By Jessica Horner
The day I was diagnosed with autism I wept.
It wasn’t a surprise - by the time we reached assessment day I had so many health care professionals ‘unofficially’ convinced that I had Autism Spectrum Disorder (ASD) that it seemed like mere confirmation of a predetermined outcome. And yet I was exhausted.
First, I had to do an assessment- my assessor was lovely, but the tasks felt gruelling. We spent hours working our way through tests and assessments designed explicitly to push me to my cognitive and emotional limits. That alone was exhausting. Then I was dismissed from the room so the assessor could talk to my parents about my 'behaviours' to determine that this was indeed something that I had dealt with since birth.
I meanwhile, sat in a café downstairs tapping my feet on the ground- something I’ve done since I was a kid, twirling my hair (another “stimming” behaviour), slowly sipping my drink…the rest of that period is just a blur.
Then, I received my results: I was “on the spectrum”.
The assessor informed me she could tell within 15 minutes of me entering the room that it was likely. I would receive my official diagnosis in the mail.
So, the hard part was over. I’d made it through one of the most difficult and emotionally charged tests of my life. We got downstairs, out onto the streets of Melbourne and I started to cry, a little at first, then weeping uncontrollably. Bystanders didn’t quite know what to do and my parents, understandably worried, encouraged me into a wheelchair to make the trek back to the train station then on to our accommodation and some much needed rest.
I think this was the first time in my life that I consciously experienced what I’ve come to understand was sensory overload. Of course, I’d experienced it before, but I’d never really understood what was going on in my brain. I remember the ground was uneven, the sound of traffic felt obnoxious, there was a slightly stale smell to the air, and all this time I. Could. Not. Stop. Crying. No matter how hard I tried I sat and sobbed, appalled, and embarrassed that here I was, 27 years-old, being pushed along in a wheelchair sobbing like a 3 year-old.
I don’t remember much of the afternoon, just that I was at a loss for words. Which as anyone who knows me understands, this was shocking as I love to use my words! It was as though I’d slipped behind the crashing, tumbling waves of the ocean to a place where the water was calm. The water I was floating in was gentle, but the current and ripples of the sea remained, reminding me of the ever-present danger that I could be dragged back amongst the turbulent sea of sensory overload at any moment.
Gone was the talkative, vivacious, and stubbornly determined disposition I presented to the world most days - my outer shell as it were. Instead, I had gone into what I would now identify as an autistic shutdown: a complete dulling of sensory behaviour and lack of cognitive or mental reaction to the outside world, usually brought on by stress and/or sensory overload.
There were certain words echoing around my brain, over and over, bouncing around like a tennis ball.
“You are BROKEN!” It said
“You have a BROKEN brain!”
“There is something WRONG with you!” It shouted.
The whispers I’d felt for months, and years beforehand were exploding.
You are different, it said, as though that was some sort of lifelong curse.
You are worth less than others, it nagged.
Around and around and around and around and around.
I wish I’d understood that what I possessed was a unique and profound skill to see the world in a way others didn’t. And that this, along with so many other ‘autistic traits’ I possess, is a gift, not a curse.
My first belief, after being diagnosed with ASD, was that I was broken. I wish I’d known then what I know now about how the autistic brain works. I wish I’d known that my significant talent for photography was because I am autistic, not in spite of it.
In all my years I’d spent countless hours observing, and watching the world around me. I noticed the glistening colours of lanterns despite the pouring rain one rainy night in Hoi An City, Vietnam, with the lantern maker sitting patiently in the storefront seemingly oblivious to the cacophony of activity happening around her. Or on another occasion, I endured the perplexed looks of others watching me taking photos of a singular muddy puddle on the walkway, so many people overlooked the subtle but stunning beauty of the Ferris Wheel reflected back at me, noticeable only if you stopped for a second to take in the surroundings.
Or my peers laughing at me when I disappeared from conversation and grabbed my camera, at 10.30 at night, to capture the heavy shroud of fog that blanketed the university campus one winter's night.
