The Real Autism Tsunami

neurotribesWith a deft and gentle hand Silberman has reconstructed the diaspora of autism. And it is a heartbreaking account of lost souls, misunderstood, reviled, shut down and shut away lives. Silberman has effectively proved that the people we see now, up and down the spectrum, have indeed always been here, but because there was so little understanding of what to do with the “feebleminded,” as they were called, the “useless eaters,” the sick and irrevocably strange and different were sent away to institutions or languished at home or worse. Anyone with even a little autism was thought to be mentally deranged, broken. There was no cultural belief in special education, no awareness of how human minds can be taught just about anything. There had to be an evolution, centuries, millenia-long, before people understood that these beings are every bit as human as the rest of society, and thereby able to learn, grow, adjust, work, and be part of Us.

Silberman says, “In an eerie preview of the autism ‘epidemic’ to come four decades later, the prevalence of childhood schizophrenia started spiking in the midtwentieth century.” Just as we had an onslaught of people with ADHD when we first discovered it — and it became the diagnosis of the 90′s — just as bipolar is right now — childhood schizophrenia was one very popular explanation for people who were actually on the autism spectrum. That accounts for the deeply-involved, most disabled autistics.

And these were the people whose families were educated and well-off enough to even know to bring them to the few psychiatrists in the country at that time. Silberman finds that French physician Edouard Seguin coined the term ‘idiot savant’ as far back as 1869.Seguin wrote,“It is from this class, almost exclusively, that we have musical, mathematical, architectural, and other varieties of the idiot savant; the useless protrusion of a single faculty, accompanied by a woeful general impotence.” The real hero in the book, Hans Asperger, though practicing in the early 20th century, put this in a humane, 21st century light: “Autistic children have the ability to see things and events around them from a new point of view, which often shows surprising maturity. This ability, which remains throughout life, can in favorable cases lead to exceptional achievements which others may never attain. Abstraction ability, for instance, is a prerequisite for scientific endeavor. Indeed, we find numerous autistic individuals among distinguished scientists.” This was almost 100 years ago. This accounts for the Asperger types, the splinter skills.

Think about it. A child who presented as odd, to the point of not being able to talk until he was around five, and then, after that, presented as so strange, so unaware of or unskilled around others — Temple Grandin comes to mind — with no precedent of what speech therapy, sensory integration therapy, etc., could achieve — the common thing was to give up on this child.  So even the “higher-functioning” would have been put away. Yes, there were many many institutions back then.  More than you realize. And what happened there? They likely became worse, thereby proving the doctors “right.” Crowded into rooms without pants on and hosed off when they defecated. Things like that. Some of these people of course ended up in jail. Some — well, it’s too horrible to contemplate what a cruel, ignorant family might have done.

The Nazis exterminated the disabled first, before they got to the elderly or the Jews. No, we did not send our monsters to the gas chambers, but we did treat them like shit. They were mistakes, burdens, disgusting, useless, scary.

Without education, and without understanding the potential of people with autism, it would have taken a remarkably unique person (like Hans Asperger) to feel anything but fear and shame. About Asperger, Silberman says, “He christened this distinctive cluster of aptitudes, skills, attitudes, and abilities autistic intelligence, making the bold suggestion that autistic people have played an unappreciated role in the evolution of culture:

‘It seems that for success in science and art, a dash of autism is essential. For success, the necessary ingredient may be an ability to turn away from the everyday world, from the simply practical, an ability to re-think a subject with originality so as to create in new untrodden ways.’

But even the parents who would not give up on their children despaired of what to do with them and they would have to send them away because there was no known alternative. I often wonder what would I have been like during the Holocaust: a rebel with a gun, shooting at Nazis and hiding in the woods? A victim, too scared to move? Or someone who was wise enough to see what was coming, and got out in time?

And what would I have done as a parent of Nat one hundred years ago? I pray to God I would have said, “Fuck no,” to the psychiatrists and raised him to be the good man he is.

The autistics have always been here. We just did not see them, and if we did, God help them. Now we see them. They aren’t sent away, hidden, cast out. They are sent to school. They are trying to get work, any work, for at least minimum wage.

The real Tsunami? The real disaster? That we don’t have enough funding for all of these very different but very worthwhile people to live productively after high school.  The real puzzle? When are we going to wake up, treasure difference, and learn from it?

Reprinted with permission. The original can be read here: The Real Autism Tsunami

About Susan Senator

Susan SenatorSusan Senator is an author, English professor, and disability advocate. She is best known as Nat’s Mom. Susan has written two autism parenting books (“Making Peace with Autism” and “The Autism Mom’s Survival Guide”) and her latest book “Autism Adulthood: Strategies and Insights for a Fulfilling Life”) will be out April 2016. Her work has also appeared in the New York Times Magazine, the Boston Globe, and the Washington Post. She writes a blog about autism, parenting, and living happily,   Follow Susan on Twitter.