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 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.

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.

Wednesday, March 21, 2018

Autism Uncensored: A Dangerous and Spirit-Crushing Book

Photo © Charley Lhasa | Flickr/Creative Commons
[image: Plush red Elmo doll lying on asphalt.
A yellow chalk speech bubble has Elmo appear to be yelling "Help!"]
Maxfield Sparrow

[Content note: Extensive discussion of restraints. Discussions of gaslighting, denying Autistic autonomy and competence, child abuse, autism profiteering, and similar goblins. Discussion of the 1960s medical view of autism as it continues to occur today.]

You may have seen the recent Washington Post article titled “Bystanders were horrified. But my son has autism and I was desperate,” an excerpt from Whitney Ellenby’s new book, Autism Uncensored: Pulling Back the Curtain. True to the exposé tone of the title, Ellenby describes in livid detail the day she wrestled her panicked son, Zack, by clamping his 50 pound frame tightly between her thighs and locking her feet together. The two spent over half an hour in combat as Ellenby dragged him inch by inch toward the red curtain beyond which the Sesame Street puppet Elmo was performing. Zack’s piercing shrieks alarmed onlookers who screamed at Ellenby to stop, threw an iced drink on her, and spat on her.

When the venue attempted to kick Ellenby and Zack out for causing a disturbance, she told them the ADA (Americans With Disabilities Act) gave Zack the right to reasonable accommodations to access public venues, and she was Zack’s accommodation.

I learned from reading her forthcoming book that Ellenby began her career as an ADA lawyer. She had a dream of fighting the huge battles. I’m picturing her mind set on something like a cross between Spencer Tracy in Inherit the Wind, and Gregory Peck in To Kill a Mockingbird. She went into ADA law starry-eyed about all the great work she would do, but became frustrated when the bulk of her work turned out to be things like getting down on all fours to measure doorways and stalls to see if they were up to code. That didn’t feel important enough to her, so she switched to a boutique adoption firm. Then she became pregnant with Zack, and thought she would take a little time off to give birth but soon be right back in the thick of things at work.

The first half of Autism Uncensored is a brutal description of how angry and bitter Ellenby became at her son, Zack, when he turned out to be autistic. Ellenby feels like giving birth to Zack was some kind of punishment for her sins, and expresses that belief through declarations like, “After weeks of being entombed by numbness, my heart is finally giving way to the realization that I’m being justly punished.”  “Zack’s autism is collateral damage for a life poorly lived. I just never imagined the punishment for my bad deeds would be inflicted on my innocent child, or be so brutal, so permanent.” “I’m chained to this denigrating, unpaid forced labor with no tangible reward for all my sacrifice.” “I will be incarcerated and tied to him for the rest of my life, a prison sentence” “I can’t pretend this is anything but punishment. At its very worst, autism feels like a living, walking, breathing nightmare.”

The book could use a thorough editing for typos and word usage—writing “synchronicity” for “synchrony,” or “bespectacled” for “bespangled,” for example—but I don’t think the last quote of my previous paragraph was a typo. I believe the author fully intended to say “autism feels like…” because she believes that autism is not a word to describe the structure and function of her son’s brain, but rather a punishment inflicted on her. Like many martyr parents, she has co-opted her son’s identity and cast herself in the role of victim. Autism is not a neurotype; autism is what was done to her. And in between sessions with her hair shirt, she makes it clear that she thinks she is better than this: “I am a well-educated woman. I am an accomplished civil rights attorney. I am a woman who spends hours every night on her hands and knees scraping feces off walls.”

Sometimes her concept of autism is as a separate beast, something outside and inhuman: “Autism is angry. The infuriated beast of defiance is rearing its head, snarling, writhing, biting, only I’m not trying to defeat the beast or even subdue it. I need its passion and power. It’s this very passion that fuels the resistance with which I must align myself, harnessing and channeling that live energy.”

I have heard people defend the phrase “combat autism” by saying that they love their child and hate autism. When the average person says they’re fighting autism, it feels bad to me but I try not to say too much because I’d rather win hearts and minds, than be too direct and alienate anyone I might otherwise have influenced. But when Whitney Ellenby was fighting autism, it was very much not a case of “love the child; hate the autism.” When Ellenby writes about fighting autism, she is talking about fighting Zack. 

Ellenby wrote very clearly about hating Zack, and she used the kind of language I’m not used to seeing outside medical books from 40 and 50 years ago. “He’s not even a boy really, but the shell of a boy, an exquisite cutout of a child with no actual stuffing. He is damaged ... deformed ... disgraced. And his disgrace is my own. This is what my glorious womb has produced, a profoundly dysfunctional child.”

