My skin and crawling and I must scream.

I unwrap the plastic liner of the katsu-don from 7-11, and the adhesive shrieks as it tears away from the styrofoam bowl. Ow. I place the bowl in the microwave and accidentally slam the door shut, sending my ears ringing. Ow! A few minutes later, the microwave announces it has finished its work, goring my ears in the process. Jesus Christ, this food isn’t worth all of this!

Oh, sensory sensitivities, how I loathe thee. You can make even the most basic of tasks feel like a herculean effort of endurance.

“All that noise doesn’t bother you?”

“No.” 

“It’s really loud, though.”

“I dunno, I think it’s fine.”

. . .

“God, the light in here is so bright.”

“Yeah, I guess so.”

“But, like, it kinda hurts my eyes.”

“Well, it doesn’t bother me!”

These conversations are all-too-familiar for Autistic people. Our sensitivities are routinely downplayed, ignored, and invalidated. We are regularly required to be in environments that are extremely uncomfortable for us, with no accommodations offered. If no one else is bothered by these things, we must be making it up, right?

Well, after years of invalidation, that’s exactly what I thought. I was being dramatic: the noise isn’t that bad. I was too sensitive: everyone else goes about their day in the same environment I do, and they make things work.

My sensitivity to noise was one of the first things that tipped me off to the possibility that I am Autistic. While I was busy trying to figure out my feelings toward statements like “I notice patterns in things all the time” or “I find it easy to work out what someone is thinking or feeling just by looking at their face,” I was confident in my auditory sensitivities.¹ They are something that has plagued me for my entire life, and Autism finally offered an explanation for it. Perhaps I wasn’t actually dramatic and overly sensitive as some people had insinuated…

The horror house

The pandemic forced my final university semester entirely online. It was the spring break that never ended: Instead of returning to campus a week later, I moved nine hours away back with my family, where I remained for a couple of years. Living at home was an absolute nightmare. I had significantly less privacy, which meant I was constantly being perceived, so I was masking all the time. It was also loud: my family members are all musicians with big, noisy instruments. The string bass wasn’t too bad, as my noise-cancelling headphones could cancel out its lower frequencies. The saxophone was at least an instrument I quite enjoyed on its own, and it was usually played in a corner of the house that allowed the least amount of sound to escape.

Then, there was the trumpet, which was played for hours a day. Imagine what a trumpet sounds like in an echo-y space, then imagine it three times louder. I’m pretty sure it could cause hearing loss. It’s certainly loud enough to make one feel like they’re losing their mind.

The trumpet wasn’t the worst of it, though. The TV was on from the early morning to well beyond midnight, and the volume up so loud people had to shout to attempt to have a conversation. The home theatre setup that my father adored, I quickly grew to despise as its subwoofers shook and rattled the house at all hours of the day…and night. Most days the TV dictated when I woke up and when I could sleep. There was nowhere in the house one could go to escape its disturbance. Hard surfaces were everywhere, and the walls were paper-thin. The soundscape of the house was an orgy of deafening horns and bass-y thumps and rattles, rarely ever stopping for a break.

When I purchased ear plugs so I could try to sleep at night, independent of the TV’s whims, I was met with offense and accusations that I was lying. 

“You bought those to wear while I play my trumpet, didn’t you?”

“No, I bought them because the TV is so loud I can’t sleep at night.”

“That’s not true. You hate my trumpet playing!”

I didn’t hate your trumpet, but boy, did I hate your attitude.

I brought up the egregious noise with other family members, hoping they would be more sympathetic. My concerns were mostly met with indifference. They’d agree that the house was loud, but were rather blasé about it: “It’s loud, but what can you do?”

I felt like I was going mad. I was in a state of perpetual aggravation and I couldn’t relax because I was always on my guard. The ever-present noise felt like actual violence, the constant state of being perceived made me feel like I was always one step away from being reprimanded, and the callous response from my family members whenever I tried to express my discomfort only harbored resentment. I felt wildly unsafe because I was in an environment hostile to me, without a space safe to retreat to.

