5 ms·

I have a similar story: When I was a child, I was diagnosed with Asperger's Syndrome. This is now malady non grata: For one thing, it's been folded into autism

by msla 4y ago

I have a similar story: When I was a child, I was diagnosed with Asperger's Syndrome. This is now malady non grata: For one thing, it's been folded into autism spectrum disorder, the DSM-5 being more on the lumper end of things than previous DSMs were, and, for another, it has a checkered history, with Hans Asperger using his position as a doctor in Vienna during the Second World War to choose which children were saved and which were murdered in camps. His collaboration with the Nazis and odious views have resulted in a backlash against the diagnosis. Later still, the very word "Autism" seems to have faded out of polite speech, with people like me being referred to as "on the spectrum" with no explicit mention of which spectrum. This is, as far as I'm concerned, a straight-up euphemism treadmill: The DSM-5's lumping of Asperger's into autism spectrum disorder is something that can be defended on its scientific merits, but moving away from any mention of autism is purely down to the word's use as an insult. OK, so be it. The treadmill rolls on. The final point is person-first language and why I don't use it: I am an autistic person. I don't say I'm a person with autism because I can't possibly be without autism. Is someone who identifies as a man a "person with gender" or is anyone a "person with race" or "person with ethnicity"? No. Some things are fundamental enough to how we experience the world that saying we're a person with that thing, which implies we could be without it, is wrong.

