The Issues With ‘Asperger’s’
Tesla CEO Elon Musk just came out as having Asperger’s syndrome. Here’s a primer on the issues with that now-defunct disorder label.
Tesla CEO Elon Musk just came out as having Asperger’s syndrome. Here’s a primer on the issues with that now-defunct disorder label.
On Saturday Night Live this week, Telsa CEO and Grimes’ paramour Elon Musk came out as having Asperger’s syndrome. During his opening monologue, Musk joked that he was the first-ever SNL host to have the disorder — or at least the first to admit to having it openly.
There’s a couple of issues with that remark. The first is that SNL very much had an openly Autistic host in the past, former cast member Dan Aykroyd. For years, Aykroyd has been vocal about being Autistic and has discussed how his own autistic special interest in the paranormal informed the writing of the 1984 film Ghostbusters. SNL has also been hosted by comedian Chris Rock, who came out last year as having Nonverbal Learning Disorder, which is on the Autism spectrum. Frequent SNL musical guest David Byrne is openly Autistic too. So Musk is far from the first out, proud Autistic to grace the Rockefeller Plaza stage.
But the real issue with Musk’s remark, as many Autism self-advocates have been quick to point out on Twitter, is not his self-aggrandizement. It’s his use of the term Asperger’s, which is generally considered by most prominent voices in the community to be outdated and unhelpful at best, downright dangerous, and anti-Semitic at worst.
The American Psychological Association removed Asperger’s syndrome from the Diagnostic and Statistical Manual of Mental Disorders (the DSM) back in 2013, at which point it was folded into a larger category, Autism Spectrum Disorder. Asperger’s syndrome is also slated to be removed from the ICD-11 (the international analogue to DSM in the U.S.) in 2022, where it will also be combined with a broader Autism Spectrum Disorder label. The Autistic self-advocacy community celebrated this news in both cases.
Prior to its removal from the DSM, Asperger’s syndrome was a label typically assigned to Autistic people viewed as “higher functioning,” often men with high intelligence who behaved awkwardly and were resistant to change. Conversely, an Autism diagnosis was traditionally put on young children, again usually boys, who were more visibly disabled, disruptive, or in need of support.
The official reason the psychological establishment got rid of Asperger’s is that separating Autistic people into two distinct categories — one supposedly “high functioning yet awkward,” the other “low functioning and heavily impaired” — was no longer an accurate summary of patients. Many people existed somewhere in the realm between the two categories or possessed a combination of features from both.
Separating Autism from Asperger's also presented a lot of insurance billing issues. The social skills training typically prescribed for asperger’s kids simply taught them to imitate neurotypical behavior. It did nothing to address other features of the disability they might have, such as sensory sensitivities, challenges gear-shifting between activities, or experiencing explosive meltdowns at the end of a long day.
Aspies had long been assumed to have an easier time in life than their more visibly Autistic peers. In actuality, much of their suffering was simply shunted off into the private realm, experienced alone at the end of a long day spent masking as someone more neurotypical. On the flip side, many people labeled as Autistic routinely had their competence underestimated and their humanity erased, particularly if they couldn’t speak or needed caregiving support. The two distinct labels were clearly failing at describing the psychological lay of the land. So the APA and World Health Organization both decided to do away with them.
I’m a “highly functional” Autistic. It takes a lot of work.
On engineering a life that suits my neurotype.devonprice.medium.com
If the only problem with the Asperger’s label were its being a bit out of date, most Autistic people might forgive Elon Musk’s use of it. After all, he grew up in South Africa in the 1970s and ’80s, so Asperger’s is probably the label he received when was diagnosed. Plus he clearly embodies the Asperger’s stereotype: he’s an obsessive, hyper-successful nerd with a lack of social graces. So what’s the problem with identifying as Asperger’s?
To really understand the conceptual problems with Asperger’s disorder, we have to look at its history. It’s named after Hans Asperger, an Austrian pediatrician who directed the special education division of a Vienna hospital, and then later colluded with the Nazi regime to help them “study” disabled children. In 1944, Asperger published a detailed profile of a specific subclass of his disabled patients, a highly intelligent, well-spoken, socially awkward group of kids he deemed “little professors.” This writing later informed the diagnostic criteria for the Asperger’s syndrome.
For many years, historians and psychologists believed Asperger was a well-intentioned but canny pediatrician, who cooperated with the fascist regime in order to spare the lives of his Autistic patients. In his landmark 2015 book Neurotribes, author Steven Silberman describes Asperger as having a strong attachment to his nerdy “little professor” patients, who reminded him of himself. By writing about this population of neurodiverse kids as capable and socially “valuable,” Asperger worked to spare many of them from Nazi extermination. This view of Asperger and his legacy was still widely believed in 2013, the year that the disorder was removed from the DSM.
However, in 2017 newly unearthed documents revealed that Asperger took a far more active role in Nazi eugenicist programs than had been previously known. The pediatrician wasn’t just studying supposedly “high functioning” Autistic patients, and working like hell to develop a psychiatric paradigm that would save them. He actually studied a wide variety of disabled patients, many of them Autistic kids who weren’t as verbally and intellectually impressive as his Aspie kids. In several cases, Asperger referred these more visibly disabled kids out to the Am Spiegelgrund Clinic, a Viennese extermination center.