The author tells us that she has intentionally chosen to use the present tense when writing her history with Zack as if everything were happening in the moment in order to achieve maximum emotional impact. She succeeded in that aim; her book is harrowing. I felt clobbered reading the first half of Autism Uncensored. After enough clobbering, I just felt numb and empty.

The second half of the book starts when Ellenby’s daughter Cassie is born. Cassie is not autistic, and at first Ellenby loves her more than Zack because she is typical. “Cassie exhibits everything Zack did not, and more. I feel truly appreciated, indispensable, valued. I’m not just smitten but truly grateful to my daughter for allowing me finally to know true reciprocal joy and interdependence. So this is why so many parents describe newborns as transformative, revolutionary and all-encompassing. Now I get it. Now I can’t pretend that I don’t.” Zack clearly sees the overwhelming favoritism going on and in a panic about his own survival he does things to hurt the baby.

Ellenby complains about all the extra work of policing Zack while taking care of Cassie. She wishes she could get rid of Zack and start fresh with Cassie and forget she ever had a child who wasn’t normal. “I cannot see a way out or how will it [sic] ever subside in the face of such obvious, lasting discrepancies between my two children. I’ve never been one to repress my fantasies, the theme of which are now overwhelmingly versions of 'starting over.'” “What if Keith and I could start over with just her and then have just one more typical child? Now that we know it’s reproductively possible, the notion is intoxicating, the vision of Cassie as the older sibling to another adorable healthy baby, rounding out the family to the four I’d originally envisioned, before all hell broke loose.”

Ellenby realizes she’s sharing a horrifying thought and tells the reader “no one who hasn’t walked in my shoes gets to judge me.” She reasons that it’s natural for her to feel this way after everything she has endured from Zack. But around 60% into the book, Ellenby’s affections for her children suffers a sea-change. The catalyst? Cassie starts talking. Now Cassie uses logic to resist doing what Ellenby wants her to do. Cassie treats her mother to streams of insults: “From now until forever, I’m going to be friends with everyone except you!” “And I don’t even like the way you dress! And you try, but you are not even funny!” “And you know what? Daddy is SO much more funner than you! And he’s a better cook, and he’s better at video games, and he looks better in his clothes than you do in yours.”

Ellenby can’t stand it and begins to hate her daughter, opening up room to love her son as she uses the ambiguity of his silence to layer dehumanizing mystical interpretations of autism onto him. “Unbelievably, the scales of enjoyment between my two children are tipping in a direction I had not thought possible.” She begins to really appreciate Zack’s silence. “Zack’s own economy of words works to our mutual advantage—I talk too much, he too little. Somewhere between us lies a normal amount of speech.” From this point on, she always writes about Zack with a stereotypical new age-y praise of his innocence and higher spiritual nature.

Around the same time, she starts noticing that people will be overwhelmingly supportive and helpful when she makes a public announcement about Zack’s autism. People on the train provide an endless supply of tissues and plastic bags when Zack soils himself unexpectedly and Ellenby announces it’s due to autism. Gang members at a water park band up to protect and assist Zack on the giant water slide after she gives an impromptu speech about Zack’s autism on the steps of the water slide. Ellenby wrote in the first half of the book that she was Zack’s accommodation and he “rides” her. By the second half of the book it is becoming clear that she is riding Zack, using his autism for a social payout to herself.

Ellenby describes a turning point at which I sense she first began to realize she could commodify Zack’s autism for money, social status, or both. Ellenby stages another wrestling match with Zack, this one to get him inside a movie theater to see Happy Feet. This time, instead of springing the performance on an unsuspecting and captive audience, Ellenby goes into the theater alone first to announce that she will be dragging Zack in during the previews and that he’s got autism and this is part of his exposure therapy.

The theater-goers silently watched Ellenby drag her son into the theater—kicking, clawing, biting, shrieking—and then, “A few members actually kneel to give me strong hugs; others pointedly ask me for my business card so I can work with their disabled children, cousins, grandchildren. Once again history has been made in the life of my child. Savor it.”

Ellenby ends her book by telling us about her business and all the good it is doing in the world of autism. The book reads like a business card. It’s the kind of book meant to drum up more business and I think it will be highly successful in that regard. And I think that’s a horrible state of affairs.

