How Sensory Overload Feels When You’re Autistic
It’s hard being Autistic in a noisy and bright world
Mind Games
It’s hard being Autistic in a noisy and bright world
The lights in the courtyard are burning much brighter than before. Our building’s maintenance guy must have been told to switch them out. There have been problems with people smoking by the doors, leaving their cigarette butts in the grass overnight. Maybe the lights were changed in hopes of making the area less inviting to the smokers. The bulbs used to give off a soft yellow glow that the Venetian blinds of our bedroom could almost block out. But now the light is cold, clinical, and painful to take in. I only just noticed, but I’m furious about it already.
I jam my eyes shut and roll over, turning my face to the wall. The light casts a cool bright rectangle across the wall and the bookcase. As my vision adjusts, it starts to seem like the whole room is bathed in bright light. I huff with frustration and press my face to the pillow. My partner asks me what is wrong, though he knows, and knows he can’t fix it.
My head already feels tense from trying to jam my eyes shut so forcefully. The nerves are worming themselves tighter and tighter around my forehead and my temples, the veins thudding angrily with blood. There is no escaping this, no willing myself to ignore it. I have no control over it, this thing that’s unwittingly been done to me.
Later, I will go out into the courtyard to look at the fresh, bright bulbs and find that they’re encased in small protective cages. I can’t shatter them and I can’t unscrew them. I will search the whole building for a light switch and never find it because it must be hidden behind some locked door.
I could call the main office and complain, but they won’t understand it. How could a light hurt somebody? They won’t change a thing. I am the one who is unreasonable, too sensitive, bordering on crazy with how bothered I am by these harmless little bulbs.
There is no escaping this, no willing myself to ignore it. I have no control over it, this thing that’s unwittingly been done to me.
So I have to flop back and forth, covering my eyes and trying to breathe deeply. I have to buy black-out curtains, and CBD to help me sleep. And I have to do all of this apologetically, and with embarrassment, because I am a needy, overstimulated baby, and it’s my fault that I am like this because I should just get over it, as everyone else does.
I cover my head with a pillow. I cover the pillow with a blanket. I try not to think about how frustrated I am, but my mind’s already stuck. It’s going to be a long night.
I am Autistic, though I didn’t discover that until well into adulthood. After a relative was diagnosed, I went digging to learn more about the condition. When I read that Autistic people are often sensitive to bright lights, tight clothing, and inconsistent, unpredictable sounds, I started to suspect I was a member of the club. When I listened to Autistic adults describe the panic and pain that intense sensory input caused them, I recognized myself.
I was forever getting infuriated by stimuli that other people told me was nothing more than easy-to-ignore background noise. Two women cackling in the corner of a café while trading funny stories. The standard-issue, blazing fluorescent lights in an office. The stink of a Lean Cuisine in the communal microwave. Every time I went out into the world, I did so hoping I wouldn’t encounter these beacons of pain; every time I was sorely disappointed because that is simply what the world is like.
The walk to the bus is blessedly calm. It’s midwinter and midmorning and the day’s first surge of commuters is long gone already. Snow is falling sleepily onto the sidewalk. On Sheridan Road, cars rush by in the slush, but the sound is rhythmic and predictable, so it is calming. I wait for the bus at the corner and there’s only one other person there. They are rocking on their heels in a gentle, calming way. I pop my earbuds in and let synthy, pulsating music massage my brain into a deeper state of calm.
And then the bus comes, which is good, because I have places to be, but it’s also terrible because it’s full of people. Standing room only. I push my way in, nestle uncomfortably between a few parka-clad bodies. Beside me, a woman is yelling into her phone, which is on speaker. The sound crackles and her voice is hoarse and somehow neither person on the call ever stops talking to listen to the other. Each rise and fall in volume causes my body’s cortisol to spike.
The bus visits another stop, then another, and more bodies crowd on. Someone reeks of musky perfume. A young person, probably an intern at Grubhub or some other miserable Loop-based company, is digging around in a bag of makeup looking for a specific eyeliner. They can’t seem to find it. The pencils and compacts and pots of eye shadow all clack against each other over and over again while they look.
It’s a small sound but it grates on my nerves and commingles with the sound of the woman on the phone and the crackle of the speaker and the squeaking of the bus and the coughing of the man in the back who is too sick to be going to work. Plus I’m getting hot now, standing in my thick winter jacket below the heat vent of the bus, packed in alongside all these bodies. Someone’s backpack keeps bumping against my ass and another person’s foot keeps grazing my leg.
