Friday, 11 May 2012

How Much Is Our Autism A 'Socially Constructed' Disability?

I haven’t written much here recently, as I've been working on several other projects, including a submission for the Loud Hands anthology. During the writing of that, I did a lot of thinking about how autism/aspergers is perceived. Then ‘Autism Positivity Day Flash Blog’ happened on April 30th, in response to someone doing a Google Search on ‘I Wish I Didn’t Have Aspergers’. I also recently read a piece written by an autistic person who feels autism is a devastating disability that has ruined their life, and who rejects the idea of autism as ‘social construct’. All this got me wondering – how much is our autism a ‘real’ disability, and how much is it ‘socially constructed’?

Firstly, what exactly constitutes a disability’? My Concise Oxford defines it as a “thing or lack that prevents one’s doing something… physical incapacity caused by injury or disease”. So for us to be ‘disabled’, we must be defined by our ‘lack’ or ‘incapacity’, by what acts as a ‘barrier’ to our doing or being the ‘norm’. (The assumption here of course being that the ‘norm’ is something we all ‘naturally’ want to do or be.)

Secondly, what is meant by socially constructed’? It seems to mean two slightly different things. Firstly, it means if society accepts and caters for ‘differences’, eg if there are wheelchair ramps, ‘disabled’ toilet facilities, etc, in all public buildings (as there largely is in New Zealand), the ‘disabled’ will cease to be prevented or disbarred from many normal human activities – ie no longer ‘dis-abled’. Regarding autism, this could mean (and I wish it did mean, but alas not so, or not yet) accommodations being made for our different perceptions, eg separate offices with doors instead of open cubicles. Secondly, and on a deeper level, it refers to attitudes towards and assumptions about people with all kinds of ‘disabilities’. Specifically, for those with autism, it means that many of what are currently defined as our ‘lacks’, could be re-interpreted as simply different ways of perceiving or interacting with the world, and just as easily seen as a ‘plus’ or advantage.

My feeling is that the latter has a lot of merit, but can be taken too far. There are some aspects of autism that are indeed ‘disabling’. But what exactly are these aspects? One thing I have noticed is that many of the things autistics – or their parents - complain about tend to be actually either –
1) The ‘co-morbid’ conditions or factors - alexithymia, sensory processing disorder (and consequent sensory overloads), executive dysfunction, dyspraxia, etc;
2)  ‘Outer’ factors, eg difficulties or delays in communication or toilet training, or;
3) Their social difficulties interacting with, understanding or relating to others.
Thus parents will say things like -
- “I’m exhausted by my child’s constant meltdowns.”
- “I wish he could tell me why he’s so upset.”
- “She doesn’t seem to get why she should do it only in the toilet, and not her pants.”
- “The house always has to be locked up like Fort Knox.”
- “If things don’t happen exactly to schedule, she panics and screams for hours”.
- “He won’t play with other kids, unless they do things exactly his way.”
And autistics themselves say things like –
- “I wish I wasn’t always so disorganised.”
- “I’m tired of being overwhelmed by noises, smells, and bright lights.”
- “I hate being so clumsy, I’m always injuring myself and looking like a fool.”
- “I never seem to know what I’m really feeling till it’s too late.”
- “Why can’t I ever make real friends?”
- “I’ve never had a decent/any relationship.”
- “I can’t seem to get along with co-workers/bosses or hold down a job for long.”

By contrast, I haven’t really heard/seen anyone complaining that they hate what I regard as the inner ‘core’ of autism, ie our neurologically different way of thinking, feeling, processing, interpreting and reacting to the world. Perhaps they have, or perhaps they do feel this way, and I just haven’t seen it, or understood it. Perhaps. What I do hear/read is people saying things like “I hate how I can’t do this/always do that/how people treat me… but I love being me, the way I respond to nature/animals/art/music/etc, I like the way I look at the world…” Even many parents say things like “he can be so lovely, so innocently joyful and playful”, or “she’s so refreshingly honest, I’ve never heard her lie”, etc.

So we need to ask ourselves: how much – and which parts - of our autism constitute a ‘real’ disability? And how much – and which parts – are a ‘socially constructed’ disability, that would change or even disappear, if people’s attitudes changed? I feel the answer to that is probably both broad and differing somewhat for each autistic person. And also that this is a conversation we really, really need to have. Because how can we ask for assistance on the one hand, and yet promote ourselves as ‘simply different’ on the other, if we’re not ourselves clear on what is ‘disabling’ about autism, and needs special support or accommodations, and what is simply a ‘difference’ to be accepted? Not to mention the ‘autism rights’ movement is alienating some parents and even some autistics, who do feel their/their child’s autism is a major disability, and that this is being ignored by more (apparently) ‘higher functioning’ autistic adults.

And if proper assistance, early intervention, appropriate and truly helpful and focussed training and support (for parents, autistic children AND adults) was automatically provided, if suitable adaptations were not just ‘allowed’ but mandatory in schools and workplaces – what then would be people’s attitudes, to their own or their child’s autism? Would we still hear people saying they ‘hate’ autism? Would autism still be seen as – or be - a ‘devastating disability’?

I would really like the chance to find out.

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