Ellenby began dragging her son places after she felt Zack was not making enough progress on ABA therapy. She decided mother knows best and began her own program of forcibly dragging him places he didn’t want to go so he could see for himself that it wasn’t so bad once he got there. The author spends a few pages of her book enumerating the flaws of ABA and, for a moment, I agree with her:

“A flat prohibition against certain behaviors wipes out a panoply of ritualistic comforts for an entire population, some of whom may very well depend on them to function at all. And if we suffocate those adaptive behaviors, even when the child is learning, are we not teaching the child to be ashamed of his own natural impulses, telling him his are disfavored or deviant? And would we do the same to typically developing children, or to ourselves as adults?”

“But something even more sinister is going on here: we are undermining Zack’s autonomy and sense of self-worth. ABA protocol is literally robbing Zack of independence and bodily choices, because we are making them for him.” Yet what is Ellenby’s Tackle and Drag Therapy but a super-intense experience for Zack of completely losing his autonomy and bodily choice?

Ellenby felt like a small fish in a big pond as an attorney; making her life about autism makes her feel like a much bigger fish. Again, she co-opts Zack’s identity to fill her ego needs: “I am autism and it is me; I live and breathe it, fully intoxicated: it’s in my marrow. And most unexpectedly, it gives me profound joy and sense of purpose to acknowledge it. It doesn’t matter that I was trained to be an attorney. I’m meant to be something more feral, more hands-on, more intimate and immediate. After a decade spent wandering the wilderness as a little attorney lost, possessing raging zeal with no clearly identifiable group to ignite it, I have come home.”

Ellenby admits she’s not even got the proper training to safely restrain a child. With her attorney instinct, she makes sure to tell people not to do what she did. Yet she uses such scientific phrasing when she describes her “experiments” and writes about her perception of the success in such glowing terms many vulnerable parents will do exactly what she describes, as closely as possible to the way Ellenby did with Zack in search of some magic outcome.

And for all Ellenby’s criticism of ABA in her book, when I Googled her business I found that it’s based on an ABA model. And in her Washington Post article, Ellenby admits that what she is doing with her Tackle and Drag therapy is exactly what ABA therapists do if the 40-hour work week of ABA therapy isn’t making a dent in a child’s behavior. She told Zack’s doctor about the Elmo show, after the fact, and he explained that: “as a last resort, in a controlled way and only after years of therapy, a licensed behavioral clinician might have physically restrained Zack to force him to confront his fears, had he not responded to more gradual methods.”

As Sid Ziff once quipped, this is not a book to be lightly thrown aside; it should be thrown with great force. But it is in the midst of being published and the publisher has defended the author, using some particularly nasty rhetoric against Autistic people who don’t like the book. It will be published.

Ellenby has said no one should speak badly about her book unless they’d read every word. Well, I’ve done that now and I feel soiled and deflated. Demanding that Autistics who are upset by one bite of her book must go on to consume the whole thing before being permitted to have an opinion is the demand of a bully who knows they are requiring vulnerable people to traumatize themselves with her words.

While Ellenby has, perhaps unwittingly, exposed a lot of the ugliness and unsuitability of ABA, she embraces the behavioral paradigm still and enacts the very worst versions of it. Autism Uncensored is a traumatic read and should be resisted as much as possible. I’ve read it for you and saved you the trouble and trauma. Instead of this revolting mess, I suggest you read the following:

Respectfully Connected


"Authors of this blog come from a wide range of backgrounds and between them have an enormous amount of parenting experience. They all share a desire to parent in a way that both models and facilitates respect and connection, and that values all kinds of diversity. The authors of this blog also share the experience of being part of neurodivergent families."

"This blog exists to share the authors stories, with the hope they will empower and encourage other parents on their journey with the knowledge that there is a gentler, more compassionate way of raising autistic children than much of society tells us, and that close attached relationships are very possible."

We Are Like Your Child


“We Are Like Your Child [is] a collaboration of Autistic (& occasionally, other disabled) adults. We discuss our difficulties & how we work with or around them from a neurodiversity & social model of disability perspective.”

WALYC was organized in response to the many parents who refuse to listen to what Autistic adults have to say about the lived experience of autism, telling us that we can’t possibly have any useful insight or advice because we’re “not like their child.” But you can’t compare an adult to a child and the members of WALYC often discuss challenges many people’s children of all ages face, along with strategies for circumventing or overcoming those challenges.

The Thinking Person’s Guide to Autism

Oh, wait, that’s where you are right now, reading this. Well keep reading TPGA! There is so much collected wisdom here from Autistics, parents, therapists, and more that it would take a shelf of textbooks to hold it all (and the valuable content continues to grow.)

These three sites alone will keep you very busy reading and learning things that will actually help you and your child. Reject Ellenby’s Tackle and Drag therapy and anything that comes from Dr. Lovaas and his ABA practices. Boycott Autism Uncensored and tell everyone why Autistics deserve better.

