7 ms·

I had such a hard time researching autism after someone mentioned it might apply to me because I found most articles to be very stigmatizing. A lot of language

I had such a hard time researching autism after someone mentioned it might apply to me because I found most articles to be very stigmatizing. A lot of language like "ASD is a developmental disorder that impairs a person's ability to communicate" etc. Looking for actual examples now, I am seeing more nuanced language (eg "People with ASD may respond differently to the world"), but the stigmatizing language I previously found really put me off of it for a long time. Slowly I have embraced my differences as somehow on the spectrum, but I still sort of have this feeling of "different people are different" and I question whether pathologizing differences is that useful. Though I do hear people who say that diagnosis was helpful to them.

s1gnp0st 3y ago
Yep, I think it's a useful phenotype, not a disease unless the degree to which the otherwise useful traits manifest causes one to struggle to live a happy life.
- skissane 3y ago
  > Yep, I think it's a useful phenotype, not a disease unless the degree to which the otherwise useful traits manifest causes one to struggle to live a happy life. Yes, it is important to distinguish phenotypes from disorders. If one has the phenotype, but isn’t impaired by it to a clinically significant degree, one does not have the disorder (ASD), but one does have the broad autism phenotype (BAP; aka the broader autism phenotype or subclinical ASD). [0] The number of people who have the phenotype without the disorder is likely several times those having the disorder. The broad phenotype is particularly common among close blood relatives (parents/siblings/children) of those with the disorder. It is also has an elevated prevalence among STEM professionals. I think it is unfortunate there is not greater public awareness of BAP and its distinction from ASD. Probably many of the people who describe themselves as “on the spectrum” in a colloquial sense have BAP not ASD. [0] strictly speaking, one can speak of a narrow autism phenotype (phenotype with the clinical disorder) and a broad(er) autism phenotype (phenotype without the clinical disorder), which together make up the autism/ASD phenotype as a whole. Given the distinction between the two is clinical, it is possible in theory for the exact same phenotype to be broad for one person and narrow for another - one person might be in a less supportive environment which produces clinical impairment, the other in a more supportive environment in which impairment remains at a subclinical level - impairment arises through phenotype-environment interaction, it is not always inherent to the phenotype in itself
  - lcnPylGDnU4H9OF 3y ago
    > BAP Thanks! I will remember the categorization. It’s certainly useful to distinguish between a person who needs a full-time caretaker and one who can hold a full-time job where the only categoric similarity is “they think more like each other than not”. I’ll try not to use ASD for myself anymore.
    - Fnoord 3y ago
      Fuck BAP and all these people with ASD who don't have it severe and end up being in denial, proposing masking and "getting over it" and other tough boy talk. If you got diagnosed with ASD, you have ASD and there are tons of false negatives out there (undiagnosed people) as well as those claiming they're true positive (in reality undiagnosed, they may very well have ASD in some form, or not). It is also possible you have misdiagnosed false positives. Psychopaths, for example, could very well benefit from such. I know I am not the latter. I know I have empathy, and when I don't, it is likely because of overstimulation otherwise. I recognize this in my children as well. My mother's late best friend (geez, typing this makes me realize how much I miss her) who was different in life as status quo in a way irrelevant to this discussion described my kids when tbey were very young as "friendly". A simple thing to say, but her observation was so aptly sound, I shluld remind myself about it more often next temper tantrums.
      - skissane 3y ago
