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The disturbing history of Dr. Asperger and the movement to reframe the syndrome

“It’s up to them to decide if they want to be named after someone like him.”

The memorial at Am Spiegelgrund, a children’s clinic in Vienna where children were euthanized and used for medical experiments under the Nazi regime.
Ronald Zak/AP

When historian Edith Sheffer arrived at the Vienna archives to learn more about Dr. Hans Asperger, a pediatrician credited with identifying and defining autism in the 1940s, she was excited to learn about the scientist. Her son had been diagnosed with Asperger’s when he was 17 months old.

But Sheffer did not find what she expected. “Literally, the very first file I found on my very first day was his district party file that testified to his involvement in the racial hygiene measures of the Third Reich,” she told me.

While Asperger was never a member of the Nazi Party, Sheffer discovered that he played a critical role in identifying children with disabilities and sending dozens to Spiegelgrund, a children’s ward in Vienna where adolescents were euthanized or subjected to experimentation. Her research culminated in her new book, Asperger’s Children: The Origins of Autism in Nazi Vienna.

For Sheffer, the story is also personal because of her now middle-school-age son. And in light of Asperger’s past, a movement has sprung up, spearheaded by an 11-year-old boy with autism, to change the name from Asperger’s syndrome to social communication disorder. The petition has gathered more than 28,000 signatures as of Monday.

Sheffer is a senior fellow at the Institute of European Studies at the University of California Berkeley. I spoke with her about the potential significance of the name change, and the issues involved in diagnosing it and other mental conditions, among other subjects.

Our conversation has been condensed and edited for clarity.

Hope Reese

Why wasn’t more known about Asperger until recently? Were people afraid to tell the truth about him?

Edith Sheffer

On his Wikipedia page and in the parent manuals, there was always a paragraph or two saying Leo Kanner in the United States came up with the diagnosis, and then Asperger was working in Nazi Vienna. Asperger was known for defending kids with disabilities and supposedly emphasized their special talents in technical subjects in order to rescue them from the child euthanasia program. And Asperger cultivated that image in the postwar period, telling people he’d risked his life in order to rescue children for career advancement.

He was just such a minor figure in the [euthanasia] program, he didn’t actually work at the killing center. What he was doing was transferring children [to the killing centers], and it was such a common practice at the time, I don’t think it drew notice. In Austria, the Nazi past hasn’t been dealt with as thoroughly as in Germany, so Asperger was not a high priority. Also, in Austria and Germany in general, autism isn’t as mainstream of a diagnosis the way it is in the US, so he wasn’t of great interest for that reason either.

I thought about abandoning the project once I found out it wasn’t a heroic story but a horror story. I seriously thought, God, what can I tell about this man?

Hope Reese

Did it also make you wonder about other diagnoses that are named after certain people, and why? Do we often look back with a critical eye at the people who were involved in certain illnesses or diagnoses?

Edith Sheffer

So there are maybe a dozen or so diagnoses named after Nazi-era doctors that now go by alternative names, the most common of which was reactive arthritis, which used to be Reiter’s syndrome. Asperger’s is the most famous eponymous diagnosis linked to the Nazi period, but there are other precedents where we’ve renamed diagnoses.

It’s really remarkable the American Psychiatric Association didn’t vet Asperger’s research. Usually when you make an eponymous diagnosis, you’re supposed to research the individual you’re naming it after. That’s standard procedure, and they did not. So now we’re in this predicament.

Hope Reese

How do you respond to the argument that there’s a historical value in remembering who he was?

Edith Sheffer

My response is I don’t want my son to be named after someone who sent children like him to their deaths.

The point is that it’s an identity for millions of people, and it’s up to them to decide if they want to be named after someone like him.

Hope Reese

Recently in the South, there’s been a movement to remove Confederate flags and statues. Is this similar?

Edith Sheffer

Absolutely. We’re in a moment now of reconsidering the past and how we want to label the streets and schools around us. My son’s school, David Starr Jordan Middle School, just got renamed because the man had [supported] eugenics — not sterilized anyone personally, but written about sterilization. So we’re in a moment in our culture, I think, where we’re becoming more sensitive to how we want to identify and what values we want to represent.

Hope Reese

My brother, a special ed teacher, told me his colleagues rarely talk about Asperger’s anymore. And the term itself is no longer an official part of the DSM [Diagnostic and Statistical Manual of Mental Disorders] — it’s come under the umbrella of autism spectrum disorder. Why does the name still matter?

Edith Sheffer

Yes, it’s no longer part of the DSM-5; it was reclassified in 2013 as autism spectrum disorder. But in my experience as a mother, people definitely still use the term to refer to children; it’s not used nearly as frequently as it used to be, but a lot of people still do use it.

My son once saw a psychiatrist who told me he should feel so lucky because he’s named after this brilliant doctor who rescued children, using Asperger’s history to make him feel positive about his diagnosis. So it’s something that I still encounter.

Hope Reese

The petition has a goal of 35,000 signatures. What does it take to actually change the name of a syndrome, which, though it isn’t in the DSM, is still used widely by the medical community under the autism umbrella?

Edith Sheffer

You know, it’s an interesting question. People have been living with this identity for years. People who were diagnosed before 2013, or even since then [because some doctors continued to use the term] — I mean, it’s not like reactive arthritis. You identify your entire personality with Asperger’s syndrome. So it’s hard to rename that overnight. Also, people will call themselves “Aspies.” Is that a little different because it’s not really after the man’s name?