Saturday, March 10, 2018

How to Use Visual Schedules to Prevent Accidental Gaslighting


(Content note: This post mentions ABA briefly, and gives a detailed example of an autistic child being exposed to gaslighting.)

I’m an autistic parent to an autistic child. After I tweeted a bit about my take on autistic parenting, that made me think that I want to explain one of the benefits of using visual supports for clarifying life and create predictability.

Visual supports like picture schedules can be used in a number of ways. Sometimes people use them in ABA settings to visualize what reward the child will receive, and I want to be clear that I don’t do that. I don’t do any kind of ABA or therapy that attempts to make my kid appear allistic (non-autistic).

In my home, we use pictures and visual support to make life easier for us, as the autistic people we are. Nowadays, both my kid and I are mostly verbal but visual support is still a great way to communicate for us, for a number of reasons. One of the benefits of pictures, words written down, and color-coding is that this is the kind of information that lingers, meaning even for people like us who don’t always remember what we were thinking about a second ago (hey ADHD), the information is more accessible. Another benefit is that clear, visualized planning can prevent (unintentional) gaslighting and misunderstandings.

Now, some of you may think that since gaslighting is a horrible thing, it’s not something that happens accidentally. I wish that were true, because yes, making someone doubt themselves and their experience of reality is a truly horrible thing to do. In my experience though, adults sometimes do gaslight kids without even realizing it. Especially autistic kids. Especially if parents operate with an allistic perspective. It can go something like this:

An autistic child is being told by a parent that “tomorrow, we’re going to the beach if the weather is good.” If the weather is bad they will stay at home and play computer games. In the mind of the parent, this plan means that they will go to the beach if it’s warm and sunny.

This condition doesn’t have to be a problem, but let’s say that the parent doesn’t tell the kid about what they mean by “good weather.” Let’s say that the kid doesn’t even like sunshine because the heat is sensory hell, but loves playing on the beach on a cloudy day. The next day when they wake up, it’s cloudy and not that warm. The kid is happy, because the weather is perfect for the beach. The parent however, doesn’t want to go to the beach because it isn’t warm enough. Maybe they will disagree and fight about it. Maybe, the parent will say something like “But I told you we’re only going if the weather is nice! Why don’t you ever listen?”

A lot of people will probably agree with me that this is a misunderstanding. However, if you’re an autistic kid your sensory experiences, your interpretations of the world, and what people say are likely to always be questioned, erased, and invalidated—and then you are being blamed for it. It probably doesn’t happen only once a year, it might happen every day. Because that’s life for a lot of autistic people in an allistic-run world.

For kids, this is even worse than for adults because kids’ interpretations are often considered invalid just for coming from a kid. Having your interpretations of the world constantly invalidated day after day, year after year, is a kind of gaslighting. It might not be intentional but it’s more harmful than just misunderstandings between equals.

So how can visual supports help autistic people in these situations?

[image: Black and white pictures of a sun followed by an arrow pointing at
a symbol for beach and a picture of clouds followed by an arrow pointing at
the symbol of computer games. Images from Sclera symbols.]
Let’s say that the parent and kid in our example had made a picture schedule about this. For some people, it becomes much easier to understand an autistic way of thinking when you communicate using pictures, meaning that just putting what you want to say in pictures might close a communication gap between the parent and the kid.

But even if closing that gap doesn’t happen automatically, when the parent and kid created the schedule together, the question of what “good weather” is would hopefully had come up. Many of the parents I discuss visual supports with mention this idea, that putting your thoughts into pictures makes it more necessary to be precise and see possible interpretations beyond your own. When visualizing plans together, it can become easier to understand each other.

Hopefully, by making visualizations and realizing that you have different sensory experiences about sun and heat and therefore interpret “good weather” differently, you avoid misunderstandings and gaslighting.

[image: Black and white pictures of a sun followed by an arrow pointing
 at a symbol for computer games and clouds followed by an arrow pointing
at the symbol beach. Images from Sclera symbols.]
Now, would it be enough to visualize during what weather a visit to the beach could happen? No. If a kid experiences sensory hell from sunshine and heat, the issue won’t be solved just because there’s predictability from a picture schedule. Obviously the parent has to change their idea of what kind of weather that is beach appropriate to not put their kid in sensory hell.

Creating predictability by using visual support isn’t some kind of magic, it’s only one part of parenting an autistic kid in a respectful way.

