Defending the Spectrum: A guide to labels and portrayals

I was diagnosed with Autism very early in life. Specifically, I was diagnosed with ‘Asperger syndrome’. This was before the lack of a solid definition for the term caused new diagnoses’ to be replaced with ‘Autism Spectrum Disorder (ASD)’. Still, regardless of the name, the trait helps me make sense of myself, and the history behind autism is fascinating to me.

Although we knew of the existence through the work of scientists like Bleuler and Kanner, Hans Asperger is responsible for making us see autism through a wider lens. A child – for the studies were on children – might speak well. They may struggle with social interaction, yet excel in maths or the arts. Despite his thesis being published in 1944, not until 1981 did Lorna Wing discover the piece, publishing the diagnosis under the name “Asperger Syndrome”

Asperger himself is often cast as a liberal figure who embraced different genetic markers. However, lots of his work took place in the context of Nazi science and all the horrors that entailed. Although he was never a Nazi party member and later professed to having opposed them, historical documentation shows that he willingly and knowingly assisted in sending autistic children to institutions such as Spiegelgrund where they were experimented on and killed

When these revelations came to light in 2018, they came as a shock to a number of individuals who had been labeled and considered themselves aspergic, myself included. Lets start by going over how I choose to define myself and what the term ‘Aspergers’ means for me.

Defining Myself

I actually stopped using the term ‘Aspergers’ to define myself years ago.

That decision didn’t have anything to do with the revelations about Hans Asperger – I didn’t actually know about them, nor about The Diagnostic and Statistical Manual adopting the broader ‘Autism Spectrum Disorder’. I just found myself becoming more comfortable with the term autism.

Though if there’s one aspect which did motivate me to use the term autism, its the preconceptions people would gather from media about the more limiting ‘Asperger Syndrome’.

Arguably the most famous piece of fiction on Asperger Syndrome is ‘The Curious Incident of the Dog in the Night-time’ by Mark Haddon. Its a decent portrayal of some of the elements of autism, yet seems insistent on letting you know about our lead characters disability at every opportunity and leaves little room for subtlety – so while his math skills are portrayed as amazing, his social skills and understanding of metaphors are showed as non-existent.

This is quite a common portrayal of autistic individuals in the media. In ‘The Good Doctor’, we’re presented with a character who’s a medical genius, and also has Asperger syndrome, the implication being that all people with the condition also have ‘Savant syndrome’ – whereby you lack social skills, while excelling in areas such as science. That’s not widespread though, making up about 10% of autistic people.

Take another example – BBC show, ‘The A word’. In this portrayal the focus is on the family of an autistic child who are torn apart by thier child’s difficulties. Again, that happens, and raising awareness can be admirable, yet I get annoyed when writers depict autism with such broad pen strokes, exuding intellectually dishonesty. Rarely do you see characters with Asperger syndrome, who are not defined by thier condition.

So, I don’t call myself aspergic as I tend to see more curiosity, if I use the broader terms of ‘autistic’ or ‘on the spectrum’. This allows me to describe how my autism affects me, whereas Asperger Syndrome incurs the trials of having to describe the terms meaning, or having to reconcile your experience with that of the characters portrayed in pop culture.

Defining Autism

Should the term Asperger Syndrome exit popular usage, to be replaced with ASD? While I by no means want to speak for anyone who calls themselves aspergic, I happen to prefer ‘autism spectrum disorder’.

Hans Asperger made his career separating autistic people who were ‘little professors’ as he called them, from people who perhaps struggled more, or didn’t serve a useful purpose in the eyes of the state. In my last blog post I condemned the use of the terms ‘low functioning’ and ‘high functioning’, pointing out how they’re rooted in capitalistic ideas of someones worth being determined by how well they fit within certain economic guidelines. The 2018 research shows an extreme example of this:

“Delving into Aspergers work exposes a two sided nature to his actions. Asperger distinguished between youths he believed to be remediable, who had the potential for ‘social intergration’, and youths he considered were irremediable…his senior colleagues in Nazi medicine likewise advocated compassionate and first-rate care for children who might be redeemed for the Reich and excision for those they believed to be irredemable”

Edith Sheffer, Aspergers Children: The origins of autism in Nazi Vienna

Now, I am obviously not comparing Hans Asperger and his beliefs to our current understanding of autism. I’m saying that our understanding of autism is influenced by the economic and political systems around us and those changes of understanding are reflected in the media we consume, and the descriptive language we use.

Indeed, at the start of this blog, I mentioned Lorna Wing who helped to introduce the term Asperger syndrome, but just saying that would be to undersell and misconstrue everything Wing actually achieved and believed. Through her work she introduced the concept of the autistic spectrum; the idea that autism affects people of all ages and is diverse in character and content.

Despite her work on ‘Aspergers’ she was far from a stickler for labels, arguing that helping the individual should come first.

“Every type of autistic disorder is made up of a large number of features. From the point of helping the person concerned, spending time on assigning them to a sub-group is of little value. The main clinical task is to decide if they have an autistic spectrum disorder and then to asses thier pattern of abilities The demands of research are different from those of clinical work and investigators may choose to examine whether specific, separate sub-groups can be found among the autistic spectrum disorders”

Lorna Wing, The Autistic Spectrum

This mindset has been at the forefront of efforts to look beyond categories in research, and of course, ASD is now widely and commonly used. As an aside, Wing also founded the National Autistic Society – one of the most helpful initiatives for autistic people my country has ever seen. Frankly, if after the revelations about Hans Asperger, the autistic community still needs a figurehead, I’d be hard pressed to find a much better one.

Finally, a note to those who identity with the label ‘Asperger’, who may also feel upset by those revelations. I understand how you feel. If that label is part of your identity and you want to go on using the term…good on ya. Seriously, I mean that, I’m glad you can find comfort in something which I can’t. Know that you are no more defined by the actions of a psychiatrist 70 years ago than you are by a fictional character with autism. Our conditions help to define us, yet we are no more the labels and the stereotypes that surround us, than we are machines built to ‘function’. In the words of Wing:

‘Nature Never draws a line without smudging it’

An Atypical perspective

Labels reflect and reinforce understanding: To set out a timeline – scientists such as Kanner initially used the word autism to describe people who struggled to communicate to a debilitating extent. Asperger afixed to that theory his concept of ‘high functioning’ autism. Later, thinkers like Wing would alert us to the existence of a ‘spectrum’. In all these scenarios, the language changes as the understanding changes. This applies on an individual level as well, which is why I’d never want anyone to call themselves something they feel uncomfortable with. However, I do feel as if these changes in terminology are to be welcomed, more often than not.

We are not defined by our labels: Its very common for media about autism to portray the disability as an all defining force which envelops a person an all thier actions – while autism certainly can reflect how we perceive the world around us, we are still informed by our motivations and experiences. The fact that labels are always changing and we can pick or choose them based on our understanding of both the labels and ourselves, proves they are not fixed definitions which make up every aspect of our character. To act like they are is to dehumanize us entirely. As for Hans Asperger – well, you don’t need to believe Issac Newtons religious writings, to be bound by the laws of gravity.

The Spectrum is central: Imagine how you would feel if you were told that the colours were entirely separate from each other and not related in any way. Now imagine how ridiculous that sounds applied to autistic people. Understanding that theres a spectrum is key to understanding that a person with a diagnosis does not have a set of homogeneous traits, and two or more people with the same diagnosis may act or behave differently. That’s surely a vital step in understanding the skills and difficulties of individuals.

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