When our daughter Shannon was labeled autistic at twenty-one months, racism wasn’t in my thoughts. Being white, it rarely is. Autism, though, was pervasive.
Prior to parenthood I’d led a criminally contented life. Raised in a loving family, I graduated debt-free then lived everywhere from New England to Alaska to San Francisco, happy in life, happy in work. Shannon brought more joy, though early on there were omens, then more.
As a stay-at-home parent who didn’t know much about kids I simply thought she was a difficult baby, then a toddler, but after a while even I recognized it. Kids far younger than her were seeking love, attention, story, while Shan packed away everything she was becoming behind downward eyes.
Sleep, too, was elusive – intermittent for Shan, jumpy, scant, and broken for my wife Karen and me. Apart from water and motion, everything undid her, and the tantrums came like pre-radar hurricanes – crushing, sudden, unexplained.
A month after the diagnosis Karen delivered our second daughter, Flannery, condensing the claustrophobia. Karen worked late, and I often walked the girls out in the open Rhode Island air to quell what I could quell, but Shan was a loose-pinned grenade. Still for now, maybe, but God knows.
One August evening I had them at the beach, where the lingering heat held a crowd. Shan had been calm, scooping sand, toeing waves, while strapped to my chest Flannery giggled and drooled. Then the pin fell out.
Maybe sand crept in her diaper. Maybe she stepped on a shell sliver. Maybe all that blockage needed release, God knows, but as it always did the eruption spun heads for a hundred-yard radius. Motion was all I had, and hanging Shan down my back upside down while cupping Flannery’s chin with the other hand, I jogged as best I could for two hundred yards to the beach’s corner, hoping to find a tide pool and the soothing effects they usually provide. By the time we reached, though, the inverted jostling had worked, and I set an already calm Shannon down by still water where she stirred a hand, fixed.
With multiple such fits a day, it had been a long month, and working on weeks of an hour’s sleep here, two there, I sat in the gravel with Flannery while something I later recognized as empathy flushed in. If I didn’t have the boils and blisters, the torched lands and slaughtered offspring, for the first time I sensed something of Job’s despair, unwittingly clamped, as he was, in God’s dark hands.
I’d never understood suicide, even scoffed at it, but looking over the ocean I could see it, feel it, the sense of being stuffed in a jar not of your choosing. It lasted a moment, but a moment was enough, and three years later when the Ferguson riots uncorked two generation’s worth of bottled-up American racial fret, something similar seeped in.
It wasn’t the only time Shannon provoked a racial awakening, the first one was just happier, something elicited by her condition’s severity. We lovingly call her The Spectrum’s Final Frontier, and we’re not far off. She doesn’t talk, has little receptive language, persists with jungle-at-night verbal tics, and bounds around like a jack rabbit. I’ve seen it in faces of every skin tone. People would certainly identify her as white, but due to what she emanates they don’t see a white girl. Shannon will never know she’s white. Or American. Or a woman, or any of the cultural confections that help define people before their actions do. She’ll just knows that she is, and such Edenic purity washes it all away – color, creed, everything – allowing us to glimpse a far less judgmental world. I’ve seen black people with Down’s Syndrome, Hispanic kids as autistic as Shan, and an array of others with an array of afflictions. The effect is the same. You see soul first, the rest second, and that only from habit.
Ferguson took it the other way, and only made sense through a prior incident. Sometime before – in Trayvon Martin’s wake maybe – David Brooks and the very recently departed Gwen Ifill discussed race. Ifill fruitfully dropped her objectivity to ask Brooks if he ever talked about race within his family. He didn’t. She smiled, warmly. You don’t have to. We do. It’s with us. Always.
When I think about race it’s distant, nearly academic, and never personal. I’m not qualified to say what white privilege is or to what degree it exists, but Ferguson finalized what Ifill initiated and her assertion only made sense because of Shannon.
If nothing else, white privilege frees you from color. I’ve never thought about my skin tone because I’ve never had to. Withstanding racism doesn’t define me. Absorbing autism does, though. We’re an autistic family and always will be. It’s dyed our lives and thoughts, our philosophy and theology, encases us in its slightly acidic plasma. It sets our sleep patterns, our schedules, impedes our ability to earn money, drains it away in equal shares, profoundly affects how we relate to others, the world, and each other. We go to most public places, but not others. Flannery will live out her life surrendering to Shannon’s autism or thrusting her will upon it, a chronic cage-match.
I’ll never understand what Ifill meant, to have color be with you, always. I’m not black. If, though, racism even distantly resembles the dominion that a grossly affected family member imposes, then I can imagine with at least parallel empathy how frustrating, how maddening, such an encumbrance might be, and there is, of course, a galactic difference. Shannon is our child. We chose to have her and she came the way she came. We adore her, reveling in the numberless things she teaches as well as simply who she is. Color isn’t chosen, but it does define, and in America that’s rarely well. I don’t have that burden, but through Shannon at least have a piddling sense of what a burden it must be.