Friday, March 9, 2018

At Home in Ourselves: A Mindful Acceptance of My Autistic Son

Star jump
Photo © Stuart Anthony | Flickr/Creative Commons
[Image: Two backlit people attempting to jump over a horizon-adjacent sun.]
Leslie J. Davis
"When I practice breathing in and I say, 'I have arrived,' that is an achievement. Now I am fully present, one hundred percent alive. The present moment has become my true home. When I breathe out I say, 'I am home.' If you do not feel you are home, you will continue to run. And you will continue to be afraid. But if you feel you are already home, then you do not need to run anymore. This is the secret of the practice. When we live in the present moment, it is possible to live in true happiness." –Thich Nhat Hanh, "No Death, No Fear: Comforting Wisdom for Life"
Every Monday night I sit with my meditation group and practice breathing in and out in an attempt to calm my racing thoughts, to learn how my mind works, to remember that I have a body. I sit on a brown zafu cushion and breathe in and out, saying to myself, "I have arrived. I am home." On the in breath: Arrived. On the out breath: Home.

This practice of breathing slowly in and out allows me to slow down, so I can stop running. So I can stop being afraid. So I can stop worrying. Often the fear and the worries rush back in after the meditation session is over, but doing the sitting helps me bring an essence of calm and a sense of being "home" into my daily life when I'm not on the cushion.

Having this capacity to slow down so I can be at home in myself has allowed me to trust that my autistic teen son is also at home in himself. It allows me the space to observe him closely and notice him for who he is, instead of trying to change him to be someone I want him to be, expect him to be, or that society expects him to be.

My autistic son has a rich and vivid inner life. I see him watch, listen, and notice. He uses spoken language and communicates well, yet I know there is much that he isn't sharing because he can't, or chooses not to. I know there are oceans inside of him that he isn't revealing to anyone. Because of my meditation practice and spending time on the cushion, I'm able to watch him, listen to him, and notice.

Recently I had a coffee date with a dear friend and we had heart-to-heart on an important experience in my life. Afterwards, all these thoughts ran through my mind: There's so much more I didn't have a chance to say! There's so much more I could say but am choosing not to say. There's so much more to this that I don't yet understand. There are experiences in my life that this relates to but we didn't have time to talk about it. I don't want to tell her everything; I want to keep some of it to myself.

There is so much going on inside of a person that we don't know about. On all the levels: spiritual, emotional, intellectual, hormonal, ancestral, etc. Our inner lives are rich with detail and feelings—on any given day there is so much we don't share with other human beings. Why would we non-autistic people think this is any different for an autistic person?

When my son was a young child his imagination astonished me with the depth and detail of his creations and made-up worlds. I used to try to get him to write it out, draw it, speak about it, until I realized, Who am I to force him to open those places up to me? When he wanted to talk to me about his made-up worlds, he would. When he decided to draw maps of his world, he would draw maps for days, and I would watch, marvel at his concentration and creativity, gently asking a question or two here and there. Sometimes he was excited to talk about it and other times, not. When I shifted my perspective I could accept that when he's in his own world in his mind, he is safe, he is home.

His present moment is his true home.

As a mom, breathing and staying calm aided me in seeing him for who he truly was: a boy completely at home in his own world—comfortable and calm and free--unless I was the one pressuring him into doing things I "thought" would help him, doing things my societal conditioning told me was right, or was expected of him. When social norms whispered in my ear—or more accurately, shouted in my ear—they came via comments and suggestions from non-autistic people, doctors, therapists, teachers, or the voices in my own head based on my own upbringing in a neurotypical society.

When I listened to these outside voices, I'd yell at my son, insulting his individuality, trying to pressure him into a mold, and attempting to define who he was in a way other people would understand. Putting others first and ourselves, second. But when I stayed mindfully aware of his essence, I saw that he was happy and free. That he was smart and expressive and curious. There was no need for me to intrude.

But intrude I did, for many years. Before having the conditions to set my mind at rest and put my trust in him, before an autism diagnosis, before my meditation practice steadied me, before I let go of outside expectations and trusted my intuition, I intruded in ways I'm not proud of. For years I was a messy conglomeration of views, theories, approaches and therapies. I swung back and forth between being a toxic, controlling, fear-driven, socially-influenced mom, and being a steady, confident, calm, trusting advocate for my son whose actions from a place of love. Both were happening at the same time. It caused a lot of suffering in our home—mostly for our son.

One of my son's occupational therapists used to ask, "What Would Love Do?" and I would cry every time she said it, because my desire to move from a place of love was so deep—and at the same time I was clutched in the grip of a neurotypical world's expectations, and operating through the lens of mainstream expectations and ideologies.

Eventually, our family embraced a non-conventional lifestyle in regards to my son's education and care, and chose to pursue our own path of support for him through homeschooling, private therapies, and mindfulness practices. Letting go of conventional views set us free to be at home in ourselves.

