Ya’ll, I’m frustrated.
I’ve written extensively about auditory sensitivity and hyperacusis on this website. I’ve tried to explain what sensory sensitivities in general feel like. I’ve quoted autistic people on their own experiences of being gaslighted for having sensory sensitivities.
I have a request for non-autistic people, and anyone who does not experience sensory sensitivities:
Treat sensory sensitivities as disabilities and accommodate them as you would for any other person who is in pain.
As someone who experiences many different modes of sensory sensitivities (sound/touch/taste/texture/temperature/motion/glare), I am so tired of society not recognizing these as disabilities.
If you had migraines sitting under fluorescent lights, wouldn’t you want the lights changed or turned off?
If you had migraines with lots of sound around you, wouldn’t you want people to be quieter or to be able to work in a quieter space?
Some autistic people have both sensory sensitivities and migraines along with it! I am lucky that I don’t.
But I fear that when non-autistic people use the term sensory “sensitivities” they think it’s just a little inconvenience or just a slight preference. That really we could “deal with it” and it’d be totally fine if we just didn’t complain so much.
Society Starting Back Up: Back to In-Person Sensory Hell
Although the pandemic is not over, schools and workplaces are starting to meet in-person again.
I received an email today about an in-person get-together for my graduate program. And immediately, I remember the flashback to the last time I went to something like it:
I really wanted to go talk to the people I knew in my program, as I hadn’t seen them in a while, and they’re really nice. I even had my headphones on. I walk into a room filled with at least 20 people, a very tiny room with a low ceiling. I could hear the roar of the conversations from the hallway even before I entered the room. There were just words everywhere around me, almost as if people were shooting bullets into my ears with their conversations, though of course I wasn’t involved in any of them. I grabbed a piece of pizza, sighed, mumbled some curse words even growled, and stood outside in the hallway eating that piece of pizza as fast as I could. Then I went home.
I knew my brain just couldn’t handle it that day. That it wasn’t worth it.
And this kind of event is exactly what I get to go back to. So instead of brooding in frustration at the email I received today, I actually replied to it. I asked if they could have the event in more than one room this year because otherwise it might be sensory overload for me with everyone talking.
The reply, which was not malicious or intending to be mean, was that it was in a larger room this year (I know the room it’s in, it’s not much larger), and that there would “only” be 30 to 40 people in the room at a time. They told me to tell people who I want to talk to to leave the room and go somewhere else, as if I have the neurotypical social suaveness to be able to do that.
No, You Really Cannot Understand
People without auditory sensitivity have absolutely no idea what it really means.
Would that response have happened if I said that I was Deaf or Hard of Hearing and needed a sign language interpreter? (to be fair, it might because academia is awful sometimes, but still..). Why isn’t my disability seen in the same way as anything else?
No amount of words I write can make you experience what I experience when I’m in a room with 30 people talking at once, a coffee machine a room away, people closing and opening the door, the buzzing of fluorescent lights, and any other extraneous noise happening all at once.
The most frustrating thing of all, is that I shouldn’t have to be writing this. I shouldn’t have to give analogies or talk about my experiences for people to care. Yet here we are. Yet this is what I’ve chosen to do with my free time because I still think “well, maybe they’ll get it if I say it this way, or this way, or that way..”
The Closest Analogy
There’s a youtube video that I’ve never been able to find again, and I wish I could. It’s stuck with me, and it’s one of the first videos on autism I ever watched. It was a non-autistic person giving an analogy for people to understand how it feels to have a meltdown.
She said something like this:
Imagine that you are having a regular nice day, and your child is riding his bike and you watch him as he hits a curb and topples face-forward into a sidewalk. His forehead is bleeding and at this point you don’t know what to do. You run over to him and try to find your phone in your bag to call an ambulance. Everything happened so fast that you don’t even know how to dial 9-1-1 on your phone. Your hands are shaking.
While you try to dial 9-1-1, someone walks up to you and says “Why are you freaking out? What are you doing? Everything’s fine, you need to calm down.” Do you think you have the mental and emotional capacity to answer this person and explain everything? Nope. Instead, you yell in their face, freak out, and are not able to explain anything at all.
Although this analogy isn’t specific to auditory sensitivity, I think this illustrates what being emotionally overwhelmed feels like quite well. It’s not something that can be “logic’ed” away. No amount of willpower will make me less overwhelmed by auditory information.
It’s not about my state of mind or something that I can “calm down.” It’s a physiological response my brain has to external stimuli. And it is certainly not a preference.
Accommodations Are Segregated
This is what bothers me about “simulating” autism for neurotypicals with things like Virtual Reality headsets or videos. (By the way, you’re not simulating autism, you’re simulating sensory sensitivities which many different people have, autistic or not.)
Most neurotypical people don’t fundamentally understand that they will never be able to experience what our brains experience on a daily basis. That’s a fact. You cannot simulate a change in attention, to a super quiet sound, to my brain directing me to the zipper hitting my backpack while I’m walking, to the conversation happening 8 rows behind me on the bus while I have headphones on, when the words were so clear that I thought it must have been right next to my seat.
And this is what is frustrating about Autism at Work programs – that sensory sensitivities are only ever considered when you have a formal autism diagnosis, not just, you know, asking everyone who works there what their sensory needs are, which would make everyone’s days better in the first place. Many autistic people don’t even realize how many sensory sensitivities they have until they talk to other autistic people who experience the same thing. And of course, many autistic people have no idea they are autistic, or cannot get a diagnosis due to lack of resources/professional biases. Accommodations for sensory sensitivities should not be based solely on access to an official diagnosis and disclosure.
Why are autistic people’s accommodations too inconvenient for society? Why do people not care to accommodate sensory sensitivities? Why is the onus always on the person with the sensory sensitivity to “make it work” and to adapt to the environment?
I want you to ask yourself this one question:
Is it because you truly never believed us in the first place?
For Autistic People:
If you don’t know if you experience auditory sensitivity, here’s a diagram that might help you –