skissane 4y ago
> Later still, the very word "Autism" seems to have faded out of polite speech, with people like me being referred to as "on the spectrum" with no explicit mention of which spectrum It is terribly ignorant, because people who use "spectrum" as an alias for autism/ASD don't know that psychiatry/psychology contains many other "spectrums" – the schizophrenia spectrum, the obsessive-compulsive spectrum, the bipolar spectrum, the disruptive behaviour disorder spectrum, the trauma spectrum, etc, etc. The autism and schizophrenia spectrums are the only two which have officially made it into the DSM-5, but the others are all actively used in research and clinically, and the obsessive-compulsive spectrum was originally planned to be included (but for whatever reason didn't make the cut). > The final point is person-first language and why I don't use it: I am an autistic person. I seriously thought about paying a psychologist >$1000 for an autism assessment. Together, my psychiatrist and my psychologist [0] talked me out of it. They both said that if I really wanted a piece of paper saying that I had ASD, certainly some psychologist out there would be happy to take my money and give me one. But, their argument was, it wouldn't actually make any positive difference to my life, it would just be a waste of my time and money. And, for now at least, I decided to follow their advice. So am I an "autistic person" or not? What is "autism"? "Asperger's"? "ASD"? Well, in part, they are scientific theories; in part, they are cultural constructs, whose existence and success is quite independent of the quality or truth of the scientific theory. Focusing just on the scientific theory side, how good is the evidence behind them? Most professionals, families, and people who identify with those labels assume the evidence must be really good. But, there are voices out there arguing that they are far from proven, that the science behind them is deeply flawed, even that we ought to drop them and look for better theories to replace them with. See [1] – and for a weaker but overlapping position, [2]. Is something really "fundamental enough to how we experience the world" if it is a scientific theory which could well turn out to be false, a dead-end, a wrong turn in the history of science? What if, one day, people look back on ASD/autism/Asperger's/etc just as we now look back on hysteria, phlogiston, the luminiferous aether, the Ptolemaic model, the steady-state universe, etc, etc, etc? What if "autism" is really no more fundamental to anyone's identity than hysteria was? [0] my psychologist isn't qualified to diagnose ASD, hence he couldn't do it, I had to go to someone else. He could gain that qualification if he wanted to – all it takes is just a few short courses – but he isn't interested in practicing in that area. Similar story for my psychiatrist – he told me if any patient asks him about an ASD diagnosis, he tells them to see a psychologist for that instead, he doesn't want to get involved in it [1] https://link.springer.com/article/10.1007/s40489-016-0085-x https://link.springer.com/article/10.1007/s40489-016-0085-x [2] https://onlinelibrary.wiley.com/doi/10.1002/aur.2494 https://onlinelibrary.wiley.com/doi/10.1002/aur.2494
- msla 4y ago
  > What if, one day, people look back on ASD/autism/Asperger's/etc just as we now look back on hysteria, phlogiston, the luminiferous aether, the Ptolemaic model, the steady-state universe, etc, etc, etc? None of that makes sense, in that new ideas about how the world works can't change the results of old experiments. That means I'll always be me, I'll always have been me, and part of that involves dealing with things that are, apparently, significantly different from what other people deal with. I am different from other people, regardless of what name is eventually hung on that, and just saying that name can't be "Autism" for some reason or another isn't changing the important part.
  - skissane 4y ago
    Here's a paper I really like – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6880188/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6880188/ – they looked at the brains of four groups of children – those with a primary diagnosis of ASD, ADHD, OCD and the "typically developing" ("normal" children with no diagnosis at all). They used machine learning to assign the children to clusters, based purely on brain imaging and test results (IQ and behavioural scales) – without any reference to the diagnostic labels. The 10 clusters they got had poor overlap with the diagnostic labels – see especially figure 3 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6880188/figure/Fig3/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6880188/figure/... I don't think their research is at all the "final answer" to what is "really going on" – it needs replication, and you might get different clusters if you added more diagnoses – but let's just pretend for the moment it is. People with an ASD diagnosis were in all 10 clusters, so who knows which one you would be in. Now, given your emphasis on "I am different", maybe you are in one of the clusters which is "further from normal", such as 8 or 9 or 10. But, whatever "you have", it would be clear that (1) plenty of people who "have ASD" don't "have what you have", (2) unless you happen to be in cluster 10, the sole ASD-only cluster (which only had 10-15% of ASD), some people who "don't have ASD" do "have what you have". Doesn't it therefore follow, that whatever it is, "autism" or "ASD" or "Aspeger's" isn't a good label for it?
    - msla 4y ago
faeriechangling 4y ago
Autism is an insult, it’s a shortened version of “autism spectrum disorder”, disorder is intrinsically an insulting word, and the diagnostic criteria describes variations in human behaviour as dysfunctions and so on. The increased use of “autism” as an insult and people avoiding it is because it is an insult and always was from its conception. That is why doctors regularly try and plot to screen people’s DNA for this “autism” to exterminate them from the gene pool. Because it’s a bad thing they want to destroy, despite the fact it’s a “spectrum” disorder and thus is a label of convenience and there’s not really such a thing as “the autism gene”. Which to me makes the whole “autistic person” vs “person with autism” stuff pointless. You’re either a disordered person or a person with a disorder, put a gun to my head and I prefer disordered person. I react with offence to any such labels on the grounds that “Asperger’s” is obsolete and “autism” was never diagnosed so people and call me disordered as shorthand to describe me can fuck themselves because I don’t want to deal with the stigma of a label which was thrust upon me through incredibly pseudoscientific means. The dsm-iv which I was diagnosed under was called a “noble lie” by one of its chief author’s.
- msla 4y ago
  > Autism is an insult, it’s a shortened version of “autism spectrum disorder”, disorder is intrinsically an insulting word, and the diagnostic criteria describes variations in human behaviour as dysfunctions and so on. No, people use "Autism" as an insult because they think it's a way to say "retarded" which won't get them slapped down.
  - faeriechangling 4y ago
    I don't really agree, because I see people who use both the word "Retard" and "Autist" as a slur. It's only the left wing who will exclusively use the word "Autist" as a slur because it flies under the radar and can be wrapped up in woke dressing, but the words aren't totally interchangable. The word "Autist" has become popular simply because more people are called "Autists". This justifies parents getting more government assistance's, schools being able to rationalise away their standardised test scores slipping as being the students fault, doctors getting fat insurance payouts, TikTok celebrities getting attention, everybody gets their piece. It's a label of scapegoating problems people have with an individual justified by the subjective observation of their behaviour and the inference their brains must be "disordered", "disturbed", "disregulated", and "dysfunctional" without any requirement to look deeper into societal or physiological problems. No wonder prevalence has increased more than a hundredfold since it first started being diagnosed, it's so convenient to so many people, and the diagnostic criteria is relativistic and thus pliable. The rise of autism's popularity was to justify (POSITIVELY!) discriminatory treatment in schools, social groups, and work which were always wrapped up in this faux-sympathetic concern over defective brains which totally justifies differential treatment. People who just think that "Autism" is a funny way to make fun of somebody without any further motivation aren't even the problem, they merely reveal the reality of what over-socialised people have always thought when they call people "Autistic", and that look in the mirror revolts people. Way I see it, this thing called autism being treated as a "mental disorder" is no different than transgenderism being called a "mental disorder". A difference in behaviour being belittled as a mental defect without non-inferential evidence or thought about if this framing actually helps people. That is how I see it more than I see it as a PC replacement for the word "Retard".