"I am large, I contain multitudes." -Walt Whitman

When I practice meditation and remember to return home to myself in the present moment, I know that my autistic son contains multitudes—oceans of thoughts, feelings, sensations, awareness and insights that he doesn't share with me. And I accept that he has the right to be at home in himself and be the owner of his own experience, and of his own happiness.

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Thursday, March 8, 2018

The Stories We Don’t Tell: My Mom On Raising An Autistic Child And Why She’ll Never Write About Me

Sarah Kurchak and her Mother Jane Kurchak
 [image: Cheerfully geeky selfie of the author, a white Canadian woman wearing
glasses and also goggles on top of her head; and her mother, a white woman
also wearing glasses plus a pinstriped blue collared shirt, tie, and white jacket.]

Sarah Kurchak

When I’m feeling particularly frustrated with my career, I offer to ghostwrite a memoir for my mom. It’s a slightly bitter, semi-serious joke. I’m mostly taking a shot at the fact that the memoirs that non-autistic parents write about raising their autistic children have a much better shot at getting published and selling than anything that I, as an autistic person, could ever hope to write about autism. But there’s also a little part of me that just wants that payday. (I can’t extend this offer to my dad, because he’s a fellow autist and no one seems particularly interested in hearing what autistic parents have to say about these things, either. Or acknowledging that autistic parents even exist.)

My mom is a funny person, and usually quite indulgent when it comes to my humor, but she always shuts this joke down pretty quickly. Even in jest, her answer is clear. This isn’t her story to tell.

As I’ve watched the autistic community respond to the latest offerings from this wretched subgenre and wondered how I could contribute to the conversation at a time where I don’t feel intellectually or emotionally equipped to properly tackle the issue as a writer or an advocate, I kept coming back to this point. So I asked my mom to read two of the most recent and high-profile examples of the Autism Parent memoir, Judith Newman’s To Siri With Love, and the excerpt from Whitney Ellenby’s forthcoming Autism Uncensored that was recently published in The Washington Post. And then I asked her if I could interview her about them. And about us.

The following has been lightly edited for length and clarity. And I’m not so sure it helped the latter. I’m not convinced that I perfectly articulated my points, but it’s the best that I can do right now and I’m hoping you can get the general idea from what I have said.

People argue that no one represents the real autism. This, in its somewhat rambling, possibly overly earnest, and well-meaning glory, is also the real autism.

Sarah Kurchak: You read To Siri With Love recently. Can you give me your general impression of that book?

Jane Kurchak: OK, what I went through while reading was a range of emotions. Mostly it was anger, and then sadness. But, I guess, ultimately I felt that Gus was the punchline and he wasn’t in on the joke. And that bothered me. And I kept thinking…she’s his mother, and that individual that should be the most secure person, place, everything on earth was [instead] doing this end run behind him and telling the whole world about his bathroom issues. And it wasn’t her story to tell.

I always put you in the kid’s position. How would you feel if that were going on? How would you feel? How is Gus going to feel in ten years when maybe the reality of that book hits him? It may or may not, but it still was never her story to tell.

Another thing that bothered me were the number of people and celebrities that were gushing over this book. I kept thinking…why is nobody saying to her “Maybe you shouldn’t be telling Gus’s toilet secrets?” I don’t know. So that’s what Siri did to me. And, in that case…I never, ever questioned that she loved Gus. I just don’t think that she went about all of this the right way. And who am I to judge? But she put the book out there. It’s for all of us to read. We’re going to have opinions. And I just don’t think that was her story to tell.

Which brings us to the article in The Washington Post that we read last week, which was called “Bystanders were horrified. But my son has autism and I was desperate.” Can you give me your general impressions on that?

That made me cry. As upset as I was with the whole Siri book, that pales by comparison to that article I read. That’s child abuse. It is. And, again, I put you in that kid’s position. And never…and I’m not saying that I’m parent of the year, or any of those things. I stumbled through this. I didn’t know. But I cannot, for the life of me, ever ever imagine thinking that was a good idea. To do it wasn’t a good idea. And to write about it is as repugnant as the action.

I was thinking…what the eff is that lady thinking? “I was desperate? People were watching me?” You took him into the damned situation in the first place! This isn’t about her. It shouldn’t be about her. She wanted him to see Elmo.

What I noticed in that piece, even more than in Judith Newman’s observations, was that she kept blaming situations on her child’s autism that were actually problems involving people’s perception of her.

This is all about her. This is all about her.

