Note: This post was first published on my original blog - Celebration Generation - on October 6, 2016. It was transferred over to this blog - existing comments and all - on 4/2/2021
Earlier this week, I had to go see a doctor about an ear issue. As they asked me “On a scale of 1-10, what is your pain level”, I struggled to provide an answer they would understand.
After over three and a half decades of life as an autistic woman, I can honestly say that one of the most frustrating things about life on the spectrum is the lack of shared frame of reference between autistic people and neurotypical people.
Many/most people tend to think of their views as being the default, and have no idea what others live.
We’re guilty of it too, of course. Neither my husband or I had ANY idea that most people don’t feel their entire digestive system / process happening.
We weren’t really aware that - much like the variety in sensitivity to smells, for example ... people can have wildly different levels of interoception.
Interoception is your internal sense, your awareness of what’s going on with your body. Hunger, thirst, temperature, and more.
For most people, interoception covers the basics: Tells you when you’re hungry, lets you know when you’re getting sick, alerts you of the coming need to find a washroom.
For some autistics, interoception is muted: They don’t get the same feelings until much later in the game.
For others, our interoception is hyper-sensitive.
We feel EVERYTHING... and it’s really annoying. Where you feel “hungry”, I can feel when I’ve specifically not had enough animal protein lately. (It’s a terrible, full-body feeling. It feels like every cell in my body is sluggish and dying).
I can feel when I’m low on iron, before it dips past the low bar of “acceptable”.
Think of it like the dashboard of a car.
For the most part, it will tell you when you need to top up your oil, how fast you’re going, etc. It lets you take good care of your car, without overwhelming you with unnecessary information.
For those with less sensitive interoception, it would be like having a car where the sensors don’t tell you that you’re running low on oil until you’re basically on fumes, and about to blow your engine.
For those like me, it’s like... having a car where all of the sensors are WAY too sensitive. You hit a small bump in the road, and it sets off, say, the O2 sensor.
Unlike the earlier two examples, however, the hyper sensitive interoception wouldn’t be akin to the warning light blinking on for a few seconds. It’s akin to multiple loud alarms and flashing lights going off every time that warning symbol is tripped.
Take pulse, for example. That’s another instance of assuming that my experience is just the default - I had no idea that most people aren’t *constantly* aware of their pulse.
I hear and feel my own constantly, whether it’s running low or high. I don’t have to think about it, it’s just there - like slightly too-loud background music.
The problematic thing is that I am also hyper-aware of tempo and force with it.
If my pulse goes up or down by even 3-5 BPM, if my blood pressure rises or drops a little, I can sense that change - and the warning lights go off.
I understand that those with normal interoception can feel their pulse “racing” when it happens - as a result of strenuous activity, for example.
For me, an uptick of even 5 BPM comes off as “racing” to me, even when it’s completely within the normal, healthy pulse range. It’s... distracting.
I’m not even sure I’m explaining this in a way that makes sense, because I don’t have a ton of frame of reference on life as a neurotypical, beyond conversations that I’ve had with friends.
Fascinating conversations happen, when both sides discuss “what is this like?”, “How does X feel to you?”, and “If you can feel Y, then what about ....?”. I learn a lot from such conversations.
Think about it ... how would you describe a colour - or even explain the concept of colour - to someone who has never had vision before?
Conversely, how would a person who was born blind explain their concept of sight /lack thereof - never having had it - to a sighted person?
It would be very difficult.
When neurotypicals encounter autistic people with sensory issues - particularly from what I read of parents of autistic children - there seems to be this feeling that autistic people are being babies or drama queens, over sensory overload.
There isn’t a lot of effort put into understanding that we just tend to feel things differently.
Now don’t get me wrong, I am 100% OK with being autistic, and I appreciate the “gifts” I have. I put many of my autistic traits to good use.
As an autistic woman - with a keen sense of pattern observation, to boot! - I enjoy a HUGE amount of “pass privilege”.
Most people have no idea that I’m on the spectrum when they meet me - though this was certainly not the case even 15 years ago. (Observation, empathy, and pattern recognition put to use in understanding NT ways!).
As soon as I get even a tiny amount of fluid behind my eardrum? All of that “passing” goes right out the window. I am never as visibly, stereotypically autistic as I am when there is something wrong with one or both of my ears - and I cannot help it.
I am 100% aware that my experience of ear issues is completely different than the average neurotypical experience, and that my outward appearance from it definitely comes off as “weak” or “crybaby” or “drama queen”.
My neurotypical friends go to work when they have ear infections! That will never cease to amaze me.
I’m so terrified of the *possibility* of an ear infection, that the slightest twinge in my ear - feeling like there could be an oncoming issue - is enough to send me into a full, anxiety-ridden meltdown.
I’m not an anxious person. I can deal with major stresses, no problem. I have weathered storms many people will never see - literally even (Tornado!). I may actually thrive on stress, for that matter - I get things done.
