"Asperger's Children: The Origins of Autism in Nazi Vienna"

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02 Apr 2018, 7:23 pm

The author of this book is Edith Sheffer, a senior fellow at the Institute of European Studies at the University of California and based on her New York Times opinion piece will charge Hans Asperger with enabling Nazi genocide. The book is out May 1. The suspicion has always been around. In 2010 the accusation was aired at an Autism conference by a researcher into Nazi medicine Herwig Czech. The accusation gained significant notice when Czech's research formed the basis for a chapter in the 2016 book "In a Different Key: The Story of Autism" by John Donvan and Carol Zucker. Up until now, as far as I know, Czech has not made available his evidence. This will change when Czech publishes a "paper on this subject in the journal Molecular Autism". Since "In a Different Key" this most serious accusation has hung in limbo creating confusion for some of us that call ourselves "Aspie". Continue to use Aspergers and Aspie terms and directly and indirectly honor a man complicit in the murder of Autistics or drop the use of these words and be useful idiots for a vicious smear campaign against a man that did the best he could to save Autistics under horrific circumstances. Now the evidence can be vetted.


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15 Apr 2018, 12:27 pm

I would like to know how other Aspies feel about this --if Dr. Hans Aspergers was a Nazi or collaborated with Nazis
or sympathized with the Nazis --does this change your opinion of him and his work, and are you ready to wash your hands of him? No longer call yourself an Aspie or say you have Aspergers? I know people who were children in Nazi Germany. They describe it as a horrible place, a police state, where people did what they had to do to survive. So I'm willing to give Hans Asperger a little slack. Nevertheless, I concede he may have done bad things. Does this outweigh the good he did in laying the foundation for what we now call 'the autism spectrum?' As someone who spent most of her life undiagnosed and burdened with shame-, I willingly acknowledge the debt I owe to him, Nazi or not. Finally finding out 'what was wrong with me' and why I was different than other people was the most liberating experience of my life. enabled me to stand tall after slinking about for decades, and this would not have occurred without the studies done by Dr. Asperger. Washington and Jefferson were slave-holders; still, I'm not about to tear up the Constitution! People are composed of both good and bad; that's part of the human condition.



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15 Apr 2018, 2:28 pm

Was the Father of Asperger Syndrome an Accomplice to Murder? by John Elder Robison

Quote:
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.

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.

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 Key—The 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.

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.

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.

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.



Bolding mine

I mostly agree with the above and would not use those words to describe myself if I became convinced Asperger was a Nazi collaberater. All though I still use those words, when “A Different Key” came out I took away his picture on my Avatar. I also realize it is easy to sit here in 2018 America and judge the action of a person in a place and time where a wrong move meant being sent to a concentration camp. I am also a 60 year old who had attitudes and thoughts I find abhorrent today and many young people would want to cyberbully and get me fired for. I was silent in work situations even though I knew they were wrong because I knew speaking up would get me fired and would result in nothing but scorn from others because that is just how things were done then. Yet none of these things as bad as they were was nearly as bad as deliberately sending people to places where I knew they were going to be killed for who they were.

Like for you this question is very difficult for me for similar reasons. I know today there is a big backlash against “identity politics” and for good reasons. But like with you at age 55 finding my aspie identity after waddling through life not knowing who I really was a big big deal. Hans Asperger is a main reason why I will die knowing who I truly am. I also do not believe in erasing people from history because their actions or attitudes are triggering. Then you add my autistic difficulty with change and this is just hard. I also understand that these revelations will be weaponized against those of us who believe in the Autism Spectrum and Neurodiversity. But using his name as an identity is way of honoring him and that is not something I would be comfortable doing for a person I was convinced deliberatly sent my own kind to their deaths. Recognize yes, honor no.


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19 Apr 2018, 2:33 am

Herwig Czech’s study is now out and has been made public
Hans Asperger, National Socialism, and “race hygiene” in Nazi-era Vienna

The study shows while Asperger was not a raving Nazi, his raving Nazi bosses saw him as no threat. It is shown that Asperger is what in today’s terms would be called ableist towered the low functioning. The study demonstrated that seeing usefulness of the “mildly disabled” was in line with Nazi thinking. The paper claims there is little evidence that Asperger surreptitiously undercut Nazi genocide as has been the mainstream narrative over the past 25 years or so.

Thanks to loborojo for this Guardian article on the topic which had the hyperlink to the study posted above
Hans Asperger aided and supported Nazi programme, study says Eight-year study finds pioneer of paediatrics assisted in Third Reich’s euthanasia programme

Quote:
In a joint statement, the editors of Molecular Autism – Simon Baron-Cohen, Ami Klin, Steve Silberman and Joseph Buxbaum – said they welcomed the fact that Czech’s “meticulous research” had finally thrown light on decades of scepticism about Asperger’s claims that he had taken a caring approach to his patients.

“The degree of Asperger’s involvement in the targeting of Vienna’s most vulnerable children has remained an open and vexing question in autism research for a long time,” they wrote in a joint statement.

The historian admitted that his findings might well be painful for autistic people and their families to digest, but said he was obliged to reveal them.

“It would have been wrong for me to have withheld this information, however difficult it might be to hear,” he said. “At the same time, there is no evidence to show his contributions to autism research were tainted by his problematic role during National Socialism. So purging the term Asperger from the medical lexicon would not be helpful. Rather, this should be an opportunity to look at the past and learn lessons from it.”

Carol Povey, director at the National Autistic Society in the UK’s Centre for Autism, said: “We expect these findings to spark a big conversation among autistic people and their family members, particularly those who identify with the term ‘Asperger’. Obviously no one with a diagnosis of Asperger syndrome should feel in any way tainted by this very troubling history.”


Here is the statemnt in full from the editors of Molecular Autism which published the study.
Quote:
Simon Baron-CohenEmail author, Ami Klin, Steve Silberman and Joseph D. Buxbaum
Molecular AutismBrain, Cognition and Behavior20189:28
https://doi.org/10.1186/s13229-018-0209-5© The Author(s). 2018
Received: 14 March 2018Accepted: 20 March 2018Published: 19 April 2018


In this issue of Molecular Autism, we publish an article by Herwig Czech, a historian of medicine at the Medical University of Vienna. His carefully researched article concludes that the pediatrician Hans Asperger, after whom the subgroup of Asperger syndrome was named, and who worked in the University of Vienna Pediatric Clinic during the Second World War, not only collaborated with the Nazis but actively contributed to the Nazi eugenics program by referring profoundly disabled children to the Am Spiegelgrund clinic located elsewhere in Vienna. This was a clinic that he knew participated in the Third Reich’s child euthanasia program, where children were killed as part of the Nazi goal of eugenically engineering a genetically “pure” society through “racial hygiene” and the elimination of lives deemed a “burden” and “not worthy of life.”

We take the unusual step of publishing this Editorial so as to explain our reasons for publishing this article. Two of us are Editors-in-Chief of Molecular Autism (SBC and JDB), one of us served as Action Editor during the long review process of this article (SBC), and two of us served as anonymous reviewers for this article, but have decided to forgo their anonymity (SS and AK).

