Susan's Blog

Thursday, September 24, 2015

The Real Autism Tsunami

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.

With 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?




This post is quite eye-opening and explains a lot.

— added by Sue on Thursday, September 24, 2015 at 2:19 pm

Susan, this is fascinating and I am newly reminded of a family story about my great aunt, who was born in the early 1900s. My dad’s cousin recalls her as quiet, excellent with numbers and socially awkward. The family made sure she had a place with them — with the parents until their death, and then she lived on her own (with some family support) until she died in 1980. Today, they think she was on the spectrum. Back then, she was just Helen.

“It seems that for success in science or art, a dash of autism is essential.” That should be the quote heard ’round the world.

— added by Rebecca on Thursday, September 24, 2015 at 2:31 pm

As always your analysis is spot on. <3

— added by Donna on Thursday, September 24, 2015 at 3:31 pm

Susan I have thought this forever. When I first started in 1983, one little boy at our school had parents and grandparents from Italy. She took her grandson to Italy to have him exorcised, deeply loving him, but also deeply believing that some “devil” was in him. She said that had been common all her life. Needless to say, he came back still very cute, and still very autistic. He used to yell out “meow” really loud when he climbed a tree which really freaked out the golfers adjacent to our school. And that is just one child.

— added by michele on Thursday, September 24, 2015 at 5:49 pm

Wow! This resonates with me. Why the increase in numbers of autistics. It didn’t make sense. Misdiagnosis doesn’t do it. Of course it had to be all those people who were locked away in institutions, etc. What a senseless waste of human talent.

— added by Shelly Senator on Thursday, September 24, 2015 at 6:23 pm

Thanks for this, Susan. I learned something new from your take, too. I have neurotribes on my desk but have been avoiding it. I think I won’t now.

— added by Joel Yanofsky on Thursday, September 24, 2015 at 6:51 pm

[…] [Susan Senator, “There had to be an evolution, centuries, millenia-long, before people understood that these b…] […]

This is a beautiful, heartbreaking reading of NeuroTribes and one that expressed so eloquently something that I could feel and could not put words to after I had read the book. Humans (not only Nazis) are so quick to dehumanize The Other – and it is a positive message to call it out and demand change.

— added by Stuart Neilson on Friday, September 25, 2015 at 3:52 am

My mind has often wandered to what happened to most people with most disabilities in the past, and what still happens now in many places in the world. And then it becomes too painful to contemplate any further, and I have to shut it down and turn my loving eyes and hands and heart to my daughter and to the fascinating and wonderful individuals with autism and assorted other labels that I get to know and sometimes work with. I am so grateful to be living in the now and in the here, however flawed in terms of how much and what we offer to Spectrumites and others with differences. I also have great hope for the future, and often choose to believe it can only get better. Thanks as always for bringing perspective and reason to the ongoing conversation.

— added by Melinda on Friday, September 25, 2015 at 5:33 am

Susan, you modestly omitted any reference to the story about you and your family near the end of Chapter 2 (the cure and recovery industry).

The wonderful support you have given Nat has sent ripples out there into the universe, and we are all better off for that.

— added by Michael Forbes Wilcox on Sunday, September 27, 2015 at 6:51 am

Michael: <3

— added by Susan Senator on Sunday, September 27, 2015 at 8:18 am

My husband has become a quite good amateur genealogist and in doing some of the background on our families I had a chance to ask my mom before she passed away about “Uncle Willie”. Uncle Willie was on my father’s side (his uncle). He was an adult man who worked with his hands in the trades his entire life. He would never speak to women at all. He would speak only to men and only infrequently at that. In the way that people lived in the early 1900’s, it was a multi-generational house in the Heights in Houston. So Uncle Willie had support. My mother would cook and clean and Uncle Willie never spoke a word to her ever. I felt a chill when my mother described this. She had just put it down for odd/hated women. I immediately felt autism. There is a lot of mental illness on my father’s side of the family. He was pulled out of school for a time to care for his mother who was sent away to “the country” because of her behavior in the neighborhood. They were always there. At least in Texas, they were.

