What’s the rest of the story of Asperger and autism?

Last summer, we learned how the autism diagnosis crossed the Atlantic in the late 1930s.  The discovery that two Austrian clinicians made their way from the hospital where Hans Asperger got his start to Dr. Leo Kanner’s clinic in America was an outstanding piece of research and discovery from Neurotribes author Steve Silberman.  I wrote about that on this blog in August.

Steve’s writing piqued my curiosity, and I did some research into the Vienna scene and what happened to the doctors after the Nazi takeover, given that so many of them were Jewish.  What I found surprised me.  The record did show the two Jewish clinicians fleeing to America, while Catholic Asperger stayed in his job and was promoted.  That was just as Silberman said. He described Vienna as the center of the world for psychiatry, and psychology in the first part of the 20th century. The Nazi takeover scattered those creative minds all over the western world, to the benefit of countless recipients of their knowledge.

Vienna’s loss was our collective gain, no thanks to the Germans.

The two clinicians he describes – Anni Weiss and Georg Frankl – were a small part of a large forced migration that transformed psychiatry here and elsewhere, as they brought new ideas to our clinics. One of those ideas being our modern concept of autism.

There is now substantial evidence that autism was being characterized—but not named—in Vienna in the late 19th century, and Weiss, Frankl, and Asperger built on that and the work of their mentors.  When the insights were finally published, there was a war going on, and Asperger’s paper was hardly noticed.  Meanwhile, backed by the Viennese insights, Kanner made autism his own with the publication of one paper after another.  Weiss and Frankl married, and continued working with children of all sorts at American universities. For them, autism seems to have been one interest among many.

We will probably never know how much Kanner knew of autism when Weiss and Frankl came on the scene.  It would be wrong to say they brought all the knowledge, yet I feel sure they made a significant contribution.  

In Neurotribes, Silberman describes a young Anni Weiss at the University of Vienna, and her insight that a supposedly feeble-minded child in the clinic was not feeble-minded at all, but had an intelligence that conventional tests couldn't measure. Today that would be a common observation when evaluating an autistic kid, but in 1935 it was revolutionary, and totally unknown in America. That's an example of the thinking that grew in Vienna before the war.

In my own research, I learned that Weiss brought that knowledge with her to America, where she made a career in psychology, specializing in evaluation of IQ.  In this country, she would test supposedly less intelligent minorities, and people with disabilities, with the same insight she deployed in Austria.  There was always more than met the eye, and she made it her work to find it. 

That's the nice part of the story - Jewish doctors bringing wisdom and insight to America for the benefit of disadvantaged people.  What about the doctor who stayed behind? That's where we have another disturbing revelation. This one comes from John Donvan and Caren Zucker, authors of the forthcoming book In A Different KeyThe Story of Autism. They present shocking material that casts light on who Dr. Asperger really was, and shatters the myth of the kindly doctor who devoted his life to caring for kids.

I first heard of the material that’s in A Different Key this summer, when I was at the College of William & Mary. The story was shocking enough that I even remember where I was—looking out over our sunken quadrangle.  As soon as I could, I set out on my own search. And I quickly found enough to feel very disheartened about the word Asperger’s as a name for how I am different. 

Here’s the thing:  Up until then, all the stories I had read described Dr. Asperger as a gentle physician who put his own life at risk for the sake of his kids.  He was kind.  He loved us.  He was our friend.   Many accounts over the years have built on that position.  It’s discussed on forums like Wrong Planet.  It was even discussed when the Asperger diagnosis was added to the DSM, and Fred Volkmar was assured Asperger was never a Nazi.  His daughter Maria Felder Asperger always spoke of his kindness.

I had some doubts about Asperger’s kindness already, even as I was impressed by his intellect.  Several years ago, in my role on government autism committees, I listened to allegations of all the “new things” that were appearing in autistic kids.  In response, I asked the folks at NIH's Office of Autism Research Coordination where I might find the original writings of both Kanner and Asperger. 

Even now, when I recall reading those old papers, I recall being stuck by Asperger's insights. I felt the whole scope of the autism spectrum was laid out. Our mix of gift and disability was amply demonstrated.  The fact that autism runs in families was obvious to him, in 1937. Even regression - a supposedly new phenomena - was observed. The tragedy was that so few people took advantage of his insights, and we had to "re-discover" much of his work in the past 20 years. Asperger's power to observe and record what he saw and felt is striking, and enduring.  That part of the story was handed to me in the original writings 5 years ago, and shared with the broad public recently in Neurotribes.

Yet I also saw another side to him, in the tone of the writing.  It was cold; hard; unsympathetic. While people like me were capable of exceptional things, we were mostly disabled (my paraphrase of his words.)  More disabled autistics were caricatures, clowns deserving of nothing more than pity or laughter.  When I read his words I thought, “This guy was no friend of my kind.” 

Kanner's early writing contained a lot of wisdom too, but he made a few critically different judgements.  Most importantly, IMO, he saw proto-autistic parents as "refrigerator mothers" where Asperger saw them as "affected like their children."  And because of that, Kanner believed the kids would be better institutionalized, a view Asperger did not always share. At least that's my read on his words.  But at the same time, his writing felt much gentler.   People pooh-poohed my suspicions about his feelings, saying Asperger was just talking as a conservative German in the 1930s.  Others said he had to be careful because of the Nazis looking over his shoulder.  Several years passed and the Different Key book appeared in my mailbox.

