Unmasking Autism
Poet Jason Conway on living a creative life after his autism diagnosis
Life is a ball until the mask falls
In December 2023, I was diagnosed with autism. That was when the mask metaphorically fell to the floor.
In the summer of 2022, I was commissioned as a poet for the Stoke on Trent Neurodiversity Umbrella Project. My commission was to write a poem to commemorate the festival and run poetry workshops with school children. Through my research into neurodivergence, I realised that I shared a number of traits associated with autism. And, over the six months following the festival, I became certain that I was autistic, which led to seeking an assessment in May 2023.
For a number of years, I’d been struggling with my health, which I put down to the strains of my father diagnosed with a terminal illness, a brother having a breakdown, and the terrible stress that my mother was under. I later discovered that autistic people are more susceptible to developing mental and physical health issues due to traumatic events, as well as the constant pressure of being different in a neurotypical world. Neurodivergent people mask their differences in order to fit in. My masking resulted in exhaustion, nausea, anxiety around travel and being with groups of people, finding it impossible to read or concentrate because of external noise, cancelling commitments due to stress, waking up tired every morning, and random but regular body pain.
Autism typically presents itself in children from the age of two and they quickly learn to mimic the behaviour of others. I was fifty when I discovered I may be autistic. Five decades of suppressing my natural behaviour had been a slow drain until there was no extra energy reserve to hold my sense of self together. Parts of who I thought I was were just stitched on to suit the world around me. A Frankenstein of expectations that were starving me of oxygen.
the puzzle of unmasking
I was going through what’s known as autistic burnout. Think of this as a kettle being boiled. The water inside is calm until agitated. As the temperature rises, the water bubbles until it boils, releases steam and the kettle whistles. My everyday pressures had been taking their toll, until a series of traumatic events triggered burnout.
In 2021, I applied for a Master’s Degree in creative writing, something I’d thought about doing for a few years. My father was in a nursing home receiving end of life care, at the time, which was the incentive I needed to apply. He loved the idea that I would be the first in the family history to do an MA. I gained a place at Bath Spa University and loved every single moment of my studies. The intensive reading and critique of set texts (novels and poetry collections) was demanding but incredibly rewarding. Meeting people with a shared passion for writing, both prose and poetry, resulted in new friends, accountability and peer support. All under the laser focus of expert tutors. I’d given myself permission to be blissfully lost in words. It was the fibre that kept me together.
The graduation ceremony, in January 2023, was a surreal experience. I remember feeling a bit odd, as though I wasn’t quite present. My skin felt slightly numb and my breath was heavy. The lighting was too vivid. Conversations in the room tugged my ears for attention. When called to the stage, my legs felt light as though I was gliding. The sea of faces became a wall of eyes demanding eye contact. I drew a gargantuan breath of relief when the event was over and I left the building. Gravity returned to normal.
There has been a sharp rise in autism diagnoses over the past few years. The same applies to ADHD, which I’m awaiting an assessment for. The two present often conflicting traits like needing order but finding it difficult to follow schedules.
I was diagnosed aged fifty-two and became part of the one percent of the UK Autistic population. Four percent have ADHD. Autism and ADHD are under the umbrella term of ASD, Autistm Spectrum Disorder. I was now categorised as being both disabled and having a disorder. Labels that are negative. But amongst the neurodiverse communities I interact with, the preferred word is ‘difference’, as we have neurological differences that make us react and interact differently.
I’ve learned that I thrive doing what I love and suffer when I don’t. To take care of my wellbeing. To shed the guilt of saying no. That small talk feels like being trapped in a panic room. That creativity is hardwired into my DNA. The sounds that licence plates make is fascinating. That not everyone can smell the onset of rain. That I am different but not alone. I’ve also learned of many barriers that neurodivergent people face, including the inaccuracy of stereotypes, stigma, bullying, dismissal, the harms of of masking, and the lack of understanding of our differences. One such preconception is that autistic people aren’t creative but analytical. However, in reality, each autistic person has a unique set of traits. I’ve had a career being creative, have been successful academically, and am a published poet, I’m living proof that stereotypes need to be dismantled to create better understanding and social acceptance.
This isn’t all negative, far from it. I embrace who I am and have many strengths that are part of my neurodivergence, such as creativity, intense periods of focus, daydreaming, problem solving, a strong moral compass and a deep passion for nature.
Earlier this year, I was accepted onto a twelve month development programmed for South West writers, called Word Space, run by Literature Works. As part of this, I am also under the wing of Dialect, who are partnered with the organisation. My goal during this programme is to produce a full-length poetry manuscript that raises awareness of AuDHD (a collective term for autistic people that also have ADHD) from my lived experience, but also inspires other neurodivergent people to embrace creativity as a way to express themselves, as poetry has been transformative for me.
I am learning to understand myself better, unpacking what it means to be AuDHD, making lifestyle adjustments, and exploring how I can benefit others in a positive way. I still wear my masks, from time to time, but I now wear them with the knowledge of why I use them, when to take them off, and how to recover from the stresses they carry. I embrace and celebrate my differences. I want society to do the same.
'Wired' by Jason Conway, first published in The Phare Summer 2024
Jason Conway is a professional daydreamer based in Stroud, Gloucestershire. He is director of the Gloucestershire Poetry Society and founder and editor of Steel Jackdaw magazine. His poetry is published in Poetry Bus, The Poetry Village, Impspired, Wildfire Words, Dreich, Fevers of the Mind, Ink Sweat and Tears, and on BBC Upload. He has an MA in Creative Writing from Bath Spa University, and is an Arts Council funded poet.
Professionally, he is a multidisciplinary freelance creative. For the Word Space programme, he’ll be producing a full length manuscript about Autism and ADHD, from his lived experience of neurodivergence. When he’s not working, he’s immersing himself in nature and loves a cold water swim.
Find Jason online: https://www.thedaydreamacademy.com/jasonconwaypoetry
Jason Conway
