Is my mask bothering you?
I’m filling out this survey for a study about noise sensitivity in autistic folks (check it out here if you’re interested in also trying it out) and there’s a preliminary part before the actual auditory test where they want to learn more about you.
This study is coordinated by an autistic researcher and you’d think at least they’d be more up to date with what encompasses being autistic, right?
But they use a kind of self-assessment tool to figure out “just how autistic” you are, I believe regardless of your having an “official diagnosis” or just being self-identified.
This consists of a list of affirmations that you may or may not agree with to a degree, but the problem is that these are still based on the old assumptions about autism.
Notions such as “I can’t tell what people are feeling from their facial expressions” theoretically (based on the old “science”) denote lack of empathy in autistic folks and are used as a cutoff for discerning between autistic and non-autistic people, but those are wrong.
Some of us have spent years of our lives reading the hidden meaning behind what people say, based on their body language and facial expressions.
When you’re constantly in danger while growing up as an autistic person, you learn really fast what certain looks mean, despite what words the people use.
There’s none of that “oh, I have no idea what this person is feeling based on their facial expression and body language”. When survival or at least not being abused is at stake, one learns really fast how to read the emotions that people try to hide behind their lies.
What actually trips me up when interacting with people, including my own family, is the constant need to lie, to pretend like everything is peachy when it obviously isn’t.
Their body language betrays them every single time and I could never understand why or how come they don’t see that and stop pretending or lying.
They might not even be aware of how transparent they are to some of us autistic folks.
I’m not saying every autistic person is acutely aware at all times of all the things everyone else is feeling, because I know that’s not true.
If you grow up in a safe environment, where your every movement isn’t judged or tried to be “fixed”, you may not need to develop such intense knowledge of what people mean, in fact, when they use certain tones or body language cues.
But just as there are what appear to be “low empathy” autistics, there are also “over empathetic” autistics who know and feel all the emotions in the people around them at the same time and are overwhelmed and confused by the intensity and the concealment.
I’m not saying that most people lie constantly intentionally, I know it’s social conditioning that makes us pretend like everything is fine when it isn’t, like we are friendly when we in fact want to take advantage of someone, like we are altruistic, when in fact we have our own personal agenda to follow.
I mean it hasn’t made me, because I’ve always resisted this and feel like a liar every time I follow social “rules” that make absolutely no rational sense to me, even put into evolutionary perspective (they do, somewhat, actually, but I won’t get into that now).
Which brings me to another part of this survey, where several affirmations are related to trying to follow social rules in order to be accepted.
I don’t try to follow social rules that make no sense. It hurts when I do and I end up with experiences I don’t want.
Let’s give an example. Let’s say I get invited by a “friend” to go shopping in a mall. I will say yes due to the social obligation to not say no to invitations.
I will go in a place full of noise and horrible perfume smells, along with a person who has zero interest in anything I like. We’ll be walking for hours under bright fluorescent (now LED) lights in a fake 21 degree environment where it’s too warm for outdoor autumn clothes, but too cold for a T-shirt (for me, at least), looking at low quality fast fashion garments made in synthetic fabrics in factories that employ child labor, forced to find a socially acceptable excuse to not buy any of the expensive crap (saying that stuff in malls is mostly useless, tacky, expensive for its low value and created with child labor is not socially acceptable). Then I’d get home and either end up with a migraine or a meltdown or both.
So no thank you, I am not interested in following social etiquette that I’ve been skirting since I was 2. Or earlier, but I have no memories from then, so 2 will do.
But if I answer that I am not interested in copying folks and pretending to live like them, then am I considered autistic by the test makers? Who knows? I assume not, since “all autistics want to belong” and that means learning to mask. Or do they, really?
I want to answer truthfully and, even though I’m an expert at masking and reading emotions and getting to the heart of things because that’s what I’ve had to do my whole life to survive, it doesn’t mean I’m not autistic.
You can be autistic and want to mask, you can be autistic and automatically mask and want to stop masking, you can be autistic and mask without knowing it for your entire life.
The masking doesn’t change whether you are autistic or not, it’s just a tool for survival in a world that doesn’t accept autistic behaviors as part of “normal” life.
So maybe there’s still a lot of work to be done on these surveys. How about we explore motivations instead of behaviors?
How about we ask why certain people do certain things, instead of asking them if they do the things?
“Do you follow social rules because they come naturally to you or because you want to fit in a society that doesn’t accept you as you are?”
“Do you wear sunglasses all the time because you want to look cool to your peers or because natural and artificial light hurts your eyes?”
There are so many ways in which to reword all of those questions to ask about motivations instead of just the presence and/or frequency of a behavior that can be observed by a third party (yes, there are hidden behaviors that no outside observer has access to and that’s a topic for another day).
And then maybe we’ll actually understand why autistics do the things they do and how we can support them in being comfortable and leading a fulfilling life in a world that is too much for their senses and their intellect.
Yeah, maybe I should write my own autism survey that will be filled by exactly 2 people…
OK, I’m off to fill out the rest of the survey.