We write this Editorial for two reasons. First, to assert the importance of this kind of scholarship and its relevance to this Journal, which aims to publish excellent research into autism of any kind, whether the research focuses on the molecular, neurological, psychological, clinical, or in this case social aspects. Second, to underline our support of this article for exploring in meticulous detail how a medical doctor, Hans Asperger, who for a long time was seen as only having made valuable contributions to the field of pediatrics and child psychiatry, was, as Herwig Czech’s newly unearthed evidence shows, also guilty of actively assisting the Nazis in their abhorrent eugenics and euthanasia policies. We are persuaded by Herwig Czech’s important article that Asperger was not just doing his best to survive in intolerable conditions but was also complicit with his Nazi superiors in targeting society’s most vulnerable people.

We will not repeat the evidence and main findings of Herwig Czech’s article here but will note that the conclusion concur with a new book on this topic, published in 2018, by Edith Sheffer, and entitled Asperger’s Children: The origins of autism in Nazi Vienna. Like Czech, Sheffer compellingly makes the case that Asperger willingly became a cog in the Nazi killing machine, referring children both directly and indirectly to Am Spiegelgrund. This was the clinic where children who were deemed genetically incapable of social conformity, or who had physical or psychological ‘defects’ that were deemed undesirable and assumed to be genetically determined, were kille


Any attempts to read the mind of an historical figure based on writing and circumstantial evidence is subject to error and interpretation. Czech does not shy away from this. While he uncovered new evidence as Czech noted gaps remain.

There has been speculation that Asperger himself had the condition named after him. Whether he surreptitiously undercut genocide or just “went along to get along” his success in integrating himself with Nazis who were known for maticulousness and paranoia strongly argues against this theory.

Those of us who identified as Aspie or lionized Hans Asperger have to come to the bitter conclusion that we did a very unaspie illogical thing. After years of being bullied and thinking we had charactor flaws we needed a hero and created one where one did not exist. The story of Hans Asperger as heroically undercutting genocide to protect people like us was always more Hollywood fiction then Nazi Vienna of the late 30’s and early 40’s, it was right there in front of all us, that we chose not to see it is on us.


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19 Apr 2018, 3:12 am

The additional information about Hans Asperger blaming children who were victims of sexual abuse for their abuse is unpleasant though not surprising, which was also mentioned in the Guardian article. (https://www.theguardian.com/world/2018/ ... study-says). The blaming of sexual abuse child victims continued well into the 80s in a widespread way and still continues today though has been muted by the eventual shift to holding perpetrators responsible - as they are and always were.

What miserable lives those children in Nazi Germany under his "care" must have had, loveless, stigmatised and treated as objects to experiment on and then dispose of (in many cases). The whole whitewashing of Hans Asperger was done by educated people, who saw what they wanted to see and used that tunnel vision, wilfully or not, to further their own careers. I have never had any time for Frith, her work always seemed self serving to me, just as Bettelheim's was, just as Lovaas's was. Their self interest and their "scientific views" became so entangled that I don't regard anything they claimed as objective or reliable.



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19 Apr 2018, 3:29 am

The study is being covered by a number of the major British and Australian papers as well as the BBC. The Times of Isreal and a French site is covering it


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19 Apr 2018, 3:42 am

Was this the real reason that "Asperger Syndrome" was dropped as an official diagnostic category? That is, was it dropped because of this political controversy (as known to insiders), rather than for scientific reasons (as represented to outsiders)?


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19 Apr 2018, 4:11 am

:D

Darmok wrote:
Was this the real reason that "Asperger Syndrome" was dropped as an official diagnostic category? That is, was it dropped because of this political controversy (as known to insiders), rather than for scientific reasons (as represented to outsiders)?


The Doctor and the Nazis - Tablet Magazine 2016
Quote:
When the question was put to Lorna Wing in 1993, in a transatlantic phone call, she was shocked by it.

Was Hans Asperger, as a young man, a Nazi?

Wing was the influential London-based child psychiatrist, globally recognized as a leading expert on autism, who had brought Asperger’s syndrome international recognition.

Fred Volkmar of the Yale Child Study Center felt uncomfortable even asking it that day in 1993. But he believed he should, because doubts about Asperger’s character had been raised. And a decision had to be made quickly about whether to posthumously honor Asperger by naming a condition after him in the DSM, the Diagnostic and Statistical Manual of Mental Disorders, the “bible” of psychiatry.

Volkmar’s Yale Child Study Center was the leader in Asperger’s research in the United States

Eric Schopler, for one, was convinced of it. A psychologist based at the University of North Carolina at Chapel Hill, he was director and lead designer of Division TEACCH, the nation’s first-ever statewide public school program devoted to educating children with autism, which launched in 1971. As such, he was for many years America’s most respected authority on autism, certainly among his colleagues. He was also among those who considered Asperger’s ideas superfluous to the understanding of autism, not to mention sloppily conceived. His attacks on Asperger’s work in the 1990s were noticeably personal, reflecting an antipathy not justified by mere professional disagreement. “The seeds for our current syndrome confusion were sown in the rich soil of his few publications,” he once wrote. In Schopler’s view, Asperger had never “succeeded in identifying a replicable psychiatric syndrome.”

Schopler’s antipathy can be understood as the bitterness of a man who, as a child, had to flee Germany with the rest of his Jewish family, and who remained suspicious of any adult—German or Austrian—whose career as a medical professional had thrived during the Nazi era. He had no more to go on than that; it was guilt by association. But this did not prevent him from launching a one-man whisper campaign to the effect that Asperger had probably been a Nazi sympathizer, if not a collaborator or actual party member. More than once, Schopler dropped such innuendos in print, in publications he oversaw, such as the Journal of Autism and Developmental Disorders. There and else¬where, he pointedly made reference to Asperger’s “longstanding inter¬est in the German Youth Movement,” hinting at a connection between Asperger and the Hitler Youth. Still, perhaps because Schopler kept his allusions subtle, most people who knew of Asperger’s syndrome in the 1990s were unaware of any controversy concerning Asperger’s past.

Volkmar, for example, did not hear about it until late in the DSM review process. But it was not Schopler who brought it to his attention. During the field trials Volkmar was running in order to test the pro¬posed criteria for Asperger’s, two Yale colleagues he held in high esteem raised the subject. One, Donald Cohen, the longtime director of the Yale Child Study Center, had published widely on autism. The other was a young star in the field, a clinician and investigator named Ami Klin. As a psychology PhD candidate in London, Klin had caused a stir with a brilliantly designed study showing that autism affected children’s responses to the sounds of their mothers’ voices. It had been Cohen who personally recruited Klin to Yale in 1989. The two men formed a close mentor-protege relationship based on both a fascination with autism and a powerful sense of Jewish identity. Cohen was an observant Jew and a dedicated student of the Holocaust. Klin had been born in Brazil, the son of Holocaust survivors, and had earned his undergraduate degree in history and political science at Hebrew University in Jerusalem.