No one seemed bothered by what was happening, except for me. So what the fuck was my problem?²

These days, I have my own space. I live alone, so I never have to worry about others perceiving me and I can drop my mask. My apartment is mostly quiet. Sometimes the neighbors get a little rowdy on the weekends, and I used to have issues with wind gusts rattling an exhaust flap to the outside world (why Japanese apartments have these, I’m not sure), but a bit of duct tape fixed that. Ultimately, these are small annoyances. The important thing is I have my safe space to return to each day, which is pretty vital because my workplace isn’t especially friendly to someone with sensory sensitivities…

A slice of life

Squeals, cheers, and roars reverberate through the halls. Fluorescent light fills the rooms, oppressing from above. The scraping of desks and chairs against the floor grate on my ears. Blackboards are still standard here, and good god I despise the feeling of chalk dust on my skin. Signs, posters, and notices coat the walls, forming a kind of crude wallpaper; a potpourri of visual stimuli that is quite overwhelming on days when I hold few “spoons.”

I love interacting with my students, but some days I wish I could leave and never step foot inside the school’s walls ever again.

Once the day’s classes end, I hop on my bike and pedal home. On a good day, the roads are empty and the air is perfectly still, but it’s usually not a good day. Cars whizz past like miniature sonic booms. The wind rages and howls, belting its anger into my ears and pummeling my face until I’m at the verge of tears.

Eventually, I arrive at my destination. I climb the steps to my apartment, fumble with my keys, unlock the door and rush inside, locking the door behind me. I’m safe, I think. I remove my jacket, set down my backpack, then lay upon my futon and stare at the ceiling. The consequences of masking all day in an unpleasant environment bubble to the surface: I lay there for a while—an hour, maybe two—completely still and totally silent, until my brain starts to resume function again.

Then, I check the kitchen and realize I have nothing for dinner, so I must venture back out into the wild. Panic sets in. Here we go again.

Overstimulation

Shrill noises, bright lights, unwanted touch, and uncomfortable textures—in isolation, these are mere annoyances. I can handle being in a room lit entirely by overhead lights, and I can handle being around the occasional screaming child. But when these things are combined or I’m forced to endure them over and over again, I become overstimulated: My brain’s thoughts become a jumbled mess and I can’t think straight. Noises seem to grow louder, lights seem to get brighter, and textures seem to grow harsher each second. Everything goes from mildly irritating to unbearable as my vision begins to blur, my skin feels like it’s crawling, and I get a strong urge to stim, stim, stim. I want to scream because everything just feels wrong.

If I’m really lucky, all of that overwhelming sensory input leads to anxiety and panic. Double whammy!

It’s ironic—and slightly defeating—that sensory sensitivities are so frequently sidelined because I think they’re the easiest Autistic trait to understand. While an allistic person may have difficulty understanding why a small change could completely upset our entire being, or why certain things seem to go over our heads, we have our senses in common. Everyone can relate to a particular sense being too intense on occasion. While I can understand that such discomforts extend much further for Autistics, it doesn’t seem like it should be too big a mental leap to accept that sensory experiences can be more (or less) intense for some people. But I digress.³

The Gym Tyrant and how invalidation creates internalized ableism

In the seventh grade, I had a sadist for a P.E. coach. The Gym Tyrant had a reputation for being mean, cold, and uncaring, so I was terrified when I found out I had been placed in her class.

