~ 5 minute read PHOTO BY: WILL HEATH/NBC
In May 2021, billionaire tech entrepreneur Elon Musk disclosed his Asperger’s diagnosis on national live television, opening the floodgates of public criticism against him as well raising questions about his wealth and privilege. The event also prompted a reexamination of how people on the autism spectrum represent themselves, and what it means to have an Asperger’s diagnosis.
Hans Asperger first identified autistic traits in young children while working in Vienna in the 1930s and 40s. He was originally cast in a heroic light for saving disabled children from the Nazis. Since that time, his name has fallen into disrepute. When Asperger’s Syndrome was named after him in 1981, society was unaware that Asperger actively colluded with the Third Reich’s eugenics polices, sending many other disabled children to almost certain death. With these revelations, a moral odour had settled over the diagnosis for some people in the autism community, and many removed the term from their identity.
In 2013, Asperger’s Syndrome was deleted from the DSM-V (Diagnostic and Statistical manual of Mental Disorders, Fifth Edition) and the characteristics associated with it were incorporated into “Autism Spectrum Disorder” but this, too, is falling out of favour. Many on the spectrum identify themselves as “autistic” and the concept of self-representation itself is shifting. Do new disclosures and changes alter how people on the spectrum represent themselves? What about the larger issues of how autism fits into one’s identity and decisions about when, how, and where to self-disclose?
Autism Ontario assembled a panel of adults on the spectrum to discuss these and other questions. The panel included Courtney Weaver, freelance writer; David Moloney, Autism Ontario Board Member and Mutual Fund Indexer with CIBC; Julie M. Green, freelance writer and artist; Christian Malatesta; and Nicole Corrado. Michael Cnudde, self-advocate and Specialist Communications and Resource Development, Autism Ontario, acted as moderator.
“I think sometimes people get caught up in language,” said Julie. “But language in many cases, really does matter.” Language such as functioning labels, she said, is dividing the community. Julie pointed out that we don’t know Musk’s true intention. “Maybe he just called it Asperger’s because that was his original diagnosis,” she said, adding that perhaps “he didn't know the connotations of it.”
David agreed that the motivation behind Musk’s disclosure is uncertain. “I tend to flop between elitist rich kid, quite frankly, and someone who seeks to connect with the broader community so as to feel less isolated.”
Nicole saw Musk’s disclosure another way, noting that Asperger’s was probably just a label he identified with. “I saw an autistic man who was terrified, he seemed to be staring and seem to be freezing up.… I think he wanted to explain why he was so socially awkward. And this was his way of explaining it.”
The discussion shifted to the larger topic of self-representation including an article published online in response to Musk’s disclosure, “The Issues with Asperger's,” by Devon Price. “Ultimately, liberation for disabled people isn’t about scrubbing ourselves free of problematic language,” Price wrote, “so much as fighting the frameworks that judge a person’s humanity by their ability to comply with social rules and be productive.”
Several panelists took exception to this. Christian didn’t like the use of the word “liberation” in this context. “It sounds like we're stuck in a cage,” said Christian. Yes, we all have social rules to follow, he said, but the wording makes that “seem very provocative.”
Courtney found the premise of the article to be problematic. Price's thesis statement was that the focus should not be on "scrubbing ourselves free of problematic language" as much as "fighting the frameworks that judge a person’s humanity by their ability to comply with social rules and be productive". However, it appeared to Courtney that these two concepts were intertwined instead of separated throughout the rest of the article.
David was perhaps the strongest in his disagreement. While he used to reach out to media outlets urging them to use the proper language when he was younger, he now believes that "any language is immaterial to the conversation. What matters is social change and the driving force behind that change.”
The panel examined the experiences of other people in the public spotlight who have self-disclosed their diagnosis, such as environmental activist Greta Thunberg, who has described her own Asperger’s diagnosis as a “superpower.”
Christian observed, “The danger of calling it a superpower is that we don't want to put these people on a pedestal.”
David agreed. “What we should consider it to be is a unique way of thinking, perceiving and interacting with the world." As such, he noted, it should be simply considered a way of contributing to society.
Courtney noted while she shares the apprehension of some other members of the panel, regarding Thunberg’s description of autism as a superpower, she also acknowledges the confidence that Thunberg expresses by self-identifying this way. “She's confident about the causes that she is representing, which in this case is climate change. And I think that's incredible.”
Julie was upbeat about Thunberg’s phrasing because there’s so much focus on the deficits and challenges associated with being on the spectrum. It was also nice to see a young person like Greta calling out stuff that adults are not doing. “She’s shining a light on strengths for a change.”
Nicole also liked the way Greta self-identified. “It's cool because she's taking something that people are using as a disability and saying, No, I see it as an advantage.”
In the end, despite all the controversy, Julie found Elon Musk’s self-disclosure inspiring for the simplest of reasons: “I played the clip of Musk for my son because he's at an age where he's not feeling great about being on the spectrum; he feels very different. So knowing there's Greta and Elon and some people he can look up to, that is an affirming thing for his generation...”
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