author's note: while i still scream on this topic, this work was originally written in 2018. i am pleased to report that some academic work has begun to refer to autism as autism spectrum condition, instead of disorder. And some had really taken to involving the autistic community in their work.
Aspergers is Just Another Functioning Label
So I'm going to talk about something sticky. And I'm going to talk about it bluntly. Maybe I like to stir up trouble. I donât know. I'm going to try to leave the meatier stuff for experts and point you in the right direction, while I try to focus on a few things that make me uncomfortable with continued use of aspergers instead of autism.
I'm going to talk about why we, the autistic community, should stop identifying as 'aspies' and as having 'aspergers', if you haven't already.
For clarification, we are talking about both the man who discovered aspergers, Hans Asperger, and the Aspergerâs Syndrome itself. Asperger the man will always be capitalized, and aspergers the syndrome will always include the 's' without an apostrophe (though it will sometimes be capitalized). I tried to make it as clear as possible which one I'm talking about throughout, but please bear with me as it is a little tricky to distinguish.
A (very) brief history of Asperger, aspergers, and autism
Hans Asperger was an Austrian psychiatrist, from whose research (done mostly during WWII) Lorna Wing coined the term 'Asperger's Syndrome' (aspergers hereafter) and first associated Asperger's work with autism, as it began moving towards the spectrum we know today. Asperger's profile came at about the same time as Leo Kanner was categorizing and labeling some autistic symptoms in the US (Asperger used the term 'autistic psychopathy', Kanner used 'infantile autism') (1) - though Kanner actually seemed to intentionally ignore Asperger's work. Aspergers was added to the Diagnostic and Statistical Manual of Mental Disorders (DSM) in 1993 and removed in 2013 with the fifth edition, DSM-V (DSM-5). Aspergers, along with several other autistic disorders (such as Pervasive Developmental Disorder Not Otherwise Specified), were combined to create the Autism Spectrum Disorder Criteria.
These diagnoses were rolled up for a number of reasons: to increase access to disability resources, to more accurately describe autism/autistic disorders, reduce confusion among doctors about diagnoses, and to create more uniform diagnostic criteria - all aimed at improving the quality of diagnoses and increasing the chances people are getting the help and support they need.
A few years ago (as early as 2005 actually), documentation and evidence regarding Hans Asperger and his Nazi association surfaced (1,3). I hate to redirect you, but others with better resources have spent much more time studying Asperger's past and actions than I have. Plus, I think it's always worth reading as close to the first accounts as possible. The first article, in Molecular Autism, is available in full online and I found it to be an accessible read: Hans Asperger, National Socialism, and ârace hygieneâ in Nazi-era Vienna by Herwig Czech. Czech details findings and omissions fro'm previous work on Asperger's past, as well as case files written by Asperger and his personnel file during WWII.
In another article, on Nature's site, Simon Baron-Cohen already put together a lot of thoughts about a lot of the same sources I've been reading regarding Asperger, so why do it twice? Check out his article here: The truth about Hans Asperger's Nazi collusion. I know weâre not all fans of Boratâs cousin (Iâve even sided with a recent research article kind of tearing some of his views about autism apart), but his article mirrored my thoughts pretty well.
A highlight about Asperger's research and functioning labels
And this is where I get harsh, I know. Know that I know this and that I hold no ill will towards anyone who wants to identify with aspergers, really. But the more I think about all this, the less comfortable I feel personally with the term. I want to be clear, it is in no way my goal to attack anyone.
I've seen some arguments to keep using aspergers, but in autistic-fashion brutal honesty, I see these arguments as immature at best and elitist at worst.
Allow me to elaborate. When I first read about Asperger's studies post-autism-diagnosis, my research-trained and slightly obsessed mind could not let go of one thing: Asperger's sample was super biased. He picked only very intelligent young boys with minimal impairments to study and help. So his criteria were incredibly limited in his assessment of 'autistic psychopathy' (to later become aspergers). Many girls and those deemed to have 'debilitating impairments' were literally sent to their deaths (often recorded as pneumonia, though their deaths were intentional), and Asperger was personally involved in more than one sentence (1,2). You can find more detailed information on Asperger's involvement in the articles above, and in the book In a Different Key by John Donvan and Caren Zucker. And probably a cursory search on the Internet.