        > Fuck BAP and all these people with ASD who don't have it severe and end up being in denial, proposing masking and "getting over it" and other tough boy talk. BAP is a construct developed by researchers, see e.g. https://pubmed.ncbi.nlm.nih.gov/30995078/ https://pubmed.ncbi.nlm.nih.gov/30995078/ – we can debate its value as a scientific theory, but all this stuff about "being in denial" is irrelevant to its scientific status. > If you got diagnosed with ASD, you have ASD There's this MIT PhD thesis I really like, Phech Colatat's Essays in the sociology of autism diagnosis. https://dspace.mit.edu/handle/1721.1/90070 https://dspace.mit.edu/handle/1721.1/90070 In the first half of his thesis, Colatat looked at three specialist clinics in the US, all run by Kaiser Permanente (which in his thesis he refers to by the pseudonym "Allied Health") – management was already aware that three clinics had significantly different diagnosis rates, but those differences were being ascribed to patient characteristics and referral patterns. Based on statistical analysis of medical records, Colatat argues that neither of those explanations actually work, and instead the real explanation is differences in the professional culture of each clinic – an explanation he backs up by considering the organisational history of the clinics, and the different diagnostic philosophies which influenced their respective founders. He concludes that approximately one-third of the outcome of an autism diagnosis in those clinics is determined by the culture of the clinician – and he notes that, despite these significant differences in clinical culture, they were all specialist clinics which put great emphasis on diagnostic rigour, and many diagnoses are done in generalist clinics with significantly less rigour, so it is entirely possible the cultural contribution might turn out to be even bigger if one brought those diagnoses into the analysis. So, one third (maybe even more) of the time, whether you have ASD depends, not on you, but on which clinician you see.
faeriechangling 3y ago
> had such a hard time researching autism after someone mentioned it might apply to me because I found most articles to be very stigmatizing. > I question whether pathologizing differences is that useful. Homosexuality was first referred to as a "Sexual Deviation" and a "Sociopathic personality disturbance". It's no longer considered a disorder. Transgenderism (Transsexualism) was referred to as a "psychosexual disorder" or "gender identity disorder". It's no longer considered a disorder but gender dysphoria still is. Autism is still a disorder, and nothing but a disorder. Autism is defined medically, wholly by weakness, as if that's all autism is. Something we should maybe cure one day, or come up with a pre-natal test for so be can have abortions to ensure such people aren't born. The "Gold standard" treatment for autism Adaptive Behaviour Analysis has some common heritage between the treatment of Autism and Transgenderism, which involved using adversives (torture), to get people to act in a more gender conforming or less autistic way. I still think about that. If you use essentially the same treatment to modify the behavour of a transgender person or an autistic person, if you do it to the former it's a hate crime, if you do it to the latter it's a medical necessity[1]. I find that VERY revealing as to medicines attitude towards the Autistic, that they are the broken ones who need to change to fit our glorious and perfect society. The pathologization of Autism is a crime against humanity and probably the first or second most evil thing that has happened to me throughout my entire life. Autism wasn't always a pathology - go 50 years back and nobody considered Autistic here would be considered Autistic by a doctor, wouldn't be considered "Disordered" by their peers, they might have been considered odd but not disordered. Nowadays, there's too much money in pathologizing people as disordered, everybody from parents to schools to doctors to social workers to the autistic people themselves benefit. I see the status quo as fucked up and firmly believe modern psychiatry has greatly compromised Autistics quality of life through their hateful views on Autism which rub