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When I Told My Identical Twin That We Might Be Autistic

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I remember my “light bulb” moment, the one most so-called “Aspies” talk about.

I was sitting in a lecture theater being taught about different disabilities for a new role I had undertaken as a support worker when the lecturer spoke about something called “Asperger’s syndrome.”

At the age of 25, it turned out to be the single most important lesson of my adult life, and a strange rebirth of sorts as I learned more about my true and somewhat puzzling nature.

As the lady spoke about the condition, I realized that she was describing me – and not only that, she was also describing my identical twin sister, Gemma – the closest person to me (in both senses of the word).

My brain lit up and the world suddenly stopped spinning as I processed what the lady was saying and finally felt my entire life begin to slot into place – piece by piece. As she reeled off various traits and characteristics, I became more and more certain. I was Autistic, and so was Gemma.

As I made my way home that evening, I studied the handout which had been given to me as part of my training and felt my vision crystallize. It looked even better in black and white – a confused and cluttered mind finally mapped out into some clear and manageable order – finally some clarity to all the chaos. I remember feeling that everything was different now. I was awake.

Tears began to fall as I grieved for the painfully “shy” girl who didn’t know how to make a friend at school, the one who hid away in the toilets and sometimes even ate her lunch in there, the one who struggled to navigate the social minefield of secondary school and the shame which came with it. And then I thought of Gemma – the one who was always right there beside me, experiencing those same painful struggles.

We never spoke about it – not once. It was just too painful. As soon as we got back from school, we shut the door and tried to forget about the reality of the day. But it was always there between us – the strange and awkward “elephant in the room.” Tears stung my eyes, however, as I realized the worst part of growing up with undiagnosed autism. At times, I secretly resented my twin sister. Although I loved her and couldn’t imagine life without her, especially at school, I assumed that my difficulties struggling to connect and make friends, were somehow down to Gemma. I thought this throughout most of my teenage years, but of course, I was never cruel enough to say it out loud. After all, she probably thought the exact same thing about me. And that hurt.

All our lives, Gemma and I were able to rely on each other for all our social needs. We had an automatic best friend and a constant companion from the moment we were born. So, when I began to notice my social shortcomings as a young teenager, I began to think that maybe our unique “twinship” was the reason why we struggled to socialize and do things others seemed to take for granted. What else could it have been? I knew nothing about autism and neither did my parents. Sometimes I wonder what life would have been like if I’d have been able to put the pieces together sooner…

I’d watch other girls at the front of the bus chatting away, sharing their stories and their make-up, and wonder why I wasn’t like that. What did they have that I didn’t? I’d push it away and go into survival mode, silent and still. I didn’t want to attract attention to myself. Blending in – that was key. Someone might try to talk to me, or just say “hi” and how the hell was I supposed to respond to that? My worst fear was being exposed for what I was – a terrible social failure.

My little sister wasn’t like me and Gemma. She was chatty and smiley and always knew how to respond to people. She had friends and special powers, or so it seemed. I envied her.

All my life I’d felt like a lonely and misunderstood enigma, so you can imagine the relief I felt when I found out about Asperger’s syndrome by chance as part of my support worker role (which didn’t last long).

As I struggled to interact with the students and grappled with social anxiety before meeting them, I couldn’t help thinking that it was me who needed support!

Meanwhile, Gemma was busy making a name for herself as a top long-distance runner – traveling all over Europe and basking in the glory of trophies and newfound adoration. I never thought to share my “autism awakening” with her, as it just seemed like too much of an awkward beast to bring up out of the blue. The timing was never right. Plus, Gemma might have been offended. I just didn’t know.

She had finally found her feet it seemed and was winning at life, although it hadn’t always been that way…

As I saw her face smiling out from all the newspapers, and all the medals beginning to mount on her bedroom wall, I began to wonder if maybe, just maybe, she had managed to leave her social struggles behind. And as for Asperger’s, maybe she had actually beat it?

Instead, I chose to share my feelings with my partner and a trusted friend.

“Oh no, you’re not like that,” she said adamantly when I mentioned Asperger’s — a dismissal which felt like a kick in the guts.

