Thursday, April 19, 2018

On Hans Asperger, the Nazis, and Autism: A Conversation Across Neurologies

by Maxfield Sparrow and Steve Silberman

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.”

A roundtable discussion in the Children's Clinic, 1933
Photo courtesy of Maria Asperger-Felder
[image: Sepia-toned photo of five people sitting around
a round table with a white tablecloth, dishes, and food.]
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 fiancĂ© 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.

Lorna Wing, mother of the autism spectrum
photo courtesy of Steve Silberman
[image: A smiling older white woman, wearing a
blue floral shirt, and sitting in a chair.]
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.

1. Asperger, Hans (1944). 'Autistic Psychopathy' in Childhood. (U. Frith, Trans.)

Friday, March 23, 2018

The Problems with Functioning Labels

Talent Show - Summer Academy 2014
Photo © City Year | Flickr/Creative Commons
[image: Photo of a Black young man with short hair, close-cut beard, and
glasses, holding hands out to sides while on stage during a talent show.]
Finn Gardiner

Many professionals talk about autistic people’s “functioning labels.” Functioning labels are a way to describe how well people learn, take care of themselves, and live in the community. People will often talk about “high-functioning” and “low-functioning” autistic people when they are describing them. Even though people who talk about high-functioning and low-functioning autistic people often mean well, these labels are not accurate for many people. Functioning labels do not always relate to people’s real skills and can be based on hurtful stereotypes about autistic people. They also assume that people’s skills cannot change over time. 

Many people use people’s intelligence to determine whether they are high-functioning or low-functioning, but many autistic people’s daily living skills are not affected by how intelligent they are. Someone can learn quickly and have a hard time with daily living skills, while someone else who learns more slowly can find the same skills easy most of the time. Using these labels can make it hard for people to get services. If you do not have an intellectual disability, agencies may tell you that you are high-functioning and do not need help, even if you’re struggling to stay fed, clothed, and clean. If you do have an intellectual disability, you may be told you are low-functioning even if you don’t need as much help with daily living skills. 

Sometimes people can call the same person “high-functioning” and “low-functioning” at different times in their life. People have said I was “high-functioning” for most of my life, but when I was very young and was non-speaking, they would have said I was “low-functioning” because they thought I had an intellectual disability. Saying that people are “low-functioning” is especially hurtful, because it means that some people will have low expectations of you and will not expect you to learn, grow, and pick up new skills. 

When some doctors thought I had an intellectual disability, one of them said I would never learn anything. I do not have an intellectual disability, but even if I did, I would still be able to learn things. Everyone can learn and pick up new skills over time, whether or not they have an intellectual disability. This is part of why saying “low-functioning” is hurtful. 

Also, people’s functioning can change over time. People can need more or less support with daily living skills for several different reasons. Sometimes they can be having a bad day, or be depressed, or be going through major life changes that cause them stress, or it could be the opposite. Feeling good about yourself may make it easier to do tasks that would usually be hard for you. A “high-functioning” person may be having a bad day and have a hard time with self-care tasks like bathing, cooking, shopping, and dressing. A “low-functioning” person can have a good day, week, or month and do relatively well with the same tasks. 

Instead of talking about functioning labels, we should talk about the specific kinds of support people need. Professionals should treat autistic people and other people with disabilities as individuals that have their own needs instead of just saying that they are high- or low-functioning. Everyone is different and deserves help that will make sure they live the best life they can.