With Autism Awareness/ Acceptance month more than half over (WHEW!), I’d like to take the opportunity to spread a little more awareness.
Autistic people face an infuriating Catch-22 situation, and I’m not entirely sure that neurotypicals are even aware of it – even the well-meaning allies. So, consider this a PSA of sorts.
People who meet the neurotypical definition of “autistic enough” – maybe they’re nonverbal, don’t withhold their stimming, and/or need assistance of some sort – are seen as being less than human. .. And less than capable of speaking up for themselves.
I can’t tell you how many times I’ve seen people written off as “stupid”, just because they don’t communicate verbally. (Not talking is not the same as not thinking… it’s not even the same thing as “not communicating”)
I can’t tell you how many times I’ve seen autistic self-advocacy written off because, essentially, autistic opinions aren’t “human” enough to matter.
Autistic people are under immense pressure from society to conform, and to present as neurotypical as possible. “Until every piece fits“, after all. Even beyond the ridiculously offensive idea of “curing” us, most “therapies”, etc are about bullying us (torture, in some cases – ABA, for instance) into submission, and appearing more allistic. It’s not about helping us with things like over-stimulation, it’s more about goals of forcing autistic people to not flap their hands, etc. Parents and teachers telling autistic kids “Quiet hands!!”- when a child is stimming – is actually a thing.
(Don’t get me started on the whole issue of parents being upset about a lack of (verbal) “communication”, while actively working to silence actual, non-verbal communication by autistics. Words aren’t the only way to communicate, and for a society that is so hung up on body language… many neurotypical people sure go out of their way to ignore/squash Autistic body language!)
… but when you spend your life observing, mimicking, putting yourself through horrible discomfort, watching your every word and movement, etc… you know what your reward is for finally reaching that ability to “pass”?
It’s being told that you’re not autistic enough.
Autistic people who “pass” are frequently told that they’re not autistic enough, or just plain aren’t autistic. This usually happens when an autistic person speaks up for autistic rights, etc. I just read a tweet where the woman “came out” in a college class, was told she shouldn’t say “autistic”, she should say “person with autism”. When she said “I am autistic, and I disagree”, she was shut down with the “not autistic enough” nonsense.
This is not only completely illogical behaviour from neurotypicals, I’m pretty sure it’s related to gaslighting – if not actual gaslighting. The idea that we lack agency to talk for ourselves if “autistic enough”, and then lose agency to speak as autistic people if we DO try conforming is cruel and abusive.
I want to discuss something I don’t usually talk about. I don’t know if it’s a personal taboo or more of a community culture thing, but I don’t tend to talk about how much effort goes into “passing”. Like many other things in life, I suppose… the key to “passing” is to make it seem natural, and for people to not actually realize the effort that went into it. (I think I just made a makeup metaphor. Lord. All that work on “passing” is corrupting me!)
As a kid, I chewed shirt collars… all the time, all through elementary school. I’d chew them until my chin was red and irritated. It was just a source of comfort – stimming – during the constant stress I was put through at school and at home. I had no peace, and I had to be constantly on alert.
Through behavioural counseling at school and eventually moving in with my grandmother (and away from major stressors), that particular stim went away – but not without a lot of work. I had to be constantly conscious of it, until it was just habit to not do it anymore.
It wasn’t the only way I trained myself to pass. I spent YEARS watching faces, making note of patterns, and even studying facial expressions. I put myself in super uncomfortable social situations, to learn. I observed other kids interacting, and worked on mimicking. It was a lot of hard work, resulted in a lot of discomfort, and even more bullying.
These days, I can get along with neurotypicals, even if they’re not always the most logical creatures on the planet. I still have to watch everything I say (NT/allistic people are big on filtered speech, however inefficient that restriction may be), keep the rocking and flapping to a minimum, etc. When I’m out running errands, I have to endure incredible pain from high pitched electronic noises that you may not even hear… simply because wearing noise canceling headphones would be seen as “weird”. My eyes hurt from too-bright florescent light in stores, because wearing sunglasses inside is similarly seen as weird. I could be so much more comfortable, if I wasn’t so focused on passing.
You may see someone who passes as one of you, but what you don’t see is how much brainpower and energy is being wasted in trying to live up to an allistic standard, or the physical pain I can be in. Because you don’t see that, it can be easy to write me off as “not autistic” or “not autistic enough”… and that is incredibly frustrating.
The thing is, living as an autistic in a neurotypical world feels a lot like an abusive relationship. We bend over backwards, and our efforts are rarely – if ever – reciprocated. Rather than being met halfway, we’re expected to do all of the changing. We have to understand allistic facial expressions, but allistic people aren’t expected to figure out autistic body language. We have to go through sensory hell, rather than expect stores to just tone down the brightness and noise. Let’s be real, NO ONE needs things that bright and noisy!
Because of this lack of reciprocity – and I can’t believe I’m admitting this – I often fantasize about just NOT trying to “pass” anymore. It’s a delicious fantasy – just being as comfortable as possible, no longer concerned about trying to live up to the allistic “standard”.
I don’t really have the guts – or means (No longer passing would definitely affect my income!) – to drop my efforts entirely. The other day I felt a bit ballsy and wore my sunglasses inside – it felt completely subversive.
Maybe someday I’ll invest in noise cancelling headphones to wear while running groceries. It certainly would be nice to drown out all of the high pitched electronic nonsense that’s *everywhere*, but again… the beaten-in desire to “pass” prevents me from doing so, even though I’d be FAR more comfortable.
I guess the awareness I’d like to raise, through this post, is that you never can tell what someone else is going through, to present neurotypical. I wish people would think about this when trying to silence autistic voices.
PS Here are some of my previous posts on Autism.