The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy With Autism
The thirteen-year-old author of this book invites you, his reader, to imagine a daily life in which your faculty of speech is taken away. Explaining that you’re hungry, or tired, or in pain, is now as beyond your powers as a chat with a friend. I’d like to push the thought-experiment a little further. Now imagine that after you lose your ability to communicate, the editor-in-residence who orders your thoughts walks out without notice. The chances are that you never knew this mind-editor existed but, now that he or she has gone, you realize too late how they allowed your mind to function for all these years. A dam-burst of ideas, memories, impulses and thoughts is cascading over you, unstoppably. Your editor controlled this flow, diverting the vast majority away, and recommending just a tiny number for your conscious consideration. But now you’re on your own.
Now your mind is a room where twenty radios, all tuned to different stations, are blaring out voices and music. The radios have no off-switches or volume controls, the room you’re in has no door or window, and relief will come only when you’re too exhausted to stay awake. To make matters worse, another hitherto unrecognized editor has just quit without notice – your editor of the senses. Suddenly sensory input from your environment is flooding in too, unfiltered in quality and overwhelming in quantity. Colours and patterns swim and clamour for your attention. The fabric conditioner in your sweater smells as strong as air-freshener fired up your nostrils. Your comfy jeans are now as scratchy as steel wool. Your vestibular and proprioceptive senses are also out of kilter, so the floor keeps tilting like a ferry in heavy seas, and you’re no longer sure where your hands and feet are in relation to the rest of you. You can feel the plates of your skull, plus your facial muscles and your jaw: your head feels trapped inside a motorbike helmet three sizes too small which may or may not explain why the air-conditioner is as deafening as an electric drill, but your father – who’s right here in front of you – sounds as if he’s speaking to you from a cell-phone, on a train going through lots of short tunnels, in fluent Cantonese. You are no longer able to comprehend your mother-tongue, or any tongue: from now on all languages will be foreign languages. Even your sense of time has gone, rendering you unable to distinguish between a minute and an hour, as if you’ve been entombed in an Emily Dickinson poem about eternity, or locked into a time-bending SF film. Poems and films, however, come to an end, whereas this is your new ongoing reality. Autism is a lifelong condition. But even the word ‘autism’ makes no more sense to you now than the wordoror.
Thanks for sticking to the end, though the real end, for most of us, would involve sedation, and being sectioned, and what happens next it’s better not to speculate. Yet for those people born onto the autistic spectrum, this unedited, unfiltered and scary-as-all-hell reality is home. The functions which genetics bestow on the rest of us – the ‘editors’ – as a birthright, people with autism must spend their lives learning how to simulate. It is an intellectual and emotional task of Herculean, Sisyphean and Titanic proportions, and if the people with autism who undertake it aren’t heroes, then I don’t know what heroism is, never mind that the heroes have no choice. Sentience itself is not so much a fact to be taken for granted, but a brick-by-brick, self-built construct requiring constant maintenance. As if this wasn’t a tall enough order, people with autism must survive in an outside world where ‘special needs’ is playground slang for ‘retarded’, where meltdowns and panic attacks are viewed as tantrums, where disability allowance claimants are assumed by many to be welfare scroungers, and where British foreign policy can be described as ‘autistic’ by a French minister. (M. Lellouche apologized later, explaining that he never dreamt that the adjective could have caused offence. I don’t doubt it.)
Autism is no cakewalk for the child’s parents or carers either, and raising an autistic son or daughter is no job for the fainthearted – in fact, faintheartedness is doomed by the first niggling doubt that there’s Something Not Quite Right about your sixteen-month-old. On Diagnosis Day, a child psychologist hands down the verdict with a worn-smooth truism about
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