off on the wider popuation. When these esteemed medical experts call you disordered - why shouldn't everybody else think you are? The way forward I see is how we handled homosexuality and transgenderism - de-pathologise being different from other people - but diagnose people with mental conditions that impair quality of life which are associated with Autism - and use those diagnosis's to allocate support and funding. This model also lets you make more sense of things like how both the richest man in the world and profoundly disabled people who can't hold down a job could both be "Autistic". [1]ABA is not necessarily evil, it's more how it's used for the purpose of making autistics less autistic or transgender people less transgender which is philosophically fucked up
Doxin 3y ago
The trick there is to search for stuff written by actual autistic people. A lot of the "official" literature is at best very rude. "ActuallyAutistic" is a keyword that gets used a lot by autistic people writing for autistic people.
Fnoord 3y ago
It is a spectrum and every person is unique. With every disorder, you need to tick enough boxes in order to fall under the definition (currently using DSM-V though I know one org stubbornly sticking to DSM-IV as it benefits them). Not all boxes may apply, or may apply severely. It is the same in other disorders. But also personality disorders define our very being and are very different to combat, so to conform to them is living in acceptance and harmony with them. Ie. it is something one has to live with. Anyone diagnosing a (personality) disorder worth their salt is going to explain this much better than I just did. And of course one can reap the benefits of a disorder. Stephen Fry, the actor (also a terrific writer) famously is bipolar (a term with a predecessor being manic depression). One thing which triggers some people with autism is wording; they don't have autism; they're autistic. Personally, I don't give a shit about it, but I feel the same regarding pronouns like they/they. Apparently it is a really big deal for others and I need to remind myself about that. Otherwise, I cross the line of bullying. But when I am describing myself or in general (not someone specific) I feel at liberty to pronounce the way I want. Which is careless, I admit, and a bit of self-ridicule seems healthy to me, too.
GuB-42 3y ago
The D in ASD means "disorder". If people with that weren't impaired in some way, it wouldn't be called a disorder but a personality trait. Pathologizing is useful in that if ASD was considered a simple personality trait, that would mean there would be no need to help people with ASD in any way. The idea is that before providing help, which can be in the form of medicine, therapy, special arrangements, welfare, etc... we need some kind of way to establish that you need that help. A diagnosis for a pathology is just that, a way to help people, not a way stigmatize or diminish them. Now, how effective that help will be is another story, but recognizing the pathology is a necessary step.
- LoganDark 3y ago
  ASD is the disorder, but being autistic in itself is just a type of neurodivergence (a neurotype). I do not know anyone who is autistic without also counting for ASD, but it is an important distinction.
  - PrimeMcFly 3y ago
    I don't think we have any examples of people being neurodivergent in a way that is purely positive, so every instance would likely be some sort of disorder.
    - LoganDark 3y ago
      Plenty of neurotypical people can't handle certain situations. IMHO, neurodivergency can be the same, it's just that the situations that they can't handle can happen to be situations that are expected by society, so they're automatically disordered. Plenty of neurodivergent people have found a way to function in society, they just can't all do it the exact same way as neurotypicals. Of course you're not wrong that it's likely to come with disorder anyway, since for example the autism spectrum has all sorts of possible symptoms, like being unable to learn how to speak fluently, or at all. It's hard to argue that not being a disorder, just in terms of it being an unnecessary impairment and not just a difference in specialization.

