It's a personal choice what we call ourselves.
This is why I don't choose to say "Asperger's Syndrome"
This article is based on the script of the video of the same name uploaded in March 2022
You can watch the video by clicking on any of the images in the body of text.
Whilst many people struggle to get an autism diagnosis at all these days I actually went through the process twice. Both times the word “Asperger” was mentioned, but I don’t ever say Asperger or Asperger’s Syndrome when I talk about myself or other autistic people.
It was a personal decision as it is for everyone, so this article isn’t about whether or not I agree with anyone else, or an opinion piece on why everybody should make the same choice as I did, it just tells the story about WHY I made this choice long before Twitter or Facebook even existed.
In the early 1940s, as the second world war raged across continents, two Austrian doctors published papers separately. Hans Asperger in Germany had observed what he called “Autistic Psychopathy” which covered a range of abilities in cognition and communication, whilst Leo Kanner in the US took a more pessimistic, deficit laden view of the same phenomena.
Kanner’s 1943 paper “Autistic Disturbances of Affective Contact” described a rare psychological condition afflicting mainly boys which he called “Early Infantile Autism”.
It caught the attention of the world and laid an unfortunate foundation for the public perception of autism which persists to this day.
Hans Asperger was forgotten for nearly forty years until a British researcher named Lorna Wing, rediscovered his work. In 1981, a year after his death, she published “Asperger’s Syndrome: A Clinical Account” arguing that autism was more than the narrow, suite of debilitating limitations that Kanner suggested. By adapting and adding to Asperger’s work she proposed an autism spectrum of which what she chose to call “Asperger’s Syndrome” was only one aspect.
Slowly professionals across the world started taking notice and applying her ideas to their clinical practice and over the next few years her work and Asperger’s name was cited in the diagnoses of an increasing number of children. Whilst there was increased interest in Asperger’s work he could lay no claim to the diagnosis that would eventually carry his name.
In 1992 the autism spectrum and Asperger syndrome were formalised in the ICD diagnostic manual published by the World Health Organisation and two years later in the American DSM. This is where the scare stories of an “autism epidemic” so beloved of medical luddites and conspiracy theorists started. With new understanding and definitions, autism diagnoses grew as more and more children, then adults were recognised as fitting the updated criteria in the manuals.
In 2010 though, only sixteen years after incorporating the definitions of Asperger’s Syndrome and Childhood Autism, the DSM dropped them in favour of “Autistic Spectrum Disorder”. The ICD was slower to change but reflected the same progress in understanding.
Even so, a great many people diagnosed under the DSM criteria would still come to be told they had Asperger’s Syndrome even in America. My diagnosis in the 1980s read “Autism: Asperger Type”. The psychiatrist I saw in the early 2000s under new diagnostic criteria said “Asperger Syndrome”. So why DON’T I identify myself as Asperger’s? Why do I only use words like autistic and autist?
Until the 1990s autistic people were spread far and wide, with little chance of making contact. The internet changed that. Blogs started popping up on Geocities and popular chat services hosted rooms for autistic and Asperger’s people. The term “Aspie” gained popularity.
Something wasn’t right though.
The dividing line between a diagnosis of Asperger’s or Childhood Autism wasn’t clear.
We had thought it was but there was much difference of opinion. Some thought it was a question of IQ, of support needs or communication skills. Others talked of childhood speech delays, frequency of “challenging” behaviour or “functioning level”.
There was no consistency we could find.
People with low IQs sometimes had Asperger diagnoses whilst some geniuses were autistic. There were autistic people with good jobs and families of their own and Asperger people locked up in institutions, deemed a risk to themselves and others or needing full time care. Asperger’s John never spoke a word until he was 9 years old whilst autistic Jeff had been chattering away in the cradle.
Clearly the choice of whether to tell someone they were autistic or Asperger’s was less clear cut than we’d thought. It should have been simple. If someone qualified for an autism diagnosis under the expanded criteria but wouldn’t under Kanner’s old definition then it should be Asperger’s surely?
Then in the early 2000s the first revelations from professionals trickled in. Diagnosticians on forums, in early social media and now and again in person, talked of their reasons for choosing between Asperger’s or autism.
If the parents bristle when autism is mentioned – tell them it’s Asperger’s Syndrome – They’ll be less likely to sue.
Is the child well spoken and from a well off family? Asperger’s it is then.
Is the kid doing OK at school? Tell them it’s Asperger’s and it won’t hold them back so much.
