Autism: How words shape our understanding
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Although everyone these days will have heard of autism, not everyone will have a clear idea of what it entails. In the past, one of the few points of reference for people was Dustin Hoffman’s character in Rain Man – the “idiot savant”. As time went on it became obvious that this was a flawed picture. More realistic portrayals of autistic people started to appear frequently in fiction: Sheldon in The Big Bang Theory, Saga in The Bridge or Sam in Atypical.
While these portrayals were an improvement, they still viewed the characters from the outside — quirky oddballs who didn’t fit into the world but, if given the chance, might one day become more like everyday people.
The truth is that autistic people are already just like you and me. Most definitely like me as I was diagnosed with ASC (Autism Spectrum Condition) five years ago.
“When you meet one person with Autism, you’ve met one person with Autism”
— Dr Stephen Shore
Disorder or difference?
Before returning to what this famous quote means, it’s worth discussing some of the terms used around autism and their significance.
My own diagnosis was ASC rather than ASD (Autism Spectrum Disorder) as the consensus amongst psychiatric professionals has been moving towards the viewpoint that autism is a difference not a disorder. Is it a disability? I’d still say yes, but only because society is skewed towards accommodating neurotypical people.
“Neurotypical” is a term used to refer to individuals who think and behave in ways that are considered “normal” in society — that’s a bit of a circular definition so for the purposes of this piece I’m using it to mean “not autistic”.
There has been a neurotypical trend towards using “person-first language” in relation to disabilities. This is admirable some of the time, but many autistic people find that it doesn’t work for them. I am an autistic person. It’s part of my identity, therefore part of who I am. “Person with autism” sounds like it’s something I could put down or leave on the bus — like a hat or a handbag.
Person-first language has the implicit meaning that the condition you’re separating from the person is a negative thing. After all, you wouldn’t dream of describing a gay person as a “person with homosexuality”.
Personally, my diagnosis was a cause for celebration. It made me realise that I was not terrible at being a person; it was just that the behaviours I imagined I was required to emulate were alien to me, they weren’t instinctive and had to be learned. Quite a common fantasy in my childhood was that I was from another world and had been left behind on this neurotypical planet to observe and report back but never interfere!
Another term which has now thankfully fallen out of favour is “Asperger’s Syndrome”. This was adopted because it allowed society to think that there was such a thing as “mild autism” — eccentrics who could function in society. This was indeed why the Asperger’s diagnosis, as distinct from autism itself, was defined in the first place — but for very dark reasons indeed.
The historical background of Hans Asperger’s work must be considered. In simple terms, he co-operated with the Nazi regime in the 1930s and 40s, and the separate diagnosis of “Asperger’s” was coined specifically to distinguish “useful” autistics from the rest so they could skip being referred to the Kinder-Euthanasie programme and their skills exploited by the Reich.
The history of Asperger has only recently been uncovered, hence the initially innocent use of the term in the 1990s and 2000s.
Highs and lows
This idea of “useful” autistics survives to this day in the terms “high functioning” and “low functioning”. This model imagines the autism spectrum as a one-dimensional slider with low at the infra-red end and high at the ultra-violet. This model is flawed — the mind of an autistic person is more like the mixing desk of a 24-track recording studio — there’s a limitless number of configurations the desk can be in — some people have strengths in some places and weaknesses in others — and these can change over time. When using these terms to describe people, “low functioning” ignores their strengths, and “high functioning” ignores their struggles.
Fundamentally, low and high functioning do not describe how the person experiences their autism. They describe how the world experiences the autistic person.
This brings us back to one of the meanings of Dr Shore’s quote: There are probably an infinite number of ways the spectrum sliders can be configured, and it’s very unlikely that one autistic person will precisely resemble another.
But you don't look autistic!
This is a common reaction I get when outing myself as autistic — and what is usually meant is that the person saying it is surprised that I’m not like other autistic people they’ve come across before. However, it’s all to do with context.
A very common public perception of an autistic person is that of a child behaving in a certain way, a way which often means that the autistic person is in distress. When we’re feeling fine and have got the energy, we’re capable of fitting in, of passing un-noticed.
There are all sorts of rules around society, many of which come instinctively to neurotypical people. However, as autistics we have to learn and apply them consciously on a constant basis. Naturally, adults are going to be better at this than children. An adult autistic person will have had years of practice — performing eye contact, small talk or any of the other components of the social glue that hold the neurotypical world together. (It can be exhausting though, and we usually need more time to recharge than most people.
April is Autism Awareness Month. You might have seen a puzzle piece used as the symbol for autism. In general autistic people are not keen on this branding. We are not a problem to be solved. A far better logo is the rainbow hued infinity symbol, representing our vast array of potential and the almost limitless possibilities open to us with acceptance — the next step on from awareness.
The Māori word for autism is “Takiwātanga” — meaning “In their own time and space”.
It would be lovely if someone could just remove anything irrelevant. When we cut it out we omit anything that isn’t essential to carry out new actions.
Giving feedback has so many benefits and forms a large part of the learning programmes we design.
When it comes to designing a learning experience we need to smooth it out to reduce friction costs that get in the way of behaviour change.