by msla 4y ago

skissane 4y ago

> Later still, the very word "Autism" seems to have faded out of polite speech, with people like me being referred to as "on the spectrum" with no explicit mention of which spectrum It is terribly ignorant, because people who use "spectrum" as an alias for autism/ASD don't know that psychiatry/psychology contains many other "spectrums" – the schizophrenia spectrum, the obsessive-compulsive spectrum, the bipolar spectrum, the disruptive behaviour disorder spectrum, the trauma spectrum, etc, etc. The autism and schizophrenia spectrums are the only two which have officially made it into the DSM-5, but the others are all actively used in research and clinically, and the obsessive-compulsive spectrum was originally planned to be included (but for whatever reason didn't make the cut). > The final point is person-first language and why I don't use it: I am an autistic person. I seriously thought about paying a psychologist >$1000 for an autism assessment. Together, my psychiatrist and my psychologist [0] talked me out of it. They both said that if I really wanted a piece of paper saying that I had ASD, certainly some psychologist out there would be happy to take my money and give me one. But, their argument was, it wouldn't actually make any positive difference to my life, it would just be a waste of my time and money. And, for now at least, I decided to follow their advice. So am I an "autistic person" or not? What is "autism"? "Asperger's"? "ASD"? Well, in part, they are scientific theories; in part, they are cultural constructs, whose existence and success is quite independent of the quality or truth of the scientific theory. Focusing just on the scientific theory side, how good is the evidence behind them? Most professionals, families, and people who identify with those labels assume the evidence must be really good. But, there are voices out there arguing that they are far from proven, that the science behind them is deeply flawed, even that we ought to drop them and look for better theories to replace them with. See [1] – and for a weaker but overlapping position, [2]. Is something really "fundamental enough to how we experience the world" if it is a scientific theory which could well turn out to be false, a dead-end, a wrong turn in the history of science? What if, one day, people look back on ASD/autism/Asperger's/etc just as we now look back on hysteria, phlogiston, the luminiferous aether, the Ptolemaic model, the steady-state universe, etc, etc, etc? What if "autism" is really no more fundamental to anyone's identity than hysteria was? [0] my psychologist isn't qualified to diagnose ASD, hence he couldn't do it, I had to go to someone else. He could gain that qualification if he wanted to – all it takes is just a few short courses – but he isn't interested in practicing in that area. Similar story for my psychiatrist – he told me if any patient asks him about an ASD diagnosis, he tells them to see a psychologist for that instead, he doesn't want to get involved in it [1] https://link.springer.com/article/10.1007/s40489-016-0085-x https://link.springer.com/article/10.1007/s40489-016-0085-x [2] https://onlinelibrary.wiley.com/doi/10.1002/aur.2494 https://onlinelibrary.wiley.com/doi/10.1002/aur.2494

