Monday, October 30, 2017

How Are Autistics Supposed To Know Which of Our Pain is Socially Acceptable To Express?

Sadness, Fear, Disgust, and Anger, from the movie "Inside Out." Image source.
I recently found an article from 2015 called Unseen agony: Dismantling autism's house of pain. It says that autistic people are often perceived as being less sensitive to pain (and in some cases, truly are less sensitive to pain) but on the other hand, they also often experience pain from sensory stimuli that others might not even notice.

First there's a story from a man named Noah, who recalls his experiences of pain caused by the sound of a vacuum cleaner on wood floors:
“At first I would scream and yell for her to stop [the vacuum sound], but she had no concept that what she was doing was irritating,” Noah says. “And I had no idea that what I was feeling was not what everyone else felt.”

Noah eventually came to accept that the noise of the vacuum, like many other sensory experiences, was something he just had to suffer through. As a result, “I was very numbed off,” he says. “I could handle really intense cold or even pain and not do anything, not feel too much.”
This is so real. So, for me, I've only recently realized that other people are literally experiencing sensory input (sound, in particular) differently than I am. I've figured out that "pain" is the word to use to describe my experiences. And I've discovered the answer to the mystery that has baffled me for my entire life: Why does everyone else seem to not notice or react to overwhelming, unbearable sounds? The answer is that they literally experience sound differently than I do. I feel it as pain, and others don't.

Poor little Noah. "Noah eventually came to accept that the noise of the vacuum, like many other sensory experiences, was something he just had to suffer through." And that was my life too, as a child. That was my normal. Sometimes I suffer pain, and nobody else understands, and that's just the way it is.

The article comes back to Noah later on:
When he was working at a summer camp for children with autism, Noah says, he once heard one boy respond to another boy’s annoying, singsong repetition of “to-MAY-to, to-MAH-to” with: “Stop saying that. It feels like you’re pricking me with a thousand needles.”

Despite that sharp visual, Noah says this kind of description is only a metaphor: His sensory sensitivities don’t feel like the physical reality of a cut or bruise.

“My response will be very similar to someone who’s in pain, but it comes from a different place,” he says. “It’s just that it’s an all-encompassing, irritating process that envelops your whole brain.”
I find it interesting that they're explicitly pointing out that sensory pain doesn't feel the same as physical pain. To me, that distinction seems like something only autistic people need to know. Like, for autistic people this information is really helpful- I never thought to use the word "pain" to describe how sound felt to me until I met a therapist who used it. Because yes, it's not the same feeling as getting hit or something. But at the same time, when I tell people "loud sounds are painful for me," I don't explain that the pain is not like physical pain- because then they might think my pain isn't really real and they don't have to take it seriously. (Side note: It is a BIG DEAL that I'm able to tell people "loud sounds are painful for me." Because I've discovered that avoiding loud sounds is literally a real need I have and it is 100% valid to tell people and expect them to act accordingly. Before, I always felt like I was asking for something unreasonable and I was being pathetic and other people didn't have to take it seriously.)

I figured out I should use the word "pain" to talk about how sound feels by doing thought experiments like the following: Which would be worse- getting slapped hard or suddenly hearing fireworks? Of course they don't feel the same, but I find myself unable to choose which is worse. And that means it's valid to say hearing fireworks is painful for me.

(And I'd like to quibble with the language about "sensory sensitivities" being contrasted with "the physical reality of a cut or bruise." Sensory pain is reality too.)

The article gives some examples of autistic people who (in my opinion) really do seem to be less bothered by things that would be painful for other people. It mentions girls with Rett syndrome, who sometimes fracture bones and don't seem to feel pain from it. So yes, in some cases, autistics really do feel less pain.

But I believe a lot of this being-perceived-like-we're-not-in-pain is because of how other people don't take our sensory pain seriously, so we are taught to not express it when we feel pain. A child with autism might tell their parent that the tag in their shirt is bothering them, and the adult says it's fine, it's not a big deal, stop complaining. Of course the child is going to internalize the idea "it's wrong for me to express it when I feel pain."

Take a look at this excerpt from the article:
In a 2009 study, researchers found that the hearts of children with autism pounded faster while they had their blood drawn than did those of typical children. But the children with autism made fewer facial expressions, such as grimaces, that indicate pain, perhaps because they have a smaller repertoire of expressive behaviors in general.

“The challenge with autism is that we’re dealing with a population that has altered social behavior,” Moore says. “And pain behavior is a fundamentally social thing.”
All right. I have some things to say about this.

Let's say you're a child, and your sock is irritating you. It's like all itchy and touching your skin all wrong and you just can't stand it. So you tell you mom, and she says no, your sock is fine, it's not a big deal. So you are forced to keep wearing the socks and just endure the pain.

