Asperger’s syndrome hasn’t been an official diagnosis since 2013. The Diagnostic and Statistical Manual of the American Psychiatric Association (DSM-V) was published that year, and it declared that anyone who had been diagnosed with Asperger’s should be diagnosed instead with autism spectrum disorder. Although Asperger’s, the syndrome named after Austrian researcher Hans Asperger, was added to the DSM only 19 years earlier, subsequent research has shown that it doesn’t differ enough from other types of autism to warrant a separate diagnosis.
So, just like that, Asperger’s syndrome — estimated to affect 37.2 million people worldwide — was wiped off the books in the U.S.
Yet, six years later, the term persists. Thousands of Americans, young and old alike, continue to identify as a person who has Asperger’s. Some call themselves “Aspies.”
“There has been pushback from the Asperger’s community because many people view it less as a diagnosis and more as their identity,” says Adam McCrimmon, PhD, an autism researcher and psychology professor at the University of Calgary. “They have friends with Asperger’s, go to Aspie conferences, and belong to Aspie networks. So, when scientists began saying it was no longer an official diagnosis, they said ‘no, we have Asperger’s; we are Aspies.’”
Many parents also prefer the term “Asperger’s” to autism spectrum disorder. They find it easier to accept and understand than a broad umbrella diagnosis — especially when their child does not have the cognitive and language limitations that many other autistic children do.
“On one hand, it can absolutely be a relief when your child gets a milder diagnosis,” says Edith Sheffer, PhD, a historian, formerly at the University of California, Berkeley; author of Asperger’s Children: The Origins of Autism in Nazi Vienna; and mother of a child who had been diagnosed with Asperger’s. “Plus, Asperger’s has a connotation of superperson or savant powers.”
On the flip side, an Asperger’s diagnosis can underplay the challenges these children face every day. “Ultimately, it can be a disservice to kids who need help,” Sheffer says. “In my experience, the state rolls out the red carpet for an autism diagnosis more so than for Asperger’s. Knowing this, many families — including mine — would clinic-hop, because different doctors often came to different conclusions.”
When applying for services for her son, Sheffer used his autism diagnosis rather than Asperger’s so that he’d receive adequate help. “What’s unfair to kids,” she says, “is that after five years of therapy, my son was doing better than another kid with Asperger’s who didn’t get therapy.”
Kids not getting the treatment they need is in itself a very good reason to push for doing away with the term. But there’s also an equally strong, if more jarring, reason to drop “Asperger’s” — its Nazi-sympathizing namesake.
“Parent manuals always included a paragraph saying Hans Asperger did wonderful things for these children. I even took my son to a psychiatrist once who said ‘you should feel good about this diagnosis; you’re named after a hero.”
Hans Asperger, a pediatrician in Vienna during the Third Reich, was long credited as the first professional to identify the types of children who, if they’d been evaluated between 1994 and 2013, would likely have been given an Asperger’s diagnosis. He didn’t coin the term “Asperger’s syndrome,” but he published research on these children, leading British psychiatrist Lorna Wing to name the syndrome after him in a seminal 1981 paper.
Asperger recognized that these kids displayed abnormal patterns of behavior and struggled to fit in socially — but he also noted their superior cognitive and linguistic abilities. These latter characteristics, he believed, made these children teachable and therefore “useful.” As for kids with more disabling forms of autism, however, he saw them as lost causes. So, Asperger sent them off to Am Spiegelgrund, a children’s clinic in Vienna, to be dosed to death with barbiturates.
But this part of the story was buried. After the Nazi regime fell, only the part about Asperger saving certain children became lore. Thus, for more than 70 years he was seen as a champion for children on the autism spectrum. “Parent manuals always included a paragraph saying Hans Asperger did wonderful things for these children,” says Sheffer, who revealed all this in her 2018 book Asperger’s Children. “I even took my son to a psychiatrist once who said ‘you should feel good about this diagnosis; you’re named after a hero.’”
Before beginning research for her book, Sheffer didn’t have any reason to doubt Asperger’s sterling image. “I actually set out to tell a heroic story, based on the suggestion that he labeled and protected kids with superior abilities — like a psychiatric Schindler’s List,” she says. “But the very first file in the very first archive I opened told me the real story was very different.”
Given these facts, it’s a wonder Asperger’s faux hero status survived for so long. Sheffer believes it persisted in part because, like most doctors in Vienna, Asperger never officially joined the Nazi party. “But he was a Nazi in all but name, working in the upper echelons of the euthanasia program and knowingly transferring children to be killed,” she says. After the war, he became the director of a children’s hospital and began mythologizing himself as a Nazi resister who rescued children. Sheffer says he remained in a powerful position right up until his death in 1980, so nobody dared challenge him.
Despite his irredeemable actions, one might argue that Asperger deserves at least some credit for identifying autistic children who may have otherwise flown under the radar and appreciating their superior abilities. Sheffer shoots down this idea.
“I give credit to Lorna Wing,” she says. “Our understanding of Asperger’s is because of her work. She named the syndrome after him as a professional courtesy, but she did her own research, which was much more sophisticated and voluminous than his. His paper was a shoddy rush job based on only four case studies. He also called these kids inherently sadistic, malicious, and psychopathic, which has a connotation of criminality in German.” Wing got rid of all that damning and outright false rhetoric.
“This isn’t just a PC thing — it touches people at their core. They think, ‘Asperger might have killed me’ or ‘he may have sent my son off to be killed.'”
McCrimmon says that, six years after DSM-V came out, he doesn’t know any clinicians who still diagnose kids with Asperger’s. If any professionals had been making the diagnosis, hopefully Sheffer’s findings have deterred them — or will deter them as soon as they become aware. But how do self-declared Aspies, who don’t agree with DSM-V, feel about their label in light of this news?
“People told me to brace for pushback, so I’m surprised how many people write to me saying they can never call themselves an Aspie again,” Sheffer says. “I feel like 90 percent of the comments I receive are in that vein, from people who previously identified with Asperger’s who do not anymore. This isn’t just a PC thing — it touches people at their core. They think, Asperger might have killed me or he may have sent my son off to be killed.”
Ultimately, though, Sheffer believes it is up to each individual to decide whether or not to continue identifying with Asperger’s. “I think physicians should stop using it; it should not be a label foisted upon anyone else,” she says. “I fundamentally believe Asperger’s was born out of eugenic hierarchy, a desire to separate out who is disabled and who is a superperson.” In recent years, she says, there has been a movement to abandon these types of labels altogether and instead view autism as the multidimensional, heterogenous syndrome experts now know it to be.
Autism spectrum disorder isn’t a perfect diagnosis — and because it’s so broad, it may not feel like the best fit for people who would’ve diagnosed with Asperger’s before 2013. But as psychiatry advances further, McCrimmon says there will likely be more accurate subgroupings within autism in the not-too-distant future.
Until that time comes, however, autism spectrum disorder is the best label we’ve got — especially now that we know the truth about Hans Asperger.