The question the two men kept turning over was whether Asperger might be implicated, in any way, in the medical atrocities ascribed to the Nazis who ruled Vienna. Both knew that the medical profession had already embarrassed itself by its failure to ask this question about several doctors and researchers who had practiced under the Third Reich. Modern textbooks still carried references to diseases named for Nazi-era scientists whose ethics were repellent, if not criminal, such as neurologists whose significant discoveries were made by dissecting the brains of children and adults murdered by the Nazis. A Dr. Franz Seitelberger of Vienna had been a member of the SS, while Professor Julius Hallervorden of Berlin was known to select live patients whose brains he planned to study after their deaths by “euthanasia”

In short, Volkmar could get little information about Asperger on his own, and had no true “Asperger expert” to turn to. It was in that context that he called Lorna Wing, the one person he knew who had met Hans Asperger (one time, over tea), and posed the question to her: Was Hans Asperger, as a young man, a Nazi?

Lorna Wing gasped. “Hans Asperger, a Nazi?” He could hear her indignation. She spoke of his deep Catholic faith and lifelong devotion to young people.

“A Nazi? No,” Wing said. “No, no, no! He was a very religious man.”

It was a short conversation, but it settled the issue.

A few months later, the DSM-IV appeared. Ninety-four new mental disorders had been proposed for inclusion, but only two made it. One was Bipolar II Disorder. The other was Asperger’s Disorder.

The “benevolent doctor” version of Asperger had strong appeal, and would inform many assessments of his work. Indeed, an overwhelmingly positive narrative of Asperger as a man of moral rectitude came into focus in the new millennium, elevating him almost to the status of hero.


I have seen no evidence that in America home of the DSM there was much suspicion about Asperger at the time Aspergers Disorder was dropped. Dropping it was about a feeling that Aspergers was over diagnosed costing insurence companies and school districts money.

I did read a theory that Leo Kanner who was a Jewish emigre did not not recognize Asperger even though he knew about him due to his suspicions.


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19 Apr 2018, 5:30 am

Cui bono? In my view, asking the ancient question of who had the most to benefit from the dropping of Asperger's Syndrome solves the issue of why it was dropped. It would not surprise me either if the committee were wooed with inducements, in the same way that Big Pharma offers inducements to health practitioners to get them to do what the companies want.

I don't think the DSM committee cared one way or another what Hans Asperger was. They have accrued power and they misuse it under the cloak of science. Just as Asperger himself did in his time.



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19 Apr 2018, 9:09 am

Hi, I made this account after I got diagnosed but never really stuck around or never really did anything with the autistic/aspie community in general just carried on in my own little secluded world but I read this news earlier and I've had a bunch of weird conflicted feelings and thoughts and I guess I just wanted somewhere to let it out, then I remembered I have an account on this place! So here goes.

A bit of background: I was diagnosed with Asperger's pretty late at the age of 30 after my mother suggested I might have it. I disagreed with her but eventually she persuaded me to see the doctor and then went through evaluations etc. I felt pretty bad after the diagnosis and it took me quite some time to get to terms with it and accept it. Part of that acceptance was learning about the disorder with a post diagnosis group at my local autistic society and reading about it (general internet stuff and Neurotribes) and that involved learning about Dr. Hans Asperger who I learnt was a pretty good guy who did the best he could in terrible circumstances but who cared about the children and opposed the Nazis.

I guess perhaps that my coming to accept who I am and learning that this label 'assigned' to me by psychologists wasn't a bad thing is tied in with me learning about Dr. Asperger, and learning about how he was supposed to have helped and nurtured these children was a big part of accepting this identity. And this is making me feel pretty uncomfortable now that I read about how he was a Nazi collaborator who assisted in their child euthanasia programs. I dunno, it's like he was a part of my identity in some way and now it has been tarnished by this revelation. Another part of me is thinking that perhaps I never really accepted who I am and have never really come to terms with being diagnosed and this has just brought that back up. I dunno but something feels a bit wrong inside.

As I said I'm not involved with the greater community and spend most my time on my own or only talking to a very small group of close friends online. I find it pretty hard to express my thoughts and feelings but I felt like I needed somewhere to vent and try getting my mind in order. Maybe I'm making a mountain out of a molehill? I dunno. Apologies if I come across as disjointed and confused.



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19 Apr 2018, 9:20 am

Regardless of what he did or didn't do, he's still the discoverer of AS and the autistic spectrum. Same as how one of the fathers of quantum mechanics, Werner Heisenberg was also trying to make the atomic bomb for the nazis. All we can do is learn from history.



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19 Apr 2018, 2:24 pm

As I mentioned before the basic information was presented in the 2016 book "In A Different Key: The Story Of Autism" by American Broadcasting Company reporters John Donvan and Carol Zucker. It did cause a stir, WP had a thread about it, but the amount of attention that book received pales in comparison to the attention this article is causing. Much of the major media in the western world is covering the story. For many of us, this is the first time receiving this information.

Thinking Persons Guide to Autism: On Hans Asperger, the Nazis, and Autism: A Conversation Across Neurologies by Maxfield Sparrow and Steve Silberman

Quote:
How complicit was Hans Asperger with the murderous eugenic policies of the Third Reich in his role as the head of the Children’s Clinic at University of Vienna in the 1930s and 1940s? This painful question, which has vexed autism history for decades, has been reopened by the simultaneous publication of Edith Sheffer’s book “Asperger’s Children” and Herwig Czech’s paper in The Journal of Molecular Autism, “The child must be an unbearable burden to her mother. Hans Asperger, National Socialism and Race Hygiene in WWII Vienna.”

By unearthing new information from the municipal archives in Vienna that was mistakenly believed to be lost, Sheffer and Czech make the case that Asperger was more culpable than historians previously believed. They portray him as a calculating, ambitious young physician who never joined the Nazi party but was “prematurely promoted” over the heads of his Jewish colleagues as they were purged from the university in the increasingly anti-Semitic atmosphere of mid-1930s Austria. They also claim that instead of protecting his young patients from the Reich’s “racial hygiene” laws, Asperger was willing to go along with his Nazi bosses—even to the point of referring patients to Am Spiegelgrund, a mental institution where, during the war years, children with hereditary disabilities were put to death.

On the basis of this evidence, Sheffer, who is the mother of an autistic teenager, argues that the phrase “Asperger syndrome” should be consigned to the dustbin of history. Furthermore, she suggests that the spectrum model of autism—created by British cognitive psychiatrist Lorna Wing and inspired in part by Asperger’s 1944 postdoctoral thesis—should be re-examined in light of the troubling circumstances of Asperger’s work.

Czech doesn’t go that far. “Regarding Asperger’s contributions to autism research,” he writes, “there is no evidence to consider them tainted by his ambivalent relationship to National Socialism. They are, nevertheless, inseparable from the historical context in which they were first formulated… The fate of ‘Asperger’s syndrome’ will probably be determined by considerations other than the historical—the ambivalent historical circumstances of its first description should not, however, lead to its purge from the medical lexicon.”

While the new information uncovered by Czech and Sheffer is certainly disturbing, the fact that Asperger was working for Nazis when he wrote his influential thesis is not news. Steve Silberman’s “NeuroTribes,” published in 2015, outlined the hijacking of the Viennese medical establishment by the Third Reich after the German takeover of Austria in 1938 and the transformation of the University of Vienna from a mecca of learning to a center for “racial hygiene” propaganda. Silberman also revealed that two of Asperger’s Jewish colleagues, Georg Frankl and Anni Weiss—who were crucial in developing the compassionate model of autism that emerged from Asperger’s clinic—were rescued before the Holocaust by Leo Kanner, the child psychiatrist at Johns Hopkins who would go on to become famous after claiming to have discovered autism in 1943.

