12:23am August 4, 2015

History of autism diagnosis and marginalized people.  (Original post removed because the author was uncomfortable with being reblogged.  They didn’t specifically ask me to delete my original reply to them, but I did, because I don’t want to send people back to their inbox inadvertently.)

So I’m removing direct quotes from their original post, and I’m just leaving in the information I gave out because that information is still relevant to understanding a bit more nuance than a lot of people know to the history of autism diagnoses.

So here goes: 

I agree with your main point.  It would be hard not to, I’m autistic, AFAB, and genderless, among other things, so I’ve seen how these things play out.  But at the same time, you make some statements as absolutes that I want to clarify because they’re not actually true as absolutes, only as generalities.  So I just want to add some… detail… I guess you could call it.

[deleted quote about autism only being diagnosed in white men]

I was diagnosed in 1995, at the age of 14, the diagnosis was reiterated several times over the years, and I’m white but AFAB/genderless.  I was re-diagnosed in 1999, at the age of 18.  I was not seeking a diagnosis when I was originally diagnosed.  

However, at the same time, I was certainly diagnosed later than I should have been.  These days, I would have been diagnosed at the age of 15 months, at the latest, as that’s when I stopped speaking.  But that happened in 1981, and the doctor my mom saw about it, told her the standard line for “regressive autism” at the time, which was “it’s probably your fault, you’re letting her be lazy and not making her need to talk”.  Which is ridiculous.  I also should’ve been diagnosed when the preschool called in my mother to tell her I was playing alone and shrieking when other kids came near me, or when I was first referred to a therapist at the age of seven, and multiple other times I was referred to mental health professionals or schools brought up what was “wrong” with me.  

However, the diagnosis didn’t happen, and I can believe some of it was because of the cis white male thing.  Other parts of it were because the definition of autism was different in 1980 than in 1987, and different in 1987 than it was in 1995.  And every time the DSM gets updated, it can take over a decade – with some stragglers, even more than two decades – for everyone to catch up.  So people look at the change in 1987 and say that instantly everyone should’ve been diagnosed, but that’s not how it works.  I encountered a doctor in 1999 who said that autistic people couldn’t interact in any way shape or form – a view of autism that had officially left the DSM in 1987.  And there’s still doctors who think that, which dates back to the 1980 definition(1).  

There was also another factor you didn’t talk about:  An autistic disorder diagnosis, in the nineties, was considered almost like a death sentence.  Insurance would give up and want to institutionalize you rather than pay for “treatments” and “therapies” and stuff.  And many shrinks recognized this, and would take people who clearly and unambiguously fit the criteria for Autistic Disorder, and diagnose us with PDDNOS or Asperger’s.  That’s how I got a PDDNOS diagnosis:  My mom was told I was ‘autistic’ and an ‘idiot savant’ – out loud – but on paper it was PDDNOS/atypical autism, until I was old enough that the insurance thing wasn’t a threat anymore.  Then it was changed – by the same shrink who originally diagnosed PDDNOS/atypical autism on paper – to autistic disorder, when I turned 18 or so.

The book Unstrange Minds gets into the way that diagnostic weirdness happened to the author’s daughter, who was diagnosed in roughly the same time period I was diagnosed, and was also told she fit full criteria for Autistic Disorder but would get diagnosed with PDDNOS instead because they didn’t want a label that would hurt her chances of getting help in school and the like.  Saying Autistic Disorder was seen almost as like writing someone off.  You just didn’t do it if you could help it.  Unfortunately that has made it hard for some people who are products of that time, to get services when the services depend on an Autistic Disorder diagnosis.

Back to the statements you’ve made.  It’s true that it’s harder for marginalized people of all kinds to get diagnosed even still, and that this was even more true in the nineties and before.  Those of us who did get diagnosed back then got lucky.  That’s how I see it.

But I also know what I saw when I went to a special ed high school.  It had people mostly with a combination of DD and psych labels.  I was in a classroom that was fairly mixed diagnosis-wise, but there were two classrooms that were all autistic people, most of whom were considered nonverbal (whether they were or not).  And then a few of us scattered through the other classrooms.

So anyway… of the autistic people that I was aware of, in that school, the majority of them were people of color.  The majority were also male, or presumed male anyway (most would not be able to tell you their actual gender identity regardless of what it was, or wasn’t).  I know that people of color have more trouble getting diagnosed (and more likelihood of getting diagnosed with things like conduct disorder or ADHD or intellectual disability or psychosis) but in our school at least, the majority of autistic people were not white, and that means that there were plenty of people in the eighties and nineties who were getting diagnosed despite being people of color.

But definitely it was overwhelmingly (presumed) boys who had diagnoses at that school.  There were very few autistic girls there.

[deleted quote about how nobody ever looked for autism in PoC or anyone other than white men]

Again, they didn’t look for it enough in people of color, but they did in fact look for it in people other than white cis men.  They just didn’t look enough. I know that sounds like a minor difference, but I don’t want people getting the idea that people like me or others I know were never diagnosed until the 2000s.  Because I was diagnosed in 1995, and I’m AFAB/genderless, which means someone somewhere was looking for autism.   Especially since I wasn’t seeking an autism diagnosis when I got diagnosed, so they had to have seen it in me – they had no reason to be specifically looking for autism, given that I was there for suicide.

I know it probably looks like I’m trying to argue with you. I’m not. I’m actually just trying to make sure that other people know that your statements, while generally accurate, aren’t literally accurate.  (Including the one that starts with “literally”.)  Because a lot of autistic people do take things literally.  So I wanted to let people know that it wasn’t like the only people to get diagnosed until recently were white cis men.  It’s just that they were the majority of people who got diagnosed until recently, and still are a majority.   I’m white, not cis, and not male or AMAB, and I was diagnosed in the nineties, and so were other people I know, so it happened.  Just not often enough.

Other than that I totally agree with your post.   It’s harder to write a lot about “Yes I agree with this” than to point out where I disagree, so that’s why there’s a lot more disagreement in this response than agreement.  But the actual levels of agreement and disagreement, are that I agree with nearly everything you’re saying, but I disagree with some of the sweeping statements you make in one area, and I wanted people to know that reality is more complicated than that.  In case they weren’t around for the nineties or eighties.

Footnotes below cut.

(1) Which does not at all reflect Kanner’s original patients.  Most people think that autism was originally “LFA” and then gradually more and more “high functioning” people were added.  Actually, most of Kanner’s original patients could have ended up with an Asperger or PDDNOS diagnosis as easily as they could’ve ended up with an autism diagnosis by the standards of modern times, and all but one or two of them qualified as what people now would call high-functioning by one definition or another.  One of them had an IQ of 145 or 150, I forget which.  Many of his initial patients went to college.  

In fact, there was a time when “Kanner autism” meant “high functioning autism”.  They actually sometimes disqualified people with low IQs from autism diagnosis, preferring to define them as having childhood psychosis or childhood schizophrenia, or just an intellectual disability with no additional diagnosis.  Then they gradually started adding people with low IQs and more severe communication impairments to the definition of autism, until that became the new definition of who was the “most autistic”, and then they had to add back the people who were most like Kanner’s original patients – by bringing out Asperger’s original paper and translating it and pushing for Asperger syndrome to be recognized as a form of autism.  

So the definitions have not just shifted in one direction, they’ve gone back and forth over the years, and each shift has taken decades to take hold, by which point it’s shifted again, so nobody agrees on the definitions.  

FWIW I don’t personally agree with any of the official divisions between autistic people – AS versus Kanner or HFA versus LFA or any of that.  We differ from each other but not in the ways people think.)

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