These are normal, everyday encounters. I’d be perturbed by even one of them by themselves. Together, they all grow and grow into a conflagration in my mind. When I arrive at work I’m nauseated and on the verge of tears, and I have to hide beneath my desk for a few minutes before getting to my emails.
Other people seem able to adjust to these low-grade annoyances. They might remark about a sour smell or a patch of bad lighting, but once they get settled in, their brains let them forget it. This process is called sensory adaptation, and Autistic brains don’t experience it the way non-Autistic people do. For me, a few moments of exposure is tolerable, like having my hand dipped briefly in an ice bath. But the longer I am exposed to upsetting sensory input, the more painful I find it. Eventually, my functioning starts to break down.
Sensory overload is what happens when an Autistic person is exposed to too much intense sensory input for too long. During an overload, anxiety levels spike and the Autistic person may appear to be on the verge of a panic attack. Their breathing will often become rapid and clipped. It will be much harder for them to engage in already-difficult social tasks, like making eye contact or participating in small talk. They may come across as distant or tense and short-tempered. They may want to hit themselves. They may cry.
How I react to sensory overload depends on where I am. If I’m in public, I withdraw into myself. Squint my eyes, furrow my brow, and try desperately and hopelessly to ignore whatever is causing me pain. I may stare at the floor, checking out of reality, or my gaze may dart around frantically, seeking some kind of escape. I sigh a lot, in a pissed-off seeming way, trying to regulate my breathing but failing spectacularly. I’ll try to rush out of the painful setting as soon as I can, and if someone blocks me from fleeing, I will get angry with them, though I’ll try to hide it.
I have to downplay the full intensity of my reactions because people consider them inappropriate and immature. There is no greater social crime than being a needy, fussy baby at age 31. When I’m going through a sensory overload around other people, my major task is trying to survive it while also obscuring it. In private, my meltdowns are worse but more honest.
The workday goes by in a haze, a few hours of meetings and a few hours of writing. One co-worker is frustratingly loud, but I have tried all day to be patient with her. I’ve also made the mistake of wearing my tightest pants today, and their pressure against my stomach grates on me as the hours go by. When the day is done, there’s another bus ride home. It’s worse than the one in the morning. It’s Friday and everyone is desperate to get home. By the time I get off the bus and walk into my apartment, I am a tangle of frayed nerves.
I sit down on the couch and try to unwind, but then there’s a repetitive yet erratic sound rattling above me. The ceiling is thin and my upstairs neighbor does all kinds of strange things to her floor. She walks around in thick boots and vacuums at all hours. Her cat sprints around late at night and knocks things off of shelves. Sometimes it sounds as though bowling balls and ceramic dolls are all being flung on the floor all at once.
I try to ignore the sounds for a moment, try to push them out of my awareness, but it has been a long day and I’ve spent nearly all of it fighting off my natural reactions. Another strange crash rains down from above and I bolt up, into a standing position, fling my arms into the air and groan theatrically.
“What the fuck is that sound?” I ask my partner who is in the kitchen making macaroni and cheese. “What the fuck could that even be?”
He shrugs helplessly. We have speculated about these sounds many times, and will never know the meaning behind them.
“Seriously, what the fuck is she doing?” I say, pacing the living room now, working myself into more of a frenzy. “It’s a small apartment, how long could it possibly take her to clean it? Or to unpack her stuff? Is that what she’s doing? Unpacking? Still? She’s been here for months! Is she working out? Did she drop a kettlebell? Five times in a minute?”
He has no answer because there is none. I exhale and curl up into a little ball of anger on the couch. There is another thunking sound above my head.
“What the fuck are you doing up there?” I yell at the ceiling. Then I apologize to my partner for the yelling. I’m still visibly furious so it doesn’t really help.
I stomp into the bedroom, turn on some music, and shut the door. But there is a couple with a toddler out in the courtyard, talking and laughing and throwing snowballs around. There is an ambulance down the street, blaring its sirens as it attempts to save some poor soul. Two stories up someone is practicing the flute. Each one stabs at me, twists its blades in my brain.
I go into the kitchen, grab a few ice cubes and fling them out our back door, just so I can feel something shatter and break.
