How writing a memoir revealed to me that I am autistic

Now, unexpectedly, I had stumbled across the answer to my original question. I’m autistic.

Throughout my lengthy and eventful career as a psychiatric patient, neither I nor anyone else ever considered autism. Autism meant no social skills. It meant severely disabled. It meant a mathematical genius. It meant an eleven-year-old boy who loves trains. It meant everything, apparently, everything except me.

I’d been diagnosed with dyspraxia while at university, after I read about it and asked my support worker to refer me for an assessment. Dyspraxia is a little like dyslexia, except that instead of reading and spelling, it affects my ability to co-ordinate actions and movement. It explained why I’m so clumsy and always lost. It explained why PE was so mortifying, and that one memorable sports’ day when I accidentally threw a javelin backwards into a crowd. It was why I had never managed to ride a bicycle or drive a car. I’d assumed all those things were just because I was crap, so an alternative explanation was welcome relief. But I didn’t think dyspraxia had anything to do with my mental health.

It was while I was working on All My Worldly Joy that I became aware of autism – actual autism, rather than the Rain Man stereotype I’d grown up with and never thought to interrogate. This was nothing more intentional on my part than mindless scrolling through social media when I should have been doing something else. I came across the budding online autism acceptance movement, and autistic influencers, tweeters, Instagrammers, TikTokers, and bloggers who share their own experiences. Just like when I first learned about birth trauma, it was not the people who were trained and paid to help who came up with the goods, but those who were suffering themselves.

Some described an overlap between dyspraxia and autism. Huh, I thought. That’s interesting. I read up on it. I read about how autistic people often have highly focused

interests, precocious abilities in childhood, unusual sensitivity to light and sound, social anxiety, a direct communication style, an intolerance for small talk, a vivid imagination, a tendency to be perceived as quirky or eccentric and to feel overwhelmed by their emotions . . .

Still, I wasn’t inclined to pursue a diagnosis. I had enough of those. A great stack of them. A cupboardful. I tried to put it aside, but it nagged at me. Was I genuinely autistic? Had I been autistic all along, and was that the reason my life had taken the course that it had? Would I ever know for sure? Here was another potential explanation for a whole bunch of things, and with it, potential for relief and an antidote to some of the shame I’d been lugging around all my life.

But diagnoses, I argued with myself, are less an objective scientific reality and more a social construct. They evolve along with the societies who invent them. They’re often helpful, but not always. And these autistic traits and characteristics are probably relatable to most people, to some extent. What if this is just confirmation bias?

It’s a bit spooky, though, isn’t it? came the counter-argument. Look at this photo of you, in your first term at school, lining up coloured blocks on the carpet while other children play together. In this one you’re eight, clutching two enormous dolls in your chubby arms and endeavouring to smile for the camera, but accidentally producing a facial expression that can only be described as utterly terrifying. Look at the sheer number of hobby-based spreadsheets you’ve created over the course of your life. This one is called ‘Sankyo for the Music’ and it contains nearly 1,500 different arrangements of tunes for the 3S music-box mechanism manufactured by Sankyo from 1985 onwards. You made that for fun. Other people watch television. Let’s talk about how you plan every second of your time in meticulous detail, how you’ve listened to the same songs over and over for decades, and the fact that you’ve felt chronically misunderstood your entire life.

In the end, I decided to book an autism assessment. It wasn’t that I needed to know whether I was autistic or not. I knew. The more I learned about autism, the more certain I was. Nor did I think it would be fraudulent to tell people without inviting someone to pass judgement after meeting me only a handful of times. Many autistic people can’t access an assessment for all sorts of reasons and that doesn’t make them less autistic. What I really needed to know was this: if I put all the evidence in front of someone with qualifications, what would they say?

But I couldn’t face the NHS route of arguing my way onto a years-long waiting list, and private assessments cost thousands of pounds. I was stumped, until someone on Twitter recommended a psychologist-led adult autism practice who were more affordable and did remote assessments over video calls. Most importantly, the website emphasised that they viewed autism as a difference rather than a deficit or a disorder. This meant that they used the official medical criteria to render the diagnosis credible, but in all other respects they took a non-medicalised approach.

After a few months on a waiting list, many questionnaires, and four interviews, a psychologist confirmed that I – thirty-four years old and sitting at my laptop, sur- rounded by dolls – was undoubtedly, unequivocally autistic.

‘Congratulations,’ he said. ‘You’re part of a community of wonderful people.’

He explained that being funnelled into psychiatric services in early adolescence and then diagnosed with everything under the sun was ‘a common pipeline’ for autistic girls. What autism looks like in women and girls is often different from what it looks like in men and boys. Mental health services are slowly catching up to this, as is society more broadly, but female autism is still chronically under-recognised and under-diagnosed. As a result, autistic girls and women are treated as if they’re mentally ill until that becomes a self-fulfilling prophecy.

My autism diagnosis felt like a lamp lit suddenly in a dark room, as no other diagnosis has except dyspraxia and complex PTSD. It still feels liberating and sense-making. It’s helped me to understand and accommodate my sensory needs, for example by wearing big sunglasses in the supermarket. It had never occurred to me that I don’t have to tolerate those glaring overhead electric lights that are like kebab skewers in my eyeballs. Nor did it occur to me that if I were more comfortable, I might be less likely to spin out emotionally. I look like a bug, but people are going to think I’m odd whether or not I try to convince them otherwise, so I may as well wear sunglasses indoors and swing on the swings in the park because it feels lovely.

As I review my past through my new autism sunglasses, I have more compassion for my younger self. As I view the present, I’m more likely to give my current self permission to be who she is rather than to conform to expectations. I’m more likely to forgive myself when I become intensely anxious over things that I know other people would take in their stride, or when I struggle to communicate. I shouldn’t need a diagnosis for any of that, but I can’t deny that it helps.

(Some parts of this blog post have been adapted from the text of All My Worldly Joy.)