Then in 2016, based on their exclusive access to Czech’s research, John Donvan and Caren Zucker’s “In a Different Key” revealed Asperger’s complicity in child euthanasia, including the referral of a disabled girl named Herta Schreiber to Am Spiegelgrund. The US paperback text of NeuroTribes was also amended that year to reflect Asperger’s more problematic role. Since then, Czech and Sheffer have discovered even more evidence that Asperger became a willing cog in the Nazi machine.

The clinical term “Asperger syndrome” is already on the way out for reasons not related to the historical circumstances of the Viennese clinician’s work. It has already been removed from the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders or DSM-5, where the diagnosis was folded under the umbrella of “Autism Spectrum Disorder.”

For autistic people, however, Asperger’s syndrome is more than just a diagnosis. Since the 1990s, it has also served as a cultural identity for people on the spectrum who derive a sense of pride and community from the term “Aspie.” While most eponymous syndromes (syndromes named after those who discover them) could be renamed by medical practitioners with little impact on the people carrying the label, Asperger’s syndrome is different. The publication of Czech’s paper and Sheffer’s book—and the storm of clickbait media coverage that is sure to follow—has the potential to cause confusion and tribulation for autistic people and their families and allies.

To alleviate misconceptions and explore the dimensions of this impact, Thinking Person’s Guide to Autism has invited Steve Silberman, author of “NeuroTribes,” and autistic writer Maxfield Sparrow (formerly Sparrow Rose Jones), author of “The ABCs of Autism Acceptance,” “No You Don’t: Essays from an Unstrange Mind,” and a contributor to “The Real Experts” and other anthologies, to discuss the implications of this news.

Steve Silberman: The first thing I thought of when I read Sheffer’s book and Czech’s paper was the effects that they will have on autistic people who have tended to see Asperger as an ally from a past era of history. Max, how would you advise other autistic people to approach these texts?

Maxfield Sparrow: You are right, Steve, about the Autistic community historically viewing Asperger as our ally. I was identified as Autistic in 1974 (though I was unaware of that until 2015) and then re-diagnosed in 2001 as having Asperger’s syndrome. Shortly after my second diagnosis, I began participating in the Autistic community. I can’t remember when I first heard the Hans Asperger narrative, but for nearly as long as I can remember fellow Autistics shared the story: Dr. Asperger loved us and he wrote about the most “Nazi acceptable” of his patients and hid the others from view to save their lives—even to the point of allegedly burning his clinic records to protect the identities of diagnosed children. I believe that this Schindler-esque view of Asperger was (and still is) psychologically important to many Autistics. Aspies are no strangers to shabby treatment—from classmates, teachers, co-workers, even parents. There was something romantic about being named after a sort of father-figure savior who we believed saw our great value and protected us.

Although I am one of those who has let go of Asperger’s name and choose to only identify as Autistic, I’m apparently not as immune to that compelling apocryphal story as I’d presumed. When I was working toward a doctorate in political science, my chosen sub-field was history. Primary source documents and historical accuracy are sacred to me, so I thought I was prepared to read a more accurate history of Asperger’s words, actions, and presumed intentions. I was wrong. I have a pretty “strong stomach” when it comes to these topics and I didn’t need to skip over Aktion T-4 and the murders at the Kinderfachabteilungen when I read your book, difficult though those topics are. But Sheffer’s book hit hard. I already knew that Asperger was not the saint he was once portrayed to be, but I was not at all prepared for some of the nasty things he said about us, or how deep his co-operation with the Reich went. I would advise Aspies and other Autistics to approach these texts with extreme caution.

The hardest part for me was coming to realize how much the entire identification and naming of people with my neurotype was part of a tireless search to purge the Reich of all the non-compliant people. Asperger’s full name for our neurology was “autistic psychopathy” because our lower-than-neurotypical interest in social compliance was viewed as dangerous to the state. Sheffer says those identified as psychopaths were people “such as ‘asocials,’ delinquents, and vagrants” who “threatened social order.” We Autistics are still fighting lifelong battles against those who go to great lengths—sometimes abusive and deadly lengths—to force us to comply with their wish for us to not be Autistic. We still threaten social order. I opened this book thinking “history,” and closed it thinking “origins of an ongoing human crisis.”

Steve Silberman: Yes, I understand. I imagine many autistics will deservedly feel a sense of betrayal by Asperger for being complicit with the Reich’s racial hygiene policies, as if they’d discovered that their own grandfather had an SS uniform at the back of his closet. Herwig Czech has made a career of exposing the Nazi connections of figures in medical history like Walther Birkmayer, the Austrian neurologist who discovered the value of levodopa, which is still the most potent drug for the treatment of Parkinson’s disease. The uncomfortable truth is that many areas of science are tainted by Nazi associations.

Another compromised historical figure relevant to autism research is Andreas Rett, the discoverer of Rett syndrome. Like Asperger, Rett was implicated in Nazi eugenics policies, including the euthanasia of children, though he went on to become an advocate for the rights of disabled people after the war. The term Rett syndrome is still in wide use, with many people completely unaware of its Nazi associations. But because Asperger syndrome became a pop-culture phenomenon as people realized the truth of Asperger's observation that once you learn to recognize the distinctive traits of autism, you see them everywhere, this news may affect many more people.

I think the work of exposing the culpability of these historical figures is valuable and necessary, which is why I agreed to be one of the peer reviewers of Czech’s paper for the Journal of Molecular Autism. Because of my research on the Nazi context of Asperger’s work in “NeuroTribes,” the new information in Czech’s paper and Sheffer’s book did not come as a total shock to me. I had already rewritten the US paperback text of NeuroTribes—which has been out for two years—to reflect Asperger’s more problematic role, including his signature on Herta Schreiber’s death warrant. But there’s new information in Czech’s paper and Sheffer’s book that will have to be taken into account when appraising the totality of Asperger’s legacy.

For a long time, Asperger has been viewed mostly in a positive light; now the pendulum is swinging in other direction. But I suspect that the most realistic picture of Asperger is neither a Schindler-like savior nor a Nazi supervillain. He was, most likely, a complicated and conflicted man who belonged to a group of medical professionals that recognized the potential of “autistic intelligence” long before anyone else did but who was willing to go along with his Nazi bosses even when Jewish storefronts were burning in front of his eyes—an image that haunted me while I was writing my book, and coincidentally appears in Sheffer’s book as well. Czech and Sheffer admit that there is no way of knowing how many children Asperger may have saved from euthanasia by using his position—but one child sent to “permanent placement” at Am Spiegelgrund is too many. The willingness of clinicians to go along in the face of great evil is what made it possible for the Nazis to transform the Austrian medical establishment into an industry of death. If you weren’t risking your life by actively resisting, you became complicit in the horror that was created. That’s a heavy lesson for this historical moment, when government officials are routinely asked to ignore norms and ethics to fulfill various agendas.

