Autism has a ‘cuteness’ problem. My reality is way different

When I was 13, my favourite teacher decided that it would be a good idea to call me “Julia Peculiar” in front of the entire class.

Whereas a normal kid might have resented being called a little weirdo so publicly, my pubescent heart inflated so much in that moment that it could have dislodged a lung. It was a risky move, but this lady knew what she was doing. She saw that I was an awkward kid who couldn’t throw and catch balls, and had calamitously messy hair resembling the base of a leek.

Julia Pound says autism has reached saturation point in popular culture.

She also knew that a public acknowledgement of my “not for everyone” status was exactly what I needed at that moment in my life. This nickname was my emotional-support catchphrase for many years; if ever I misunderstood the punchline of a joke, or tried to hide behind a large pot plant while a group photo was being taken, I would wash the shame away by saying to myself, “It’s OK – I’m Julia Peculiar!”

Fast-forward a few decades, and my emotional support catchphrase was replaced with a diagnosis of autism spectrum disorder (ASD). After three one-hour sessions with a psychologist who depleted my life force and discretionary spending budget for the month, she concluded, “Well you definitely have it”, to which (because I’m Julia Peculiar) I inquired, “Have what?”

“Autism,” she replied, very slowly, as if addressing someone who’d just woken up from a lobotomy.

In recent years, autism has reached saturation point in popular culture: programs such as Love on the Spectrum feature autistic people being endearingly awkward in a variety of settings, and TikTok is overrun with “You might be autistic if …” videos made for audiences with the attention span of gnats.

Chris Lilley’s mean-girl character Ja’mie revealed on a recent episode of her podcast that she, somewhat bafflingly to autistic people, was “on the spectrum”. It’s almost as if autism has become at worst a punchline, at best a little bit cute.

I wouldn’t mind being cutely autistic – it sounds like a blast.

Chris Lilley character Ja’mie said she was “on the spectrum” in a recent podcast.

The problem is that actual autism – not its social media doppelganger – is about as cute as a crocodile nibbling on your wooden rowboat while a shark keeps watch to stop anyone from coming to save you. It has life-altering consequences for those of us affected, particularly with regard to mental and physical health.

According to research published in 2022 in the journal JAMA Psychiatry, autistic women are seven times more likely than non-autistic women to be hospitalised in a psychiatric ward before the age of 25. Before my diagnosis, I was hospitalised five times, for periods of up to two months.

For years, I was too ashamed to admit this to more than a handful of people because I firmly believed that it was my own fault for amassing so many diagnoses, including generalised anxiety disorder, panic disorder and major depression. I was never able to shake the feeling that there was something else muddying the waters, even though I could never put words to those feelings. I later learnt that this difficulty in recognising and expressing emotions is known as alexithymia, a common autistic trait.

Living with autism can also pose significant physical health challenges. A survey conducted by the University of Cambridge and published in 2020 found that autistic people were 1.5 to 4.3 times more likely than non-autistic people to have a “wide variety of health conditions, including low blood pressure, arrhythmias, asthma, and prediabetes”.

There is a lot to tease out here: do people with autism suffer from more health problems because they are less likely to go to the doctor? Is their pain taken less seriously because they are autistic? Or could it be that their difficulty describing their symptoms is a barrier to diagnosis, leading to an escalation of their health condition that might have been treated earlier in a non-autistic person?

Although I have been in employment since 2017, I have lost years of my adult life to symptoms that 19th century doctors might have chalked up to “hysteria”: incapacitating dizziness, insomnia, and fatigue so profound that I spent months lying on my yoga mat, feeling as though I had cement in my veins.

A few years ago, I deferred a university degree for eight months due to vertigo that prevented me from sitting upright. After undergoing a battery of tests that showed nothing of concern, I asked my then GP what the next step was. “There is nothing more to do at this stage,” she told me, which nearly a decade later is still one of the worst things that anyone has ever said to me.

Still suffering many of these mental and physical symptoms, I took a leap of faith in 2015 and decided to study teaching. Teaching rounds were tough: the corridors were unbearably loud, and the fluorescent lights made my head spin.

I felt as though I was constantly pretending to look normal so as not to arouse suspicion: I toned down my wardrobe and forced myself to eat bananas, which appeared to be the official fruit of the staffroom. When my mentor asked me what I had done at the weekend, I told her that I had been on a picnic, when in fact I had been quaking under a doona the whole time, trying to find the courage to return on Monday.

Teaching, if you haven’t heard, is an emotionally and physically taxing profession invented by sadists. But this exhausting, transcendent, heart-expanding job has saved me from a lifetime of loitering on the outskirts of normal-town.

As soon as I began teaching, I saw my quirks and oddities in some of my students, and they, in turn, saw theirs in me. I wondered why it felt as though we spoke a common tongue, despite the 30-year age gap. I began to suspect that the kinship I felt with these students had to do with us being cut from the same cloth.

A few years ago, a year 8 student and I discovered a mutual fascination with etymology. Every lesson, she would arrive with a new titbit to share.

“Did you know that the words ‘glamour’ and ‘grammar’ have the same origin?” she asked me and the rest of the class one day.

“You’re such a nerd,” I said. It was a risky move, but I knew what I was doing.

“Take that back, Miss!” she beamed, her eyes sparkling like tiny disco balls.

Julia Pound is a high school teacher from Melbourne.

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