MY AUTISM DIAGNOSIS SET ME FREE
WHEN YOU think of autism, what do you picture? You might not realise it, but your answer might be the reason you have overlooked someone’s autistic traits — maybe even your own.
A year ago, I would have said Rain Man. The little I thought I knew about autism was patched together from stereotypes and inaccurate media depictions. I’m ashamed to say that because it wasn’t something I thought affected me, it didn’t even occur to me to learn more about it.
So when it was first suggested to me back in 2016 by an autistic relative that I might be autistic, I laughed it off. I’m not mathematical. I’m not quiet or shy. I can hold my own in social situations, even if I don’t enjoy them. Sure, I get tired after a while, or overwhelmed, and sometimes that causes me to say awkward things, but I’m just introverted — and isn’t everyone awkward sometimes? I gave it all of two seconds’ thought, then brushed it off. My ignorance, internalised ableism and arrogance lost me two years of self-knowledge and understanding.
Fast forward a couple of years to 2018 where, at the grand old age of 30, I was finding it harder to mask my struggles. Chatting to a friend, I mentioned a few of my dislikes and difficulties, particularly processing sensory input. I didn’t talk about them often because I assumed everyone shared them but handled them better than me. I didn’t want to complain. During this conversation, I discovered, for the first time, that this isn’t the case. Most people don’t have difficulty in bright sunlight. Most people don’t struggle to eat a meal if it doesn’t meet a whole plethora of unwritten food rules. Most people don’t travel in a freezing cold car in the winter because they’re nauseated by car heating. Most people can tune out background noise.
A few days later, my friend messaged me to say they’d seen a Chris Packham documentary about autism and had recognised a lot of what I’d described. Was it worth looking into whether I might be autistic? Again, I laughed it off — but this time I wasn’t so sure. This was the second time it had been suggested to me and perhaps I didn’t know as much as I thought I did.
“Look,” I said, exasperated. “I already suffer from anxiety, depression, all this random sensory stuff, I have no energy…” I reeled off my symptoms — at least, the ones I wasn’t still working overtime to hide from the world. “I can’t have yet another thing wrong with me.”
Autistic readers are probably, rightfully, screaming at the page by now. Not just for my internalised ableism in not understanding the most fundamental thing about autism — it’s a neurological difference, not something “wrong” — but for ignoring something that actually explained my disparate symptoms, rather than added to them.
A month later, at a big Jewish family party, I bumped into the same rel- ative who had first planted the seed. As I sat wincing under the uncomfortable bright lights, wringing my hands nervously (“stimming”, as I later discovered) as a stranger made small talk with me, it was so blatantly obvious to her as a fellow aspie that she tried, again, to tell me. This time I couldn’t shrug it off — because I was a captive audience. And this time she was able to educate me.
Because of the way that girls are socialised, their autism can present very differently, which is why women can fly under the radar. This isn’t helped by inaccurate media depictions of autism, the fact that most research focuses on boys and men and that girls tend to actively hide their difficulties. It was once widely believed that women couldn’t be autistic.
She described a typical ‘female’ profile of what some diagnostic
It felt like a return to my home planet
manuals call Asperger’s Syndrome (most diagnostic manuals now use autistic spectrum disorder — I don’t really like either of these terms to describe what I don’t see as an affliction, which is why I just say I am autistic, the same reason I don’t say I have autism).
While every autistic person is different, there is a certain autistic profile which may as well have been a specific description of me as a human. The hyper-verbal, creative, deeply emotional, sensitive, colourful, “out there” autistic. The one that doesn’t look anything like the silent computer programmers in the media. The one whose childhood special interests might be ponies, or princesses or boy bands rather than trains. The one whose difficulties go unnoticed by her teachers as she excels in certain academic pursuits, but struggles to make friends or catch a ball. The one whose totally involuntary autistic meltdowns are written off as tantrums or drama.
This description was so eerily accurate that, finally, I couldn’t deny that it rang true. The next day, my relative sent me a quiz to take. It’s not diagnostic, but it’s designed to give a good indicator of whether or not to pursue a formal diagnosis. I was a third of the way through the quiz when I started sobbing. Autistic people, as it turns out, are pretty damn good at spotting patterns. I could already tell what the quiz was getting at and what the answer would be. My result was clear as day. On a neat graph, I skewed almost entirely towards the neurodivergent end of the spectrum.
I remember my hands shaking as I phoned my husband to tell him I thought I might be autistic. My voice wobbled as I read an informal checklist of “female” autistic traits. Part of me expected him to say : “Oh, everyone feels like that,” or “I’ve never noticed anything different”. I mean, how could I have been autistic my whole life and not known? But it immediately made sense to him. He had always known I was different. And, because he’s wonderful, he had been quietly and lovingly compensating for and helping me with the areas in which I struggle.
Next, I tried my mum who, if I’m honest, I expected to dismiss the idea out of hand. As I read the checklist to her, she went very very quiet. If I’d thought to listen hard enough in that moment, I might have heard the actual sound of a giant penny clunking to the ground. For the two people who knew me best, who had the most intimate picture of my patterns, behaviour, difficulties and strengths, diagnosis was a formality. If this was autism, then there was no doubt that I was autistic.
Through my husband’s health insurance, I very luckily managed to get a quick private diagnostic appointment. It’s important to note here that adult diagnosis can come with a long NHS waiting time, uncooperative GPs or hugely expensive private appointments, so many autistic adults are self-diagnosed. While I believe this is entirely valid (if you identify that strongly with such a lengthy and diverse list of symptoms, it’s unlikely that you’re not) I felt I had to know for sure. I needed that external validation to know I hadn’t imagined it all.
While waiting for my diagnosis, autism, as it does for many newly diagnosed adults, became my new special interest. I immersed myself in reading. Book after book, article after article. I joined Facebook groups for autistic women and, for the first time ever, found out I wasn’t alone. I had always believed my experience of the world to be so unique that it was impossible to articulate. Reading post after post by women whose experience so directly echoed mine, in such weirdly specific and profound ways, it felt like I’d returned to my home planet. It was incredibly emotional.
I spent hours poring over moments from my life, reframing them through the lens of this new knowledge where suddenly they made sense. I didn’t have to hate myself for “failing” to get it “right”. I could forgive myself for the things it took me longer to learn, the situations I couldn’t navigate, the extra help I’ve always needed from people around me, my hyper sensitivity — I could go on and on forever. And I could embrace the things I was great at — my special interest in language, my creative passions, my logic and reasoning skills, my ability to spot patterns — I could go on and on there too.
Ultimately, this discovery has been freeing, transformative and life changing. Knowing has given me permission to make changes to my life to make everything easier and to help me thrive as the best version of me, rather than someone scrambling to live in a conventional lifestyle that wasn’t designed for me. I’m proud to be autistic — and I wouldn’t have it any other way.
Sara Gibbs is a comedy writer whose credits include Radio 4’s News Quiz, The Now Show and Dead Ringers