I'm at the beginning of my journey into the world of autism. My son sees the world differently than typically developing people with so called typical minds, and I find it absolutely fascinating. This is all new to me, and I am no expert in Autism. I am just a mother on a mission to gain new knowledge and experience as I raise my child to be as happy and independent as possible.
“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.’”
“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,
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.
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
“Stinky movie??” I repeated, dubious. “What does it smell
“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.
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.