s1gnp0st 3y ago

Yep, I think it's a useful phenotype, not a disease unless the degree to which the otherwise useful traits manifest causes one to struggle to live a happy life.

skissane 3y ago
> Yep, I think it's a useful phenotype, not a disease unless the degree to which the otherwise useful traits manifest causes one to struggle to live a happy life. Yes, it is important to distinguish phenotypes from disorders. If one has the phenotype, but isn’t impaired by it to a clinically significant degree, one does not have the disorder (ASD), but one does have the broad autism phenotype (BAP; aka the broader autism phenotype or subclinical ASD). [0] The number of people who have the phenotype without the disorder is likely several times those having the disorder. The broad phenotype is particularly common among close blood relatives (parents/siblings/children) of those with the disorder. It is also has an elevated prevalence among STEM professionals. I think it is unfortunate there is not greater public awareness of BAP and its distinction from ASD. Probably many of the people who describe themselves as “on the spectrum” in a colloquial sense have BAP not ASD. [0] strictly speaking, one can speak of a narrow autism phenotype (phenotype with the clinical disorder) and a broad(er) autism phenotype (phenotype without the clinical disorder), which together make up the autism/ASD phenotype as a whole. Given the distinction between the two is clinical, it is possible in theory for the exact same phenotype to be broad for one person and narrow for another - one person might be in a less supportive environment which produces clinical impairment, the other in a more supportive environment in which impairment remains at a subclinical level - impairment arises through phenotype-environment interaction, it is not always inherent to the phenotype in itself
- lcnPylGDnU4H9OF 3y ago
  > BAP Thanks! I will remember the categorization. It’s certainly useful to distinguish between a person who needs a full-time caretaker and one who can hold a full-time job where the only categoric similarity is “they think more like each other than not”. I’ll try not to use ASD for myself anymore.
  - Fnoord 3y ago
    Fuck BAP and all these people with ASD who don't have it severe and end up being in denial, proposing masking and "getting over it" and other tough boy talk. If you got diagnosed with ASD, you have ASD and there are tons of false negatives out there (undiagnosed people) as well as those claiming they're true positive (in reality undiagnosed, they may very well have ASD in some form, or not). It is also possible you have misdiagnosed false positives. Psychopaths, for example, could very well benefit from such. I know I am not the latter. I know I have empathy, and when I don't, it is likely because of overstimulation otherwise. I recognize this in my children as well. My mother's late best friend (geez, typing this makes me realize how much I miss her) who was different in life as status quo in a way irrelevant to this discussion described my kids when tbey were very young as "friendly". A simple thing to say, but her observation was so aptly sound, I shluld remind myself about it more often next temper tantrums.
    - skissane 3y ago
      > Fuck BAP and all these people with ASD who don't have it severe and end up being in denial, proposing masking and "getting over it" and other tough boy talk. BAP is a construct developed by researchers, see e.g. https://pubmed.ncbi.nlm.nih.gov/30995078/ https://pubmed.ncbi.nlm.nih.gov/30995078/ – we can debate its value as a scientific theory, but all this stuff about "being in denial" is irrelevant to its scientific status. > If you got diagnosed with ASD, you have ASD There's this MIT PhD thesis I really like, Phech Colatat's Essays in the sociology of autism diagnosis. https://dspace.mit.edu/handle/1721.1/90070 https://dspace.mit.edu/handle/1721.1/90070 In the first half of his thesis, Colatat looked at three specialist clinics in the US, all run by Kaiser Permanente (which in his thesis he refers to by the pseudonym "Allied Health") – management was already aware that three clinics had significantly different diagnosis rates, but those differences were being ascribed to patient characteristics and referral patterns. Based on statistical analysis of medical records, Colatat argues that neither of those explanations actually work, and instead the real explanation is differences in the professional culture of each clinic – an explanation he backs up by considering the organisational history of the clinics, and the different diagnostic philosophies which influenced their respective founders. He concludes that approximately one-third of the outcome of an autism diagnosis in those clinics is determined by the culture of the clinician – and he notes that, despite these significant differences in clinical culture, they were all specialist clinics which put great emphasis on diagnostic rigour, and many diagnoses are done in generalist clinics with significantly less rigour, so it is entirely possible the cultural contribution might turn out to be even bigger if one brought those diagnoses into the analysis. So, one third (maybe even more) of the time, whether you have ASD depends, not on you, but on which clinician you see.

