Monday, December 19, 2011

Unspeakable Joy

I stumbled upon an article recently written by a person with autism. I've read more of her writing since then and it's startlingly frank. She wants to be called autistic rather than the more PC-term "person having autism." She decries the common practice in special education of forcing autistic kids to keep their hands calm; bodies quiet. She is part of the neurodiversity movement, which advocates that people with autism should be allowed to be and express who they are rather than suppress their personalities to gain acceptance in the neurotypical world.

Sometimes all of this is a bit much for me. If a child never learns to keep her hands quiet, for example, how will she ever learn to do school work or focus? And if we don't to some extent teach our children how to make their way in this so-called neurotypical-dominated life, are we not subjecting them to ridicule and abuse? This isn't to
excuse such abuse -- it's just acknowledging the reality that if you, say, let your child make unique noises and body movements whenever she wants to in public, ridicule is going to happen.

But then I read this article called "The Obsessive Joy of Autism." In it the author shares about her sheer joy at doing sudoku puzzles or watching the show
Glee. She writes:

I flap a lot when I think about Glee or when I finish a sudoku puzzle. I make funny little sounds. I spin. I rock. I laugh. I am happy. Being autistic, to me, means a lot of different things, but one of the best things is that I can be so happy, so enraptured about things no one else understands and so wrapped up in my own joy that, not only does it not matter that no one else shares it, but it can become contagious.

This is the part about autism I can never explain. This is the part I never want to lose. Without this part autism is not worth having.

Neurotypical people pity autistics. I pity neurotypicals. I pity anyone who cannot feel the way that flapping your hands just so amplifies everything you feel and thrusts it up into the air. I pity anyone who doesn’t understand how beautiful the multiples of seven are, anyone who doesn’t get chills when a shadow falls just so across a solitaire game spread out on the table. I pity anyone who is so restrained by what is considered acceptable happiness that they will never understand when I say that sometimes being autistic in this world means walking through a crowd of silently miserable people and holding your happiness like a secret or a baby, letting it warm you as your mind runs on the familiar tracks of an obsession and lights your way through the day.

As I read I immediately thought of writing this a little over a year ago.

And then I saw my seventh grade self. This was 1987 and I had a new love: Kirk Cameron and the sitcom Growing Pains. Every Tuesday night at 8:30 I would position myself in front of the TV with my tape recorder (our VCR had inconveniently stopped recording around then) and would tape the intro to the show and theme song. During the next 20-something minutes I could not move from the television. I needed to soak in every minute. After I would write a brief synopsis of the episode in my diary and give it a grade as well. Then during the week I would play what I'd recorded while in the privacy of my room. I'd sing the theme song and memorize the script. And when I was doing that, when I heard those opening notes of "Show me that smile again..." I felt such an inexplicable joy. In those moments, indulging my obsession, if you will, I was no longer a nerd with few friends who cried too much and didn't know a thing about fashion or make-up.

When I remembered this, I thought about the traces of autism that rest in many of us. I thought about the times I've listened to a song over and over because a certain chord in a certain spot made me impossibly happy. I thought of the way many times at parades when I see veterans marching and American flags I feel this sense of both pride and sensitivity and nostalgia that I almost always have tears in my eyes without being able to define why. I thought how the simple aroma of basil can transport me to my grandmother's garden and her weathered hands lifting the leaves to my nose and the moment is nearly palpable, I'm almost living it again, and I'm flooded with something that feels absolutely beautiful.

To acknowledge these feelings, and that they may be just an inkling of what someone with autism feels, just a touch of the way their senses are impacted by the seemingly mundane, helps me see.

Ethan went through a hand-flapping phase, awhile back. I remember being taken aback, worried about him regressing, worried about how he might look. I think if he happened to pick up the habit again I might still have those feelings.

But I might have a little more compassion and understanding as well. "It's not that people with autism don't feel anything," someone once said to me. "It's that they feel too much."

More people need to know this. And maybe, in some small way, more people need to be just a little bit more autistic. If they were, maybe life would seem a little more beautiful and not quite as mundane.


Unknown said...

I needed to read this. Like you, I've wondered where on the spectrum I am when I obsess over the lyrics to a song and play it over and over and over and over again just to hear them. I once taught a child with undiagnosed Asp. in the first grade. It was the hardest and yet most rewarding year I've taught. We have so much to learn. I can't wait to continue reading your blog!

Deb said...

Thanks for checking it out! It's true that most of us are at least a little "spectrum-y" at times. There are so many kids out there undiagnosed or misdiagnosed and I can't imagine the challenge it presents to teachers!

Anonymous said...

yes. we have so much to learn from them.

wonder if you saw this post?

Deb said...

Thanks for sharing that, Jeneil...I have checked out that blog a few times in the past but hadn't read that particular post. Beautiful!