Posted by: E (The Third Glance) | May 20, 2012

Have you met my Startle Reflex?

“Have you met my startle reflex?”

I say this at least once a day. It’s almost like a running joke with me. It’s a great little scripted line, to explain why I jump/flap/whimper/cover my ears/etc when a sudden sound or flash or something happens.

I have “super-human hearing” – my auditory sense isn’t one I can just “turn off”, and it has next to no filters. I hear everything that goes on in the room around me, and actually can’t wear noise cancellers, because my brain uses those sounds to orient me. I hear the hum of the lights, everyone’s breathing, the noise the projector makes, and the whir of my professor’s hard drive. I even know when the people behind me are using pencils versus pens on their paper when they’re taking notes. My brain doesn’t filter these sounds out automatically – instead I have to consciously recognize each of them and then file it away.

I’ve tried using sound cancellers before, and rather than having the calming effect of blocking out noise and making it easier for me to function, it has the opposite: when I stop hearing ambient sounds, my body’s sense of direction goes completely haywire. Gravity turns off. I can’t tell which way is up, down, right, left, or anything. I don’t know where I am, and become completely disoriented. I often get dizzy and nauseous. For this reason, despite the fact that I have an over-reactive startle reflex, and have to spend a lot of time and energy dealing with my overzealous hearing, I don’t have a good solution. I call this “auto-audio-orienting” – my body orients based on the sounds I hear, not visual cues or anything else. I’m a being who relies almost entirely on sound to function. (Ironically I have mediocre vision (I wear glasses) do use visual signals. It’s just my body that relies mostly on sounds.)

But this also means that I am super susceptible to my over-reactive startle reflex. Slam a door near me? I jump. Come up behind me? I jump. Tap me on the shoulder? I yelp, then jump. Make a sudden, sustained loud noise, and I’ll slam my hands over my ears and go into sensory shut down. People say I’m high-strung, wound up tight, and all number of other things. What they don’t realize is that every time there’s a sudden noise, my brain’s filters aren’t able to process it properly. It gets stuck, and instead of processing “the door just slammed”, as most people do, I process “OUCH LOUD NOISE HELP THAT HURT WHAT JUST HAPPENED?” – is it any wonder why I jump?

I’d like to invite you into my brain. Please when you’re done reading this, sit and listen. Close your eyes if it helps, and consciously observe every single sound you hear, from the shuffling of your own feet, to the movement of someone else’s hair, to the flickering hum of the lights. Consciously think about it. Realize where it’s coming from. Every time I enter a new environment, this is what it is like for me. Now try to hold on to all of these sounds. Recognize them, think about them, tie them down to what is making them. Notice when they change. Exhausting, isn’t it? Then open your eyes. And start looking around. Notice everything you were hearing and the stuff you didn’t hear. But don’t let your brain block out those sounds again… keep track of all of them. AND the new sights. Now try to have a conversation with someone, without letting your brain wander away from those sounds. That’s what it’s like for me, but backwards. Where you have to work to listen and hear everything, I have to work to filter it out to concentrate on what I must. And that was just two senses. Think about adding in smell and touch and taste, too.

I have spent my life building up a way to deal with this constant input of sensory insanity. I have found some ways to cope, and some ways to work around it, but it’s really for the most part, simply an exhausting part of my day-to-day life. I’m usually pretty good at dealing with the everyday input. The constant hums, the scratching of pencils or tapping of keyboards, the scratching of feet. I’m able to turn most of my brain energy to other, more important and interesting things. But when there’s a sensory surprise, I react the only way I can. My brain has been overloaded. My resources must be suddenly diverted to dealing with the new input. And since I do not live in a tiny bubble where no sensory surprises ever happen, this occurs multiple times per day. My body reacts physically. A sudden input leads to a temporary sensory shut off. My body goes rigid (thus it looks like I jump), as a way to avoid textures and movement. My eyes shut. I gasp and hold my breath. And if I can, I will cover my ears. The sensory surprise is too much for my poorly built up filters, and thus, my body reacts physically to help protect my brain. When the assault is over, I can relax and return to my previous state. Depending on resources available (brainpower) and the magnitude of the input, this can take seconds, minutes, or sometimes hours.

As with many autistic individuals, my startle reflex is very sensitive. I now know why mine is this way. This may not be the same for other autistics, but it’s how my brain functions. When I was younger, this would trigger a full-blown meltdown/shut down. Now that I’m older, I’ve learned how to (mostly) keep these to only affect me for a few minutes, but they can still trigger a full on shut down as well. And now, you have met my startle reflex.

