Tuesday, 16 April 2013

Scraping the burnt part off the toast

So, apparently it's Autism Awareness Month? Well I guess I'll contribute then.

*ahem* Hey guys! Autism exists!

Are you aware now?

Sorry, that was snarky of me, but what does "awareness month" even mean? Knowing that autism exists? I'm pretty sure most people do, even if they aren't informed as to the particulars. Looking at puzzle piece ribbons? Uh, thanks, that's really helpful. Telling everyone about how they Totally Understand Autism (Because My Friend's Cousin's Niece Is Autistic?) Please god, no. 

I was diagnosed with an autism spectrum disorder when I was eight; I wasn't told about this until I was sixteen, because my parents decided that I would be better off if I didn't know I was "different." Here's the thing about this mindset, and the midset surrounding people with autism in general: the idea that we don't know we're somehow "different" is just plain wrong. We know. We might not know why, but when people edge away from us or lower their voices when we're around or whisper that something's . . . different about us, we notice. Autism does not mean being wrapped in cotton, walking through the world with no awareness of what's going on around us. Understanding and awareness are not the same thing.

Point the second: there isn't a cure. And even if there is, I wouldn't want one.

A lot of high-profile autism organizations like Autism Speaks put the focus of their "awareness" campaigns on the need for a "cure." They walk low-spectrum kids across the camera's line of vision and tell everyone how these children have been "kidnapped" by autism, how there really is a "normal" kid in there if only they could dig deep enough to find it. Their mission statement is to wipe autism off the face of the earth so that no parent ever has to deal with having an autistic child. Often they have the parents saying this while standing in front of the kids. (x) This kind of rhetoric isn't just damaging to people with autism (see what I said above about knowing that we're being treated differently) but it's just factually incorrect. A "cure" for autism isn't going to magically reveal the person underneath, because that person is fundamentally tied to their autism. It's part of us in the same way that our hair or fingernails are. I can paint my nails and dye my hair, and I can pretend to act "normal" in a crowd, but the fact is, my hair is brown and my nails are pink. And I have autism.

What people who advocate for a "cure" for autism really want is a way for their autistic child/relative to act and communicate "normally-" i.e. like a neurotypical person. They want the autistic person to stop stimming or repeating themselves, or hyperfocusing. They want to be able to communicate with the autistic person like a "normal" child instead of having to decipher echolalic thought or repeating themselves. They want an assurance that their child will grow up and have a life like they expected them to- going to college, holding down a job, maybe getting married and having kids. The thing is though, a disability- or discinclination- to doing these things isn't unique to autism. Lots of people either aren't capable to or just don't WANT to go down those particular paths. It doesn't make them deficent; it makes them individuals, same as autistic people.

I may sound like I'm knocking parents of people with autism. Believe me, I'm not. I grew up with autism; I know that it got hard for my parents at times, especially when I couldn't force myself to eat more than five foods (sensory issues are also associated with autism, and I have them to his day- restaurant outings are difficult for me, especially when people ask why I'm not eating) or throwing tantrums, or sobbing inconsolably because one shoe felt tighter than the other. I can't imagine they enjoyed my endless monologues on whatever TV show I was obsessed with that year (I can trace much of my early development to what show I was watching. "Oh, I was into Relic Hunter, so I was twelve then- The X-Files, so that's when I was fourteen . . .") or the struggle to get my teachers to understand that I needed extra time and patience. But there's two things I want to point out:

  1. Plenty of people without autism have these problems,
  2. The solution is to offer support, not try to force the autistic person into a broken mold
It's no secret to anyone with a learning disability that the school system is pretty damn broken when it comes to neuroatypical kids. That's not to say that there aren't good educators out there; I have some absolute heroes in my school career, without whom I would never have finished high school, and the only reason I'm not naming them here is because I don't know if they'd be comfortable having their names on the internet. But overall, there's a binarism that faces kids with learning disorders- AND people with autism- that makes getting through to teachers and other students a struggle. My mother told me a story about me being in tenth grade, and discussing my performance with one of my teachers. My diagnosis wasn't in my student files, and when she mentioned it to this teacher, his whole demeanour changed: "Ohhhh, she's IDENTIFIED? I didn't know that." Being Identified turned me from a student who wanted to learn into an object of pity- no need for her to try and keep up with the others, she's IDENTIFIED. (Of course, I ended up graduating as an honour student, so I think we can safely say that that teacher didn't know what he was talking about.) But I did graduate. I graduated because the special ed teachers were willing to put in the time to work with me and my teachers (well, some of them) were willing to recognize me as a person and not a dignosis. So if you want to be supportive of autistic people, here's what you do:
  • stop penalizing any behaviour that deviates from the social norm. If they're actively HURTING themselves (i.e. banging their heads against a wall) that's one thing, but stimming and echolalia never hurt anyone. 
  • work to understand US instead of making us struggle to understand YOU. See above re: fitting us into a broken mold
  • start including us in conversations about autism instead of assuming we have nothing to say. Even those of us who have trouble with verbal communication still have minds.
  • support programs intended for autistic adults. You would not BELIEVE how difficult finding assistance is for autistic people over the age of eighteen. You're not a kid anymore? Sucks to be you, you're on your own! But autism doesn't vanish upon legal adulthood, and the needs involved don't either.
  • don't assume that anyone with a specific set of behaviours is autistic and anyone without that set isn't. Autism is a VAST spectrum, and one autistic person is just that- one autistic person. No one of us represents the whole spectrum. We can't.
  • instead of talking about "curing" us of our autism, start embracing it as part of who we are.
See, that's the thing about autism- it's not like a cancerous growth you can cut out, or a burnt part you can scrape off a piece of toast. I wouldn't be the person I am right now if I didn't have autism. I wouldn't be the person I am, period, if I didn't have autism. And, unlike toast, we're not made to order. "Curing" autism doesn't mean eradicating a disease; it means wiping us out. And I don't think that sounds nearly as appealing.

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