Childhood Schizophrenia

Like 90 percent of the autistic community, I’m currently reading Steve Silberman’s NeuroTribes.  And, like 100 percent of the autistic community who is currently reading NeuroTribes, I have Feelings.

Some of them are the same Feelings I have about reading anything about autistic people: that immediate sense of recognition and reassurance that it’s not just you, people like you do exist in the world.  (Which, as my husband points out, is reflected in the title.)  Some of them are rage.

For example: in the book’s third chapter, Steve explores the nexus between Kanner’s development of autism as a diagnostic category in the 1940s and 1950s and the growth of the diagnostic category “childhood schizophrenia,” which seems to include not only what Kanner (and the DSM-V) think of as “autism” today, but a host of conditions that produce similar behaviors.

…When I was ten years old, I read every single one of my parents’ psychology textbooks, whose publication dates ranged from the late 1950s to the 1970s.  Since the diagnoses for “autism” were based on Kanner’s insistence that the condition was rare and severe, it did not click for me then that what I had was autism.

I did, however, diagnose myself with “childhood schizophrenia” – a condition described in every textbook as what we would today call “autism spectrum disorder” without a second thought.  That was me.  That was the first description of me I had ever seen anywhere, in my life.

I bring this up because every defense I have ever heard regarding my adult diagnosis involved the timing.  Nobody could possibly have known I was autistic when I was a child, I kept hearing.  Nobody could have figured out how I was different, or why.  There was no name for what I was in the 1980s or 1990s.

Actually, this is crap.

A diagnosis of autism might not have been likely for me in 1992, the year I diagnosed myself with “childhood schizophrenia,” but it might not have been impossible, either.  Kanner’s own work included children who did not demonstrate a speech delay in childhood.  Work on articulating “Asperger’s syndrome” as a separate condition was well underway even before 1992 (I later dated a man who was diagnosed with it in 1987, when I was five).  “Childhood schizophrenia,” nonverbal learning disorder, Asperger’s syndrome, autism – the diagnoses and the help that would have resulted from them were available, if I’d had someone willing to look for me.

The fact that no one was willing to look for me isn’t my fault, and it certainly does not mean the information was not available.  I’m tired of hearing this excuse.

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3 thoughts on “Childhood Schizophrenia

  1. I have, like, too many feelings about this to write down. Okay….

    So I was actually assessed for autism in the early 1980’s. I was a non-speaking 3-year-old.

    And, I am told, one of the tests to which I was subjected was being placed on a high bookshelf to see if I would scream or cry. I didn’t, and, the SLP reported to my parents, this proved that I just didn’t want to talk, because if I wanted to, I would have.

    Only…if you read the DSM-III criteria for autism…my reaction to that test actually fulfills multiple criteria (like lack of expected response to environment, abnormalities in production of speech, and abnormal sensory reactions–which, much has been made of the addition of sensory traits to the diagnostic criteria in the DSM-5–but they were actually listed in the DSM-III-R) FOR autism, not against it.

    (I’ve never heard of anyone else having had this particular “test” used on them…I’d be really curious to know whether it was actually common or whether the clinician I saw was just an absolute artist at making shit up.)

    My brain broke when I actually went to read the DSM-III criteria at one point, to see whether it was true that the narrowness of the requirements at the time would really have excluded me, and….no. In fact, technically speaking, the requirements of an Asperger’s diagnosis in the DSM-IV should’ve required an autism and not an Asperger’s dx, because I absolutely did not demonstrate normal timing of language development, and I absolutely did have severe self-care impairments.

    The party line even among the anti-epidemic crowd–that it’s all the diagnostic criteria, we just couldn’t have known that this many people were autistic!–bugs the everliving hell out of me. Because I have my doubts that I was the only person at the time dismissed on some totally spurious basis.

    And it’s even still really hard to be pissed at that guy, because things would not have gone better for me if he had diagnosed me correctly. They would have been much, much worse.

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    1. Yeah. You’ll notice I don’t claim here that I would have *received* the available help with a diagnosis, only that help was among the things that would have been available. Institutionalization was among those things, too, and there was a nonzero chance my parents would have gone that route.

      What I’m sick of hearing is the excuse that they could not have known I merited any kind of diagnosis. Because they could have – and more to the point, they DID.

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  2. My parents guessed that I was likely autistic in the 80s. And yet everyone acts like “Oh, no one knew what autism was in the 80s!” I didn’t have a speech delay, and people seem to think that, prior to the addition of Asperger’s to the DSM-IV no one could ever have imagined that a person could be autistic without a speech delay. But I looked at the DSM criteria from 1987, and a speech delay was not even necessary for an autism diagnosis. I didn’t get diagnosed until adulthood, but that might be because my parents decided against having me evaluated for autism when I was a kid.

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