Autism Vox

Dark and Light and Something Of Both

by Kristina Chew, PhD on July 28th, 2008

A glass half-full or half-empty?

A big awful mess of a mess on the carpet as yet another episode in the comedy of one’s life, or further evidence of the tragedy of life with autism?

Mirth or melancholy? (To put it a little more poetically.)

Mamma Mia! or Dark Knight—-the one (as characterized in the July 27th New York Times) a “sing-along cinematic travel brochure that set a box-office record last weekend for the opening of a musical” full of many a “peppy Abba song” in which heroine gets guy in the end, and the other a “bomb-a-minute postmodern comic-book spectacle from the Batman franchise” that can be described as “dysphoric” and rife with many a “malign word that [issuing] from that smeary rictus on the face of Batman’s nemesis.”

The title of the New York Times op-ed is Pick Your Poison, Dark or Light; the op-ed is about two hit summer movies which project decidedly different world views.

And often it seems that depictions of life raising an autistic child, of being autistic, and of autism itself fall into one “camp” or other. It’s terrible awful, a nightmare without end, and you wish to cure the living daylights out of a child. Or: There’s a world of things one would never have known had one not had such a lovely, different child, and learned to accept this different, unexpected life.

It’s not easy living with autism, not easy being disabled. Parents can’t help but to worry about their children, but when your child is disabled and will very likely not be able to be “independent” in so many ways, the fear can set in and things can look, can be, really really dark.

Just last night Jim was speaking to an old friend, who said something to the effect of, so was there a chance that Charlie might snap out of it. “It,” being autism. “Charlie’s Charlie,” Jim responded: This friend and his wife saw Charlie in the, yes, dark days when Charlie’ just been diagnosed. They had come to visit us at the beach and Charlie had just woken up from a nap and ran up and down the deck screaming, looking through the slats of the railing. That was an agonizing vacation in which family and friends showed up with a kind of dutifulness and sighed and spoke nervously, and after which one dear friend (who’d tried everything he could think of to get Charlie to play and engage with him) went home and to see his mother and wept.

We went down again to that beach on Sunday. While it was sunny and warm on Saturday, and Charlie looked ready to swim up and down the shore for quite a long time if he had to, on Sunday the sky was gray and black; rain came down in buckets and hail; puddles were mini-lagoons. We had gone down to see friends and Charlie insisted on staying in their driveway, eyes on the ocean a short walk away. At first we stood in the car port and talked and then, when it was only sprinkling a little, a small party ventured out, Charlie leading the way.

It was windy and wet and the sand felt like gritty clay. Charlie took off his blue sweatshirt and shirt and hovered beside the water, and everyone started smiling. Our friends had been sitting in their rented house for most of the day, sad that the storms kept them from enjoying the beach and unsure of venturing out in the rain. And while the beach under a dark sky is not a spot to bask and loll, it’s still something to see and be in, and we were all happier and energized as we walked back, and they thanked us for getting them out.

Both dark and light; not just dark and not just light; but some deeply, richly hued mix.

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