I throw open the bedroom door. “What the fuckkk,” I scream, truly unhinged now, “Why is the world so loud?” I will have to make amends for being a maniac later, but right now I am beyond reaching. I go into the bathroom and yell into a towel. I go into the kitchen, grab a few ice cubes and fling them out our back door, just so I can feel something shatter and break. I find a private corner of the apartment and hit myself a few times on the upper thighs until the pain sends endorphins shooting up my body. I’m desperate for anything that will calm my white-hot enraged mind.
When I break down like this, people think I’m being a total baby. And I guess they’re kind of correct. Babies are famously sensitive to intense stimuli. They cry when they are overwhelmed by noise, bright lights, and fast activity. Their little brains can’t filter things out. They don’t know how to distinguish between meaningful input and background. They can’t take all the disparate pieces of data and combine them into a logical whole.
The womb is a quiet, dark, and warm place. Amniotic fluid provides a comforting buffer between the developing human and the sensory assaults of the outside world. When an infant is born, it is suddenly thrust into chaos, and it reacts by being really confused and distressed and pissed off. It takes years for their sensory cortex to adjust to the intensity.
Some people are assholes to babies for this. They don’t pause to consider what the baby’s terrifying and psychedelic experience of reality is. So they call them difficult or fussy, or withdraw their affection, leaving them to cry for a long time. They might even joke about how delicate the baby’s sensibilities are, laying the groundwork for the years of invalidation and shaming to come.
This strikes me as oblivious and cruel. But I also understand it. I find the squalling of an infant to be absolutely maddening. I know the baby is going through the exact same kind of sensory freak-outs that I experience, only even worse, and without the benefit of understanding, yet in the heat of the moment I struggle to have sympathy. I just want them to shut up. I know they can’t, I know that they are wailing because they’re in acute pain, but their expression is putting me in pain too, and in my selfishness, all I want is for it to end.
I used to mistake my sensory issues for just being a grumpy bastard. I was often overwhelmed by crowds, hated being in loud, celebratory spaces, and loathed events where there were lots of children. That seemed to mean I was an antisocial, bitter monster. Now I realize I was suffering from repeated sensory overloads, but lacked the language for it.
I try to temper how and when I ask for accommodations, but I am still perceived as too needy and too annoying, because the way my brain works is not how people want it to work.
I often am left feeling broken for having the reactions I do. Sometimes my partner gets sick of my seemingly oversized annoyance at small sounds, and my impatient need to flee a space that’s too hot or too crowded as soon as humanly possible. This Thanksgiving, when I asked a relative to turn down the lights, they walked away from me muttering about how I was overreacting.
I try to be reasonable, I try to temper how and when I ask for accommodations, but I am still perceived as too needy and too annoying because the way my brain works is not how people want it to work. I wish I could make them understand that I’m not happy with how it works either. Whenever I do try to modify my environment, it’s to spare myself and everyone else the much larger meltdowns that might otherwise result.
The freak-out has passed its high point and begun to wane, so I go to my partner and complain, more calmly, about how desperate I am to find peace. I lean up against him and sigh with sadness rather than fury. I am exhausted by my own shit. I wish I could escape being this way.
He doesn’t always know what to do, but he does want to make me happy. This time, he has a pretty good idea of how. He drapes a blanket over the side of the bed, creating a curtain that reaches to the floor. On his computer and on my computer, he plays videos of white noise. I play white noise on my phone, too. Together the three devices create a reliable, rushing soundscape that helps drown out everything else.
I crawl under the bed and hide behind the blanket. He turns off the bedroom light. The oven’s clock gives off a blue glow that shines into the bedroom and sometimes bothers me; he blots it out by covering it with an oven mitt. Little gestures like that make me feel loved, and remind me that the entire world is not hostile and menacing.
I stay there in the dark and the din for a while until my breathing slows and my mind’s spikes and barbs flatten into smooth curves. I can feel the anxiety radiating out of me, my muscles starting to go pleasantly slack. I wish I could carry this black, still space with me all the time, a box that I could escape into whenever the world got too intense. It’s an oasis of safety in a world I can’t regulate. A tender reminder that someone in my life is at least trying to understand.
Want to make life a little more comfortable for your Autistic friends and loved ones? I recommend checking out the Autistic Self-Advocacy Network’s brief Accessibility Guide.