I’m going to tell you a terrible thing: when I tweet about my life on the spectrum, I get more interest if I use the term ‘Asperger Syndrome’ than if I use ‘autism’.
I’m going to tell you an even more terrible thing: I completely understand that.
I’ve been there too. When I first got an inkling that I might not be neurotypical, my instinct was that I wanted to have Asperger Syndrome, please. It had a certain cachet about it, a faint whiff of genius, and I wanted some of that. Autism? That was definitely other people. I was separate from them. I didn’t want to wear that label.
And then, when I discovered that Asperger Syndrome had disappeared from the latest Diagnostic and Statistical Manual, I was furious. How dare they take it away from me as soon as I’d found it? How dare they throw me in one, big bucket with all the other people on this supposed spectrum?
In my defence, I have never knowingly identified with any social group, and this one was more of a struggle than most. There was a shift, for me, from feeling pleased that I had finally found an excuse for the worst aspects of my behaviour, to slowly realising the full extent of what it meant. Learning about autism was a process of remembering: all of the social graces I’d learned by rote, all of the transition points when I’d realised that my behaviour didn’t match other people’s. It forced me to recall all the times that perfectly normal aspects of life – holding down a day job, moving house – had sent me into spirals of meltdown that I couldn’t overcome.
I remain resistant to the idea that I’m disabled, but then I’ve also come to realise how much help I get in everyday life from my husband, who endlessly smoothes things over for me. With that, I wouldn’t look nearly so capable, and I certainly wouldn’t attract all those approving comments that you’d never guess. I’m in a privileged position, in a wealthy country. It’s graceless to believe otherwise.
I suppose, in truth, I’ve come to realise how much I have in common with those ‘other’ people, who are more like me than anyone I’ve ever met before. And they have welcomed me, and recognised me, in ways I’ve never dared to hope for.
So, dropping ‘Asperger Syndrome’ reflects more than a change in diagnostic procedure. Saying the word ‘autism’ is a political act. It asserts membership a community of people who all share a worldview that’s invisible in mainstream culture. It’s a refusal to recognise those commonalities and then then go running towards the neurotypical people with open arms, saying, ‘No, wait! I’m just like you really! I’ll change!’
Because God knows I’ve done enough of that in my life.
See you all next week (and don’t forget to vote),