I’m also not a wimp, physically. When I was younger, I refused to let a doctor put a cast on my broken ankle, because I had a VERY important (to me) skating competition that weekend.
My skates were stiff as bricks, after all - so I figured I’d be fine. I was - I landed my Axel, on that broken ankle... and used crutches while not actually skating.
I went in to get it casted up the day after the competition.
Smart? Probably not... but I think it does speak to my ability to deal with pain.
Similarly, I’ve landed a botched death drop in such a way that I stabbed the heel of my blade into the palm of my hand, deeply... put a thick glove on and went out to try it (the spin, I mean) again.
I have sliced myself wide open, broken bones, pulled and torn muscles. I had a back injury after a car accident that was bad enough, I was told I’d “never walk properly again”.
It took a LOT of painful work, but I rehabbed THAT one.
My ears, though... are my Achilles heel. Anything “off” about them is my Kryptonite.
I’m not even talking about a full-blown infection - which, as I understand it, even NT people feel as actual pain. I’m talking about the subtle, non-painful stuff.
Right now, I have a “small” amount of fluid behind my eardrum. The doctor was very “whatever” about it, it’s no big deal.
From all I can tell from neurotypical friends / those with less sensitive interoception, that’s an understandable reaction - that it’s a mild annoyance at best.
It’s not fully clogged, I haven’t lost MUCH hearing (it’s definitely muted slightly), there’s not even enough water that I can hear it sloshing.
It’s not even that full/popped feeling you get from changes of pressure. I can absolutely understand how - to those with less ridiculous senses - this would be no big deal.
... but it’s driving me nuts. If you were to have a pillow smothered over your nose and mouth, that’s kind of what it feels like in my ear - complete with the resulting panicky feeling.
The AIR feels different in that ear, and I am all too aware of it. It’s off balance from what the other ear is experiencing. While it’s not actually affecting MY balance, the lack of symmetry in-ear sensation is tripping my “warning lights” terribly.
... but it’s not PAIN.
The thing is, there is a word for “pain”, and there is a scale for it. Sure, my 5 may not be YOUR 5, but at least we can try to plug in a number based on our perception of 1 and 10.
... there isn’t such a term - or scale - for what drives me to freak out about my ear.
When the doctor asks me “1-10, what is your pain level?”, truthfully, it’s a 1.
If I say “1", he has no sense of the urgency I have to fix this, how absolutely unacceptable the sensation is. People don’t curl into a ball and cry their eyes out over a “1", after all.
If I translate it into “1-10, what is the level of unacceptability here?”, it would be a 9 or 10.
I can’t ANSWER with 9 or 10, because pain is a very specific concept, and he would take that 9 or 10 to mean something VERY different than what is going on.
I have to wonder how medical care of autistic people suffers, because of this break in experience/frame of reference.
I’m verbal, and I like to think I’m fairly articulate. I spend a lot of time thinking about stuff like this, and put care into explaining it - but not all people on the spectrum are, can or do.
My “bridge” to the NT side of things is fairly well developed, because I’ve been able to put a lot of observation, thought, and effort into it. Not all Autistics enjoy the same level of.. NT fluency?
The reason I write this, is because I’m hopeful it can shed some light on what life can be like for people like me, and hopefully prompt some understanding and empathy for autistics that have a rough go of things.
Remember, though, interoception is only ONE sense, as systemic as it may be. Many of us have multiple senses that are overdeveloped - taste, touch, sight, hearing, etc.
Going back to “It’s akin to multiple loud alarms and flashing lights going off every time that warning symbol is tripped.” ... that’s for just the internal sense.
Imagine living with that as your reality, while ALSO being exposed to external stimuli, while experiencing it at a higher sensitivity than most.
The sound of an automatic door or grocery conveyor belt that is slightly out of balance can be physically painful, feeling like someone is drilling your brain. Fluorescent lights can be similarly painful.
When your senses are hyperactive, you can have that level of stimulation coming at you from not only multiple outside sources (for example, a HELLISH Cub nearby has the door, conveyor belt, AND lighting issues happening all at once), but internally.
When you see an autistic person having a meltdown, know that there is a very good chance that this is the reality that we are living with.
Everyone is different, the levels to which we experience things are different, and even the triggers are different (for example, mid-range tones bother me more than my husband, who is more sensitive to certain frequencies of high pitches than I am. )... but when sensory overstimulation is an issue?
Well, it could be something very different than what you experience in your own life.
Not only is this relevant to the time of year - colds/flus/seasonal allergies / hellish barometric pressure swings / etc - the holidays are coming up.
With all of the extra smells, lights, noises, etc that the holidays bring... please be kind to the autistic people in your life.
Share the Love!
I always appreciate shares of my posts, and that's doubly true for my educational posts about autism and autistic rights.
If you post it on Twitter, feel free to tag me: @OverlordMarie.
Interested in autistic - and human! - rights? Be sure to check out my line of Autistic Pride T-Shirts - and other items.