Hurray! I am #ActuallyAutistic

Do you remember the summer you did your O Levels? Going on holiday knowing that there would be news when you got home, not knowing which way it would go or how it might change your life.

That was me in the mid-70s, in a dreary holiday camp somewhere in Norfolk. Me and my sisters, spending our lunch money on cigarettes and Walnut Whips and waiting for the evening when we could go to the disco and dance to KC and the Sunshine Band and get chatted up by unsuitable older men. And always at the back of my mind, the results waiting for me at home.

That was me again this summer, in a lovely seaside town on the south coast of England. Me and my husband, spending our lunch money on ice cream and waiting for the evening when it would stop being so hot. And at the back of my mind, the results. And I’m not talking about the World Cup.

The week before we went away, I had an assessment for autism. I knew I would get the result when I got back. And I knew I wanted it to be positive, because if it wasn’t I’d have to go back to the drawing board and find another reason for being weird.

Anyway, you know the answer because you’ve read the title of this post. I got the report and it said: “The outcome of this assessment is that you meet the diagnostic criteria for Autism Spectrum Conditions.”

There was a feeling of relief, followed by a feeling of vindication (because I had worked it out for myself, and I was right), followed by feeling surprisingly emotional. Because, after 60 years, I know who I am now. And everything in my life now makes sense.

Working this out has probably taken about five years. At first I thought my problems were about being introvert. Then I thought they were about being INTJ, especially after my boss shouted at me for “always thinking you are right”. Then I thought I was just being a grumpy old woman.

Then I kept seeing things on TV that resonated. There was a Channel 4 programme that ended with the warning: “Lots of people have autistic traits. It doesn’t mean you’re autistic.” But it came with an online test, and when I took it I was over the threshold. Just to check, I made my husband take it too, as a control experiment: his score was low. Later I found out that this is called the AQ test and it’s a screening tool used by experts. (Later I found out that one of the experts is Simon Baron-Cohen, a man who doesn’t really get it about women on the spectrum.)

Lots of things started clicking. Then I found out on social media about a book called Aspergirls and when I read it, it sounded just like me: “a girl trying to find her way in a noisy, chaotic, confusing world”.

It sounded like me as a child: shy, absent minded, androgynous, obsessed with reading, loving information, more in my mind than my body, not engaging with other children… isolated.

And it sounded like me as a teenager: emotionally immature, not fitting in, with social anxiety and selective mutism (me, at secondary school), not connecting with normal women but failing to be one of the boys (me, at university), obsessed with music… depressed.

And it sounded like me as an adult: wanting to be spontaneous and unconventional but afraid of change and comforted by rules, sensitive but seen as aloof, struggling with sensory overload (me, in the workplace), limited by literal thinking, outspoken, misunderstanding, being misunderstood, masking – pretending to be normal, because women are good at that… angry.

Everything connected.

After that, it was a case of getting the courage to go to the GP and ask for a referral. Then it was a case of waiting.

And I had time to think about the good stuff, too: logical thinking, honesty and straight talking, not “playing games”, attention to detail, the focus and passion to dig deep into things I am interested in, a sense of fairness and social justice, being good with analysis, knowledge and facts. These make me honest and they make me clever, and I like being those things. They are part of my personality.

Meanwhile, there was Chris Packham’s BBC documentary Asperger’s and Me – interesting but male.

Obligatory Chris Packham photo.

And there was a Channel 4 News piece about the fact that girls tend to get a later diagnosis than boys. “The lost girls” they called them. I saw myself there as well: “too different to be normal”, as one of the teenagers described herself.

And I found out about all the people getting diagnosed in later life, and that many of them are female. Because we keep our heads down and we keep quiet and we try to fit in. My favourite quote so far is: “I should have burnt more cars.”

Viv Albertine didn’t burn cars but she did join the Slits and she still didn’t get diagnosed – according to her new book To Throw Away Unopened, she has now self-diagnosed as autistic. If I’m going to be in the same tribe as her, I’m not complaining.

In March this year Channel 4 showed Are You Autistic?, and by then I knew enough to answer the question for myself. And I knew enough to shout at the telly when Simon Baron-Cohen tried to talk about women with autism. (He’s not much liked by women with autism, and they are my people now.) 

For the last few months, in my head, I practised saying I am autistic. Just like I’d practised saying “I’m 50” or “I’m 60” in the run-up to my big birthdays. 

And now I can actually say it, and know that it’s true. This makes me happy.