This revelation really cuts to the heart of how an ableist society distinguishes between the disabled people it considers worthy of life, and those it gladly resigns to institutionalization, forced sterilization, and even death. So-called Aspie children were accepted only insofar as their disabilities made them productive contributors to the Nazi regime; their worthiness was built upon the contrast Asperger drew between them and the less productive, high-support-needing Autistics he sent to die.
Conceptually, there is no Asperger’s disorder without the belief in a more severe, less sympathetic form of Autism to prop it up. When accomplished, wealthy tech bros and other self-styled public geniuses like Elon Musk identify as having Asperger’s, it’s this hierarchy of worthy versus unworthy disabled people that they are evoking. The term begs neurotypicals for social acceptance by highlighting how valuable people like Musk are, how different he is from the Autistics who need caregiver support 24/7 and will never hold down a full-time job.
A number of adult Autistics identify with the Asperger’s label specifically because it differentiates them from more visibly disabled, higher-support-needing Autistics whom society reviles and continues to rob of body autonomy and legal agency to this day. I love the gothic fashion YouTuber Of Herbs and Altars, but I wince when they say they identify as an Aspie because the word “Autistic” evokes a scary neighbor they had in childhood who couldn’t speak and had violent meltdowns.
The desire to distance oneself from the “wrong” kind of disabled people is counter to the goal of Autistic liberation and disability justice. It’s a bid for neurotypical approval that reinforces the same values that left us oppressed and excluded in the first place. Either all Autistics are worthy of life, no matter how awkward, “scary,” unproductive, or cringey we are, or none of us are. The freedom offered by the Asperger’s label is conditional. The moment we stop presenting as the high-performing, compliant nerds society wants us to be, all the status we’ve achieved is wrested from our grasp.
This is also why it’s vital that Autistic people not attempt to distance ourselves from people with even more reviled mental health labels such as Narcissistic Personality Disorder and Borderline, by the way. We have nothing to gain from the belief that certain types of mentally ill people are fundamentally evil or broken. Our community will always possess traits society looks down on and stigmatizes in the exact same ways. Instead, we have to challenge the idea that difference is pathology, and fight to create a world where no disability marks a person as inhuman and disposable.
I believe that all disabled people need to join forces with one another, recognize our common goals, and fight for the right to define who we are and what society owes us. To that end, I don’t believe that Autistic people should reject self-identified Aspies out of hand. Not everyone who uses the label is an exploitative, transphobic, union-busting Elon Musk.
Changing one’s self-concept is slow, messy work. Many people feel attached to the labels that were forced on them for most of their lives. It pains me to see a twentysomething transgender person shame a 45-year-old trans woman for identifying as a transsexual, and it also pains me to see a young Autism self-advocate shame an older adult who always thought of themselves as an Aspie.
I also think it is fundamentally ableist to demand that every person in the disability justice world use the exact same words at all times. Words are flawed and ever-evolving tools, and we get farther as a community when we listen to the meanings and beliefs that hang below a person’s vocabulary, rather than shame them for getting a phrase or two “wrong.” When I recommend people read Anand Prahlad’s The Secret Life of a Black Aspie, I don’t hedge about him using the “wrong” language. I know for a fact that his work serves to uplift all Autistic people, particularly Black genderqueer ones who grew up in poverty, like himself. He rejects respectability politics outright. Elon Musk gleefully feeds into it. There are political differences that go much deeper than language.
We Can Abolish Language Policing
Words can inspire reflection and growth, instead of prompting attackshumanparts.medium.com
Additionally, I believe that while terms like “Asperger’s” and “high functioning” are problematic, they can also be used to reflect a person’s social positioning. Society grants more rights to Autistic people like me, who can speak and make eye contact and feign social niceties. At the same time, society withholds rights from Autistics who need help eating and toileting, can’t speak, or constantly and visibly self-stimulate. No matter how much I personally reject terms like “Asperger’s” and “high functioning,” society will still perceive me on those terms and reward me for that status.
I have a friend, Taylor, who is nonverbal and identifies as low functioning and low intelligence specifically because those terms reflect how society sees him and treats him. Another friend, Pixie, specifically draws a contrast between herself as a low functioning person and the “smart Autism people” who dominate conversations about neurodiversity online. I respect Taylor and Pixie’s rights to self-identify, and I see why they recognize a clear distinction between the high-functioning/Asperger’s types like me and the people who have always been labeled Autistic, such as themselves.
Autistic people are not monolithic. Though a lot of very vocal Autism self-advocates oppose the term Asperger’s, there are a lot of Autistic people throughout the world who still use it. Ultimately, it’s not the word that is the key problem, even with its horrific, fascistic roots. The word Autism doesn’t have a sunny history either, after all. It means “isolated self,” and the psychiatrist who coined it intended for the word to signal how socially and emotionally void he believed we all were. Most mental illness and disability labels are inextricably tied to psychology’s eugenicist and white supremacist history. Pathologizing a person’s “deviance” instead of working to accommodate their needs is always going to be a paradigm that harms the most vulnerable among us.
Ultimately, liberation for disabled people isn’t about scrubbing ourselves free of problematic language, so much as fighting the frameworks that judge a person’s humanity by their ability to comply with social rules and be productive. When the high-status Elon Musks of the world bask in an Asperger’s identity, it’s the belief in their own superiority and their desire for neurotypical approval that is the core issue. And fixing that problem must go a lot further than just changing our language.