Some even suggested behind the anonymity of the early internet that race, gender or the likeability of the child could influence their diagnostic choice.
Many of us concluded that the difference between the two designations were practically meaningless. The only thing we could be certain of was that both Asperger’s Syndrome and Childhood Autism fell under the umbrella of “autistic” so that’s what we were. It was unifying and empowering to stand together rather than be separated by haphazard labels
Then came the backlash.
A splinter group argued that since the public stigma towards Asperger’s was so much lesser than around Autism, we should ALL call ourselves “Aspies”. That felt uncomfortable. Besides the concerns over Asperger’s personal past, it was inaccurate and felt exclusionary to those who’d been told they were autistic.
Before long our fledgling community was fractured and as the chasm grew, so did the lengths some would go to in order distance themselves from “bad” autism and associate with “good” Asperger’s. They wrote long diatribes about Asperger’s being the “next step in human evolution” or fantasised about founding an island state called “Aspergia” which would inevitably rule the planet within a century or so.
They went beyond internalised ableism, way further than just distinguishing themselves from other autists, they claimed they were superior to all other humans. Ubermensch with a manifest destiny to save the world from the “normies”, ”sheeple” or ”mundanes” – what we would now call neurotypical people.
They were supremacists. Aspie Supremacists and they were relentless.
The bullying from this small group of people became so intense, so vicious, that many of us, including myself, gave up on our attempts at advocacy. We retreated from our online communities and shut down our websites because we were being shouted over. For a while, the supremacists had the upper hand.
When I reconnected to the autistic community a few years ago the supremacists were all but gone. They certainly weren’t dominating the narrative any more. The term was still in use but it’s meaning had changed. The separatist movement of more than a decade earlier was nowhere to be seen. I can now comfortably connect with a far larger community of autistic people all over the world.
There’s blogs, other autistic YouTubers and podcasts out there. There’s autistic run organisations advocating for our rights, autistic psychologists, sociologists and doctors making a positive difference and an increasing number of non-autistic allies working to achieve the same goals as us.
Whatever label our doctor chose for us at the end of our sessions, the community is built on the understanding that we’re all autistic. We thrive on what we share, not where we differ. There is strength in numbers but there is also strength in realising our limits and supporting each other to make the most of our aptitudes. There is a burgeoning sense of cooperation and of teamwork within some of the current autistic community that we’ve never seen before and part of that has come from dropping divisive language like Asperger’s, High or Low Functioning, Mild or Severe.
Every autistic advocate I work with is dedicated to making a difference for all of us, whatever diagnostic label we were given, whatever co-occurring diagnoses we may have and whatever our abilities, strengths or weaknesses. We have a more united front than ever before.
Calling myself Asperger’s wouldn’t make me any less autistic, but it would pander both to the prejudices of bigots and the desires of those who profit from our division. The multi billion dollar industry that relies on the pathologising of autism loves it when we split ourselves apart. They WANT the world to believe that there is an acceptable, higher form of autism and a lower, exploitable variety.
If I tried to distinguish myself with labels like “Asperger’s”, “Mild” or “High-Functioning” I’d make their job much easier whilst giving myself a false illusion of security. I’d go about my life under the delusion that I was out of the firing line when in fact I would be just as much at risk as any one of us.
Calling myself Asperger’s to save face or avoid the prejudices of other people can’t shield me from a society that punishes difference. We all have the same potential to be destroyed because it’s not the label that matters. It’s who we are and how we present ourselves to the world that determines our fate and no diagnostic label can change that.
Whatever your opinion on Asperger’s personal history or his methods, his name has come to represent division between former friends. It has torn apart a vital and supportive community before and it could again. Whilst few people had heard of Asperger before the 90s, by 2010 his name was not only an anachronism, it was one which evoked painful memories of personal abuse and damage to the autistic community that took years to repair.
I am stronger for being autistic when I’m alongside other autistic people. The more of us there are identifying together, sharing together and speaking with one voice for the good of us ALL, the faster we will achieve our goals. The sooner society will wake up to how many of us there really are, how much we contribute to the world and how easy it would be to stop treating us as deficient so we could all live happier lives whatever our abilities and however our brains are wired.
I’m autistic.
I always have been and I always will be and I wont let a twenty year blip in the diagnostic manuals stand between me and my autistic family.
You can watch the video by clicking on any of the images in the body of text.
(c) Autistamatic 2021