msla 4y ago
> What if, one day, people look back on ASD/autism/Asperger's/etc just as we now look back on hysteria, phlogiston, the luminiferous aether, the Ptolemaic model, the steady-state universe, etc, etc, etc? None of that makes sense, in that new ideas about how the world works can't change the results of old experiments. That means I'll always be me, I'll always have been me, and part of that involves dealing with things that are, apparently, significantly different from what other people deal with. I am different from other people, regardless of what name is eventually hung on that, and just saying that name can't be "Autism" for some reason or another isn't changing the important part.
- skissane 4y ago
  Here's a paper I really like – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6880188/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6880188/ – they looked at the brains of four groups of children – those with a primary diagnosis of ASD, ADHD, OCD and the "typically developing" ("normal" children with no diagnosis at all). They used machine learning to assign the children to clusters, based purely on brain imaging and test results (IQ and behavioural scales) – without any reference to the diagnostic labels. The 10 clusters they got had poor overlap with the diagnostic labels – see especially figure 3 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6880188/figure/Fig3/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6880188/figure/... I don't think their research is at all the "final answer" to what is "really going on" – it needs replication, and you might get different clusters if you added more diagnoses – but let's just pretend for the moment it is. People with an ASD diagnosis were in all 10 clusters, so who knows which one you would be in. Now, given your emphasis on "I am different", maybe you are in one of the clusters which is "further from normal", such as 8 or 9 or 10. But, whatever "you have", it would be clear that (1) plenty of people who "have ASD" don't "have what you have", (2) unless you happen to be in cluster 10, the sole ASD-only cluster (which only had 10-15% of ASD), some people who "don't have ASD" do "have what you have". Doesn't it therefore follow, that whatever it is, "autism" or "ASD" or "Aspeger's" isn't a good label for it?
  - msla 4y ago

faeriechangling 4y ago

Autism is an insult, it’s a shortened version of “autism spectrum disorder”, disorder is intrinsically an insulting word, and the diagnostic criteria describes variations in human behaviour as dysfunctions and so on. The increased use of “autism” as an insult and people avoiding it is because it is an insult and always was from its conception. That is why doctors regularly try and plot to screen people’s DNA for this “autism” to exterminate them from the gene pool. Because it’s a bad thing they want to destroy, despite the fact it’s a “spectrum” disorder and thus is a label of convenience and there’s not really such a thing as “the autism gene”. Which to me makes the whole “autistic person” vs “person with autism” stuff pointless. You’re either a disordered person or a person with a disorder, put a gun to my head and I prefer disordered person. I react with offence to any such labels on the grounds that “Asperger’s” is obsolete and “autism” was never diagnosed so people and call me disordered as shorthand to describe me can fuck themselves because I don’t want to deal with the stigma of a label which was thrust upon me through incredibly pseudoscientific means. The dsm-iv which I was diagnosed under was called a “noble lie” by one of its chief author’s.

msla 4y ago
> Autism is an insult, it’s a shortened version of “autism spectrum disorder”, disorder is intrinsically an insulting word, and the diagnostic criteria describes variations in human behaviour as dysfunctions and so on. No, people use "Autism" as an insult because they think it's a way to say "retarded" which won't get them slapped down.
- faeriechangling 4y ago
  I don't really agree, because I see people who use both the word "Retard" and "Autist" as a slur. It's only the left wing who will exclusively use the word "Autist" as a slur because it flies under the radar and can be wrapped up in woke dressing, but the words aren't totally interchangable. The word "Autist" has become popular simply because more people are called "Autists". This justifies parents getting more government assistance's, schools being able to rationalise away their standardised test scores slipping as being the students fault, doctors getting fat insurance payouts, TikTok celebrities getting attention, everybody gets their piece. It's a label of scapegoating problems people have with an individual justified by the subjective observation of their behaviour and the inference their brains must be "disordered", "disturbed", "disregulated", and "dysfunctional" without any requirement to look deeper into societal or physiological problems. No wonder prevalence has increased more than a hundredfold since it first started being diagnosed, it's so convenient to so many people, and the diagnostic criteria is relativistic and thus pliable. The rise of autism's popularity was to justify (POSITIVELY!) discriminatory treatment in schools, social groups, and work which were always wrapped up in this faux-sympathetic concern over defective brains which totally justifies differential treatment. People who just think that "Autism" is a funny way to make fun of somebody without any further motivation aren't even the problem, they merely reveal the reality of what over-socialised people have always thought when they call people "Autistic", and that look in the mirror revolts people. Way I see it, this thing called autism being treated as a "mental disorder" is no different than transgenderism being called a "mental disorder". A difference in behaviour being belittled as a mental defect without non-inferential evidence or thought about if this framing actually helps people. That is how I see it more than I see it as a PC replacement for the word "Retard".