— added by Carolyn Hyman on Sunday, September 27, 2015 at 10:50 am

Amazon Prime has an original series “The Man in the High Castle” about a dystopian alternate history of the 1960’s where the Nazis won WWII.

In one scene in rural America, the show’s main character notices snow in the middle of the summer. The policeman says, “Oh, that’s just the hospital. The burn the feeble and cripples on Tuesday”


— added by Andrew on Tuesday, September 29, 2015 at 6:23 am

🙁 I think you’re right, Carolyn.

— added by Susan Senator on Tuesday, September 29, 2015 at 6:25 am

Susan, I’ve been meaning to buy this and you’ve just inspired me to do so. I often shudder when I think of what might have happened to Justin if he’s been born fifty years ago. Not a day goes by that I’m not thankful that he can go to school and has had the services that have helped him so much. Thanks for this insightful analysis!

— added by kim mccafferty on Tuesday, September 29, 2015 at 10:21 am

Wonderful, chilling insights. Thank you. My maternal grandmother, who immigrated here with my mom and siblings after WW2, lived alone her whole life and was to my understanding just not typical. She could be very loving but also very difficult. She became obsessed with things and ideas. Never formally diagnosed until her mid 80s when the doctors in the nursing home where she lived after an injury said she was likely schizophrenic. I’m now fairly confident she was on the spectrum and often find myself wondering how much happier she might have been given the right support instead of being written off as the town oddball.

— added by Audra on Saturday, October 24, 2015 at 10:15 am

Yes. You have described me in there. Diagnosed in the early 70s, but my mother chose to hide the diagnosis out of shame, so schools treated me like a behavior problem, a bad child. I had one teacher tell me I would end up in prison, another force me to spend the school days in a cardboard box, telling my classmates she had to because it made her sick to look at me.

I was bullied and abused by both students and teachers and dropped out of school when my disgusted mother pushed me out of the house at age 15. Most of my 20s are a blur of homelessness, periodic institutionalizations, and a struggle to survive. When I finally applied for disability in my late twenties, my case worker was overwhelmed by my stack of paperwork, each piece bearing some different diagnosis. She took my case seriously and had me on SSI in six weeks.

In my 30s, a doctor shocked my by suggesting that I am Autistic. After a battery of testing that lasted several days, the hunch was confirmed. I was grateful that someone worked so hard for me but clueless what to do with the information or how it would change my life in any way.

Fast forward to now, age 48, and I’m doing something I never thought I would be able to do: working on building a career. I write. I travel. I have several speaking engagements booked next month. I sometimes get heckled by people who say I have things “too together” to really be Autistic, but they did not see me at age four of age seven or age twenty-four. I’ve had decades to work my way to this point and only isolated mentorship along the way until recently. I spent most of my life tossed in the wastebasket.

There is no tsunami. We have always been here. Few people seeing me rummage through a dumpster for a meal would have thought “autistic.” Most of the world sees an adult living at the bottom of life’s barrel and assumes we earned that low status through our own choices, actions, inactions. I needed some paperwork from my mother a while back and she admitted that parts of my history had been hidden, not just from me but from the schools as well. She thought she was doing me a favor, saving me from stigma, offering the chance to make it on my own without the “crutch” of a diagnosis. Instead, she set me up for failure after failure.

I am only now beginning to succeed. At middle age, I feel like my real life is finally starting. Thank you for writing about the invisible ones.

— added by Sparrow Rose Jones on Saturday, October 24, 2015 at 11:19 am

Hey, SparrowRose, Rock ON!!! You are my new idol.

— added by Susan Senator on Saturday, October 24, 2015 at 12:01 pm

ew (Andrew’s show)

— added by Susan Senator on Saturday, October 24, 2015 at 12:09 pm