Saturday, January 24, 2015

Apple and Tree

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:

Jess64 said...

Beautifully written. You have summarised so many of my own feelings. Hope you are feeling OK now.

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