I try to have sympathy. Not just as a human, but as a writer. Because I think we do have somewhat different boundaries. And yet…I am also someone who has significantly benefited from other people protecting my boundaries so that I could get to the point where I could decide to reveal perhaps too much in certain situations. But even though I am an open book in a lot of ways, there’s a lot of stuff that people don’t know.

And there’s a lot of stuff that is probably going to get weirdly meta in this conversation, where we’re going to talk around what we don’t talk about in my life, so that it can’t be Google-able and people can’t attach things that still have a lot of stigma around them to me, so that I can continue to survive and function as a person in the world and as a writer. As small as my profile is, it’s still a public profile. And none of that would be possible if you and dad had ever been more public about my life.

And we’ve talked about this before. It never occurred to me to make any of your stuff public. We talked about your sleep thing. We all knew about your sleep thing and I joked about that. “Sarah didn’t sleep! That’s why she’s an only child.” There were jokes like that.

There are other situations that we will never discuss. But they were never insurmountable and I can tell you that when some of those things were happening, I would simply say “She’s not going to be doing this at ten. She’s not going to be doing this at sixteen.” It was in the moment.

Do you remember…of course you remember wearing the Smurf hat to Pupo’s [Welland, Ontario’s most beloved grocery store].

I also remember wearing the Smurf hat in grade nine.

I do, too. But that was a bit of a dare, and you go for it. But you loved that hat. And then remember we had to convert it into a Smurfette hat, and you had those big yellow yarn braids hanging down? I loved that you wanted to put that on your head and wear it to the grocery store. You had so much fun doing that, why would I not have gone along with that?

And I do want to be clear for anyone who is going to read this and think this is just an example of someone who is quirky and not “really” autistic: This is an example that we can talk about freely. There are other ones that are way more private that we’re not going to get into. But your choices in all of these situations came from the same compassion. They all came from the same logic. And ultimately ended up benefitting me in the same way, too.

Yes, I can see where you’re going. Yes.

In this conversation, we’re talking about To Siri With Love as a book, because we’ve both read it. We have only read Whitney Ellenby’s article that was published in The Washington Post. We haven’t read Autism Uncensored, her forthcoming book, as a whole. And this is, in part, because you have asked me not to. So can we get into why you asked me not to read this book?

Your level of empathy can be debilitating. You’ve always been like this. Always. And I see your daily struggles. I see you try to function in a pull-up-your-bootsraps neurotypical world. And I know if you read this book, it will crush you. It will take a bigger toll on you, by far, than Siri did. And, as your mother, my concern is your ability to continue functioning carrying that level of upset. So it’s a selfish motive because I don’t want you to hurt and I know that what we’ve read is only a small part of what’s gone on. I don’t want you to read it.

If you were a writer, and you decided to write about me and my childhood, how do you think you would approach it versus what you’ve seen from these parent memoirs?

I have always said to you, to anybody that will listen to me, I have learned more about life in the world from you than from anyone or anything else. And if I were to write, it would be about the lessons that I’ve learned from you. Nothing that you’ve learned from me, but what I’ve learned from you. Only from my perspective. I would never, ever expose, without your permission, any of the incidences that have happened. But every one of those was for me to learn more than it was for you to learn.

So I guess it’s that. Watch your child and learn from them. Take you cues from your child. Just because I’m your parent doesn’t make me right. I would write about how you enrich my life. And people might read this and think “You have to say that. You’re a mother.” They can think what they want. My reality is that my life is a better life because of you. I’m a far more tolerant person. I’m a far more understanding person because of the lessons that I’ve learned from you. Not just because you’re autistic but because you’re autistic and the way you view things and the way you approach things has taught me a different way of viewing and approaching. So that’s what I would want people to know.

So I think we’ve already touched on this a bit but I’m going to try to get a bit more explicit because, for me, this isn’t just an issue of what we write about autism. What concerns me is that this gets to the heart of the stories that we tell about autism in daily life. And when I approach these books…I’ll admit, part of it is professional jealousy, because I want to have at least a fraction of the platform that these people have. I want to be able to write about my autistic life or write autistic characters that can make the next generation feel less of whatever the hell it was that I felt growing up.

But it goes beyond that, too, because I am someone who has benefitted—and, I would argue, only survived and reached this point—because of the stories that nobody told about me. Because I had parents who didn’t exploit me, didn’t film my meltdowns, didn’t tell people about, say, how much I lost my shit at the dentist every time I went, didn’t talk about my toilet training, my utter attachment to you to the point where you couldn’t really go anywhere alone without me freaking out. And these are all things that, again, I want to point out to anyone who is reading this, I am glossing over because this is as much detail as I feel safe revealing under my byline now. The only reason that I feel that anyone can come at me and say “You’re not autistic enough to count” or “You’re not the kind of child that they’re talking about here” is because, when I was that kind of child, no one told on me. When that happened, you would take me out of the situation. No one saw it. And then you wouldn’t talk about it later.

