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Many people within the Autism community have pointed out that the diagnostic criteria for Autism tends to include mainly traits of distressed autistics: things

Many people within the Autism community have pointed out that the diagnostic criteria for Autism tends to include mainly traits of distressed autistics: things like meltdowns, shutdowns, and poor social skills. Whereas there seem to be a much larger group of people who have similar traits and experiences but who are coping with it much better (although not necessarily entirely well) who get completely missed.

moomin 5y ago
Very much this. I’ve spoken to a lot of parents of autistic kids and a whole bunch of symptoms commonly associated with autism are actually stress reactions and nothing to do with autism at all. If you found that people behaved in weird and confusing ways every day you might get withdrawn too.
- banannaise 5y ago
  Plus, instead of accepting autistic behaviors as quirks, we often try to psychologically beat it out of them (ABA therapy). This of course tends to make things worse rather than better, and you end up with a lot of autistic people who have two modes: pretending their best to be "normal", and complete meltdown when that fails.
h0l0cube 5y ago
Having a hint of autism, from personal experience, puts you in this uncanny valley, where you act in ways that confound other people, and you have a hell of a time fitting in, but not enough to make it click for them. If you mask almost well enough and fall a little short, people categorize you as eccentric, creepy, foolish, or all of the above. This is one context where I think identifying as autistic can be helpful, even though that can arouse some deeply held prejudices in some.
- giantg2 5y ago
  "people categorize you as eccentric, creepy, foolish, or all of the above." This was the first time I've heard the foolish part. This is definitely making me question some of my past and pushing me even closer to consider getting evaluated. The main thing stopping me is, how will a diagnosis help me? I feel what it wouldn't change anything in my personal life. I would like to make my job better, but I'm not sure what they would actually do since my biggest issues are when they lie or otherwise don't honor their word. Then I have managers telling me things don't work the way the policies say they should and that I'm foolish for taking the approach that relies on those policies/systems.
  - nicoburns 5y ago
    Honestly, a diagnosis probably won’t help very much. There just aren’t very many support systems available for autistic adults. What I have had good success with is asking for accommodations with a business justification. Why do I need X? Because I’m more productive that way and otherwise I’m prone to burn out. That might be because I’m autistic, but in some ways that's not actually relevant.
erinaceousjones 5y ago
This reminds me of how diagnostic criteria for autism all tends to focus on _presented behaviours_ rather than _internal experiences_. People who have different sensory perceptions of the world get overlooked when they're not getting overloaded by it, because there's less reason for them to try to describe their experiences if they're not distressed. You ask those people how they think/feel/perceive out of _curiosity_, though, and a whole bunch can be revealed! I relate to that a lot, having a recent ADHD diagnosis as an adult - there's definitely some overlap between autism/ADHD traits; in conversation with my autistic friends and ADHD friends there's definitely some stuff we share when it comes to sensory stuff, and it's even _more_ overlooked when it comes to ADHD d/x. Like, _why_ is that kid throwing a massive meltdown? Has anyone helped them to work out their triggers? Is it something as simple as: overhead fluorescent lighting, or the area is too busy with sounds? It really bugged me when I got my ADHD d/x that my psychiatrist, as lovely as he was, described me as "a mild case". Because psychiatry is all about quantifying "health risk" of "disorder". In his mind, because I had "no trouble holding a job down" and "had never been to prison", I was doing great. (Way to feed into my impostor syndrome, doc!) But after diagnosis, after access to the stimulant meds, and making much more sense of how my brain ticks - all the day to day stuff I was _silently_ struggling with _without even noticing that I was struggling_, I can handle better! Concrete example: Large, busy supermarkets and shopping malls. Those places don't make me melt down: I don't get angry or upset. But visually, audibly and olfactor-ily, those places can be really overwhelming for me. I tend to get quite quiet (shutdown?) and dissociate a bit, but I don't present as being _distressed_. And all I notice, is that after being in those environments, I am tired out, and need some recovery time in my own environment. Now I'm taking ADHD meds, those places are a _lot_ easier to handle and I require less recovery time after. It's especially difficult for kids to describe their internal experiences which I think is partly the reason why diagnostic criteria is so focused on behaviours - and those behaviours are the most evident when they come from distress, which results in our neurodivergence being pathologised so much. But I really really hope that the focus - especially in schools - can shift, and that people can help kids think and describe how they perceive the world more. What we have now is "kid is not developing at same rate as their peers" and "kid has 'odd' behaviours".
- jamincan 5y ago
licensetoill 5y ago
> to include mainly traits of distressed autistics When you understand that mental illness is meeting the criteria such that they cause serious issue in in your life, this makes perfect sense. We're all sad sometimes, maybe even fall into "a funk" but that might not well meet the level of clinical depression. Someone might be able to casually smoke some meth, while another goes off the rails into substance abuse disorder. We diagnose based on the impact, if you're the former and not the latter you do not have the diagnosis even if you have the same basal elements as the latter.
- nicoburns 5y ago
  I think the point is that specifically in the case of autism, it would be really useful to provide preventative support before it gets to the point of complete dysfunction.
- banannaise 5y ago
  Except that's not really it. The focus isn't on what causes serious issues for us, it's all about the things that cause distress for the people around us. Autism is largely understood, diagnosed, and "treated" as You're Making Us Uncomfortable Disease

moomin 5y ago

Very much this. I’ve spoken to a lot of parents of autistic kids and a whole bunch of symptoms commonly associated with autism are actually stress reactions and nothing to do with autism at all. If you found that people behaved in weird and confusing ways every day you might get withdrawn too.

