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.