A lot happens with teachers, with physicians, who talk to parents. Then that affects how parents talk to their children. The American Psychiatric Association took the right first step of reclassifying it medically, and raising awareness is one way to have people stop using the name.

Hope Reese

If the name were changed to social communication disorder, would it have an impact on parents and their comfort level with the diagnosis? Or with the way society perceives these children?

Edith Sheffer

It’s definitely a less scary label. I think people have favored Asperger’s syndrome over autism because autism suggests, in the public mind, a disability that impairs you for life, whereas Asperger’s syndrome suggests, “Oh, you can even be superior to other people, right? You might possess special talents.”

Social communication disorder is a more benign label. I’m all in favor of more benign labels because autism has really turned into a bugaboo of a term. But we’re just really without an adequate vocabulary to discuss autism.

Children can bear very little resemblance to one another. Science recognizes that autism is really an imperfect umbrella label, and the hope is that within 10 or 15 years, we’ll be able to break it up into subtypes or into multiple diagnoses, but right now we’re just not at that point.

I’d like to draw the analogy to hysteria, white female hysteria in the 19th and early 20th centuries. Women who were hysterical could have epilepsy, or syphilis, or bipolar disorder, or schizophrenia, or anxiety — and science wasn’t at a point then to disaggregate it. I bet in 10 or 15, years we’ll be able to break up different kinds of autism. Social communication disorder doesn’t get us very far, but I guess for the moment, it’s better than nothing.

Hope Reese

Asperger is implicated in sending children off to their deaths. But he also did recognize “special” children and is credited for saving them. How do you suss apart the complicating factors?

Edith Sheffer

So he claims that he didn’t report children [to the Nazi authorities] that he was obligated to report. There’s no way to prove that; he may well have rescued children, and he would deserve commendation for that. I allow for the possibility that he may have rescued children. It doesn’t change the fact that he did send dozens to their deaths. As a historian, I feel it’s important to present the context in which he worked.

The fact is that he was a conscious and willing participant in a system of killing. He associated with the top leaders of the euthanasia program in Vienna. People who hear about his involvement will automatically assume, “Oh, well, he had to in order to survive,” or, “He was coerced.” But no — a lot of what he was doing was voluntary. He did not need to associate with these men; he did not need to be at that hospital that was so heavily involved. He worked down the hall from people doing lethal experiments on babies, depriving them of fats and vitamin A.

The fact is, the men with whom he was associating were doing worse things — but he could’ve done a lot more.

Hope Reese

You wrote, “The Third Reich was a diagnosis regime obsessed with sorting out the population.” Can you expand on that?

Edith Sheffer

So we think of the Third Reich in terms of extermination, and the Holocaust of 6 million Jews, but I think that can obscure the extent to which all of this was based on the initial act of labeling people. So before you exterminate, you need to evaluate the person and decide to sort them.

The Third Reich was extremely concerned with sorting people into categories. Are they redeemable, are they irredeemable? There was as much effort put into teaching asocials or the work-shy to work by putting them in labor camps, or “helping” children that were seen to be disabled who might be able to be remediated. So it was a double-sided effort.

The diagnosis regime was this massive effort to index the population. Nazi Germany had these public health offices that kept large registries on individuals, combing through school records, medical records, down to sports club records, and each person would have a file. So in Vienna, a quarter of the population wound up being indexed. This could be anything from “your father’s an alcoholic” to “you have a clubfoot” to “you misbehaved at school and you’re failing.”

Hamburg indexed 60 percent of its population, and these became the basis of whether or not you were going to be sterilized, if you would be allowed to get married, if you’d be deported to a concentration camp, or if you were going to be eliminated. The Nazi regime was basically this massive effort of reengineering the population through this labeling, which then sets the outcomes.

Hope Reese

Considering your personal experience with your son, do you see other flaws in our current system of diagnosing children? How would you like your son to be evaluated?

Edith Sheffer

We’ve been in a moment, since the 1990s, of watching children more and more carefully hit prescribed milestones. There’s a rise in psychologists working at schools, for better or for worse, and more and more children are being labeled and raised on psychiatric medications. As a society, we are replicating a bit of the “diagnosis regime” where every kid has their set of issues. That can be great in the service of individualized attention, but there’s also a danger of children identifying themselves as having a disability when it’s really a difference.

At home, we never used the term autism or anything. It was just that he was working on certain issues, but my daughter has her own issues, so we just presented it as everyone has a different kind of mind.

Well, in fourth grade, they had a disability awareness day. They had cartoon images of kids with different issues — a kid in a wheelchair, a kid who’s deaf, and a kid with autism. The kid with autism was playing with trains, and there were bullet points about lack of eye contact and this and that, and my son came home with this cartoon, right? That’s a diagnosis regime, right? To draw a cartoon character of some kid with autism playing with trains? And he was just devastated. He said, “Is this me?”

Ever since then, he’s hated the label, and the label doesn’t fit him. When I tell people about the label, they make a bunch of assumptions about his personality that just aren’t right. So yes, I much prefer to describe him as a person.

Hope Reese is a journalist in Louisville, Kentucky. Her writing has appeared in the Atlantic, the Boston Globe, the Chicago Tribune, Playboy, Vox, and other publications. Find her on Twitter @hope_reese.