banannaise 5y ago
Plus, instead of accepting autistic behaviors as quirks, we often try to psychologically beat it out of them (ABA therapy). This of course tends to make things worse rather than better, and you end up with a lot of autistic people who have two modes: pretending their best to be "normal", and complete meltdown when that fails.

h0l0cube 5y ago

Having a hint of autism, from personal experience, puts you in this uncanny valley, where you act in ways that confound other people, and you have a hell of a time fitting in, but not enough to make it click for them. If you mask almost well enough and fall a little short, people categorize you as eccentric, creepy, foolish, or all of the above. This is one context where I think identifying as autistic can be helpful, even though that can arouse some deeply held prejudices in some.

giantg2 5y ago
"people categorize you as eccentric, creepy, foolish, or all of the above." This was the first time I've heard the foolish part. This is definitely making me question some of my past and pushing me even closer to consider getting evaluated. The main thing stopping me is, how will a diagnosis help me? I feel what it wouldn't change anything in my personal life. I would like to make my job better, but I'm not sure what they would actually do since my biggest issues are when they lie or otherwise don't honor their word. Then I have managers telling me things don't work the way the policies say they should and that I'm foolish for taking the approach that relies on those policies/systems.
- nicoburns 5y ago
  Honestly, a diagnosis probably won’t help very much. There just aren’t very many support systems available for autistic adults. What I have had good success with is asking for accommodations with a business justification. Why do I need X? Because I’m more productive that way and otherwise I’m prone to burn out. That might be because I’m autistic, but in some ways that's not actually relevant.

erinaceousjones 5y ago

This reminds me of how diagnostic criteria for autism all tends to focus on _presented behaviours_ rather than _internal experiences_. People who have different sensory perceptions of the world get overlooked when they're not getting overloaded by it, because there's less reason for them to try to describe their experiences if they're not distressed. You ask those people how they think/feel/perceive out of _curiosity_, though, and a whole bunch can be revealed! I relate to that a lot, having a recent ADHD diagnosis as an adult - there's definitely some overlap between autism/ADHD traits; in conversation with my autistic friends and ADHD friends there's definitely some stuff we share when it comes to sensory stuff, and it's even _more_ overlooked when it comes to ADHD d/x. Like, _why_ is that kid throwing a massive meltdown? Has anyone helped them to work out their triggers? Is it something as simple as: overhead fluorescent lighting, or the area is too busy with sounds? It really bugged me when I got my ADHD d/x that my psychiatrist, as lovely as he was, described me as "a mild case". Because psychiatry is all about quantifying "health risk" of "disorder". In his mind, because I had "no trouble holding a job down" and "had never been to prison", I was doing great. (Way to feed into my impostor syndrome, doc!) But after diagnosis, after access to the stimulant meds, and making much more sense of how my brain ticks - all the day to day stuff I was _silently_ struggling with _without even noticing that I was struggling_, I can handle better! Concrete example: Large, busy supermarkets and shopping malls. Those places don't make me melt down: I don't get angry or upset. But visually, audibly and olfactor-ily, those places can be really overwhelming for me. I tend to get quite quiet (shutdown?) and dissociate a bit, but I don't present as being _distressed_. And all I notice, is that after being in those environments, I am tired out, and need some recovery time in my own environment. Now I'm taking ADHD meds, those places are a _lot_ easier to handle and I require less recovery time after. It's especially difficult for kids to describe their internal experiences which I think is partly the reason why diagnostic criteria is so focused on behaviours - and those behaviours are the most evident when they come from distress, which results in our neurodivergence being pathologised so much. But I really really hope that the focus - especially in schools - can shift, and that people can help kids think and describe how they perceive the world more. What we have now is "kid is not developing at same rate as their peers" and "kid has 'odd' behaviours".

jamincan 5y ago

licensetoill 5y ago

> to include mainly traits of distressed autistics When you understand that mental illness is meeting the criteria such that they cause serious issue in in your life, this makes perfect sense. We're all sad sometimes, maybe even fall into "a funk" but that might not well meet the level of clinical depression. Someone might be able to casually smoke some meth, while another goes off the rails into substance abuse disorder. We diagnose based on the impact, if you're the former and not the latter you do not have the diagnosis even if you have the same basal elements as the latter.

nicoburns 5y ago
I think the point is that specifically in the case of autism, it would be really useful to provide preventative support before it gets to the point of complete dysfunction.
banannaise 5y ago
Except that's not really it. The focus isn't on what causes serious issues for us, it's all about the things that cause distress for the people around us. Autism is largely understood, diagnosed, and "treated" as You're Making Us Uncomfortable Disease