How Autistic People Hear the World: auditory chaos and the search for silence

How Autistic People Hear the World: auditory chaos and the search for silence

Disclaimer: I am not Deaf or part of the Deaf community. Please absolutely defer to Deaf people in regards to the film and how it portrays Deafness and Deaf culture. That is not the focus of my post here. Deaf/HoH people, please let me know if any of my terminology is incorrect or needs to be updated and I will do so.

I just watched the movie Sound of Metal and it is by far the most relatable experience of my hyperacusis and auditory sensitivity that I have ever seen and heard on film.

Although there are a lot of “sensory overload simulations” to try and mimic autistic people’s sensory experiences, it is often difficult for people without sensory processing differences to relate to people who have them. It is hard for people without auditory sensitivity or hyperacusis to understand our auditory experience. Often, a 10-minute or even 30-minute video of a person experiencing noises simply doesn’t cut it. Our experiences are way more complex than that. And that is why I related to this movie so much, as it showed just how complex navigating this auditory world really is.

[MAJOR SPOILERS AHEAD!!! – If you have not seen Sound of Metal, please do so before reading this if you want to watch it! I would definitely recommend lowering the volume at the beginning of the film if you have auditory sensitivity. There are at least 4-5 different parts of the film where I had to lower the volume.]

Sound of Metal and the Movie’s Auditory Experience

This film does amazing things with sound. This film attempts to simulate the auditory experience of the main character as he loses his hearing. I’d again defer to Deaf/HoH people here, but as someone who knows about cochlear implants and how they sound generally, I thought they did quite a good job of simulating the sound of a cochlear implant, even though it can differ for each individual person. I can’t comment on the other parts of the film regarding the portrayal and simulation of hearing loss.

Towards the end of the film, Ruben acquires bilateral cochlear implants (most of the time there would be multiple surgeries for 2 implants due to cost/insurance/recovery time. This seems to be an intentional plot choice so they can simulate the sound of cochlear implants more accurately in the film).

With his cochlear implants, voices he hears are distorted, high-pitched, and frankly, quite grating. We hear what he’s experiencing when he gets his cochlear implants activated for the first time. The audiologist’s voice is barely understandable until she adjusts the cochlear implants for him. We hear a little bit of what his experience is when he’s walking around outside, but it quickly switches back to typical audio.

Then we switch to the party scene. Immediately, when he enters the party, he is bombarded by at least 5-10 different voices simultaneously, much of which is again, high-pitched and grating. Noises that most hearing people would only hear in the background now become loud and intrusive. He has to have his girlfriend talk directly into his ear to hear what she’s saying. It’s clearly an overwhelming and tiring auditory experience for him. Then he has another quiet conversation at night, and it switches back to typical audio.

The Sound of Silence

In the morning, he takes a walk outside and the film zooms back into his auditory experience with his cochlear implants on. He hears a very loud bus passing by far away. He’s hearing many different sounds at once again, all distorted, high-pitched. He sits down at a bench. The church bell goes off and it’s loud as hell. You can visibly see him reacting. It seems like he’s waiting for it to stop, but it just keeps going – 5 seconds go by, then 10 seconds.

He suddenly rips his cochlear implants off.

Complete Silence.

He watches kids learn to skateboard, sees the sun through the trees above him.

Finally, the movie tells us, he can finally sit with himself in silence.

How This Film Made Me Feel Seen – Hyperacusis and Auditory Sensitivity

The ending of this film deeply resonated with me. As someone with “super hearing” to some non-autistic people (I was once told I have “bat ears”), a much reduced auditory filter (hearing many sounds all at once without being able to “spotlight” on particular sound sources), and hyperacusis (physical pain with loud noises), I deeply relate to appreciating silence.

1. Reduced Auditory Filtering – I Hear More.

In the film, his one-on-one conversations with people are seen as manageable for the most part with his cochlear implants on. Sure, it’s distorted, but he can understand enough of the words to figure out what people are trying to say.

However, in a party setting, it’s as if every sound source is the same volume no matter how far away he is to it. All of the voices go in and out of his auditory scene producing garbled noise. It’s very disorienting. This is very similar to how I experience the world. For example, I once thought a weird sound was associated with my car, only to find out that it was the sound of the zipper hitting my backpack in the seat next to me. Most neurotypical people would never notice that sound at all.

