Wednesday 3 April 2013

Autism Acceptance Day


On this day, Autism Acceptance Day, let’s make a commitment to changing the way autism is approached or talked about. For too long, we’ve had to put up with all kinds of negative talk about autism, been forced to listen as it (or autistic people) are referred to as a tragedy, a monster, a thief of ‘good’ children, an epidemic or disease, a breaker of marriages, a trial and a burden, on and on, there seems no end to the insulting terms they heap on us. (Why, anyone would think we had no feelings!) (Yes, folks, that’s sarcasm.) All of these come from a viewpoint of seeing autistics as ‘wrong’ or ‘deficient’, simply because we are not behaving like NTs. Any way in which we differ from ‘normals’ is seen as a bad thing, we know this all too well by now. Comparisons are never in our favour.

But it goes deeper than that. NTs are supposed to have greater empathy and understanding of others, and the ability to ‘put themselves in another’s place’ – yet all those abilities just fly out the window when it comes to us. Most seem incapable of even beginning to ‘get’ us. I believe this is due to them completely not understanding that autism is NOT a set of behaviours (though that’s how it’s usually diagnosed), but rather a completely different neurological mode, one which is in-built, and which causes us to perceive, sense, think about, view and approach the world differently. Until NTs understand that, they will never understand anything about us - and will continue to assume that our behaviour is a matter of lack of self-control or ‘over-indulgent’ parents or an ‘anti-social’ disposition, or simply arrogance, selfishness, rudeness, etc.

But what if they approached us with this new understanding of our neurology? Imagine if parents, for instance, instead of just assuming their child’s meltdown is a random, inexplicable thing or a temper tantrum, realised their child’s extreme sensory sensitivity, and looked at everyday things from their perspective. A bee is buzzing in the window, a dog is barking somewhere, the neighbour’s mowing their lawn right outside, the radio is jangling tunes from the kitchen, the TV is blaring, their siblings are quarrelling, a car is honking… And that’s just the noises. If smells, textures, sights and movement are factored in, the parent might suddenly see that their child’s meltdowns don’t really ‘come out of nowhere’, but have an entire environmental history behind them.

Or what if instead of getting exasperated when their child rips off their clothes every chance they get, assuming the child does it out of ‘defiance’, or that it’s ‘just part of the inexplicability’ of autism, the parents stopped and asked themselves - what is it about the clothes that so bothers them? Is the label scratchy, or the fabric irritating? Is their skin hyper-sensitive – or are they the opposite, hypo-sensitive to cold, the clothes seeming to them an unnecessary restriction? Once a parent begins to approach the issue from this perspective, it will seem less insurmountable.

Or imagine if someone took the time to ask themselves why an autistic child – or adult – likes to spend so many hours flicking their hand in front of their eyes, or spinning wheels on toy cars, or staring at an object. Imagine if they grasped that the autistic may in fact be trying to make sense of something, or confirm that some things always stay the same, or always move in the same way, even in a world that to us is highly confusing, constantly changing and swirling – that they may, in fact, be something of a ‘natural scientist’!

And what if, instead of dismissing a non-verbal child or adult on the spectrum as ‘not all there’, and believing that there’s ‘no point’ in trying to communicate with them, people applied the principle of ‘presumption of intelligence’, and did everything they could to facilitate communication, by whichever means works best for that autistic person – even if it’s not speech, even if it’s slow, even if the person has bad days when they aren’t capable of communication at all, or seem to have forgotten all they previously learnt, or have to resort to assisting devices some of the time, but are able to speak at others. Imagine if it was understood that our verbal abilities are fluid rather than fixed. Then further imagine if the non-verbal were treated with respect and kindness, instead of being segregated into ‘dummy classes’ or institutions or other kinds of ‘holding pens’, or abused by their caregivers – or even murdered by them.

Imagine too a world where any autistic child was allowed to stim, to tap and spin and jiggle and rock and hum, to hop or skip instead of walking if they felt like it, to sit how they feel most comfortable, to crack jokes that others don’t understand or do the same things in the same way, day after day. Imagine if their ‘obsessions’ were reframed as ‘special interests’, and incorporated into their daily activities whenever possible – as a matter of course. Imagine if their individuality was respected, acknowledged and validated, their ‘quirkiness’ seen not as ‘bad behaviour’ but as evidence of a totally unique perspective on the world, offering new insights on it. Imagine if that was also the case for adults on the spectrum.

Imagine if NTs, instead of assuming rudeness etc in their autistic workmate, classmate, family member, neighbour, etc, were able to stop and realise that the person wasn’t intending anything negative, but is rather simply straightforward and honest, perhaps lacking a few social graces, but also lacking the ability to indulge in the ‘games-playing’, manipulations, or subtle sabotages that are the hallmark of so many NT interactions. Imagine if they could come to appreciate us instead of just reacting negatively.

This list of ‘imagine ifs’ could be much, much longer. But my point is that all of this is possible – if only we could move the ‘dialogue’ about autism (which isn’t currently really a dialogue at all, since that implies an equality of voices, but rather a rubbishing) into a reframing of autism in the public mind as not something negative or scary, but rather a different way of being human, as authentic as the NT way, and just as worthy of respect. Imagine what that would be like.

Imagine it – and then let’s go out and make this ‘Autism Acceptance Day’ the day – and then the month, the year, the decade - we start to make it come true. Because every day should be Autism Acceptance Day.

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