The history of autism.
Autism was first described and named roughly 100 years ago. Since then, it’s come into public knowledge. But does that mean that autistics never existed before? And what of the modern history of autism as a diagnosis? How does world history and politics play into the modern understanding and misunderstandings of autism? Let’s break it down!
Ancient Autistics?
For awhile, it was believed that autism was something new (this is particularly in line with antivaxxer logic) and people started calling it an epidemic and talking about a rise in the rates of autism. But is it really new? Are rates really rising? Or are the rates of diagnosis rising?
The understanding that we have always been a part of humanity is growing and recently researchers have been beginning to study the ancient history of autism and how autistics may have contributed to human evolution. It makes sense, though, when you stop to think about it. Autistics tend to get obsessed with certain things, so we may very well have been some of the first experts in various knowledge. We also tend to like little sensory tasks, so we were probably very useful to social groups by doing little things akin to peeling foods for prep, or beading or other work that is vital for a small village. It’s likely that we were often considered vital members of society.
Many remarkable people are suspected to have been autistic such as Einstein, Thomas Jefferson, or even Jesus. It’s important to remember that we will never truly know about historical figures and that therefore we cannot simply assume any of these people were actually autistic, but I think it’s fair to assume that autistics are at least as important to human history as allistics (non-autistics) are and are just as likely to have helped drive innovation and progress.
So when did we start calling it “Autism?”
The person who is most often credited with describing autism in the modern sense, and providing the name itself was Hans Asperger. Obviously, this man lent his name to Asperger’s syndrome, which was for a time a particular diagnosis within autism, but as we’ve already discussed, this is no longer a diagnosis and should no longer be used. Why? Because Hans Asperger was a Nazi.
Hans Asperger, a literal Nazi who determined which autistic children were useful and which would be murdered.
Obviously, this is very not good for autistics as Nazis are literally antithetical to the safe and happy lives of Disabled folx. Asperger determined that while some autistics are a “burden” (and he quite literally sent some of his patients to be murdered in concentration camps because of this perceived burden and how Disability is incompatible with eugenics), others were “useful” because of their intelligence and/or autistic traits that could be used to produce for society.
Like, I get how that might seem like a compliment at first, but my personal world view is that we are all just little creatures born onto this planet, no different than a bird or a tree or a bunny, and that we should be valued BECAUSE we are little creatures of this Earth, not because we can potentially produce. In other words, regardless of ability, class status, race or ethnicity, gender, or another other identity, we are all equally valuable human beings. Splitting autistics between who is useful and who is not is literally just echoes of Nazi ideology and this is ultimately the reason that the autistic community asks that “Asperger’s” as an identifier be dropped.
So Asperger was, uh, problematic. But wait! There’s more!
You see how I wrote “most often credited” up there? Instead of, say, something along the lines of “Asperger first described autism as we know it today” which would indicate he definitely did not steal anyone’s work. Yeah. You can see where I’m going with this, right?
Grunya Sukhareva, probably a future Badass Bitch
Grunya Efimovna Sukhareva, a Russian doctor, published a paper in 1925 describing autism, nearly two decades before the Nazis did. Sukhareva may not be well known in the United States or other “Western” nations, but she is considered “the most well-known name in child psychiatry in Russia” having published over 150 papers during her career. While her paper describing autism was essentially unknown in English-speaking countries until 1996, it had been translated into German the year after it was published, making it quite possible that Asperger had access to it. However, Sukhareva was Jewish, and, you might remember from like 2 paragraphs ago, Asperger was part of a group that was kinda known for, you know, a massive genocide of Jews. It’s therefore not a stretch to think he did not consider her worth citing.
Sukhareva was ahead of her time in many ways. She started to disentangle autism from childhood schizophrenia during the 1950s, nearly 30 years before they were listed as separate conditions in the DSM-III. Half a century before brain scans started to implicate specific regions in the condition, she postulated that the cerebellum, basal ganglia and frontal lobes might be involved. According to Manouilenko, whose own work involves brain imaging, that’s exactly what research is revealing now. Source.
So what’s happened since then?
This link at Spectrum News has a more complete story and I recommend you check it out. But here’s a basic timeline. Some of these dates surprised me - I didn’t realize that the idea of the spectrum was so recent!
These dates and much of this general information comes from the above article. But I have added the first two items and a few other details.
1910ish Eugen Bleuler coins the term “autism” to describe a patient with schizophrenia who was very with drawn. “Autism” comes from the Greek autos, which means “self.” (Some Autistics take issue with this and there may come a day when we, as a community, choose a new name.)
1925 Sukhareva published her paper, the first to describe autism as we would come to know it.
1943 Hans Asperger and Leo Kanner describe autism. At this time, it was viewed as an emotional disturbance, a form of childhood schizophrenia.
1950s-1960s It was believed that autism was caused by mothers who were too unemotional, or cold. They were dubbed “refrigerator mothers.” Although this has been debunked socially, the misogynistic undertones echo to this day.
1980 The DSM-III lists autism as a developmental disorder, distinct from schizophrenia.
1987 When the DSM-III was revised, diagnostic criteria for autism was altered significantly, adding a separate diagnosis for the “mild” cases: PDD-NOS, pervasive developmental disorder, not otherwise specified.
1994 The DSM-IV is published. Autism is first labeled a spectrum disorder. Asperger’s, along with four other categories, are introduced.
2013 The DSM-V is released and plays some musical categories including the removal of the diagnosis of Asperger’s.
What’s next?
As more autistics are becoming active in the fields of research (and as more researchers recognize that they are autistic), diagnosis rates will rise wildly. As we learned, this doesn’t mean autism itself is growing. It means that
As autistics become active in this field, both as researchers and as active participants in research, we will learn more about autism.
As we learn more about autism, we will diagnose it more.
As far as the future of autism?
As we learn more, we will hopefully change the way that we support autistics in childhood as well as in adulthood.
As we learn more, we will hopefully be able to better educate society in general and get some of these archaic ideas about autism debunked.
Once autistics are fully accepted and supported as necessary, we will have achieved equity for our community.