My fear was justified. She was spiteful, rude, and had zero sympathy for anyone. Why these kinds of people ever enter the education field—and why they’re allowed to hold jobs in it—I’ll never understand. She was a blight on my entire school year, but one specific moment from her class has stuck with me…

On this particular day, we had our P.E. class indoors, which was normally a blessing when faced with the scorching Texas heat waiting outside. Our gym was much like the one found in many middle schools across the States: glossy wooden floors marked up with a dizzying array of lines for various games involving various balls, bright overhead lights illuminating everything in sterile white light, uncomfortable plastic bleachers lined up along the walls, two basketball hoops hanging on either end, and a large scoreboard placed high above for maximum visibility. Today, a volleyball net had been erected in the center of the court. Two team captains were appointed and instructed to pick teams. I hated this part because I was always one of the last to be chosen. No one wanted the awkward kid with poor motor skills on their team. Fair enough! I wouldn’t either if I cared about winning, but it never felt good to be picked last.

Eventually, the teams were decided and thus the period’s activity was begun. I did my best to position myself where the ball wasn’t, so as to avoid the dirty looks I would surely receive upon my inevitable failure to return the ball back over the net.

For whatever reason, on this particular day the Gym Tyrant decided to use the scoreboard’s buzzer instead of her whistle. The whistle was bad enough; I always felt like my entire brain had been shaken whenever I was in close proximity. But the buzzer was an entirely different beast. It was designed to be so loud that it could be easily heard over the screams and chants of two warring factions as they watched a ball get passed around the court. Our P.E. class was certainly nowhere near the size of such an audience, and certainly not as loud, but nonetheless the Gym Tyrant decided it was a good idea to use that goddamn buzzer.

Each time that thing went off, pain shot through my ears. It sucked, but I managed to keep my composure.

However, Aiden wasn’t so lucky.⁴ I watched as he covered his ears and cried in pain each time the buzzer sounded. He pleaded with the Gym Tyrant to stop. She asked him if he had a note from the nurse. He said he didn’t, but the noise was really painful. She didn’t care. He asked if he could leave. She said no.

For the rest of the period, I watched him moan and writhe in pain. I observed the tears roll down his contorted face, as he rocked back-and-forth in place. Bzzzzzzzzzrt! Over and over and over again the buzzer went off, and a cry of agony along with it. I scanned the gym for my classmates’ reactions: They continued on with their ball game, smiling and laughing, as if we weren’t witnessing the torture of one of our peers. They didn’t make fun of Aiden—not during the volleyball game, anyway—instead they refused to acknowledge him. It was a shunning, pure and simple. Complete and total rejection.

I looked on at this display of cruel and unusual punishment and thought, Well, at least I’m not like him.

I didn’t understand what I was seeing. I felt empathy for Aiden, but I didn’t understand why. At the time, I didn’t realize the noise was painful to me, only that I felt negatively when the buzzer went off. I didn’t connect my discomfort and the buzzer’s wails in my mind, and so I retell this memory with over a decade of hindsight.

I was able to maintain my composure to those around me—subconsciously, I must’ve understood the importance of masking—but also gaslight myself into thinking I was unbothered by what was happening. I had to keep up appearances to my peers, as well as myself. If I didn’t buy my own deceit, why would anyone else?

I convinced myself that Aiden was weak, and I was strong.

Obviously, the reality was nothing of the sort. Just because he wasn’t able to mask his pain like I could, didn’t make him any less human than me or any less deserving of sympathy. He wasn’t weak. If anything, he was stronger than me because he dared to say something about the distressing noise, while I didn’t.

I need to take a moment to acknowledge my privilege. While I am Autistic, I am one of the few that can hold a job.⁵ I’m able to live on my own (not easily), and I can repress what I’m feeling until I’m in a place where I can let it all out in private. Not all Autistics are able to do these things; a lot of them aren’t. I’m no stranger to the rejection that is inherent to an Autistic existence, but I also haven’t received near the amount of rejection I would have received if I weren’t able to mask to the degree that I am able to.

I do not intend to take Aiden’s story as my own, or flip it to where I was the prime victim. I use this story as a way to explain the damage caused by invalidation of our sensitivities.⁶ Aiden was forced into a meltdown in front of his peers because the one adult in the room responsible for the well-being of all the kids present decided that his feelings didn’t matter. In her eyes, he was just a cry-baby. Fuck you, get over it.

