The Lost Generation

by dpreyde

People with Asperger’s Syndrome were discovered in the early 1940s by Austrian pediatrician Hans Asperger. He noticed that some of his patients were different in a profound and mysterious way, and upon exploring those differences, realized he had stumbled upon something new. He called it autism, from the Greek word auto, meaning “self”.

Asperger was a strange man. He disagreed with the widely held assumption that disabled people were broken and destined to lead a tragic life. Most doctors working with the disabled objectified and dehumanized their subjects.

Asperger, on the other hand, adored his patients. He referred to them as his little professors, and wrote that it seemed as if they had fallen from the sky.

He enthusiastically believed that, with the proper accommodations, his patients could go on to lead successful, autonomous lives. This belief turned out to be true. One of his patients grew up to be a famous astronomer, and another ended up winning the Nobel Prize for Literature.

But these accomplishments were in the future, and Asperger’s optimistic claims about his patients were unprovable. His contemporaries thought Asperger was a quack, and either ignored or ridiculed his findings. His work was never translated into English, partially because he wasn’t respected, and partially because he was doing this work in Austria in the middle of the Second World War. Indeed, at one point his clinic was bombed and the other head clinician was killed in the explosion. Much of his early work was lost as a result of this bombing.

Asperger went on to become the chair of pediatrics at a university, and the medical community forgot about his discovery of the little professors.

At the same time that Asperger was working with his patients, a child psychiatrist named Leo Kanner was doing strikingly similar work in the United States. Neither knew of the other’s existence.

The patients that Kanner worked with were similar in some respects to Asperger’s patients, but their symptoms were more severe. For instance, some of the children were not able to talk. Just like Asperger, Kanner called this disorder autism.

Unlike Asperger, Kanner’s attitudes toward disability were typical of the time period. He was cold and clinical, and held little hope that his patients would succeed in life. He figured most of them would end up in institutions.

Because of Kanner’s conventional perspective, and the fact that all his work was published in English, people paid attention to him. It was Kanner’s understanding and definition of autism that became entrenched in the culture.

For decades, it was generally understood that people with autism had severe deficits in communication skills and were typically non-verbal. This was commonly believed to be the parents’ fault (mothers were especially targeted), and people with autism were often experimented on or institutionalized.

People with Asperger’s, on the other hand, fell off the radar. Because their symptoms weren’t as severe, they mostly avoided drawing attention to themselves. People saw the differences, but didn’t pathologize them.

This is the only occasion I’m aware of in which a disability has disappeared for a span of decades. Between 1944, when Asperger gave up on his work with autism, and 1991, when his work was finally translated into English, people with Asperger’s Syndrome were- for the most part- not considered disabled.

I call this period of time “the lost generation”.

I’m intensely curious about this part of our history. What was it like to be an Aspie back then? How many people grew up, got married, had a career, and had children in this period of time, all without understanding why they never quite fit in?

How many Aspies’ differences were explained away by sympathetic family members or colleagues? “That’s just the way he is”, or “he’s a little shy” or “she’s nice, but different”. Of course, it wouldn’t have always been so ideal. I’m sure that the mental health problems which are often co-morbid with Asperger’s were much higher during the lost generation. After all, Aspies weren’t receiving appropriate supports or accommodations. How many people came home exhausted every single day after a long day of being around people and thought, “God, what’s wrong with me?” or “Why is it so much easier for everyone else?”

Because Asperger’s is genetic, how many Aspies had kids who ended up with the disorder? How did they interpret the behaviour of their little professors? Were they worried that their children might experience the same feelings of isolation, or proud that they had so much in common?

While all this was going on, folks with classical autism were being severely fucked around. Psychology in the mid 20th century was barbaric, and disabled people were considered freaks. Doctors saw us as crippled or retarded instead of as human beings. We were regarded as unsolvable problems.

Aspies managed to disappear during this dark age, and so we escaped the worst of it. When we started to resurface in the ‘80s (a paper was written in German about Asperger’s findings in 1981 and it, along with his research, was translated into English ten years later) we found a more benevolent scientific community waiting for us. Oliver Sacks was among the first scientists to write about Asperger’s, and he did so with the compassion and curiosity of Hans Asperger instead of the dispassion and coldness of Leo Kanner. We got lucky. Awareness of disability is often touted as uniformly positive, but that’s not the case. It depends so much on who is aware of us, and what they do with that awareness. Besides a handful of anti-vaccination freaks and the genocidal maniacs at Autism Speaks, contemporary Aspies have attracted the right kinds of attention from the right kinds of people.

In addition to the receiving attention from a mostly benevolent healthcare community, people on the autistic spectrum are also forming their own communities at an accelerated rate, thanks in large part to the Internet. We’re well connected to each other now, and there’s tons of knowledge available about Asperger’s, and so I assumed for a long time that another lost generation was impossible.

Then the psychiatric community decided to end the diagnosis of Asperger’s Syndrome. There’s a handbook called the Diagnostic and Statistical Manual of Mental Disorders (DSM for short). It’s how retards and crazies get diagnosed, and how disability is constructed.

It was decided that, starting with the DSM-5, Asperger’s Syndrome would no longer exist. We would be lumped in as “high-functioning autistics”.

The DSM-5 just came out last year, so it’s too early to say what impact this is going to have on people with Asperger’s. One thing that’s already been established is that it will be much more difficult for Aspies to get diagnosed. This will mean less access to services and accommodations, and- as a result- a higher incidence of mental health problems.

What remains to be seen though is if this is the beginning of a second lost generation. With the high public awareness of autism and the rise of self-diagnoses it’s hard to imagine the genie ever going back in the bottle.

But I wonder if Asperger’s will become less medicalized as a result of this decision and more of a personal identity. If we can’t be diagnosed as having Asperger’s or even being autistic, it will increasingly become a personal decision. More and more people will say, “Yeah, this makes sense to me” and decide to self-label and come out of the closet to their loved ones on their own terms.

It might start to be seen as less of a disability and more like a community of people who are a little different from the mainstream. We might become even more like the queer community than we already are.

That would be an interesting and mostly positive development.

But again, it’s too early to see.

I do believe that we’ll never become truly anonymous again, which is a bittersweet thought. I like having Asperger’s and having other people identify me as having Asperger’s, but that’s just one word.

The autistic identity is so much more complicated and nuanced than that, which is what the lost generation accidentally embraced.

And perhaps in the not-so-distant future we’ll embrace that ambiguity again.

Advertisements