But You Don’t Look Autistic!

By Connor Long-Johnson

My story begins when I was first diagnosed with Asperger’s Syndrome in early 2017. I naturally both needed and wanted to share my diagnosis with friends, family and co-workers.

Thankfully, most of those who I told were understanding and showed me the compassion I desperately sought.

But as my disclosure widened and more people learned of my diagnosis, I started to hear the phrases that still haunt me to this day.

People would throw their hands up and open their mouths in surprise, “But you’re so CLEVER!” I would often hear them say, “I’m surprised because you don’t look autistic” would follow shortly after.

While all of these affirmations were given with the best intentions, very few people realised the damage they were doing, not only as an insult to me but as a derogatory comment about all autistic people.

What does it mean to ‘look’ autistic?

Should I be a social hermit, who spends 24 hours of the day at home, without a job and revelling in my obsession with trains?

Should I be limited in my intelligence, my ambition and ability to work? Is an autistic person really constrained to the stereotypes we see in the media – often of only the most severe cases of autism spectrum disorder? To answer in short, Hell no.

Yet from the moment I heard these responses I was filled with dread.

It instantly told me of the challenges that I would be facing: finding support would be difficult, for I look too normal to be considered worthy of any help that I might need such as through counselling or people would expect me to ‘just get on with it,’ doubting my diagnosis.

I would be dismissed as fine, having two degrees (one a Master’s in English Literature, which people were quick to point out not only as a source of my success but to also legitimise my apparent normalcy in their minds), a full-time job and working towards a doctorate at the same time. What help could I possibly need? I was doing fine, wasn’t I?

No, I was not. Because of the veneer of normality and the fact that I didn’t live up to people’s stereotypical image of an autistic person, it didn’t seem to matter. This was despite the fact that internally I would be going through many crises’ day by day, struggling with my emotions – the anxiety and depression brought about by autism – and finding it difficult to come to my own terms with my diagnosis. I was not perfect, and I too had my expectations – some I feel deeply embarrassed about, looking back now – about what an autistic person should look, sound and think like and how those images compared with me. These hurt all the more now I have suffered the same scrutiny from others and has taken plenty of time and soul searching to remedy.

Part of me can’t help but smile at the irony.

I continue to struggle with empathy, and yet, since my diagnosis, I have found it easier to empathise with others who have a diagnosis of ASD.

I can understand the horror of those who – like me – feel part of a special, wonderful group of individuals and yet totally isolated, too autistic to be normal, but considered too functional to be a concern.

My workplace is the best example of how the opinions of others manifest themselves, with my anxieties at times being dismissed due to my seemingly ordinary outward appearance. Because I kept my head down, got on with the job and appeared to have no issues in my role, it came as a total surprise to my employers when they discovered I was having issues coping with the stresses in my life to the extent that I felt like life was no longer worth living. The things I was anxious about being dismissed as irrelevant and not worthy of my worries.

It didn’t matter to them – or to others – the profound sense of isolation that I felt in my life, with my reluctance to socialise impeding my ability to form bonds and close relationships to others. This in itself raised more examples of the bias, as all I was met with was “But you’re so friendly and polite!” That was the standard response when I opened up about my feelings of loneliness and, it didn’t matter that I was at work, where I was being paid and had to be friendly and polite to those around me in order to work effectively.

It didn’t matter either that, given the choice, I would have liked to spend my free moments in a time of quiet contemplation and that I was too anxious to ask to be left alone during these moments. So instead I smiled politely and joined the chatter, ever the reluctant participant.

This ignorance wasn’t confined to just to my work life. As a lifelong singleton, girsl would often comment on my lack of female friends and – when told of my condition – rifle off the same, tiresome excuses and empty comforts that I would come to expect. I just had to get out more! How was I supposed to meet girls if I didn’t go to parties? Did I expect the girl of my dreams to just fall into my lap? All of these lines – again I’m sure, given with the best intentions – fell agonisingly short and in some cases were useless dribble. They didn’t take into account that I’m extremely sensitive to noise, so a party with loud music and shouting seemed impossible for me, or that, when in a large group I retreated into my shell and would not come back out again, these things did not seem to cross anyone’s mind, leaving me feeling hopelessly frustrated.

In a group that is already marginalised and often overlooked, I know that my experiences will be amplified because of the way I look and sound. Being autistic is a challenge at the best of times, but the fight to legitimise my condition to those who cannot or will not recognise it due makes my work even more difficult.

But I continue to soldier on, my story unfinished and my will undeterred.

I refuse to live a life without hope. Even if the future looks like a slog, trudging through fields of ignorance to finally reach a moment where I am understood for who I truly am will make the taste of my victory even sweeter.

Connor Long Johnson

Connor Long-Johnson is a writer and teacher. He is studying at the University of Greenwich and working towards a PhD in English Literature. He enjoys reading and writing horror stories and spends all his free time gaming, reading or writing.

His website is https://cljohnson.co.uk/

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