What was it, 10 to 20 years ago, people started to be noticeably nervous when they were coming near a description of my disability. It used to be so simple. I am 100% blind, and guess what, I prefer the term blind because it is pretty descriptive and relatively short. But all of a sudden, people external to the community started to fumble around with "visually challenged", and all the nonsense variations of that in m…
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 sav…
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