faeriechangling 3y ago

> had such a hard time researching autism after someone mentioned it might apply to me because I found most articles to be very stigmatizing. > I question whether pathologizing differences is that useful. Homosexuality was first referred to as a "Sexual Deviation" and a "Sociopathic personality disturbance". It's no longer considered a disorder. Transgenderism (Transsexualism) was referred to as a "psychosexual disorder" or "gender identity disorder". It's no longer considered a disorder but gender dysphoria still is. Autism is still a disorder, and nothing but a disorder. Autism is defined medically, wholly by weakness, as if that's all autism is. Something we should maybe cure one day, or come up with a pre-natal test for so be can have abortions to ensure such people aren't born. The "Gold standard" treatment for autism Adaptive Behaviour Analysis has some common heritage between the treatment of Autism and Transgenderism, which involved using adversives (torture), to get people to act in a more gender conforming or less autistic way. I still think about that. If you use essentially the same treatment to modify the behavour of a transgender person or an autistic person, if you do it to the former it's a hate crime, if you do it to the latter it's a medical necessity[1]. I find that VERY revealing as to medicines attitude towards the Autistic, that they are the broken ones who need to change to fit our glorious and perfect society. The pathologization of Autism is a crime against humanity and probably the first or second most evil thing that has happened to me throughout my entire life. Autism wasn't always a pathology - go 50 years back and nobody considered Autistic here would be considered Autistic by a doctor, wouldn't be considered "Disordered" by their peers, they might have been considered odd but not disordered. Nowadays, there's too much money in pathologizing people as disordered, everybody from parents to schools to doctors to social workers to the autistic people themselves benefit. I see the status quo as fucked up and firmly believe modern psychiatry has greatly compromised Autistics quality of life through their hateful views on Autism which rub off on the wider popuation. When these esteemed medical experts call you disordered - why shouldn't everybody else think you are? The way forward I see is how we handled homosexuality and transgenderism - de-pathologise being different from other people - but diagnose people with mental conditions that impair quality of life which are associated with Autism - and use those diagnosis's to allocate support and funding. This model also lets you make more sense of things like how both the richest man in the world and profoundly disabled people who can't hold down a job could both be "Autistic". [1]ABA is not necessarily evil, it's more how it's used for the purpose of making autistics less autistic or transgender people less transgender which is philosophically fucked up

Doxin 3y ago

The trick there is to search for stuff written by actual autistic people. A lot of the "official" literature is at best very rude. "ActuallyAutistic" is a keyword that gets used a lot by autistic people writing for autistic people.

Fnoord 3y ago

It is a spectrum and every person is unique. With every disorder, you need to tick enough boxes in order to fall under the definition (currently using DSM-V though I know one org stubbornly sticking to DSM-IV as it benefits them). Not all boxes may apply, or may apply severely. It is the same in other disorders. But also personality disorders define our very being and are very different to combat, so to conform to them is living in acceptance and harmony with them. Ie. it is something one has to live with. Anyone diagnosing a (personality) disorder worth their salt is going to explain this much better than I just did. And of course one can reap the benefits of a disorder. Stephen Fry, the actor (also a terrific writer) famously is bipolar (a term with a predecessor being manic depression). One thing which triggers some people with autism is wording; they don't have autism; they're autistic. Personally, I don't give a shit about it, but I feel the same regarding pronouns like they/they. Apparently it is a really big deal for others and I need to remind myself about that. Otherwise, I cross the line of bullying. But when I am describing myself or in general (not someone specific) I feel at liberty to pronounce the way I want. Which is careless, I admit, and a bit of self-ridicule seems healthy to me, too.

GuB-42 3y ago

The D in ASD means "disorder". If people with that weren't impaired in some way, it wouldn't be called a disorder but a personality trait. Pathologizing is useful in that if ASD was considered a simple personality trait, that would mean there would be no need to help people with ASD in any way. The idea is that before providing help, which can be in the form of medicine, therapy, special arrangements, welfare, etc... we need some kind of way to establish that you need that help. A diagnosis for a pathology is just that, a way to help people, not a way stigmatize or diminish them. Now, how effective that help will be is another story, but recognizing the pathology is a necessary step.

LoganDark 3y ago
ASD is the disorder, but being autistic in itself is just a type of neurodivergence (a neurotype). I do not know anyone who is autistic without also counting for ASD, but it is an important distinction.
- PrimeMcFly 3y ago
  I don't think we have any examples of people being neurodivergent in a way that is purely positive, so every instance would likely be some sort of disorder.
  - LoganDark 3y ago
    Plenty of neurotypical people can't handle certain situations. IMHO, neurodivergency can be the same, it's just that the situations that they can't handle can happen to be situations that are expected by society, so they're automatically disordered. Plenty of neurodivergent people have found a way to function in society, they just can't all do it the exact same way as neurotypicals. Of course you're not wrong that it's likely to come with disorder anyway, since for example the autism spectrum has all sorts of possible symptoms, like being unable to learn how to speak fluently, or at all. It's hard to argue that not being a disorder, just in terms of it being an unnecessary impairment and not just a difference in specialization.