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Re:The moral case against equity language by skissane on Friday March 03, 2023 @06:07PM (#35016248)
> 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 version of the same basic idea, [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

[2] https://onlinelibrary.wiley.com/doi/10.1002/aur.2494

Re:The moral case against equity language by msla on Saturday March 04, 2023 @05:03AM (#35019696)
> 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.

Re:The moral case against equity language by skissane on Saturday March 04, 2023 @06:00AM (#35019991)
Here's a paper I really like – 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/...

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?

Re:The moral case against equity language by msla on Saturday March 04, 2023 @06:10AM (#35020023)
OK, I think I agree with you: We don't know if ASD or any of our current diagnoses are a particularly good model, but it is possible to cluster people and some people are farther from whatever group of clusters collectively contains the majority or strong plurality.