Let's say you go to McDonald's, and the smell of the soap in the bathroom is just unbearable. And you can't stand touching the tables, they feel a bit greasy and nasty. You keep your arms close to your body so you don't have to touch anything. You hold your breath so you don't have to smell the soap. And your parents tell you to stop it. It's not that bad, they say. Come over here and eat your food. It's FINE. The food is a little bit cold and a little bit too soft and feels nasty in your mouth. But this is the way of the world. This is your lot in life. You suffer and you just have to deal with it. You tear off the edges and eat the parts that aren't nasty, until you just can't stand to eat any more.

Then you're at school and you're in the gym with a bunch of kids, everyone's running around and it's so loud. It takes all of your energy just to withstand the sound. You just want to find a corner where you can keep to yourself and look at the floor and not make eye contact with anyone, because you're exhausted from the sensory overload. But the gym teacher tells you to stop that. You have to come and play with the other kids.

And then you go to the doctor and get blood drawn. It's scary and painful, but every day your life is scary and painful. It's just one more item on the list of things you have to endure as a normal part of living your life.

And then the adults are like "wow she is not grimacing, maybe it's not painful for her."

Or maybe it's because time after time, you told me to hide my pain. Stop making that face. Stop whining. It's fine. It's not that bad. It's not a big deal. It doesn't hurt.

How am I supposed to know that suddenly I have happened upon a situation where adults expect me to express that I'm feeling pain?

How am I supposed to know that, even though they expected me to go the whole damn day with my sock scratching me and I'm supposed to pretend I'm fine, now they're going to think something is wrong with me if I don't whine while getting blood drawn with a needle?

How are we supposed to know when adults want us to hide our pain and when they want us to show it?

During our childhoods, we're constantly told that our pain isn't real and we just need to learn to be okay with it and act like everybody else. The adults don't know that we're truly experiencing pain. And we don't know that other people aren't experiencing the same thing. We internalize the idea "when I'm in pain, I should just try to be okay with it and not bother other people." OF COURSE this has an effect on our reaction when we're experiencing something that other people believe "counts" as real pain.

And here's a wild idea: Could this constant gaslighting- where people tell us our pain isn't real- also explain other autistic behavior?

When a neurotypical child gets hurt, and an autistic child doesn't respond with the "correct" show of empathy: How are we supposed to know that we come across as uncaring and heartless if we don't make the proper facial expressions and say the proper comforting words? That's not what adults have modeled to us. Sure, they show empathy at first, until they determine that we are just complaining about "nothing" and we need to shut up about it. But we make the mistake of saying "it's not that bad" to someone who's experiencing pain that society recognizes as painful, and then suddenly everybody thinks "autistic people don't have empathy." (The question of who, in this scenario, "doesn't have empathy" will be left as an exercise for the reader.)

A lot of autistic people have trouble recognizing their own emotions, or don't show emotion in their facial expressions the way neurotypical people expect: Could this be because, from our earliest childhood moments, people have told us that our pain is not real pain? They cut off our ability to express the most basic, primal emotion. We internalize the idea that we're not actually suffering real problems, we're just pathetic and need to get over it. Adults take us to crowded, loud public places with overwhelming sensory stimuli and tell us "this is fun"- and we try to believe we are having fun, try to ignore how nervous we feel. No wonder it takes so long to even figure out what our emotions are.

And how about the autistic focus on black-and-white rules? Maybe this originated with our search for the rules governing when we're allowed to express pain and when we're not. Seems to be based on some arbitrary, absolute criteria that everyone except us understands. We can't trust our own feelings; there is some set of rules higher than us, and we mustn't break them. (As it turns out, the common thread running through all the situations where adults expect us to express pain is this: neurotypical people experience pain in those situations. Yeah. Imagine that. So simple, and yet there is NO WAY I could have figured that out as a child. How am I supposed to know when neurotypical people do or do not experience pain?)

Probably it's a stretch to say that these other autistic traits can be totally explained by gaslighting related to sensory pain. But I know that in my own life, there have been extensive, long-term consequences. I deeply internalized the idea that if I'm in pain, I should just endure it and try not to bother anyone else about it. (Yes, my parents did care about me and help me- but it always felt like "she's just a scared little kid and she's too weak to deal with these things, but we can't let her avoid them forever- she has to learn to live in the real world and 'be normal.'") I believed it would be bad to ask for accomodations related to sensory stimuli- for example, to say "I have to leave now because it's too loud in here"- that would mean I'm weak and pathetic, and I should be ashamed. I need to try to be "normal." (I still feel a lot of anxiety- my body gets shaky and my heart beats fast- when I ask for accomodations. Because I grew up believing that I should hide my pain and "stop complaining.")

So don't believe anyone who tells you autistic people experience less pain. Most of us experience more pain that others, and then on top of that, the psychological stress of being told we're doing something wrong when we express it.


Autistic at Disneyland
Autistic at the Aquarium
The Sound

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