Although the main character in the film doesn’t do this, I constantly want to turn my head when I hear a noise to figure out where it’s coming from, because my brain often amplifies quiet sounds far away into sounds that seem “relevant” to me, even if they’re not. This means I often turn my head when most people don’t even notice the quiet sound occurring in the background of a party, conversation, or lecture. I masked a lot in school by preventing myself from naturally turning my head when I heard I sound, so as not to “look weird.”

Similar to the main character, I can do fine in one-on-one conversations in quiet environments, but if I’m in a room of 10 people and everyone’s conversing with each other, it will absolutely overwhelm me and I will be hearing nearly everything in the room. In some ways, my experience is somewhat opposite to what the character in the movie experienced, but leaves me with a similar result – overwhelm.

My Auditory Experience

I hear everything, especially voices, with distinct clarity. I’m constantly hearing overlapping sounds and my brain is having to decipher them and consciously “split up” the different conversations I’m hearing. I may respond a few seconds late to someone speaking to me because I will intentionally “hold” the auditory information in my brain and replay it back a few seconds later because there is another sound happening at the same time that is distracting my brain. It’s exhausting to try to focus on one conversation when there are 5 different ones going on in a room, not to mention the sound of other noises, such as the cacophony of a restaurant kitchen.

I was once on a bus with headphones on (for ear protection) and I was hearing someone’s conversation as clear as day. I thought they were right next to me. I kept turning my head to try to find them because I needed to know where the sound was coming from. I was in the 4th row close to the front of the bus. I had to crane my neck to look almost directly behind me. The people I heard were 8 rows behind me on the other side of the aisle of the bus. Eight rows! Some days my ears are just like that and seem fixated on the quietest noises, even if I figure out where and what those sounds are! Co-workers can sometimes be surprised when they see me standing next to them saying “What did you need?” because I heard their conversation in another room down the hall, saying they were going to ask me something.

Imagine that character in that film taking a class with hearing people. Imagine the overwhelm that he would experience before and after class. Every student is getting books out, sitting down, talking to their friend next to them, 10 conversations happening all at once. That’s what it was like for me at school. That’s why I read books nearly at all times when I wasn’t working.

2. Hyperacusis

Everytime I give the definition of hyperacusis on twitter, I have someone replying saying “Oh! That’s the word! That’s what I have! Thank you!”

Hyperacusis is something that very few people are aware of. Hyperacusis most often occurs with hearing loss, alongside tinnitus. Though tinnitus (ringing in your ears) is quite well-known now, hyperacusis often occurs along with tinnitus due to hearing loss and is not as extensively researched. And yes, Deaf people can have hyperacusis, which means some Deaf people can’t hear certain things but also experience pain with loud sounds as well. Hyperacusis can also be present in autistic people who aren’t Deaf (though some autistic people can be Deaf or Hard of Hearing and also have hyperacusis).

There are quite a lot of autistic people who have typical hearing who also have hyperacusis.

What is Hyperacusis?

Hyperacusis is pain or discomfort from moderately loud sounds. For me, when I hear a loud sound, it feels like my ear is being stabbed with a knife in my eardrum (very acute pain). Examples of loud sounds for me include vacuums, hand dryers, toilets flushing, lawn mowers, weed whackers, buses stopping, plates clinking together, people talking loudly, and many, many more.

A lot of autistic kids and adults have hyperacusis, but it’s not something that’s well-known. It’s more common that autistic kids are called “sound avoidant.” But many of us are “sound avoidant” because we literally experience physical pain with those sounds. To me, it’s akin to calling us “hot stove avoidant” or “pain avoidant.”

When the cochlear implant is activated, it overwhelms him. He’s not even sure what he’s hearing, it’s just high-pitched and grating. He’s trying really hard to understand the audiologist talking to him. When a bus passes him on the street, it’s really loud. That’s similar to how I experience hyperacusis, except I also get a stabbing pain in my eardrum for the duration of the loud sound. The audio switches between his experience of sound and then back to what a hearing person would hear, which is much, much quieter. Again, this is where the movie resonated with me and really portrayed how overwhelming sound can be to someone, and other people simply have no idea what that person’s experiencing. That’s what having hyperacusis is like.