In it, I read how Asperger sent "uneducable" kids to their deaths, knowingly.  I just can’t see him in a good light anymore, knowing that truth.  Why he did it may be the subject of endless speculation.  That he did do it, should not.

That is the thing that comes out in A Different Key, in the two chapters starting on page 316.  Donvan and Zucker talk about Vienna in the years before WWII.   Neurotribes had described the scene in Vienna too, but he covered different aspects, like the work of Weiss and her predecessors at the University clinic.  One of the places they both mentioned was Dr. Jekelius and his Spiegelgrund clinic where hundreds of “defective” children were deliberately killed. Then they were dissected.  After the war, hundreds of child brains were found stored in the basement, in a macabre museum.

On page 340 of Different Key, you'll read of Hans Asperger recommending that a mother of a two-year-old girl who was “surely an unbearable burden” send her for “permanent placement” at Spiegengrund.  Three months later the girl was dead, and in later records it appears that Asperger and the mother agreed she was in a better place. With her brain in a jar, and other parts elsewhere.

Later, another Asperger letter dispatched 26 boys and 9 girls from a lower Austrian mental hospital for “Jekelius action” as quickly as possible.  That’s what’s in the book.  I’ve seen the original presentations of that material, and as best I can translate it, the book tells the hard truth.

There’s more out there, including confirmation of the death of those kids and the killing of another kid Asperger had diagnosed with what Asperger had called autistic psychopathy. It’s there – mostly in German - if you care to go looking.  

The story is much broader than autism.  Spiegelgrund is truly one of Austria’s dirty secrets, a deadly nightmare guised as a hospital, though some truth was aired in TV documentaries over the past decade.  We think of Nazis as targeting Jews, but these kids were not of any particular race. They were just injured, impaired, or mentally ill. Some were just different.  . . . and they deserved protection, not death.

For years people said, “Asperger wasn’t a Nazi,” but in a job application he had written that he was a candidate for the Nazi Doctor’s Association.  So much for anti-Nazi.  No one forces us to make such claims on job applications. That's not joining the party, but it's sure skating the edge.

These disclosures originally emerged thanks to Herwig Czech, a researcher of medical history.  The essence was published in Austria four and five years ago, but being in German, it spurred no discussion here.  I suspect that is about to change.

The question now is, why did Asperger do it?  

The idea of doctor or family assisted suicide is a very controversial topic today, and it’s illegal most everywhere, even though it has some proponents.  The idea of parents consigning their kids to death is universally condemned, particularly among the disability rights community.

But this happened 85 years ago.  Are we to overlook it because “that was what they did then”? 

For the second set of kids, we have Asperger’s judgment that the kids were uneducable, and without potential.  So they were sent to be killed.  Out of 210 kids in the institution, are we to accept that killing 35 was necessary to save the rest? 

That is a possible argument.  But actions like that are not without consequences in postwar life.  Does it make Asperger a criminal?  I don’t know. What I do know, is that I would not want that doctor around me or my kids today.  If I were a kid in his clinic, would I have made the cut and survived?  Would my son?  Let me assure you, it's not a good feeling.

So how do I feel about having a diagnostic label attached to me, in honor of his name.  I’ll tell you.  It makes me glad it’s all consolidated into the Autism Spectrum.

There’s more to In A Different Key than this story, just as there is more to Neurotribes than the story of Asperger’s colleagues joining Kanner in America, and his overview of prewar Vienna.  These are two 500-page books, so the story I share with you here is really a footnote for those authors.  But it's very personal to me, having been diagnosed with this Asperger's Syndrome 18 years ago.

I suggest you read both books, because this is just one of many different perspectives you will encounter between them.  Some stories are nice, while others are ugly.  A smart reader can take benefit from them all. Afterward, give this some thought and let me know what you think.

In putting these thoughts together I must acknowledge a debt to Tom Insel, Alan Guttmacher, and Susan Daniels at the National Institutes of Health, who set me on this trail 5 years ago by pointing me to the original works of Kanner and Asperger when I asked about the origins of autism knowledge. Then Steve Silberman brought a thousand new ideas with his book last year. And now John Donvan and Caren Zucker with their book and its revelations this winter. Without all of you, I would have nothing to ponder.

POSTSCRIPT:  If you are horrified by the revelation of Asperger's ethical choices in wartime, you may be tempted to run from anything he ever said or did.  Don't.  The fact that he did things you would never countenance today does not diminish by one iota the scientific value of his work. Despise the man, if you wish, but admire the work.  That may be hard, but it's real. 

John Elder Robison is an autistic adult and advocate for people with neurological differences.  He's the author of Look Me in the Eye, Be Different, Raising Cubby, and Switched On. He's on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services and many other autism-related boards. He's co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar in Residence at the College of William & Mary in Williamsburg, Virginia. 

The opinions expressed here are his own.  There is no warranty expressed or implied.  While reading this essay may give you food for thought, actually printing and eating it may make you sick.

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