My heart is heavy today. Suddenly I understand something in a new way and this clarity only makes me sad. I now know where they’ve been. I now believe beyond a doubt that the entire autism spectrum of people has always been here. And Steve Silberman is the one who found them.
But let me back up a little. All of Nat’s autistic (post diagnosis) life I have heard the words “Tsunami” and “huge wave” and “bubble” applied to the “onslaught” of diagnosed autistic people in the United States and elsewhere. “Where did all this come from?” is the question, asked with lots of hand-wringing and consternation. Two in 10,000 was the frequency of autism in Nat’s babyhood (1989). This kept shifting to greater and greater incidence until we got to where we are now, 1 in 68.
The mainstream refrain is “they have always been here, it’s just that the definition of ASD has broadened and covers many more people than it used to.” The anti-vax refrain is “this is an epidemic caused by environmental toxins, especially the prevalence of vaccines.” I don’t believe the latter, but that’s beside the point. To say that this number of people with autism has always been here but the definition had not taken everyone into account — this is not the full explanation. It is not a satisfying answer.
The answer is much subtler and complex than just to explain it as the broadness of the spectrum. While reading Silberman’s book, Neurotribes: The Legacy of Autism and the Future of Neurodiversity, something inside of me broke into a hundred pieces. I was conscious of a very familiar, very old feeling, one that wound its way around my throat like a python.
This was the way I felt when I read a Holocaust book.
The way Holocaust books go is you pick one up and you think, “Another Holocaust book, don’t I already know how horrible it was?” And then I read it and I learn a new thing, some terrible other thing those monsters did, and the horror grips me all over again. One time it was the piles and piles of shoes left behind after the gas chambers. Another time it was the forced surgeries, without anesthesia. Soap and lampshades from skin. Or when a parent was forced to choose between children, or an adult son who let his father die in the ovens to save himself. Being a Jew, I naturally relate to the stories of the 6 million, though of course I’m aware of and horrified about the other millions of people: Catholics, gays, disabled. The millions in Stalinist Russia too. So much sad and gruesome death last century.
And here we have Steve Silberman, in making his case for the missing autistics of the past, talking about how the Nazis treated autistics, and the other populations. Showing us the scorn the Aryans had for autistic difference, but also showing us that this was nothing new.
I’ve always known about the institutionalization of people with intellectual and developmental disabilities, or the euthanasia of some, or those locked in an attic. But I never actually realized how many we were talking about. Silberman has searched the records of psychiatrists, institutions, sifted through tiny details like an archaeologist, and he has unearthed an entire lost people: the autistics of the past.