While researching the Third Reich’s war of extermination against disabled people for “NeuroTribes,” I often found myself weeping at my computer thinking about the children who perished in places like Am Spiegelgrund. As a gay Jew and the son of Communists, I would have been condemned to death in a concentration camp several times over. When I sent a draft of my book to Shannon Rosa—who is one of the editors of Thinking Person’s Guide to Autism and the mother of Leo Rosa, the subject of the chapter called “The Boy Who Loves Green Straws”—she told me she was traumatized thinking of what would have happened to her son under the Nazi regime.

Maxfield Sparrow: I really relate to what you’re saying. As a gay, transgender Autistic, I would have been killed several times over, too. I have a history of asking the uncomfortable and forbidden questions, which makes me unpopular with authority figures. And many of my interests—which I tend to pursue with a characteristically Autistic tireless passion—would have condemned me, as well. For example, I’ve learned from reading Ulrich Lins’ La Dangxera Lingvo that my great love for Zamenhof’s constructed language, Esperanto, would have gotten me sent to a concentration camp or gulag. Sometimes I think I’m blending in and passing for neurotypical, but my Autistic neurology is always plainly obvious to anyone who understands what they’re seeing. It gets me in trouble all the time. I would not survive long in a “Fourth Reich.” There’s something I wondered as I was reading Sheffer’s book, Steve. Why was the first printing of “NeuroTribes” so kind to Asperger?

Steve Silberman: The consensus among German and English-speaking historians when I was doing my research was that Asperger actively protected his patients by emphasizing their potential usefulness to the Reich. For example, Asperger once suggested that his autistic patients could aid the war effort by working as codebreakers. As Czech makes clear in his paper, the notion that Asperger quietly resisted the Reich’s efforts to round up and exterminate his patients—even at risk of danger to himself—was the conclusion of nearly everyone who had ever written about the social context of his work, starting with Uta Frith, who translated Asperger’s 1944 thesis into English. The first paper to specifically examine Asperger’s role under the Third Reich, by Brita Schirmer in 2002, was subtitled “Hans Asperger’s defense of the ‘autistic psychopaths’ against Nazi eugenics.” Adam Feinstein, author of the 2010 book A History of Autism: Conversations with the Pioneers, concluded that “There seems to be no evidence whatsoever” that Asperger had “affinities” with the murderous views of the Reich, adding that “indeed the very opposite seems to be the case.”

The fact that Asperger never joined the Nazi party while many other medical professionals did added weight to the notion that he quietly defied the Reich while working within the system to his patients’ advantage. After the war, Asperger claimed to have been nearly arrested by the Gestapo twice, and specifically denied involvement in euthanasia. The reason I didn’t attempt to overturn that consensus was that I didn’t have access to the data in Sheffer’s book and Czech’s paper, which they deserve credit for uncovering. It was widely believed that Asperger’s case files had been destroyed during the war, but Czech found them in a municipal archive in Vienna. That’s where a lot of this new information is coming from.

Way back in 2011, soon after beginning my research for NeuroTribes, I heard rumors that Asperger had been more complicit with the Nazis than was generally believed. Someone claiming to be a friend of a well-known autism researcher told me that Asperger had “trained a unit of autistic super-killers” for Hitler. That story, and several others, turned out to be ableist nonsense based on little more than crude stereotypes of autistic people—in fact, when I finally got to ask that well-known autism researcher about the guy who told that story, he’d never heard of him. I chased rumors like that around for months. In the 1980s, Eric Schopler, the founder of the TEACCH program in North Carolina, strongly objected to the adoption of the phrase “Asperger’s syndrome,” claiming that Asperger had Nazi affiliations. But he was unable to provide any hard evidence.

Then I saw a reference to Herwig Czech, a scholar of medicine at the University of Vienna. I wrote to him and asked him to tell me what he knew about Asperger and the Nazis. He said he had recently given a lecture on the subject and promised to share the information he had when he was done with a book in several months. I didn’t hear from him. Over the next several years, I wrote to him six more times, revealing parts of the picture that I’d come up with to prove that my research was serious—such as the fact that Asperger’s former colleague at the clinic, Erwin Jekelius, became the head of the killing center at Am Spiegelgrund. Each time, Czech apologized for the delay and assured me that he’d eventually share what he knew.

Not until I read a review of my book by Simon Baron-Cohen, and an advance reading copy of “In a Different Key,” did I realize that Czech had shared his information exclusively with the authors of that book and Baron-Cohen. But even then, when I asked Czech to tell me what he knew so that I could revise the text of “NeuroTribes” in a timely manner, he refused, telling me that he wanted to first publish the information under his own name. I’m relieved that now, finally, this important body of information is available to other scholars. The publication of Czech’s paper and Sheffer’s book should not be regarded as the end of a discussion. It’s the beginning of a more informed discussion that’s ongoing.

This whole experience has been a lesson to me in how competition for priority can distort the process of excavating history. I’m still proud that I was able to dig up so much about how the Third Reich transformed the psychiatric establishment into a killing machine—a “diagnosis regime,” as Sheffer aptly puts it. I got as much right as I could with the information I had access to. This is history moving forward, as it should.

Max, I’m curious how you believe autistics subvert the current social order?

Maxfield Sparrow: Thanks for asking that, Steve. I don’t get to talk about the lived experience of autism from this angle as often because I’m nervous about appearing too radical. I’m usually talking about how challenging life is for us, how often we are social outcasts, how the thin slice studies showed that people prejudge us harshly in just micro-seconds of seeing or hearing us (though we fare better than neurotypical subjects when people only see our written words), how many of us are homeless or unemployed. All of that is the flip side of this same subversive coin, though.

Our existence subverts the social order because we are different in ways that make people angry. People enjoy when celebrities are different. For example, Eddie Izzard became immensely popular by coming out as a transvestite, even wearing high heels, dresses, and make-up on stage. But he has that “osmotic” understanding of social communication with other neurotypicals that is so deeply valued that it is invisible. It’s like air: because we need to breathe to survive, we value an oxygenated environment so much that most people barely even think about breathing. When the air is bad or our access to it is cut off in some way, people become understandably distressed.

The same is true of the kind of social communication that does not come naturally to Autistics. Because we’re not on the same page and not following the “proper” scripts (yes, everyone has scripts, not just Autistic people) we are distressing to those around us. I have a hypothesis that people who don’t understand or appreciate us feel pain when they interact with us and we say and do unexpected or “inappropriate” things. That pain is what stirs classmates and teachers to bully us in childhood. Pain and confusion are what lead employers to fire us or reject us from the outset. Pain is the precursor to the shocking level of disgust many people direct at us.

Even Asperger noticed that people don’t seem to like us. Sheffer quotes him saying, “Nobody really likes these people,” and “The community rejects them.” What makes us subversive is that we are human beings with as much right to be here as anyone else and we are asserting that right. We assert it individually by continuing to try to get an education, earn a living, and live our lives in the face of social oppression. And, more and more, we are asserting it collectively. We get louder and louder as we support one another and gain confidence. We are attracting allies, like you, and they are helping to get our message heard. It’s a message that people don’t want to hear because they know all the way down to their toenails that it is right to accept and support people who are different but...well...a lot of them genuinely dislike us. We aren’t conveniently disappearing into institutions or death or a “cure,” so our ongoing presence and growing demand for a seat at the table is disruptive to social order.