I can’t imagine the ridicule and alienation he must’ve received as a result of the way he experienced the world. Perhaps the pain of being ostracized was even greater than the pain he felt that day in the gym. I despised school for so many reasons, but I have to imagine it was a living hell for him.

While I wasn’t shunned as a result of the buzzer’s noise, it was a pivotal moment in regard to shaping my internalized ableism. On some level, I recognized that I felt pain similar to Aiden. I watched what happened when one expressed that pain, and it wasn’t pretty. That day reinforced a lesson that has stuck with me well-into adulthood: My feelings aren’t real, aren’t valued, aren’t important. I learned to wholly reject who I am, and resent the person in the mirror.

I’m still haunted by this memory. I’m haunted by the mistreatment of Aiden and my own reaction to it. Whenever I start to feel overstimulated in public, Aiden’s torment flashes before me, a reminder of the consequences of what happens when one “acts Autistic.” I feel shame for having these sensitivities, and I feel shame for not demanding respect of them, for the sake of all Autistics.

Life is hard enough being habitually rejected by one’s peers. It’s only made more difficult when we’re taught to reject ourselves, too.

Sensory sensitivity (self) accommodations

Things are different now. Getting diagnosed was a pivotal moment for me, as I realized that all the invalidation I had been receiving from others and myself was bullshit. In the wake of understanding that I’m not just being dramatic when I feel pained by stimuli, I started to look into ways I could mitigate my sensitivities. I’m still learning the best ways to go about this, but for now, I’ve settled on some go-to strategies.

Of course, the best strategy for dealing with sensory sensitivities is to simply leave the offending environment. If one can avoid stressors entirely, then problem solved. Unfortunately, this often isn’t possible, so here is how I’ve been self-accommodating:

Auditory

For my auditory sensitivities—my main area of difficulty—I utilize three different devices according to the level of disturbance present in the environment:

Level one/baseline: Last year, I was watching Taylor from Mom on the Spectrum when she recommended Flare Calmers for sound sensitivities. I was pretty skeptical—the inserts are completely hollow, how are they supposed to do anything?—but I did a little research and learned they were definitely doing something, so I decided to give them a go. I wore them for a few days and wasn’t especially impressed, until one day I forgot to wear them to work. The Calmers are comfortable enough I usually can’t feel them in my ears, but once at work I immediately realized I must’ve forgotten them because everything sounded so…violent. Since then, I wear my Calmers as a baseline level of protection. The Calmers don’t reduce the volume of the surrounding world, so they’re great when one still needs to be able to hear everything going on (important for a teacher), or when one needs to look like they aren’t wearing anything in their ears (desirable for the Secretly Autistic™).

Level two: The most common hearing device one will likely hear about—pun intended—in Autistic communities are Loops. Specifically, I use the Engage variant, and they’re good for when the Calmers just don’t quite cut it, but I still need to be present and interact with others. They are true ear plugs, so they give that in-your-head sensation when breathing or swallowing, and I find them to be uncomfortable after wearing them for a few hours. However, they reduce the volume of everything around me, but not too much, which is exactly what I need sometimes.

Level three: For the times when I’m alone or it isn’t necessary to be present in the moment, active noise-cancelling (ANC) headphones can’t be beat. I prefer my in-ear AirPods Pro—as opposed to over-ear headphones that are often uncomfortable when paired with glasses—which effectively act as a mute-switch for the world in all-but-the-noisiest of environments. While purchasing a pair of ANC headphones can be rather expensive, the peace they offer more than makes up for the price-to-entry.

Visual

Personally, visual stimulation isn’t enough to overstimulate on its own. It’s also more difficult to accommodate around, if one doesn’t have control over their environment. At home, I never use overhead lighting in living spaces, instead opting for soft, dim, colored lighting that feels comforting and non-threatening. Outside, if it’s an especially bright day, I’ll switch over to my prescription sunglasses. In public spaces, though, there isn’t much I can really do. If lighting is what sends me into overstimulation, then there were other stimuli at play, anyhow.