My partner listened half-heartedly, but he could never really understand. This new knowledge felt like a big deal — a revelation. It was the key to everything — my mind, the way I moved in the world, and my experiences up to now. However, I chose to keep it locked away there for the next five years. I knew my mind better than anyone and I knew I had Asperger’s. But so what? What was I supposed to do now?

The only person who could possibly understand was Gemma. But life had taken us in two completely different directions. I wondered how she coped deep down with all the pressures which came from being such a successful athlete — the interviews and the lifestyle of mixing it up at big events. I wondered if she felt things in the same way that I did, or if it was all in my head… Maybe I was what I had always feared – “crazy,” and worse — completely alone.

It was only years later when Gemma’s running career began to suffer that I saw the cracks beginning to show. She was no longer winning – no longer in control and as she began to slow down physically, her mental health was deteriorating fast. I witnessed awful meltdowns — the same frenzied outbursts that I was capable of when I felt overwhelmed. The same painful overload I felt inside my head at times when it got too much. I felt her pain as if it was my own and wanted so desperately to help.

So, the next day I typed the words “Asperger’s syndrome” into Google and handed her the laptop. “What do you think about this?” I said reluctantly, not sure how she was going to react.

I waited for a response, and finally came tears came, just as they had for me. She swallowed hard. I guess it was kind of hard to swallow – the challenges, the struggles, but also the gifts and the beauty of being able to see things so differently. Finally, she looked at me and said: “Why didn’t you tell me sooner?”

In the days that followed, I plucked up the courage to message her with some of my old diary entries — detailing my struggles and school and in various workplaces.

Gemma messaged back with the words I had wanted to hear for so long. The reaction to my own secret shame.

“That sounds just like me,” she said.

She described her experience at school, the way she gazed out of the bus and felt detached, alien.

It was the exact same story I had told. She described how her difficulties affected her running but also drove her forward at the same time, giving her focus and “tunnel vision.”

The revelation was bittersweet. Finally, here was someone to believe me – someone who could finally understand. It meant that I wasn’t crazy and I wasn’t alone. But it also meant that Gemma had shared the same painful, invisible struggles I had, possibly even worse. All my life, I had always felt like it was me against the world — that there was this one thing in my head, a way of thinking that was so peculiar and so strange that it couldn’t possibly belong to anyone else.

But it did, and that person was the closest person to me — in both senses of the word.

Our discovery bought us close together again and we spoke about our experiences of autism in pubs and restaurants. We confronted the “elephant in the room,” and took it out on long walks with us, finally acknowledging its presence after all these years. I made a point of mentioning it at every opportunity and I didn’t whisper it like some dark, shameful secret.

We spoke out loud in the daylight, and I didn’t care who heard us. The more we dragged the discussion into the light, the more shame seemed to fall away.

Each time I said the words “Asperger’s syndrome” out loud, it seemed to come out more easily, until finally, it felt like it was mine. My face no longer stiffened into an awkward grimace, and the more I said it, the less strange it began to sound.

We took the decision to pursue a diagnosis together at the age of 32, and went through the process side by side. It was finally confirmed on April 12, 2018, and I gained the clarity, closure and confirmation I needed in order to move forward – to make peace with the past and to finally accept the truth of my being.

We stopped at McDonald’s afterward at Gemma’s suggestion. I remember her saying that we should do something to celebrate, and it made me smile. I’d never thought about it like that before and chose to eat a Happy Meal. After all, I was happy!

I wasn’t a sad story after all — I was just different, and I was no longer alone in my loneliness. Gemma was with me and we were stronger than ever. I was proud of what we were. We were survivors.

We had carried our invisible struggles around with us for three decades, like bags of secret treasure. They were heavy, but they were valuable and they were ours to carry with us to the end.

The thing I wanted most in the world was acceptance and belonging. I had it now and it made me feel strong – as strong as the “Steel” surname we both shared. I wondered how other people with autism coped without a twin, a guardian angel, to walk beside them on this strange and often difficult road. I know not everyone’s as lucky as me, but my hope is that every Autistic person finds someone who “gets them” — someone who feels like home.

Acceptance and belonging; it’s what everyone wants – what everyone deserves. I took a deep breath and smiled to myself. I had it from the start and I would never, ever let it go…

Originally published: April 30, 2021
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