Our non-compliance is not intended to be rebellious. We simply do not comply with things that harm us. But since a great number of things that harm us are not harmful to most neurotypicals, we are viewed as untamed and in need of straightening up. Sheffer writes that Dr. Asperger called this non-compliant trait malicious, mean, and uncontrollable. She notes him describing Autistic children as having a “lack of respect for authority, the altogether lack of disciplinary understanding, and unfeeling malice.” That appears to be the majority opinion of us today as well. If we were not threatening to the social order in some way, there would not be therapies designed to control how we move our bodies and communicate.

Don’t get me wrong: I’m not anti-therapy. I embrace therapies that help me with some of my Autistic co-occurring conditions like circadian rhythm disruption and digestive malfunction. I welcome treatments for epilepsy—a co-occurring condition found in 25% - 30% of Autistics—because I’ve seen how much suffering epilepsy brings. My late fiancé died from SUDEP, a fatal complication of epilepsy, and before his death I watched seizures shred his attempts at living a full life. What I am against are therapies to make us stop flapping our hands or spinning in circles. I am against forbidding children to use sign language or AAC devices to communicate when speech is difficult. I am against any therapy designed to make us look “normal” or “indistinguishable from our peers.” My peers are Autistic and I am just fine with looking and sounding like them.

One good thing that came out of reading Sheffer’s book was that it brought me a step closer to understanding and embracing Autistic Pride. I struggle with being okay about being Autistic and often Autistic Pride seems just a bridge too far. But seeing more clearly that we have always faced the barriers we face today has stirred some pride in being part of a people who survive against the odds. Seeing non-compliance pathologized by Nazi doctors makes me proud to belong to a people who resist oppression. And realizing that so much of what passes for therapy and accommodation today would be wholeheartedly embraced by Nazi doctors reminds me that the monsters who killed Autistic children 80 years ago were also human beings with families and friends and loving relationships. It reminds me that otherwise good people today could also be monsters.

At the Judge Rotenberg Center, Autistic people are being abused with electric shock. This is no different from Ivar Lovaas and his brutal autism “therapy” of the 1960s that you exposed in NeuroTribes. This is little different from monstrous Nazi experiments. Autistic people are subversive because we have protested the JRC and our allies have joined us. We are part of the rubber stopper that holds back a flask of evil. If the stopper gets knocked out, beware! It is a sign that oppression will soon come flooding into the world in an opened Pandora’s Box of misery that will leave no one untouched. We are marginalized canaries in a social coalmine and Rawlsian barometers of society’s morality. It is deeply subversive to live proudly despite being living embodiments of our culture’s long standing ethical failings.

Steve Silberman: “It is deeply subversive to live proudly despite being living embodiments of our culture’s long standing ethical failings”—that’s such a beautiful statement. One of the dangers of reading Czech’s paper and Sheffer’s book in isolation without knowing more about disability history is that you can fool yourself into thinking, “Oh yes, that was horrible, but what did you expect from Nazis? Thank God that era is over.” For disabled people, the era of crimes against humanity is never over.

In his great book “Unstrange Minds: Remapping the World of Autism,” Roy Richard Grinker talks about autistic people being forced to live in cages in Peru in the 1970s, under signs reading “No Te Acerques Por Que Muerdo” (“Beware, I Bite”). Just two years ago, images emerged from Australia of a cage a school principal built to confine a 10-year-old boy. In France, where autism is still considered a form of psychosis, autistic children are subjected to bizarre form of “treatment” called le packing, where they’re wrapped tightly in water-soaked sheets. New stories of abuse of autistic people—by teachers, parents, police, and other authorities—seem to emerge every week.

Obviously, the Reich’s extermination programs against disabled children and adults represent a singular, incomparable level of brutality. Sheffer’s book and Czech’s paper paint very detailed landscapes of how Nazis normalized this violence to the point where, as Sheffer hauntingly puts it, death became “a treatment option.”

But it’s deeply sobering to note that, in many cases when Nazi clinicians referred a disabled child to a killing center, the parents were begging them to do it, because they had been so indoctrinated with the notion that disabled people represent an unfair burden on the state and a source of shame for families. There are echoes of that every time a politician bent on reducing taxes reduces a disabled person to the sum of their Medicaid payments.

There’s a tendency to see the barbaric conditions in the Austrian institutions that Czech and Sheffer describe as purely a product of the Nazi ethos, but several of the American institutions I describe in my book were equally barbaric and brutal, even if the staff didn’t practice euthanasia. My book describes Ivar Lovaas, who led the development of Applied Behavior Analysis for autism at the University of California in Los Angeles, subjecting kids to experimental “treatments” for autism that can only be called torture, zapping them with electrified floors or bombarding them with ear-splitting noise. If we think unimaginable cruelty toward autistic people ended with the Allies’ victory over Hitler, we’re fooling ourselves.

I admire Sheffer’s scholarly work on detailing what she calls Asperger’s “slide into complicity.” Now more than ever, we have to be aware of how violence against stigmatized people—whether it’s Jews, immigrants, people of color, or kids with autism—can quickly become institutionalized, just a part of how society works, “common sense.” Believe me, when I was writing “NeuroTribes,” I never thought I’d see Nazis in the news so soon. Sheffer’s book is well timed. Unfortunately, in the epilogue, she makes a very offbase claim: “Ultimately, Lorna Wing regretted how she brought Asperger’s ideas to the English-speaking world and changed the face of autism.” I did one of the last in-depth interviews with Lorna before she died in 2014, and nothing could be further from the truth. Lorna considered her discovery of Asperger syndrome and the broadening of autism into a spectrum to be the crowning achievements of her career.

As the mother of a profoundly disabled girl named Susie, Lorna knew how hard it was for families who couldn’t access a diagnosis and services. That’s why she “changed the face of autism” by broadening it into a spectrum—inspired by Asperger’s thesis, yes, but primarily based on a living reality: the lives of the patients in her practice and how much support they needed but weren’t getting. The spectrum is not a product of Nazi ideology, as Sheffer implies. It’s a product of Lorna’s compassion for her patients.

To support her claim, Sheffer quotes Lorna out of context on the limits of labels in a way only an autism specialist would be able to appreciate. But when I read the passage to Lorna’s life-long research collaborator Judith Gould over the phone a couple of weeks ago, she said, “That’s completely wrong.” Thankfully Czech doesn’t go there in his paper.

I also think they both go overboard sifting through Asperger’s papers for his harshest statements about autistic people, while framing his positive statements about their skills, abilities, and potential as merely “tacked on,” as Sheffer puts it, and completely acceptable to his bosses as proof of his patients’ usefulness to the state. It’s a valuable point to make, but I think they go too far.

