Anyone
who knows me well knows that I am an outspoken supporter for autism awareness. Since
The Boy’s diagnosis in 2010, I’ve worked tirelessly as an advocate and as an
aspiring special ed teacher myself to bring empathy and acceptance to children
like mine.
So
perhaps I shouldn’t have been surprised when I learned that people have been fondly,
lovingly, with the best of intentions I’m sure, theorizing behind my back that
I am on the autism spectrum myself. A friend of mine told me about it,
expecting I’d find it as hilarious as he did. And for a moment, I did. But when
I opened my mouth to laugh, all I could do was cry. I mean, literally. I sat
there and cried.
My
friend was mortified, of course, and apologized sincerely with an outpouring of
support and love, saying all the right things. I accepted the apology and had
to admit, I was as surprised as he was by my reaction. Haven’t I been saying “We’re
here, we’re weird, get used to it!” all along? Haven’t I acknowledged that The
Boy is not the only one in our wonderfully wacky little nuclear family who has
all these delightful quirks and challenges?
And,
okay, you know. Maybe I am on the spectrum. I can’t deny that I have some of
the notable quirks. I’ve openly admitted that my social skills were appalling well
into young adulthood and still kind of are. I suspect that I had what we now
know as selective mutism when I was young, although the adults just thought I
was extraordinarily well behaved. My classmates hated me for it, though.
Endless harassment. I couldn’t understand what their big problem was. Why would
I talk just for the sake of talking? What would I say and to whom would I say
it? Highly illogical, the whole business.
So,
yeah. I was a big weirdo, which frequently annoyed the hell out of my
mother and embarrassed the hell out of one of my sisters. I was pretty
universally teased and bullied all the way into high school until about 10th
grade, when I guess everyone found more fun things to do. I gradually managed
to crawl my way out of it, finding theater, writing, music, crushes on boys,
and dreams of one day moving far the fuck away from all this and never turning
back. I grew up, I put it behind me, found my tribe, and moved on. The end.
Well,
no. Not the end at all.
I
was about one year into parenthood when I found myself rather a misunderstood outsider
again, this time because of The Boy’s challenging behavior instead of my own. I
think one of the reasons I fought so hard for him was an unconscious raging
against the way I had been marginalized myself as a child. There was nothing
wrong with HIM, and there was NOTHING. EVER. THE FUCK. WRONG. WITH ME.
I
had research on my side this time, and everything I was learning in parent ed
classes, and the excellent work of disabilities rights activists who’d come
before me as well as my contemporaries who fight more bravely and
outspokenly than I have. We’ve made a fair amount of progress in the five years
since receiving the diagnosis.
But
even now, even as I’m building a stronger and stronger base of knowledge and
skills at one of the best graduate schools in the country, we struggle just
like anybody else struggles. There are always going to be adults who take his
autistic behaviors at face value and find him offensive and ill-intentioned.
The fact that he’s growing into rather a smart-ass isn’t helping any. But at
least he has more fight in him than I did. I’m so proud of him. I’m proud of
both of us, quirks and all.
So
why did I cry?
I
guess it was the shock of still, STILL being held to a mainstream standard
after all the progress I’ve made. I may feel comfortable and happy in my own
skin now, but I’m never going to outrun that little weird girl that nobody
liked. And even though people have learned to appreciate me for my novelty-act
appeal, they still basically identify me as “other,” even if it is with love.
It
hurts because of all the baggage attached to it. I love being different, but I
didn’t always. Being different caused me more than pain. It caused me to grow
up simply, stoically believing that there was something fundamentally wrong
with me; that I was “less than,” unworthy, and incapable. I wasn’t trying to be different. I simply was. I
simply am. This is the only way of being I’ve ever known. I can’t…not be this way. I don’t even want to
not be this way.
So,
now what? Soldier on, I guess, secure in the knowledge that at least most
people like me for my weirdness now instead of hating me for it. I suppose I could
pursue an official diagnosis, but to what end? Having a label to put on it
would have been useful when I needed social skills and executive functioning
support as a child. But I doubt it would make much difference in my life now,
other than providing me with a different sort of soapbox.
Which
leaves me pretty much where I was before I was aware of any of this. We’re here, we’re weird, get used to it.
1 comment:
Beautifully written. You have summarised so many of my own feelings. Hope you are feeling OK now.
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