And it would never have occurred to me to talk about it later.

You also, I want to point out, suffered because of that. For all of the talk about autistic kids not being aware of their surroundings, I was hyper aware of the level of criticism that you and dad faced, often when I was around, for ostensibly coddling me, or overprotecting, or spoiling me. Obviously it never occurred to you to say anything, but it could have alleviated your burden if you had told people why you were doing it. And you never did.

No. I never really thought of that before. It didn’t occur to me.

We knew what worked for you. If we were to go into a situation with you, we knew what worked and what didn’t. So if we had to remove ourselves from that situation and hang out somewhere else, what was the problem?

I guess there’s a price that you pay…and people judge. We all judge. But we’re so…who wrote the damned book? Who wrote the book on how society has to function? What’s normal? We can apply it to your temperature, but we certainly don’t need to apply that to behaviour.

I think people assumed that I was a nervous, clingy child because I wasn’t pushed enough, when the reality was that you guys were like that because I was a nervous and clingy child and any steps I’ve made in life are because I have a secure home base. A safe place where I’m never going to be exposed or judged or unduly pushed into something.

And that’s what I feel like every single parental home should be, regardless of if you’re 6 or 36. You should be able to come here, to decompress, and the world doesn’t get to peek in.

My main point that I wanted to discuss here is that I’ve been protected by what you and dad didn’t share, but I also want to say that I think I was really nurtured by the fact that you didn’t bring any outside measurements to my growth and development. Ever. You always always wanted to work on my terms and do what actually made me succeed or survive, or grow. I bring up that shoe story that was in Refinery29 to parents a lot, because I think it’s a great example of how practical you were. The modifications didn’t help. They made me sad, because they ruined my shoes. So you were like “That’s not the solution.”

Unfortunately, because of the narrative that we have around autism now, so many parents are so scared of screwing up and so scared of having these autistic children who won’t be “normal” in the future that they just keep hammering away at one thing, even if it’s not working, even if it’s harming their child, like it’s the only answer.

So again we get back to society’s expectations is driving these parents to make these ridiculous decisions. It’s all of these benchmarks. Why are those the rules?

We should probably wrap this up, but one last thing that I want to say is that I am not just concerned about what these books reveal about their subjects and how that harms them, but I’m also dubious about the purpose of them at all. These are books that are intended to expose the “real” autism or shed a light on the plight and what I wonder is who this level of awareness serves. It seems to me that, as long as the actual issues that they’re talking about have stigma attached to them, we’re not helping autistic people by talking about them in this way. We’re helping carers, because people will sympathize with them. If using a diaper is still stigmatized, then talking about an autistic person who uses a diaper is only going to make people sympathize with the person who might have to help them with it, as opposed to helping people accept that some people just happen to use diapers.

Until the actual autistic needs and behaviors are accepted, I don’t see any purpose to this kind of awareness beyond narratives that peddle in tragedy and the lionization of non-autistic people.

That’s it exactly. I don’t know a catchy phrase for it. But they put it out there, you see how the public eats it up and it’s permission to be the victim. So that’s why it’s going to sell. And I bet there are a lot of…I have no idea what the statistics would be, but there’s no way in the world that Dad and I are the only two who let it play out this way. There have to be a ton of people like this, but those stories just aren’t as exciting.

I’ve become associated with a lot of great parents through Twitter, and I know they’re out there. Unfortunately, part of what makes them great parents is that they don’t dominate the conversation, so you don’t see them.

So you’re going to write a story. You know, when you write that story, you’re going to expose yourself to more criticism.


And I’m not going to lie. I think about that. And I wish it wouldn’t happen. But I have to say, in this case, you’ve taken it upon yourself to help someone that can’t really speak for themselves and I’m so fucking proud.

It’s not that they can’t speak or communicate, it’s just that I am lucky enough to have slipped into a platform that…you know, I might have a higher profile career if I weren’t autistic, but it’s still more than a lot of great autistic writers and bloggers are afforded. And I’m just…I don’t know…what is any of this for if the next Sarah has to live all of this the exact same way?

OK. And I just want you to know that I’m proud.

I’m wondering if it’s going to seem incredibly self-serving if we end on my mommy being proud of me.

Well, you can decide whether you want to put that in or not. But I’m not just throwing that in. I am.


Originally published at Medium