Max, for instance, based on your reading of Sheffer’s book, you said earlier, “Asperger called this non-compliant trait malicious, mean, and uncontrollable.” That’s partly true, but that’s also a result of Sheffer’s relentless cherry-picking, because at the same time, Asperger insisted that the non-compliance of his patients, and their tendency to rebel against authority, was at the heart of what he called “autistic intelligence,” and part of the gift they had to offer society.

One of my favorite anecdotes from Asperger’s thesis is when he asks an autistic boy in his clinic if he believes in God. “I don’t like to say I’m not religious,” the boy replies, “I just don’t have any proof of God.” That anecdote shows an appreciation of autistic non-compliance, which Asperger and his colleagues felt was as much a part of their patients’ autism as the challenges they faced. Asperger even anticipated in the 1970s that autistic adults who “valued their freedom” would object to behaviorist training, and that has turned out to be true.

Sheffer makes much of Asperger’s alleged focus on his patients’ malice, but if you actually read his thesis1, he spends much more time praising their creativity and originality. That’s why clinicians like Lorna and Uta were attracted to his work in the first place. Asperger’s insights into autism were based on years of work and observation not just by Asperger himself, but by his colleagues Georg Frankl and Anni Weiss, who were both Jewish, as well as their colleagues Josef Feldner and Viktorine Zak.
As I first reported in “NeuroTribes,” Frankl and Weiss were eventually able to escape the Holocaust with the help of Leo Kanner, who went on to develop his own model of autism, which was narrower than Asperger’s. That accounted for the low rates of diagnosis until Lorna came along and introduced the idea of the spectrum. In fact, it’s possible that Kanner would never have discovered autism, or certainly written about it so astutely, without the help of Frankl and Weiss.

There are clues in Sheffer’s book and Czech’s paper that the situation in Asperger’s clinic was complex even after they left and through the war. Right after “NeuroTribes” was published, I got email from a relative of a Jewish boy named Hansi Busztin, who Josef Feldner hid in his apartment through the war at great risk to himself, adopting him afterward and raising him as his own son. Czech reports that 100 people in Feldner’s social circle knew about it, which is highly unusual. At one point, Feldner warned Asperger that some of his public statements were “a bit too Nazi for your reputation”—which suggests Asperger was playing a complicated game of making concessions to his bosses while seeming to oppose the Nazis’ most egregious excesses to his friends.

Busztin’s memoir describes “a group of opponents to National Socialism on the Heilpadagogik ward.” So even during the war, there was resistance within the clinic. That’s important. Czech speculates that Asperger eventually left to serve on the front lines in Croatia so he wouldn’t be implicated in the hiding of the boy. But as Sheffer puts it, “Even the extent to which one could, or should, make moral judgments is an open question. Asperger was a minor figure in the child euthanasia program, nowhere near as active as some of his associates… he was not personally involved in killing… Asperger’s actions were perhaps less straightforward than any of these labels suggest.”

I do agree with Sheffer that sorting autistic people into “high-functioning” and “low-functioning” bins carries echoes of Nazi ideology. Under the Reich, being branded as ineducable or low-functioning meant you were expensive ballast on the ship of state, and worthy of a death sentence. But let’s not forget that in America for most of the 20th Century, a diagnosis of ‘“classic” autism meant life-long institutionalization on a lockdown ward where patients were routinely beaten, restrained, and subjected to the horrible experimental treatments. That’s barely better than a death warrant, and it was mainstream American psychiatry for most of the 20th Century.

I want to ask you, Max—how are functioning labels used to divide the autistic community today?

Maxfield Sparrow: That’s an interesting question, because Sheffer’s recent article in the New York Times has dramatically changed my answer from what it would have been just a few weeks ago.

There is a long history of functioning labels being used to divide the Autistic community, both externally and internally. Externally, function labels get leveled at us from the autism community. (The Autistic community is the community of people who are actually Autistic. The autism community is a larger community comprised of everyone with any stake in autism at all: Autistic people plus non-autistic parents of Autistic children and adults, doctors, researchers, teachers, and so on.)

The autism community gives us narratives about functioning labels like:

Autism should never have been made so broad. Those high-functioning people aren’t really even autistic and they are taking away money and resources that could be going to help children like mine.
High-functioning autistic people aren’t disabled and we should help them because they come up with great ideas that will save the world. Low-functioning autistic people, however, are suffering and disordered and we should keep looking for a cure to help them.
People with Asperger’s (a.k.a. mild autism, a.k.a. high-functioning autistics) have no excuse for not working. If they are on disability they are just scamming the system. Only low-functioning autistics deserve disability.
High-functioning people should never be institutionalized. Only low-functioning autistics need to be in institutions and sheltered workshops.

Sometimes Autistics who have internalized the ableism and division that we hear every day from the world around us echo these divisive beliefs. I have met people who refer to themselves as “high-functioning autistics” because they are ashamed or afraid that if they just call themselves “autistic” they will be accused of lying or they will be mistaken for “somebody who might have to wear adult diapers and maybe a head-restraining device,” as one leader in the Asperger’s community said when he heard the DSM-5 was going to remove Asperger’s syndrome as a distinct diagnosis. Others have held on to the Asperger’s/Aspie identity despite it no longer being an official medical diagnosis.

While my second diagnosis was Asperger’s syndrome, I rejected the Asperger’s label many years before the DSM-5 came out and do not like being called an Aspie. I have written on several occasions, including in my book, “The ABCs of Autism Acceptance,” criticizing those who continue to identify as Aspies or having Asperger’s, accusing them of being divisive to the community. Under DSM-IV, I accepted those who continued to identify as Aspie, but once it was no longer a medical category, I felt that those who continued to use the Asperger’s label were clinging on to it because it was the equivalent of calling oneself a high-functioning autistic.

There is a phrase some people use: “Aspie Supremacist,” meant to describe the sort of person who feels that having Asperger’s makes them the next step in human evolution, far superior to others. I went so far in my book as to paraphrase Martin Niemöller’s poem about persecution under the Nazi Regime, saying, “Then they oppressed those Autistics Who Needed Round the Clock Care and I did not speak up because I was able to live independently.” My intention was to shame those who used functioning labels of any kind (including the Aspie identity) to ignore the needs of some of our Autistic siblings while holding their own needs and self-image higher.

I am sorry now that I wrote those things. I still believe the Autistic community needs to remain unified. But I have no business shaming others for the name they use to communicate their autism. I am not, nor do I want to be, the identity police. Sheffer’s article and book made it clear that she is battling Asperger’s name because she is battling the notion of a full Autistic spectrum. She wouldn’t be the first to try to kick those of us who speak and live independently out of our diagnoses. With the information coming out about Asperger’s words and actions, she makes a strong case for removing his name from autism. Many people would like to see those of us who have been diagnosed with Dr. Asperger’s name removed from our autism diagnoses as well. They have decided we are “too high functioning” to be Autistic.

The thing so many Autistics have pointed out about functioning labels is that we are called “low-functioning” by those who choose to ignore our strengths and “high-functioning” by those who choose to ignore our challenges. There is no official definition for these functioning labels. I’ve noticed researchers defining what they mean when they say they are studying a low functioning or high functioning population, and the chosen definitions vary from study to study, complicating meta-analyses. The labels are meaningless in an objective, scientific sense.

