Head Talks

By Katherine May

 The problem with “I’d never have guessed”

You’re autistic? I’d never have guessed! I’ve got used to this response over the last few years. Like thousands of other women, I’ve recently learned that I’m autistic, having struggled through to middle age feeling profoundly different to everyone else around me.

I never seemed to be able to cope with the things that everyone else coped with: loud music, the perfume of the person sitting next to me on a train, the seams of my clothing. I was fussy, bad-tempered, anxious; every few years, the bottom would seem to fall out of my life, and I’d end up sick and depressed, unable to go to work or school. It took me years to learn how to make friends, and even then I seemed drawn to people who overwhelmed me somehow, demanding too much of me or trying to run my life. I could never quite find a balance.

I was only after I had my son that I began to feel sure that there was something going on that needed a name. All of the groups and social events that seemed so appealing to other mothers were like an electric wire to me: live and dangerous. Only after hearing a radio interview with an autistic woman did I finally recognise myself. It was a relief but was also terrifying. I had to come to terms with the fact that I couldn’t be fixed.

A couple of years on, autism is embedded into my identity, and I prickle slightly when I hear, I’d never have guessed. It’s meant well, but it’s not actually a compliment. I’m proud to be what I am – the way that my brain works has given me so much: an amazing set of friends, a husband who adores me (most of the time), a career in writing, and an endless fascination with the beautiful detail of the world. I feel lucky to be autistic, but it’s been a long journey to get here.

The problem with I’d never have guessed is that I’ve spent so much of my life masking my autism and pretending to be like other people. This is commonly reported by autistic women – we expend vast amounts of energy in ‘passing’, suppressing our desire to fidget, talk about the things we love, react to unwanted touch, or enjoy silence and retreat. In many ways, I’m grateful that I can get by in everyday life, but I also know how much it has cost me. On balance, I’d rather that people did guess, and that I could carry on behaving like myself.

There’s a stranger truth, too, behind I’d never have guessed. It reveals a flaw in our common understanding of autism – that it means people who can’t communicate or socialise, and who we don’t see as fully human. This is a terrible stereotype that’s been exploded in recent years by the many autistics who are finally talking about their experience of the world. If we seem more normal than you expect, then you might be about to take the same journey that I’ve been taking. Because, frankly, I’d never have guessed either.

World Autism Acceptance Day is April 2.

Katherine’s memoir about her life as an autistic woman, The Electricity of Every Living Thing, is published on 19^th April.