Back to my point, Asperger's assessment and criteria for autism are biased based on his sample. He didn't seek to study girls or others who fell outside of this 'mild' autism zone (a term, I know the community hates, but bear with me a moment). At least Kanner's kids were a little more across the board in ability and challenges, and gender. I feel that this really limits what aspergers as a category contributes to our understanding of autism. We are not just the 'high functioning' males - we're the entire autistic and gender spectrum. That's not even touching on the racial implications of Asperger's work.
There's also this great movement against using these functioning labels rising up. Functioning labels as in 'high-functioning' versus 'low-functioning' autism or 'mild' versus 'severe' autism. The movement promotes the use of a color wheel for ability and challenges (4,5), as well as the idea that one's ability to manage their abilities and challenges fluctuates from day to day, often depending on energy level. Instead of functioning labels, support labels are promoted (high/low support needs). This movement stands against the invalidation of oneâs humanity based on a âlow-functioningâ label, and the invalidation of oneâs challenges based on a âhigh-functioningâ label.
But aspergers is seen as 'less bad', 'mild' or 'high-functioning' autism. In fact, this is how it was designed - Asperger's sample was picked for their mild traits and high intelligence, not as a representative example of autistic traits in children. They were picked for their ability to mask. And it makes sense that Asperger's goal was to make the boys fit into society as seamlessly as possible because otherwise they wouldn't have been deemed worth keeping alive. As many other disabled children were deemed.
I swear all of this leads here: if we're against functioning labels, we must also be against aspergers. It is essentially equivalent to saying 'high-functioning autism'. 'Mild autism' is what aspergers was designed to be when Asperger studied it. It's how we still describe it, often using âaspergersâ interchangeably with 'high-functioning autism'. Aspergers was truly like a functioning label from the very beginning; the OG functioning label, if you will, pitted against 'classic autism'. Just like 'high-functioning' versus 'low-functioning', 'mild' versus 'severe'.
I feel that if we really want to commit to no functioning labels, if we really want to stand in solidarity across the spectrum and be taken seriously as a community towards this end, we can't keep using aspergers to describe our autism. It is a functioning label.
A small point in aspergers defense that I can't ignore: aspergers describes a very specific niche of autism. I can't deny solace found in accuracy, and I get it if aspergers is part of your identity. But I'd like to point out that our identities are fluid and will change throughout our lives, just as the terms we use to describe ourselves. I know generally autistic people are not big fans of change, but that doesnât stop it from happening anyway. I've actually even been wondering if the 'Disorder' in ASD will get replaced with a synonym of Syndrome, Traits or Condition - something else within my lifetime. I'm even hoping for this - I dislike being labeled as 'disordered'. Though, hopefully not Syndrome, I'd rather not have to officially admit I'm an ASS (though this is the smallest of many reasons we shouldn't go with Syndrome).
At the end of the day, you choose how you identify. But please, please don't take that responsibility lightly.
1. In a Different Key by Jon Donvan and Caren Zucker - check your library too!
2. Simon Baron-Cohen's Nature Article: https://www.nature.com/articles/d41586-018-05112-1
3. An article in Molecular Autism that discusses the evidence behind Asperger's Nazi ties: https://molecularautism.biomedcentral.com/articles/10.1186/s13229-018-0208-6
4. A comic article explaining the color wheel spectrum explanation: https://the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/
5. A second option for color wheel spectrum explanation: https://graphicexplanations.info/2013/09/13/understanding-the-spectrum-in-autistic-spectrum/
6. An article from Spectrum News regarding Asperger's Nazi ties: https://www.spectrumnews.org/news/new-evidence-ties-hans-asperger-nazi-eugenics-program/
7. DSM Wikipedia: https://en.wikipedia.org/wiki/DSM-5
8. ASD Wikipedia: https://en.wikipedia.org/wiki/Autism_spectrum
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