Imagine how that character experienced going to a public bathroom – flushing a toilet or using a hand dryer. Now imagine a parent wondering why an autistic kid won’t go into public bathrooms and seems to be “avoidant” around them.

I once had a shuttle bus honk at me because I had headphones on, headphones which I wore to protect myself from the sound of the bus stopping next to me. That honk hurt my ears. Sometimes I smile and nod when I’m in an overwhelming auditory situation, even if I haven’t fully processed someone’s words because my ears are too focused on the TV playing in the background or my ears hurt from hearing someone open a chip bag next to me. Pain in general is pretty distracting. Just because I can hear everything most of the time doesn’t mean I can think or physically speak and respond appropriately for neurotypical people.

In the movie, he’s clearly navigating the party and overwhelming soundscape by simply agreeing or not saying anything. It’s an isolating experience. Although this isn’t autistic masking, it is very, very similar to how autistic people are expected to navigate overwhelming spaces when we may need time to process or simply cannot exist in a loud room for that long. Like the main character in the film, we are expected to smile, nod, and behave appropriately, when most people are completely unaware of the difficulties of navigating our overwhelming and even painful sensory experience.

Wishing for Silence

As I’ve mentioned in this post, the main character becomes overwhelmed by the church tower clock and takes his cochlear implants off. He sits in silence and enjoys it. You can see it on his face. This experience of overwhelm, escape from sound, and relief, is very common to me. It’s been something I have experienced for my entire life.

As a teenager, I’d often stay up until 2am because it was the only time the house was truly quiet, even though there were still creaks in the house and I could still hear the whirring of the computer fan. It was the only time I felt that relief and some semblance of silence. Otherwise, the house was constantly filled with noise – either from a TV, people walking, talking, someone making something in the kitchen, washer and dryer going. There was always noise.

In high school I would get to orchestra early in the morning literally just to sit down, cello in hand, and sit in silence. I’d be the first in the door. My entire being searched for silence wherever I could get it. Most of my thoughts, truly, most of them, were about wishing for silence. I’d daydream about being the only person on earth after some apocalypse, and think about how quiet it would be. I carried around a book called Japanese Death Poems, a book of haikus that people wrote right before they died. Most of them were about nature, and I could think about how quiet that nature scene would be. Reading was my way of escaping the sound around me, even if it didn’t always work. It gave me something to focus on, to listen to my thoughts rather than the chaotic sound around me.

For Me, an Identity and Disability

In a different way to the protagonist, I had to realize my limitations with myself and the environment. Once armed with headphones for ear protection and knowledge of hyperacusis, I went to a meet-and-greet to say hi to new students in my graduate program. There were about 30 people jammed into a very small room with a low ceiling. I spent 3 minutes in the room, realized that I was exhausted and that it was way too loud even with my headphones. I grabbed a slice of pizza and went to the hallway to eat it, then left. I did the same thing at the holiday event two years later when there was a live saxophone (a live saxophone is hyperacusis hell for me, even with ear protection on). I give feedback about the live saxophone every year at the holiday party but people just don’t seem to care. They’d rather have the nice “festive music” instead of have me there I guess. It is what it is.

I’m now versed in a variety of different ear protectors (earplugs/headphones/ear defenders) and can accommodate myself for most events. Using ear protection and in turn dampening sound levels does help in filtering out different voices and being able to focus on one sound source, but it still takes more cognitive resources for me to focus compared to neurotypical people. The people I work with are supportive and don’t ask me if I can hear them, though accessing services like healthcare can be much trickier when wearing visible ear protection like headphones and have led to misunderstandings by staff, assuming I cannot hear them at all and they must shout or ask me to take them off.

Finding My Stillness

Last year was the first time I had ever gone to a live concert without experiencing pain. I go to an annual convention every year, and every year they have live music. I really wanted to see a certain band. I put my Earaser earplugs in and put my headphones on. The combination was actually comfortable, unlike others I have tried.

I stood in the back of the concert hall, and I could hear the music. I braced myself for pain. I waited 5, then 10 seconds, but I wasn’t experiencing the acute pain I so often get from the loud sound of the snare drum or the electric guitars. There was no pain to brace for.

I felt a pang of relief. I felt a tear roll down my face.

This is how other people experience the world? This is what it ‘s like? All of my life, this is what it could be like? Without pain?