Several years ago I was looking for some help and was rejected by one agency, which said I was too high functioning and referred me to another agency. That second agency rejected me for being too low functioning. I concluded that function labels are what others use to try to control us and act as gatekeepers to the things we need to survive and thrive. Functioning labels are weapons used against us.

But the way I pointed out how the labels “Asperger’s syndrome” and “Aspie” were weapons when used as dog whistles for “high-functioning” ultimately made me part of the problem and reinforced the divisions we already experience from outside our Autistic community. Seeing Sheffer’s attack made me feel protective of my siblings who still identify as Aspies. I don’t like when we are overly medicalized and pathologized, so I should be happy to see people defending their identity even as the medical industry seeks to remove it from them.

When the chips are down, I will always join with my neurotribe. So I want to officially state that, while I still don’t personally want to be called an Aspie, I am ready to fight on behalf of my Autistic siblings who do connect with that identity—not as a euphemism for high functioning, but as a cultural marker of their understanding of themselves and the world we live in. No, you cannot take away the identity of thousands of Autistics! Asperger had deep flaws, but the identity that has grown around his name is valid and the people who identify with Asperger’s have the right to decide for themselves whether to keep his name or not.

Steve Silberman: I agree. I think autistic people should be leading the response to this new information and determining what happens to the phrase Asperger’s syndrome. One of the best things that could come out of this is a wake-up call, because concepts like eugenics reassert themselves in every historical era—whether it’s Nazis talking about “life unworthy of life,” geneticists in Iceland talking about “eradicating” Down syndrome through selective abortion, a presidential candidate mocking a disabled reporter from the podium while bragging about his “good genes,” or autism charities framing autism as an economic burden on society. Resisting institutionalized violence requires perpetual vigilance.


If what is said about the upcoming Edith Scheffer book above is true it will confirm fears I have had about this information being revealed going back to "In A Different Key". That this information is going to be a gift to those that think those of us in the milder/higher functioning/aspie end of the spectrum are not really autistic but frauds diverting attention from "real autism". I can envision causation equals correlation arguments like you were so wrong with identifying with Aspergers whatever you say about autism has no credibility, stop being a lazy bum and just try harder.

The above does not mean we should do the same thing and say because we disagree with her apparent agenda her findings are wrong. While those of who bought into Asperger as a heroic ally need to do soul searching does not mean we should stop advocating for other autism things we believe in.


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DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity.

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


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19 Apr 2018, 4:18 pm

Thank you APOM once again. That piece is the most interesting discussion which I have ever read here, or anywhere, on these issues, and I realise that it's the clear and comprehensive discussion that I have been waiting to read for a very long time.



eeVenye
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19 Apr 2018, 6:20 pm

ASPartOfMe wrote:
That this information is going to be a gift to those that think those of us in the milder/higher functioning/aspie end of the spectrum are not really autistic but frauds diverting attention from "real autism". I can envision causation equals correlation arguments like you were so wrong with identifying with Aspergers whatever you say about autism has no credibility, stop being a lazy bum and just try harder.


Selfishly, my concern is with perception issues outside the autistic, and even autism, community. I am working on a degree in a very insulated field, that has broad exemption from ADA requirements. There is no awareness of autism (beyond, perhaps, Rain-man).

The diagnosis of AS was a useful shorthand that avoided the problems of functioning labels and the constant need to clarify 'my autism'. The removal of the diagnosis from the manuals was a mild setback, as long as AS was a cultural phenomenon, but the disgust at using his name leaves me a position where I am at a loss for a good self-descriptor when I need to specify where on the spectrum I fall.

That said, it's probably a much bigger deal in my mind than in reality, as I'm waiting to find out whether I will be allowed to finish studies this next year.


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19 Apr 2018, 6:37 pm

ASAN statement
Reflecting on History, Resisting Hate

Quote:
We are a community with a long history of resilience in the face of overwhelming hatred. The history of the autistic community has always been shaped by violent prejudice against disabled people, and these prejudices have always gone hand-in-hand with violent racism. This history of violence includes institutional abuse, forced sterilization, and murder. Ideas about what a good life is, whether some lives are worth more than others, and who counts as a contributing member of society, have always affected the way society treats people with disabilities. These ideas have always been violent and have always ended up killing people.

While this latest news may be very distressing to hear, it doesn’t change who we are as autistic people, and it doesn’t change what autism is. How others perceive our disability absolutely affects our lives, but we define autism on our own terms. We are primarily concerned with the experiences of our fellow autistic people, not what Asperger thought. Indeed, the diagnosis “Asperger’s Syndrome” is no longer in use, having been folded into the unified autism diagnosis in 2013. This reflects both clinical fact as well as the truth, long acknowledged by self-advocates, that we are one autistic community.

We urge advocates to take this opportunity to re-examine the ways that ideas devaluing people with disabilities are still around and still being used to further racist agendas. The Trump Administration is currently in the process of proposing a regulation which would penalize immigrant families with disabled family members, and make it harder for people to become citizens if they or their family members ever need any type of social service. The rule calls people with disabilities a “public charge”– a drain on society. This is what eugenics looks like today. Advocates must be united and unambiguous in our opposition to this rule and other modern threats to the lives and liberty of people with disabilities. We all have a responsibility to pay attention and speak out against this kind of dangerous ideology.


Apparently "we define autism on our own terms" does not apply to those of us who do, used to identify as "Aspie" "Aspergers" or "Asperigan" or are now questioning using these terms. ASAN for years has not bowed down to "clinical fact" of the "medical model of Autism" but those divisive Aspies better do just that.

For many mature adults and others the Aspergers related terms provided a much needed explanation and boost in self esteem after a lifetime of misunderstanding rejection, and bullying. While the details of the horrors of Nazi Autistic elimination and suspicions of Hans Asperger's role in them have been known to some of us for a while for many these are first time revelations. For those people who a day or two ago identified or described themselves in Aspergers terms with the view of Dr. Asperger as an autistic ally this is a time of shock, the pain of unwanted change, self flagellation and doubt. Tone deafness from the most well known Autism advocacy organization was the last that was needed at this time.


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DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity.

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


Last edited by ASPartOfMe on 19 Apr 2018, 6:41 pm, edited 1 time in total.

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19 Apr 2018, 6:39 pm

I'm not following the line of reasoning here.

The link between lung cancer and smoking was established by German doctors in Nazi Germany and the Nazi government ran public campaigns to discourage smoking. Does that Nazi connection mean the tobacco companies are vindicated in their campaign to hide the connection between smoking and lung cancer and the warnings printed on cigarette packets should be abandoned because they're just Nazi propaganda?

Or is it possible to separate the science from the politics and to acknowledge that the science — which has been supported by subsequent researchers in both the smoking-lung cancer connection and the existence of Asperger's Syndrome — is valid while rejecting the politics. The line of reasoning here seems to be: no you can't; if you don't like the politics, it automatically discredits the science. Which, to me, just seems short-sighted and weird.

Also, the title: autism didn't originate in Nazi Vienna, it was (co-)discovered in Nazi Vienna. Saying it "originated" displays a deep misunderstanding of what autism is and how it works. Autism is not some weird Nazi plot, it's part of the human condition.