My Experience with Sensory Processing Difficulties as an Autistic Person

“I hate getting caught in the rain,” I said. What I did not say was that each droplet burnt like acid on my skin, that the wind was a hoarse whisper in my ears, or that I pinned my arms behind my back to stop myself from covering them. I failed to mention the way my clothes felt unbearably heavy when wet, how the tags became blunt razorblades. The usual soft-knit sleeves wrapped around my arms like boa constrictors, endlessly coiling and tightening. The wince I made was audible.

“You’re so dramatic,” my classmate complained. “It’s only rain!” But it was not only rain. It was the smoke of cigarettes in the bus shelter that stopped me from breathing. It was the sickening aftertaste of sweetened black coffee since the barista had given me the wrong cup two hours prior. It was the artificial glare of advertising screens that I could not stop staring at. And it was the noise. Always the noise. Car engines and magpies and school kids and text tones and voices—so many voices—ones that changed pitch and speed and spoke over and over and over each other. 

Instantly, I was hit with what felt like the worst hangover of my life, though I had not been drinking. I had simply spent too much time in a new, busy place. To me, sensory processing difficulty is the most debilitating aspect of my autistic experience. It hits when I least expect it, despite any level of caution that I maintain. 

My childhood paediatrician concluded that I could not be autistic because I was social and talkative. I was captain of my high school debating team; remained poised and delivered my arguments with strategic levels of eye contact and interactivity. An autistic person could not do that, she thought. I attended concerts, parties, festivals, conventions—and enjoyed them. How could a person that flinched at the sound of AM radio scream along to post-hardcore until their ears rang? How could someone who was unable to look at a computer screen for an extended period of time bathe in the flashing lights and let the smoke machine suspend all life in the cool embrace of metallic fog? What I did not relate to her were the days prior spent in bed with the curtains drawn, bracing myself for the night to come. What she failed to see was the way my mind took a beating afterwards, how the shutdown hit me all at once the moment I arrived home. The talons of a tidal wave abrading my lungs with salt and spitting me back out onto the shore as I spluttered and shook; still grateful for the ten seconds I spent atop it, surfing above it all in the light of the heavens. 

I met my partner, Luce, at one such festival. Together we sauntered through the throng of people, intoxicated by the buzz of a collective excitement, the thrill of dancing with a stranger.

I left the scene earlier than I would have liked, but my friend Alex, another autistic person with whom I had arrived, had hit their breaking point quicker than anticipated. I thought that I could have gone on forever: energised by the aura of the place, dazzled by the costumes, and entranced by the live voices leaking into the distant grey of a bustling cityscape.

“I’m getting tired,” they had said. I had known then, without needing to ask, of the hyperawareness beginning to consume them, of the looming threat of some great shutdown. We left at a moments’ notice, an unspoken agreement between the two of us to look out for one another. It was on the bus home that I had begun to feel as they had, like a great invisible hand reaching into my mind and squeezing, turning my cheek towards the window as tiny hail stones hurled themselves downwards in mockery. I was hyperaware then, of the thin layer of sweat corroding my caked face. The soft seat pressed against my back like a clump of stinging nettles. I teetered on its precipice as we rattled into the suburbs. Sometimes, you do not realise how tired you are until you stop running. 

My brain ‘shutdown’ that afternoon. I like to think of it as part of the healing process, like unwinding sore muscles after a workout. The bathroom where it happened was cool and smooth—devoid of sound and colour, texture and smell. It was here that I lay with my head tucked into my lap, with all the lethargy of a shedding snake. The mirrors were not unwelcome. Neither were the windows which bathed my undressed figure in natural light. A place of unravelling. I reached up to turn on the showerhead but could not command my limbs to wash myself. Instead, my body trembled as the water cascaded over me. Hands grasped at fistfuls of hair, eyelids fused like antique shutters, cheek bleeding as I bit down on it. I let my breath go, unaware that I was holding it, and sucked in the oxygen as if it were scarce. I focused on Luce – the images of them that flittered through my head like frames in an old camera. The way their gentle smile had reached their eyes and the way their eyes had reached mine. Their long hair, draped over their right shoulder as one might an old curtain over an armchair. Their small frame, their imposing presence. Little did I know they were engaging in the same process; there is not one way to ‘look’ autistic.

“Sometimes I can feel it coming on, sometimes I’m fine until suddenly I’m crying and struggling to communicate.” Luce tells me. “It’s often debilitating. I need to leave places suddenly not because I’m bored or simply don’t want to be in that environment, but because if I stay there much longer, I will completely shut down and struggle to do anything for days.”

In spite of the stereotypes, every autistic person is different in action and reaction. Luce likes dim lights; I need them to be at full brightness or not on at all. Luce becomes temporarily non-verbal when they shut down but likes listening to me talk; I can talk in the same situation but cannot process voices. For some, sensory overload is rare. For others, it looms at the threshold of every evening.

A family member once asked me, “Why would you want an autism diagnosis? Why would you welcome that label?” He thought it would be better if I had gone my life without knowing, unbranded by the white-hot seal of stigma. What I failed to articulate then, is that the brand hurts less than the voice it silenced. A constant nagging in the back of my skull, claiming that something was wrong with me; an ever-present and invisible flaw that saw me move through life at a fatally slower pace. It is a morbid comfort to know that one is not alone in their suffering. The real reward is knowing—genuinely knowing—that there are a community of people who develop their own strategies, fight for allowances to be made, and truly, unapologetically know themselves and their minds. It is because of this diagnosis that I can go through the motions. This was not my first experience of an all-consuming hyperawareness, sensory overload, or the catatonic state of shutdown. It will not be my last. It stalks me in the shopping centre, lurches in construction sites, and waits patiently in other people’s houses. I know now, where it will find me. I know what to avoid and when to avoid it, and I know how to recover when it attacks. I know how to look after myself and when to let other people look after me. I know that I am not broken, that I was never broken. I simply live in a world that was not designed for people like me, and I recognise the strength it takes to live in it anyway. I know now that existence is resistance.

Recently, I have decided to be open about my autism in order to take the power away from the professionals who spent so much time trying to teach me to hide it. It is frightening, but I am committed to it. Often, I am worried that I will be infantilised the way so many autistic people are, denied opportunities of employment or study, or even treated as sub-human simply for the way my brain processes information.  Those of us who can ‘mask’ our autism are faced with an impossible situation: disclose our disorder to others and receive meaningful daily assistance whilst facing the threat of discrimination or suffer in silence for the privilege of taking part in neurotypical society. This is a daunting ultimatum, though we do not have to face it alone. I encourage all autistic folks at this crossroads to connect with their autistic community. There are elders who will advocate for you, peers that will support you, and perhaps even friends to help shoulder the burden.