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Responses

  1. It is amazing how much our ability to filter things out determines how we experience life.

    In our world, having thin filters is a problem. I imagine that it might not be a problem for hunter-gatherers in the jungle, where there is little stimulation, but faint sounds might be important, and loud sounds are a clear sign of danger.

    Do you like music? How do you react to smells? I hope you will write more about how the world is for you. It is fascinating to read.

    • Thanks for the comment! 🙂 I have a feeling the startle reflex might be even more active in a jungle – every time you hear a predator coming, you know?

      I love music – I’m a classical music junkie. I will write about this in future, but I will say I LOVE classical music and can listen to it all day. As long as its on a radio or through speakers. Headphones really suck for me.

      And smells? It’s my least hyper-active sense, and I still definitely smell more things, and experience it more intensely than most people (from what I observe of their actions/responses)

      • Ear buds bother me, but high-end over-ear headphones that simulate a live sound stage don’t make me disoriented. Have you tried a pair of those out? It can still be weird–like you’re hearing a different room than you’re seeing–but it’s less artificial than the earbuds.

  2. Thank you for writing. It is helping me to have some insight into how my Son might be experiencing the world. I was very interested reading your response to the last comment, saying you can’t listen to music through headphones. My Son hates headphones, and although I know his hearing is very sensitive I had never really thought that headphones may make this even worse – As I write this it sounds so obvious. but I hadn’t considered it, so thanks.

    • For me, headphones mute everything around me, and over-amplify the music… it changes the ratios of the sounds, and it makes things too confusing.

      • I just find headphones so uncomfortable! Nice to meet someone else who absolutely loves classical music. I used to sing (lady tenor!) with a big choral society. Sang all the finest Masses and Requiems in cathedrals and the Albert Hall. Too old now – voice has faded. But it was wonderful while it lasted. And I have the recordings!
        And I have the startle reflex Big Time. The first time my husband met it (a motorbike screamed past us) he accused me of over-reacting. He knows me better now!
        Re sound-screening, I find that BBC Radio 4 at mid-volume both blocks extraneous environmental sounds and stops me talking to myself in my head, so I can really relax and often go to sleep with it on.

  3. I react to noises in a very similar way, and I am glad someone has phrased all this. I tend to automatically protect my head when I hear loud noises, and in busy many-noise places like supermarkets I often lose the ability to make decisions. I describe this as being like a DDOS attack.

    I have found that if I listen to loud music I am very familiar with, I can ignore that and it also drowns out background noise, making it easier to concentrate. I don’t know if that would leave you feeling isolated and not know where you are, though (for me, location by touch takes highest precidence, so I don’t have experience of that one).

    • Thanks for the comment 🙂 Unfortunately, loud music is even worse… I almost always listen to it really quietly. That way it doesn’t drown out other sounds. Loud music has the same sort of effect that a loud, sustained sensory attack does… But happily, when music is coming out of my computer, it’s just another sound to add to my surroundings. I think it might have something to do with the fact that its external to me, whereas headphones are internal (or very close to internal).

      And yeah, I’ve never thought about my ability to make decisions during those moments… probably because (surprise! ) I can’t!

  4. Oh my gosh, I feel as if you just totally picked my brain and posted how my startle reflex acts! WOW!

  5. My husband has to warn me if he’s about to do anything noisy, such as crushing cans for recycling – otherwise it’s a total shock to the system and I’ve even been known to cry if it’s something ongoing!

  6. This was wonderful and I’m very pleased to meet your startle reflex! It was extremely helpful to do the exercise of closing my eyes and trying to concentrate on every single sound. Actually it was disconcerting and I became very aware of how much I block out with the ongoing dialogue in my head!
    Emma is both hyper sensitive to certain noises and hypo sensitive to others. For instance with music, Emma likes the volume turned up as loud as our neighbors will allow before complaining, which is really, really loud. Our house is like a mosh pit! But if I’m cooking and using the Cuisinart, she will get very upset when it’s turned on. She will say, “I like pulse, not on.” So I know to have her come over and use the “pulse” button, which she can control and will turn it off and on quickly but not a sustained “on” action. Oddly the fire engines (station directly across the street) doesn’t bother her at all, nor do the screeching wheels on the subway. Dogs barking sometimes can make her put her hands to her ears, it depends on the bark.
    However if she’s studying, trying to concentrate or we are working on academics, particularly reading and writing I try to make sure there’s no other noise, as I think it’s really tough without adding other sensory stuff to the work. Now I am wondering if it would help her concentrate to have music on. I’ll have to ask her.

