The term is no longer in the US’s diagnostic manual for very good reasons…which include Nazis.
Originally published in the Medium publication, An Injustice!. If you’re a member over there, I sure appreciate claps as that’s how we’re paid. (You can do 50!)
In early May, Elon Musk made a personal announcement while hosting the NYC-based show Saturday Night Live, one that’s upset many autistic people: “I’m the first person with Asperger’s to host SNL, or at least the first to admit it.”
It’s okay if you’re not seeing the harm in that.
US society (and global perception at large) is becoming more conscious and undergoing many simultaneous changes in perception, like a massive detox — people at large are still ill-informed of impactful issues concerning disadvantaged communities, and the autistic population is no exception.
All we can do is listen to a variety of people from the affected communities, and learn.
In this case, community objections include the smaller issues that Dan Aykroyd was actually the first autistic person to host (which was uncool to gloss over), and the word ‘admit’ could reflect internalized ableism — but the main issue is around the term ‘Aspergers,’ which has become controversial, especially here in the US.
It was removed from the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5) in 2013, when Asperger’s Syndrome was absorbed by Autism Spectrum Disorder (many in the community prefer the more-descriptive Autism Spectrum Neurotype).
The associated functioning labels were also dropped due to harmful outcomes: those labeled “low-functioning” experienced opportunities being withheld despite ability and many in the “high-functioning” category were conversely presumed able to do things that they could not, therefore denied support and accommodations, leading to meltdowns and reduced functionality (and worse).
Basically, the functioning labels were a hot mess that left a lot of autistic people traumatized.
The new way has many flaws as well, mostly for also having a vague approach that leads to similar experiences of ableism — but at least it’s a little more specific and refers to support needs rather than pretty directly implying ability in the verbiage. Now, formally diagnosed autistics are assigned a Support Level at diagnosis. (Self-diagnosis is also widely accepted in the community due to excessive bias and barriers in the diagnosis process.)
I have a diagnosis of Level 2: Requiring substantial support. I was just diagnosed last year, but suspect I’d have been a Level 1 around 6–7+ years ago, as the problematic areas have greatly increased; something that’s common among autistics who mask their traits.
It’s presently a helpful distinction for me, as being without support has resulted in extended burnout and frequent meltdowns — however, it’s easy to see how it could backfire in very similar ways, especially as troubling traits fluctuate.
To provide an example of how problematic autistic traits can be fluid,
at this time I’m capable of doing things like writing essays about my current special interest (ta-da); but if I were to try to do this in an office, early morning hours, or even attempt to change topics, I’d very likely wind up having a meltdown, which would then take days (or more) to recover from.
I wasn’t always so sensitive in those respects and easily flew above the radar by subconsciously masking my traits (as happens, that backfired in a multitude of ways, including increased need for support).
Presently being a Level 2 doesn’t mean that I’m more intelligent than a Level 3, or less so than a Level 1.
These levels have absolutely nothing to do with intelligence, nor capabilities at large — instead describing our need for support/accommodations in order to function in our (neurotypically-biased) society.
The DSM describes differences in ‘social communication’ and ‘restricted interests & repetitive behaviors’ (the latter of which are affectionately known as special interests and stimming in the autistic community). This is a change from the old paradigm, in which those with Aspergers were widely viewed as being more intelligent due to superior intellectual development, a perception that has not died.
Public perception has very real effects.
When Elon Musk publicly disregarded the changes of DSM-5 in its home country, he portrayed himself as someone more intelligent than the autistic community at large; and the continued use of the term has negative ramifications on other autistics.
He could have used the updated terminology, helping to erase harmful stigma via a show that’s been a US culture staple for decades — but instead, he perpetuated it.
Sure, maybe he didn’t know, but given his fame and legendary genius status it’s safe to presume that someone gave him a head’s up, or he got there on his own; particularly since the change is nearly a decade old, and he’s been based here since 1995.
The term ‘Aspergers’ got its start in Germany, 1934, when Dr. Hans Asperger discovered Nazi psychiatry.
In a 2018 New York Times article, researcher Edith Sheffer described his work on autistic children: Some laud Asperger’s language about the “special abilities” of children on the “most favorable” end of his autistic “range,” speculating that he applied his diagnosis to protect them from Nazi eugenics — a kind of psychiatric Schindler’s list.
But this was in keeping with the selective benevolence of Nazi psychiatry; Asperger also warned that “less favorable cases” would “roam the streets” as adults, “grotesque and dilapidated.” Words such as these could be a death sentence in the Third Reich.
And in fact, dozens of children whom Asperger evaluated were killed.
Yes. You read that right.
The term Asperger’s is directly aligned with the murders of dozens of autistic children — all for the sake of Nazi eugenics, or wealthy white dudes deciding who’s “fit” to live life on Earth.
Another horrifying passage from the NY Times article: One of his patients, 5-year-old Elisabeth Schreiber, could speak only one word, “mama.” A nurse reported that she was “very affectionate” and, “if treated strictly, cries and hugs the nurse.” Elisabeth was killed, and her brain kept in a collection of over 400 children’s brains for research in Spiegelgrund’s cellar.
Sooooo, that’s where the term ‘Asperger’s’ comes from.
It’s Time to Do Better
While I understand that it’s hard for people to just have their diagnosis terminology switched on them, the changes in the DSM-5 were made for crucial reasons (more than discussed here) — and the update is having a really hard time gaining awareness.
This lack of societal knowledge means the continued perception that those with “Aspergers” are more intelligent/capable than those identified using the term “autistic.”
I want to emphasize that not all autistic people are aware of these US-based changes, and there are also situations where continued usage is logistically necessary. I don’t want to imply that individuals, autism organizations, and social media figures with the term in their branding are bad for not having changed.
We can only do what we can do. I get it.
But Elon Musk is not a likely-to-be-cash-poor non-profit or YouTuber, he is literally the richest person in the world and he’s also one of the most well-known.
He could have easily helped, but instead he did the opposite — and while that (alone) isn’t worth vilifying him for, the move shouldn’t just be overlooked.
It needs to be learned from.
Another quote from that NYT article brings this point home: Does the man behind the name matter? To medical ethics, it does. Naming a disorder after someone is meant to credit and commend, and Asperger merited neither. His definition of “autistic psychopaths” is antithetical to understandings of autism today, and he sent dozens of children to their deaths.
Other conditions named after Nazi-era doctors who were involved in programs of extermination (like Reiter syndrome) now go by alternative labels (reactive arthritis). And medicine, in general, is moving toward more descriptive labels. Besides, the American Psychiatric Association has ruled that Asperger isn’t even a useful descriptor.
She wraps up the essay with a request to the reader: We should stop saying ‘Asperger.’ It’s one way to honor the children killed in his name as well as those still labeled with it.
People act like psychology was built on the backs of giants, but it wasn’t.
Asperger may be the most offensive of offenders, but he’s far from the only toxic contributor.
It’s time to start looking at things from a more inclusive, efficacious, and empowering perspective.
We need to truly acknowledge that everyone’s worthy of life, even the (many) demographics that struggle to thrive in a society that was not built to include us — and moving away from this harmful term is one step towards those ends.