Touch/textures

I’m very touch-averse, but this doesn’t pose much of an issue for someone living in Japan. The most physical interaction I have with strangers is accidentally bumping into someone in a busy train station. Back in the States, I had to deal with handshakes, fist bumps, high-fives, and touch-y family members; in Japan we bow at a respectable distance from one another and move on with our day. I really wish bowing was standard across the world.

A glimpse into my closet would reveal many copies of the same shirts and pants in two or three colors.⁷ This not only helps me reduce stress in the morning by cutting down on choices I need to make, but also keeps my clothing feeling consistent. I find clothes that are comfortable, without any godforsaken tags or itchy bits, and wear it exclusively. It may not be fashionable, but if it ain’t broke, don’t fix it.

It’s a neurotypical world out there

Since I’ve started to make accommodations for myself, life has become considerably more comfortable (insightful, I know). However, I am highly envious of those that never need such assistance. I wish I could go to places and events, never thinking about what steps I might need to take in order to cope with it all, and if it is a good idea for me to even go in the first place.

Tokyo is, ironically, my favorite place in the world. It’s one of the most overwhelming places I’ve ever been—it can be a bit much even for neurotypical people—but I love it. It’s utterly massive and strangely beautiful, in a very Blade Runner sort of way. Tokyo isn’t so much a place but more like a living organism: dynamic, ever-evolving, constantly changing. It doesn’t matter how many times I wander the streets of Shibuya or the quiet footpaths of Ueno Park; there is always something new to experience. But for all the reasons that I adore the metropolis, it is also incredibly overstimulating to simply be present in. The bright flashing lights, stressful crowds, constant droning of loudspeaker announcements, nauseating smells, mess of advertisements covering everything in sight—it’s as if someone sought to create the least Autistic-friendly place possible. I would love to just be in the middle of everything, but I know if I were to do so it would mean not-so-great things for me. Most of the time, I have to block out the world with music, which is a nice experience in its own right, but I end up missing out on a lot of the exciting hustle-and-bustle.

It’s fun to think about how neurotypical people presumably experience the world. They can…just go places? Do stuff? Without even thinking about it? Without even preparing_for it? _Wild!

All the accommodations in the world do not detract from the fact that the world we have built isn’t designed with neurodivergence in mind. It really sucks to exist as this sensitive being in a world where stimuli are shoved down our throat every second. I suppose this is the reality of Autism as a disability; this is why Autism is a disability. We aren’t disabled by being Autistic, we’re disabled by the world not being for us.

Some days this reality is defeating. Other days, it makes me angry. Most days, though, I’m too exhausted from dealing with the world’s disturbances to feel especially impassioned about it. I’m tired. I feel it in my bones. I possess a fatigue that no amount of sleep or coffee can cure.

I’m just so, so fucking tired.

It isn’t fair. The world is so uncomfortable for us, as is the usual abrasive reaction we get when we try to express what we’re feeling. So, what’s the solution? Ear plugs? Lanyards adorned with sunflowers? These are nice, but just that: nice. We spend a great deal of our time and energy trying to adapt ourselves to the world and those around us, with little-to-no effort reciprocated. The burden of educating others about our disability is placed on our shoulders, even though we’re left with so little energy because of our disability. It isn’t fair.

But of course it isn’t fair. “Fair” and “disability” are diametrically opposed. Hell, “fair” and “life” are antithetical to one another. Autistics are far from the first marginalized group to exist, and we unfortunately won’t be the last. What’s the solution? More education, increased awareness, and further breaking down of stereotypes. With time, the world may one day be a place that truly does celebrate diversity, instead of merely claiming it does so through lip-service. That’s a world I want to live in.

In the meantime, please believe me when I say that noise is hurting me.

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