Saturday, March 16, 2013

Covert Awareness

“So how’s the little one?” a coworker asked at the beginning of a slow morning.  “I mean, how’s the whole autism thing going? I didn’t know if, ya know, that was something that gets better or whatever.”

I chuckled. Ignorance at its most honest is hardly offensive, I think. Funny, though, coming from a coworker I have known for so long, who knitted a lovely blanket for my son when I was still pregnant. Coming from someone who has met my son several times over the years. But it’s good to ask questions, and I was willing to answer, although the workload picked up before I could get too far into an explanation.

Weeks later, on another shift, with another coworker, I joked about my son’s silliness, pretty much at his expense, behind his back, ha. He’s a quirky kid, to be sure.

“These imaginary friends, man!” I start ranting, shaking my head. “Kinda freakin me out!”

She giggles a naughty school girl type giggle. “You leave that baby alone!”

“He’ll be walking! And he acts like he bumps into something! And he says, ‘Oh, sorry.’ And I’ll say ‘Who are you talking to??’ and he’ll tell me ‘Everywhere.’”

More giggles.

“Sends chills down my spine, man. These imaginary friends need to go home to their imaginary parents.”

“You stop teasing that baby!” she scolds, at least half serious. “Isn’t he, like, borderline autistic?”

“BORDERLINE?!” I exclaim, feigning incredulousness.

She laughs. “I don’t know, what do they call it? Like, Asperger’s? Or something?”

“I think they call it autism!”

“Well, there ya go! Don’t tease him for being different, then!”

Ha. These are two people who know me and my family fairly well, as far as co-workers go. We are a tight bunch, and we’ve all known each other for several years. And, ya know, in these last few years, I probably had many opportunities to teach them a thing or two about autism, and maybe if I had taken the time, someone wouldn’t have asked if “autism is something that gets better” or if my child was “borderline autistic.”

On the other hand, I think there is some benefit to being exposed to autism somewhat “blind.” My coworkers knew about my son’s diagnosis. We are a close enough group that they were a core part of my support system in the midst of the diagnosis process. But I’m not much of a “sharer” in person, you know. I tell cute, brief stories about my kid. N I don’t feel the need to “explain” my son’s behavior. I don’t put any of it in context for them. My son’s a picky eater. He talks to himself. He reads. I don’t understand wtf he’s saying half the time. I could say all that, and add, “because he’s autistic,” but, why? What’s it to ya?

One could argue, “Well, that’s a pretty shit job of an awareness campaign. Maybe if you took the time to explain why he’s a picky eater, or why he talks to himself, and really gave people a chance to learn about autism, maybe people would be more educated!”

ORRRR. Ya know. Not. I don’t know, I don’t know for sure, this is just a thought. It occurs to me that when you “explain away” behavior by attributing it to autism, and turn an individual’s life into the sum of their autism symptoms, and prioritize understanding the broad spectrum over understanding real life people, then people just file it all away in their brains, under “Too different, only understand on a superficial level.”

Because these people know my KID, ya know. And the more they know my kid, I think the more they will be willing to open their minds to really learn about disability, and different neurology.

See, to me, “person first,” in practice, isn’t about seeing “beyond” one’s disability, really. It is just about challenging the notion that one starts off as “the other” by virtue of being wired differently. De-legitimizing preconceptions just by not being reactive to them. Screw it.  Behavior has a function, ya know, and those who learn about autism don’t always really understand this concept. Really. Why does Johnny bash his head? Because he’s autistic. Why does Sally scream all day and all night? Because she has autism. Why does Tommy flinch at his mother’s touch? Because he has special needs. And if this is as far as one goes regarding their level of understanding, it is going to be difficult for one to see Johnny, Sally, and Tommy as real kids, with real needs, and real feelings, and real reasons for doing the things that they do.

So I say, let people be a little confused. Let them naturally challenge their own assumptions about ASD, or disability. Let them ask “stupid questions,” because, there are no stupid questions if they are sincere. Always show people over explaining to people, and, whenever possible, lead by example, rather than teach. Not that I’m necessarily a good role model for anything, but that’s just it—I have no answers for anyone, I can only show you what I do, and how I do. Maybe my comfort with and acceptance of differences will permeate. I mean, I’m pretty sure it will. Pretty sure it has.

Monday, March 4, 2013

Strengths, Knowledge, and the Application of Knowledge: Challenging Assumptions

We have been sorting through all the junk in our house, organizing and tossing things. Today my son stumbled upon a DVD that accompanied some dump truck toy he got the Christmas before he turned 2.

“Hey!” he exclaimed, his facing lighting up. “It’s my stinky movie.”

“Stinky movie??” I repeated, dubious. “What does it smell like?”

“No, Stinky is the dump truck! Remember?”

Barely. I certainly didn’t remember his name was Stinky, but sure enough, that is his name on the DVD. I was surprised my son could recall this fact. His dump truck is in a toy box somewhere—he still has it. But that DVD? We watched it once, when we opened the toy, over 2 years ago, and then promptly discarded it. My son wasn’t calling me “mommy” at this point. He had, like, a handful of words at the time. What the hell does he mean “Oh, mom, do you remember Stinky??” Ha. Ridiculous.

He sure is good with names, though…

He has met several of my friends and coworkers, and never forgets any of them. If he hears me mention them by name in a conversation, he chimes in. “Oh, Samuel! I LIKE Samuel! Is he coming over?”

No doubt he is the Ultimate Power Rangers Trivia Master, knowing every Ranger and every villain in every different Power Rangers show existing—and there are a lot of different ones, now. There are unicorns and dinosaurs and shit.

Typical autistic obsession? Potentially totally useless? Perhaps. Perhaps not.

He DOES read. He was playing this first grade level reading game on the computer, and flying through it with ease. “Well, I’ll be damned, you really can read, huh, Son,” I said.

“Yeah. Don’t say ‘damn.’” He didn’t even look away from his game. Cocky little bad-ass.

Parlor trick? I don’t know. What does it mean to be an early reader with no story telling skills and so far no real expression of reading comprehension? Does it have to mean something? Could it be a really cool thing just because it is indicative of the awesome complexities of the human brain?

I am not sure. I have strong feelings that are more instinctual than anything.

 It is still really hard to hold an actual conversation with my son. Our relationship doesn’t suffer for it, but I think his peer relationships do, and sometimes I just panic and start thinking he’s doomed if we don’t get him back into speech therapy.  Although I know that he is a smart kid, I worry that if he does not understand certain concepts verbally, he has no chance of understanding them in some other context. Then I see his natural ability to soak up facts, names, and information, and I am less worried about the verbal skills.

I think I’ve pictured this smart, yet ignorant child, who is “exposed” to less information than his peers because he can’t verbally keep up.  In reality, he is exposed to different things, as well as the same things through different avenues. In reality, his inability to express something in a way that I understand is just not related at all to his actual level of comprehension. I know that on paper it seems I’m talking about things I should have learned in Autism 101—common truths about differences in learning styles, communication abilities, and neurology. I think, however, that a deeper understanding of these simple truths is required in order to face our own biases when it comes to what constitutes as Application of Knowledge, and realize it is not to be confused with Expressions of Knowledge Communicated towards Others. One can apply knowledge without showing someone else how they are doing it. Just because my son didn’t call me “mommy” until he was almost 3 doesn’t mean he didn’t know I was “mommy.” I assumed he didn’t know. It’s possible he didn’t know. This whole Stinky the Dump Truck reminiscence has me reconsidering my assumptions.