Welcome back to Reading the Research, where I trawl the Internet to find noteworthy research on autism and related subjects, then discuss it in brief with bits from my own life, research, and observations.
Today's article has some interesting things to say about the diagnostic process, as well as autism diagnoses specifically. This links to the full-text article, not a summary, so be warned.
The intro to this study discusses includes the absurdity of psychiatric diagnoses, especially autism. In the typical medical field, you collect the symptoms until you get a match. Maybe you have to do a blood test, but there's typically a single, objective right answer.
Unfortunately, we simply don't have that kind of broad knowledge about the brain and the mind. Both are an order of magnitude more complex than most diseases. So when you get to mental illnesses, or into developmental disorders like autism (not a disease, thank you), the diagnosis process becomes messy. Instead of simple blood tests that produce a yes/no result, you get interviews full of subjective questions and subjective answers.
The point of this study was to look into how clinicians handle this uncertainty. Autism diagnosis is far more art than it is science, due to the truly absurd number of differences between individuals. The diagnosis is barely useful in a medical setting, in my opinion, due to that fact... and a significant number of frustrated parents agree.
Despite all that, there is pretty clearly something different about autistic people. We simply don't have the terminology and coherence of data to describe it in medically useful ways. (We do have commonality of experience, at least. Which has led to a thriving community where autistic people help each other out, which is beautiful.)
The results were interesting. Clinicians in this data set seem to simultaneously adhere to the medical concept (you are either autistic or not) and yet recognize and operate within the social concept as well (autism can be concealed or exaggerated via masking, gender norms, other medical or mental health conditions, acting, and poor reporting).
There was also the recognition that a diagnosis opens doors to resources and supports. This is particularly true in the US, where Medicaid may be your only hope of affording the appropriate services, like job training, in-home help, and transportation access. It can be significantly safer to have the diagnosis in case you need it, rather than avoid it and be denied access.
In the end, it kind of seems like the studied cases were more "diagnosis by consensus" than a doctor consulting the results of various tests and declaring the appropriate condition. That's kind of a strange state of affairs, given the rest of medical history.
It'll be interesting to see how diagnostic criteria evolve in the future, as we learn more about the brain and neurodiversity overall. Perhaps this "diagnosis by consensus" is merely a phase. Or perhaps it'll always be that way when it comes to brain-related conditions. Time will tell.
(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn't get a whole Reading the Research article about them.)
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