asperger's & autism 16-07-2009

unsurprisingly, i'm often asked to talk about asperger’s and autism or to become involved with organisations who work on behalf of people with asperger’s and autism, many of whom do wonderful work. but i always decline, for two reasons:

1) i know very little about the subject. i did no research for curious incident (other than photographing the interiors of swindon and paddington stations). i’d read oliver sacks’s essay about temple grandin and a handful of newspaper and magazine articles about, or by, people with asperger’s and autism. i deliberately didn’t add to this list. imagination always trumps research. i thought that if i could make Christopher real to me then he’d be real to readers. i gave him some rules to live by and some character traits and opinions, all of which i borrowed from people i know, none of whom would be labelled as having a disability. judging by the reaction, it seems to have worked.

2) curious incident is not a book about asperger’s. it’s a novel whose central character describes himself as ‘a mathematician with some behavioural difficulties’. indeed he never uses the words ‘asperger’s’ or ‘autism’ (i slightly regret that fact that the word ‘asperger’s’ was used on the cover). if anything it’s a novel about difference, about being an outsider, about seeing the world in a surprising and revealing way. it’s as much a novel about us as it is about christopher.

labels say nothing about a person. they say only how the rest of us categorise that person. good literature is always about peeling labels off. and treating real people with dignity is always about peeling the labels off. a diagnosis may lead to practical help. but genuinely understanding another human being involves talking and listening to them and finding out what makes them an individual, not what makes them part of a group.

i passionately believe this and i’ve said it repeatedly in many different forms. to become a spokesperson for those with asperger’s or autism, or to present myself as some kind of expert in the field, would completely undermine this, and make me look like a fool into the bargain. i would much rather spend my time writing more novels, standing up for difference and trying to understand outsiders who see the world in surprising and revealing ways.