(Planet Me)
Saturday, June 21, 2014
Is Autism A Superpower?

My children have autism. Both of them. X, aged 9, and his little brother, L, aged 4. Both are, in their ways, very thoughtful and good natured children. But also, they are autistic. When I was growing up, autism didn't *really* exist. It wasn't recognised. You heard about these strange kids and adults with Aspergers, but the most prevelant of those was Syd Barrett, a weirdo who shouted at everyone and sat in his house as a recluse. But autism was invisble, and undianogsed. Schools were full of weird kids – and they had secret autism.

When I was growing up, I was probably autistic, as indeed, was my brother (amongst his other issues). But we weren't diagnosed. Nobody got diagnosises then. Autism was an invisible affliction. You couldn't see it, taste it, feel it. It was seen almost as a disability, a stigma. A malfunction. It isn't. Autistic people aren't wrong, or fucked up, or naughty. They just see the world differently to others. The frame of reference, the way that the world is interpreted, the thought processes, operates in a different way. A common way to bond may be through animate, or inanimate objects. Emotional responses may not always be appropriate in your eyes, but they are there. Even now, sometimes, my brain scrambles when processing information. I know I should say something, I know that whatever happens or I have been told is probably bad, but at the same point my brain is racing a thousand miles. What do I say now to communicate best how I feel? And with a brain like mine, words have to be perfect. In difficult situations, they aren't there. Other people now just think of me as cold, unemotional, difficult, or with a strong, dominating personality sometimes. Its not the case at all. More that I don't know how best to communicate. My children have the same thing : with autism it's often a case of how to change your first and natural response to blend in? Nobody wants to be the strange kid that gets picked on, or bullied, or in some other way turned into The Other, someone different. Having autism in this world requires skills to survive, as if one were an enemy agent and the 'normal' world is foreign territory, where you have to blend in – or be found out.

Our struggle is the same. L, being 4, is very clever. His frame of reference is different. His brain is always active. Always. Sleep is near enough only caused by exhaustion. The idea of 'going to sleep' is alien. When he sleeps, he talks. Lego Batman, he says in his sleep. Chocolate Milkshake. For the past four years he wakes at some point almost every night. He won't let me comfort him, only his mother. I have woken up alone around 360 nights every year. He demarcates roles. For me he is well behaved, obidient, and self-guiding. When his mother is around, he can be extremely difficult, extremely clingy, constantly demanding attention. If she is eating, he will constantly run his hands in front of the food, as if it were a competitor to be obliterated. Whenever we may show each other affection, he has been known to run between us and separate us in a screaming fit, or order me to be quiet, leave MY mummy alone. At 4, he cannot reason, and whilst we reason with him, it often doesn't work. He's taken to collapsing in floods of inconsolable tears when mummy goes anywhere without him – starting with every time she goes to work. Over the past six months this has eased a lot, and he now grasps certain concepts, certain ideas... but they're still there, waiting for reappear at a moments notice for any reason he feels like.

For me, he will follow one specific route to and from nursery. For my wife, he will insist on going to the Blue Shop, having a magazine or some food, only drink from a black cup like the advert. If its daylight, The Blue Shop is open. Even in summer months - when it isn't. We used to have to walk him to the Blue Shop to prove it, or else he screams at us, demands it, and what can we do? We're human. We're weak. We have to go to work, and our idea of fun is not being screamed at for an hour in the shopping centre because we won't buy him a £400-on-Ebay Lego Spiderman 2 Train that they last manufactured in 2003. We have been ground down from idealistic parents to creatures of survival through a fierce and unrelenting existence for years. We try but it is always a battle of wills.

Everything is Lego. or Batman. Iron Man. Spiderman. Hulk. HULK SMASH. Wonder Woman. Superman. Star Wars. Peppa Pig. Mr Tumble, Thor, Captain America, Ben Ten, Football. He wants it all. This is how he sees the world : in the context of superheroes fighting baddies, in the context of a world where everytime Daddy puts on a coat he goes to work, and where Mummy, don't go out, don't go to work Mummy, I'll miss you, Mummy be back soon, be back before it's dark, Mummy HUGS! This is an everyday, infinte, unending battle, with no respite, no end in sight, no He'll Grow Out of It, no end ever. Will he ever grow up? Will he be able to live on his own? Will he ever fall in love? Will he ever be 'normal'? We don't know. And whilst everything we do hopes he will, and plenty of evidence points to him possibly getting there at some time, there is no way of knowing.

Even now, we have to fight, constantly, eternally, for a diagnosis, for recognition of his individual requirements, for anything. We're in a system now, of tests, and assessments, of diagnosis, of medical practitioners – some of whom are excellent, others who are not, at all – of the world where we have a son who just isn't quite afflicted enough to be supported, but affected enough to obviously be different and difficult. To be bullied, picked on, discriminated against, socially and professionally, a boy who marches to the beat of his own drum, and for that crime alone, will be punished forever.

Or will he be, like me, the kid at school that was just the strange weirdo to be bullied and picked on?

Will he live on his own? Have a relationship? Be happy? His world would be hard enough without the seemingly unstoppable, and tragic, rolling back of rights and freedoms, and the burden of debt, cultural intolerance, economic catastrophe, housing crisis, support cuts, and social injustice that the future will inevitably hold. The rights we collectively as a nation and a species have fought for for hundreds of years are being silently stolen away. This is the world my son will grown into. And I am powerless to influence it, except be just one soldier in a war of seven billion humans.

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