    • That’s my son in a way too – he can react to the slightest of sounds sometimes – but others seem to have no effect on him at all. When he was an infant/young toddler, we learned that we could take him to the mall to chill, even the busy food court, because the white noise didn’t bother him. But buzzing sounds – like motorized trains or puzzles that make noise really bug him. And he wakes up at night so easily. We have an ocean sound machine & a humidifier humming in his room, but if I clumsily trip over something in another room, he stirs immediately. I turn the sound up on the TV just barely enough to hear it, or talk on the phone over a whisper, he wakes up. But sometimes car alarms will go over, loud motorcycles go by – nothing.

      • Wow – I used to wake up and have a complete meltdown every time there was a motorcycle that drove by. I’m not so bad now, but I still hate them!

  7. I am also hypersensitive to noise. Of course some levels of noise are so loud that they are uncomfortable to nearly anyone with hearing faculties.

    But my comfort threshold for loud noise, along with many/most people on the Autism Spectrum is set much lower than most neurotypical people.

    In addition to this, I am also affected by relatively low level noises when there are too many sources of noise, for instance at a restaurant, particularly where acoustics don’t seem to have featured as part of the planning.

    I recently read that the audio hypersensitivity of Autistic people is not necessarily entirely related to having exceptional hearing, although this may be the case for some people.

    All babies are born hypersensitive, to almost any stimulus.

    But they gradually grow out of it, as is evidenced by watching adults in a Shopping Mall or at a Baseball game!

    This acquired tolerance to noise/light, etc is not due to a dampening of the sense organs; it is a change that takes place in the brain, to filter out background light and sound.

    Non-autistic people seem to be able to walk past a music store completely oblivious to the often painful level of noise that I perceive blasting out of the speakers. They also seem to be unaffected by the low level hum of multiple conversations taking place in a restaurant.

    Clearly the problem is not just the noise level, it is the the fact that we are having to process too much audio information.
    – Sometimes as a very loud and or unexpected noise
    – Other times as a collection of low level noises

    With Neurotypicals, the sensory desensitizing takes place in the brain during childhood.

    For some reason, this process either does not take place or is incomplete with Autistic people.

  8. Yeah. I guess I totally am like you. 1st day of middle school: Everyone jumps at the bell. 2nd week: Very few people jumping, but I’m not quite alone… yet. 2nd month: It’s just me jumping at the bell. Last day of senior year: Still jumping…

    • yep, sounds about right. And don’t get me started on the fire alarm from my elementary school. I wake up from dreams in which it is featured, absolutely terrified. Those places that play classical music instead of a giant buzzer? They totally are on to something. (Plus, classical music is beautiful!)

  9. OH MY GOSH ARE YOU ME?

    No, you are not me. I have never been able to describe it so well.

    • *like* I keep saying this to another blogger, myself. 🙂 I’m not you… I’m ME 😉 (At least, I *think* I am, anyway…) Thanks for the comment. 🙂

  10. I know this is quite an old post to be commenting on BUT when it came through I was busy and just never got around to reading it – BUT I remembered the title … and then something happened to me the other day that made me remember the title! … and so I decided to look it up! … It was about 10pm and I was sitting in the lounge, very quiet, no wind, rain, cars – very little ambient sound except the fan on the heater … and then IT happened! … my computer came up with it’s low battery warning – DING! … now this happens almost daily, and usually has little effect but in the quiet of the night I almost jumped out of my skin!… not just my usual but seriously for a couple of seconds I wondered if perhaps I’d been electrocuted… I sort of froze and my face was distorted into a grimace! 😦

    • Don’t worry about commenting on old posts – every comment makes me super happy. Plus most of my posts are (relatively) timeless. 🙂 So thanks for commenting! And yipes, the low battery alarm sounds startling…

  11. Lately, my son, who is just shy of 3, has been more expressive when he is startled. He jumps a bit, gets a smile on his face that words can’t describe – others might think he’s being silly, but I think it’s that his face doesn’t know what to do – and he kind of does a McCauley Caulkin Home Alone hands over the face thing – and these actions are all at once. So far, he doesn’t get upset in a sad or angry way – unless he’s been sleeping. If he’s startled awake from sleep (which fortunately hasn’t happened in a long time), he goes into something close to a night terror. My nephew spent the afternoon with him recently – he’s kind of a hyper, in your face kind of kid – he means well – he doesn’t always realize that everyone else doesn’t always find it fun too. So I told him ahead of time, if you can do just one thing for today, do not get to close to your cousin’s face, he might smile or laugh – but he’s just nervous & startled & that’s how he expresses it. He also has very sensitive hearing, particularly when sleeping at night, when the house is mostly quiet – I haven’t watched TV at night with the volume on in about a year. I used to be able to put the volume on low – but now that’s even off limits. I can’t deal with headphones b/c I’m afraid I won’t hear if he’s calling for me. The upside is, I don’t get sucked into lousy TV either. 🙂
    Sorry. I ramble. Bad habit.