My attention to detail became my lens as I was trying desperately to understand, in a world where for everyone else things seemed to just make sense.
I wish I’d understood that what I possessed was a unique and profound skill to see the world in a way others didn’t. And that this, along with so many other ‘autistic traits’ I possess, is a gift, not a curse.
I wish I could tell the 27-year-old me who, by that stage had battled an eating disorder, psychosis, and paralysing anxiety, and who a few months later would undertake a serious but failed attempt at suicide (before realising just how valuable both her life and brain was and is). I wish I could tell that version of me that she was not broken!
Is it really a surprise that I felt so broken by then?
Embracing a diagnosis of being on the Autism Spectrum is not something that came easily to me. But slowly, over time I am learning to embrace my quirks of personality and realise that I am the same me as I have always been.
I had, all my life, internalised this sense that I was different but could never quite articulate how or why. Now I knew, but it came at the expense of countless instances of being overlooked, struggling through education and workplace situations that asked me- the square peg- to fit in the round hole. I was told continuously that I was capable of more and that I wasn’t ‘living up to my potential’. I experienced social isolation from my peers and even bullying and micro-aggression, some of which I assumed to be so normal that I never questioned them. It was only in hindsight I was able to see the full extent of how damaging my experiences were.
So, is it so shocking that I undervalued myself so much?
I can assure you that I am not the only one who has experienced this feeling either. Girls and women are significantly less likely than boys to be diagnosed with autism. According to Amaze Victoria, there is a 3:1 ratio of women diagnosed with autism compared to boys. They, and many others, now acknowledge that even these numbers likely underrepresent the true numbers of women with ASD. Women and girls present differently than boys and show traits such as masking (acting or mimicking the behaviour of others to fit in) and are more nuanced in their social development. As such, we do not always fit the predetermined profiles of current screening and diagnostic tools and due to our difference in characteristics we are missed, or even dismissed, by doctors, psychologists and even families who overlook the diagnosis.
For too many, it is not until adulthood, or perhaps even until a woman becomes a mother and finds out that a child of their own is on the spectrum that they finally seek out or receive the correct diagnosis themselves.
Embracing a diagnosis of being on the Autism Spectrum is not something that came easily to me. But slowly, over time I am learning to embrace my quirks of personality and realise that I am the same me as I have always been. The ability to teach myself skills, my hyper-focus, the ability to articulate myself, the certain sense of fearless ambition (albeit hidden under a thick layer of anxiety), and my unusual, lateral thinking do not make me broken, wrong or worthless, but rather they are what make me, me! They are my colossi in life. They are the very things that make me thrive!
I often ponder whether having been diagnosed earlier with autism would have changed the trajectory of my life, or helped me avoid some of the trauma and mental health battles I’ve faced. I suspect it would have, but then again, I wouldn’t be the person I am today had I not endured those battles.
This year I launched a business as a photographer and visual artist. Art for me is so often my peace and solace. Those quiet moments of creative achievement have helped guide me through some of the darkest days and taught me that I can find beauty even in the dark moments, the broken moments, the times I’ve felt hopeless and downtrodden.
I’ve found that art, and photography especially, forces me to focus on things that are good, beautiful, and interesting. The motto I’ve learnt to live by is that when life gets difficult it’s possible to find beauty in the broken places and in turn, when things are good again, I am reminded that there is beauty around us, always. Personally, I am rarely more at peace than when I have a camera, or sketchbook, in my hands.
Nowadays I consider myself Autism Positive. I acknowledge that yes, I am different, but I am not less! I am inherently divergent in mind from the general population, but that is something I embrace. I use my abilities and characteristics in such a way that I set myself up for success instead of failure, and I seek to encourage other autistic women to see themselves as valuable members of society and not to let anyone tell them they are unworthy.
We are all valuable, unique, and beautiful! Hopefully we can become empowered women if we learn to take our broken pasts and turn them into the catalyst that propels us forth to become proudly and unabashedly authentic women, who, it just so happens, also have autism.
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