Discomfort zone
Any regular readers of this blog (even typing that sentence makes me cringe - as if there could possibly be such a thing as a "regular reader" what arrogance on my part etc) will have noticed that I occasionally blog about autism.
This actually started before my diagnosis when I merely suspected that I was autistic, but naturally accelerated once I had the validation of the letter from a psychology professional which meant that the nagging little voice of impostor syndrome in my head had to shut the fuck up just this once. I should have it framed like a degree certificate so I can look at it every time I'm plagued by self doubt.
My posts on this subject so far have been about the experience from my perspective. What it's like from the inside. How little things that I thought were just me – or which I thought were common experiences – turned out to be autistic things.
There are many aspects to neurodiversity in general and autism in particular. In general I'd say it's a good thing that there's far more awareness of this these days – just think how much better I might have coped with school if it had been more of a thing back then. However this does lead to a number of common misconceptions. Some of these are caused by people simply misunderstanding what autism is, others by people who for reasons known only to themselves take the existence of neurodiversity as a personal insult. Yes, strange as it may seem I have seen "Neurotypical is a slur!" in the wild.
So I thought I'd write something addressing some of these misconceptions. It's wise for me to preface it with the disclaimer:
"When you meet one person with Autism, you’ve met one person with Autism" - Dr Stephen Shore
This is just my experience. Other people may find it hauntingly familiar but if they don't, it doesn't mean that they (or I) am incorrect. It's not as simple as that. The so called Spectrum that has become part of modern parlance is more of a Continuum. A 24-track mixing desk rather than a dimmer switch.
Disorder?
One common misconception is that autism is something "wrong" with us, something that in an ideal world wouldn't exist. However my own diagnosis was ASC (Autism Spectrum Condition) 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.
This doesn't mean that it can't be considered a disability. Disability is very often caused or exacerbated by society at large being optimised for the average person, and that adaptations of the working or living environment are seen as too expensive (or often not even thought about). Autistic people are disabled by a society that's skewed towards accommodating neurotypical people.
Person first?
There has been a neurotypical trend towards using "person-first language". This is intended as a positive attitude ("See the person, not the disability!"). However many autistic people find it patronising if not downright offensive.
I am an autistic person. It's part of my identity and part of who I am. "Person with autism" sounds like this key part of me is something I could accidentally leave on the bus like a handbag or shave off like a beard.
In addition, person-first language has an 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 reverie 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! The alien observer fantasy is something I've written about before although when I did I'm not sure I knew where it came from. I do now.
But you don't look autistic!
This is a common reaction I get when outing myself as autistic. And yes, it does still feel like "outing" myself as I never quite know what the reaction is going to be. I suspect what's usually meant by this is that the speaker is surprised that I’m not like other autistic people they’ve come across in the past and is trying to be complementary.
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 – yes some kind of tantrum – 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 and not conforming to the stereotype.
Plus another reason I don't seem like your autistic child is that I'm not 5 any more and I've trained myself out of lying on the pavement screaming because the sweetshop is closed. (Yes, that is something that I once did.)
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 – especially one who's been unaware of their condition for most of their life – 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.)
Well, you must be high-functioning then...
Another common one which is often paired with the previous entry. Again this is usually meant as some kind of complement, although the history behind this concept might make the person saying it consider a rethink.
Remember "Asperger's Syndrome"? That was quite a common expression bandied about ten years ago when discussing neurodiversity. This was latched onto because it allowed society to think that there was such a thing as "mild autism" — people who were eccentric but could function in society.
This was indeed why the Asperger’s diagnosis as distinct from autism itself was defined in the first place, although the historical background of Hans Asperger's work should be examined and taken into account.
In simple terms he co-operated with the Nazi regime's eugenics programme in the 1930s and 40s and came up with the separate diagnosis of "Asperger's" specifically to distinguish "useful" autistics from the rest so they could skip being referred to the Kinder-Euthanasie programme as their skills could be made use of by the Reich.
The dodgy idea of useful vs non-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.
As I mentioned above, the mind of an autistic person is more like the mixing desk of 24 track recording studio. There are a limitless number of configurations the desk can be in and these can change over time. Some people have strengths in some places and weaknesses in others.
When using these terms to describe people, low-functioning ignores their strengths and high-functioning ignores their struggles.
Basically low- and high-functioning do not describe how the person experiences their autism.
They describe how the world experiences the autistic person.
We're all a bit autistic...
I'm not sure if this one is intended as a compliment, although it may be an attempt to show empathy. However, one subtext here is "...so you're nothing special. Stop fussing and make an effort like the rest of us."
It may be subconscious, but I get the impression that at best this point of view is trying to make the differences go away so the speaker doesn't have to think about them. At worst it's that the speaker feels I'm somehow cheating and using this as an excuse for not conforming to societal norms.
This point of view is often paired with pop-psychology aphorisms about stepping outside the comfort zone. What they don't realise is that as an autistic person I live outside my comfort zone. The tricky part is unlearning decades of people-pleasing done in order to fit in and learning to be comfortable enough in myself to say no to something I don't want to do.
Accepting my "no" without a fuss is one of the best accommodations anyone could make!
PS: You might have seen a puzzle piece used as the symbol for autism. In general autistic people are not keen on this branding — we're 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 when offered acceptance rather than just awareness.
Comments