    • Aww thanks for your comment 🙂 I don’t mind rambling – I do it all the time! And yes, positives of not watching TV…

  12. This is a thing I can teach you. I have learned not to panic even when I have episodes of sensory overload. Sure, some of that has to do with my OT training. But, a lot of it has to do with a strategy that my OT has taught me (which I have since expanded it to my every day life).

    The strategy is- think about potential solutions when you are calm, NOT when these triggers happen. Then, go over the solutions with some friends you trust to see if they are OK to do. Lastly, try them out until you find something that works for you AND is appropriate. If you are good at this, you can generalize across different situations. 🙂

  13. I have always had exceptionally hypersensitive hearing. Sadly, my hypersensitive hearing still runs much of my life and is the primary reason I cannot work or further peruse my passion for photography. I did make some gain with wearable sound generators having had Tinnitus Retraining Therapy back in ’09. I find that wearing padded earmuffs, sometimes accompanied with earplugs is the only thing that will help me go out in public. Kids and dogs are bad, but fireworks are the worst, and nobody knows how to quit the fourth around where I live this year. Feel free to visit my blog on WordPress; autisticaplanet blogs.

    • Thanks for your comment. For me, I can’t wear earmuffs – if I block out background sound, I get dizzy and sick. So I just have to deal with it on my own…

      • I’m back 🙂 I’m sorry the earmuffs are disorienting. Have you been able to find any relief yet? If not, you might want to look @ earplug superstore as they do have a wide array of sound solutions and degree of sound blocked. I find using white noise all over my house really blocks unwanted sound from neighbors. I use a Marpac Dohm DS (very adjustable for volume output). Just a thought. The site is earplugstore.com I wonder if there are any exercises to help decrease the startle reflex such as learned breathing responses. Trying to find the calm before the meltdown isn’t easy.

  14. It’s often the subtle stuff that is most upsetting. When we were house-hunting I wouldn’t go back to a house where there was any kind of hum. We have our own hums now of course, but I know it’s only the fridge or freezer or boiler and it’s not too bad. But people who idle their car or delivery van engines outside in the road drive me to desperation.
    For many years I suffered from the worst possible migraines – and didn’t know I was on the spectrum, so made no connection. But I did come to realise that they came on when input exceeded output; too much stimulus, however enjoyable – like laughing! – had to be matched by my own opportunity to reply, to be the source of stimulus. Then a balance was struck, which seemed to help. When unwanted sound or other vibration intrudes there is nothing you can do except yell, swear, sob, or silently suffer, until it goes away.
    And I’m another who freezes and can’t make decisions or think straight when bombarded by noise. My husband has learned that he needs to turn his HiFi off if he wants to ask or tell me something!
    Have any of you joined Pipedown, the anti-muzak group in the UK? I’ve been a member for years. They do their best to get rid of the ghastly racket in stores and other public places. It’s at http://www.pipedown.info. Worth a visit.

  15. I’m very sensitive to sound. If I hold a cup next to my ear, I can hear a sound like air rushing through it, even though there’s not even a breeze. (I’m not sure what that is.) When electronics are plugged in, I hear a buzz, even if they’re not turned on. It bugs me so much that I have to unplug everything when I’m not using it.

    I also had to tell my friends to just come in without knocking; I would rather be surprised by an unannounced visitor than be startled to the point of panic by a knock on my door.

    Certain sounds are worse than others. When it’s windy, my window rattles, and it’s actually physically painful as well as startling. Certain types of sounds block my ability to form thougths at all.

  16. What you describe is a bit like my experience but I have an additional little bit of weirdness. I have a problem with audio delay where I hear a sound and I know that I have heard it but I can’t access it yet. When I hear a loud unexpected sound, I know that I am going to get that shock effect and jump but I still have to wait for it to happen. It is like it is processed in two different parts of the brain and one is way behind the other but both still get to play their part.


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