range for a single individual, but vary with age, external conditions, factors like stress, sensory triggers, environment, emotional state, masking, and so on. There's no "this person stims about X% with some specific interval" measurent" (or whatever other symtom you want). And thus there's non measurable "autism percentage within this 0-100" (whether on a linear scale or in some higher dimentional space).

notso411 3y ago

[dead]

zug_zug 3y 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.

maxbond 3y 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_zug 3y 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.
  - 3y ago

slowhand09 3y ago

[flagged]

faeriechangling 3y 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.

aaron695 3y ago

[dead]

reify 3y 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.