Cold Eye
It is seven years ago in the foothills surrounding Canberra, Australia, and it is the first time Rosie and I have seen snow. It is strange and beautiful and cold and we don’t know what to do with it. So we bathe in it. Parents, not just our own, yell at us, not understanding. In just exactly the same way that they never do. Why are you doing that? Put some clothes on. Aren’t you cold? Yes, we feel the cold. But maybe not the same as everyone else, and we sure can’t show it like everyone else. We are different, so maybe we don’t mind it.
It is said that the Inuit people of Northern Canada have fifty words for snow. And it’s true – they do. Qana is falling snow. Piqsirpoq is drifting snow. Matsaaruti is wet snow. Pukak is dry, powdered snow that looks like salt, the snow in Canberra that bright, perfect day. I have been lead to believe that people are as varied as ice crystals so maybe there should be fifty words for autism too. Actually there are, and I’ve heard most of them.
Young man you have Asperger’s syndrome. Autism spectrum disorder. Progressive developmental delay. An impairment in cortical development due to a mutation in the Memo1 gene that disrupts the pattern of the radial glial cells, their basal processes, and the whole initial organization of new brain cells.
You are also awkward. Difficult. Frustrating. Stupid. Obnoxious. Anti-social. Violent. Crazy. Friendless. A fucking pain in the arse.
The last one was from my father. In Australia, the police were often called to our apartment by our neighbours. Because I would scream all the time with pain I couldn’t articulate or share, they thought my parents were hurting me. They weren’t, but it isn’t like they didn’t think about it. My father told me once about standing on our eighteenth-floor balcony with me in his arms after I had been crying for eight hours for no reasons he could understand or that I could explain to him. I was four years old. He thought about dropping me over the edge. How much relief that would be. Then following me over it. Or maybe stepping together. Why him as well? More relief that’s why – what other purpose would he need?
Was he cold? Or just an honest human being trying and failing to make sense of the insensible? Looking for teleology in the kingdom of the bafflingly ontological.
Rosie and I are not like you, lubricated by your normality. We are jagged and delicate and dangerous and beautiful like an ice storm in the forest. After years and years of poking, prodding, investigations, interventions, medications and therapies – so many therapies: occupational, speech, applied behavioural intervention – I remain a stubborn mystery. I remain different, “incurable”. I remain me. A peculiar little fellow. And I claim that right. We all do.
Rosie is 18 now and doesn’t speak and she still wears diapers. She plays the piano beautifully. My friend Olly loves balloons and rides escalators in malls all day, up and down, up and down. His quiet singing breaks everyone’s heart when they listen closely enough. Tommy smears his excrement on his bedroom walls when he is angry and is a talented rugby player. Anton is young and stunning and agile as a gazelle. He knows about one hundred words but uses them sparingly and his father once told me he loves to watch him sleeping because then he isn’t autistic.
As for me, I can’t stand it when my peas touch my chicken. I cry when I should laugh and laugh at the most awful tragedies you could imagine. I experience pain where there should be none and none where it should be abundant. I can’t abide my ankle bones touching, but I didn’t make a sound when my humerus cracked in half when I was tripped over in the playground by a classmate of mine. I have come to know that when I do feel things, I don’t feel them like you and I don’t have the capacity to show them in a way that makes sense to, well, you.
Am I cold? So what if I am, so what if you think that? I’m just me. Living my life as only I can.
And playing naked in the snow.
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