I wasn’t hearing the air ventilation or the people walking behind me. I was just. hearing. the. music. It was one of the best nights of my life, and I will always remember that feeling, that stillness.

I know being Deaf/HoH can be very different than being autistic (though some people are both!), and I know many of my experiences may differ from a non-autistic Deaf/HoH person and what they have to do to navigate the world.

But as an autistic person with hyperacusis and auditory sensitivity, I am so glad I watched this film. I may not have been the intended audience, but I appreciate this movie so much for making me feel seen.

9 thoughts on “How Autistic People Hear the World: auditory chaos and the search for silence

  1. As a music producer and performer (with ASD) I can — maybe surprisingly — relate to this, a lot. I’ve always had problems with loud sounds, though it definitely became a proper issue after I developed tinnitus, a few years back (after a live concert, where I was playing). I’ve enjoyed playing live gigs, as much as I loathed being in the public. The sheer volume, is preposterous — on stage is much lower, at least in my experience (I now wear earplugs anyway).

    I sometimes ‘redirect’ my tinnitus through my brain to try to distract me from when there are too many people talking at once, or a background TV on while people are speaking to me. It’s like the tinnitus can help: by focusing on it, all the other sounds smooth out. Kind of like listening to white/pink noise.

    Thanks for sharing. Brilliant read as always.

    Liked by 1 person

  2. Thank you for writing this! I don’t experience much pain, but I hear so much, and am so often overstimulated. It is exhausting. I’m a cellist, too. Does playing cello help you regulate? I tend to listen in the spaces in my bones (odd as that sounds).

    Liked by 1 person

  3. I can relate as I have Aspergers and hearing loss but there are some sounds that are so loud that they make me feel pain and fright.I never know quite what sounds will have me wincing in pain, sometimes the sound is not as loud if I hear it again but often I cringe when certain sounds are repeated.

    Liked by 1 person

  4. I feel this so much. I have loads of discomfort with even like the fridge running in the same room as me that I’ll put light music on just to shut it up and music is actually comforting. Loud noises don’t necessarily cause pain but a sense of discomfort for me. I used to be afraid of thunderstorms due to their loudness.

    Liked by 1 person

  5. Your post has summarized this experience really well– I have a lot of trouble explaining how I can be overwhelmed from sounds no matter how loud or quiet they may be to others. Even at night, hearing the AC, some rain drops clinking on metal nearby, the whirr of the fridge, and every electronic in the room– WHICH I can tell has a different ring from regular tinnitus ring. Concerts can be great for me too when it’s music I really love! Drowns out every other sound, so long as no equipment is peaking. It can and does switch to nauseating and painful if it’s set up poorly or the other acts aren’t music I like. Bass can make me genuinely sick, some guitar or excessive cymbal use will force me to step out of the concert hall until that parts over.

    Read another post of yours about the trauma growing up with undiagnosed ASD, and the part about pretending sounds didn’t hurt really hit. I’ve even pretended I couldn’t hear some noises. My physics teacher was plaing different frequencies as a demonstration and he turned it way up and played one at the end of class. I acknowledged the sound when I heard it and he said “no way you can hear that, you’re lying” and I just played along like I was, thinking I was mistaken…

    I’m really enjoying reading your posts after recently discovering this blog! I’ve suspected Im on the spectrum since June of last year, and only recently had an eval appointment (won’t hear back until late April). Thanks again for the great post. Looking forward to reading more. Really is great being able to read your experiences and see I’m not the only one processing the world this way.

    Liked by 1 person

  6. If you’re able to hear sounds that people miss, it probably means you have better hearing from protecting it because your hyperacusis required you to do it. High-frequency hearing is especially vulnerable due to the anatomy of the cochlea. You might also be hearing the high frequencies that almost everyone misses.

    When people think they’ve gotten used to loud sounds, sometimes it means they’ve unfortunately already damaged their hearing. It makes sense because sounds tend to become quieter and muffled to those with hearing loss.

    When I played a 20 kHz tone around an autistic teen with hyperacusis around 15 years old, he could hear it with discomfort while I struggled with 19 kHz around age 18. I guess when he avoided the sounds by giving loud gathering a pass and covering his ears around sudden loud noises, it protected his hearing. You can download a tone generator app to see how high you can hear. An audiologist can confirm whether your hearing is actually better.

    Hearing is something that I find interesting.

    Liked by 1 person

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