Autism in Daily Life: Big Challenges and Small Miracles

By Katharine Beals
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autistic boy looks out windowOne afternoon last spring Nancy walks into her studio and finds it ransacked. Portraits and still-lifes are smeared with cadmium red. Paint tubes are smashed, as are the Krispy Kreme donuts and homegrown squash that she brings to life on canvas. A lock left unlatched for five minutes; a studio laid bare to the visual and tactile cravings of her severely autistic son. Hours pass before Nancy has the heart to mop up.

A few days later she milks this story for all its humor over tea in her kitchen, the setting for many long talks, while our kids whiz around in the background. We met on the first day of kindergarten-the kindergarten, that is, of our two non-autistic sons. Quickly we discovered our many points in common. We both grew up in coastal Connecticut, started dating our husbands before we hit 20, religiously breastfed all our children. We both love bitter-sweet humor. And we both have autistic sons.

“Jason, turn the light off. It’s light outside,” I say, interrupting Nancy. My son is back at the kitchen switches, giggling in my direction. “Jason, turn the fan off. It’s too cool.” Sighing, I get up and try to engage him in the finger paints on the nearby play table.

Nancy and I have also discovered our differences. She paints; I program software. She intuits things; I analyze them. She copes with life’s hardships by coaxing onto canvas the beauty of daily life, filling warm interiors with the fruits of her home-her plants, her children, her many guests. I cope by programming linguistic software, working in isolation in a realm of pure logic, the one place where I feel totally in control of whatever goes awry.

Oddly reflecting these differences are our autistic sons. Henry, now ten years old, the fraternal twin of a non-autistic boy, is a sensualist artist unto himself. He drifts about in the here and now, in a world utterly beyond language. In sifting through cheerios, or pouring out undulating columns of olive oil, or chewing a stick of blue chalk into paste to smear on a wall, he seems to attain a transcendental state of the sort that many determined meditators can only aspire to.

Jason, now eight, the younger brother of my non-autistic son, prefers buttons and switches to textures. At first it was just fan buttons and light switches; now he’s branched out– to clocks, radios, refrigerators, burners, faucets, and thermostats. And all along, people’s buttons: the buttons, that is, that make us spring up and chase after him, time and again, before he throws clocks down stairs, turns the thermostat to 90, or locks himself in the bathroom and turns the faucets full blast.

Nancy and I see in our children two opposite sides of the multi-faceted syndrome of autism, and of the multi-faceted challenges that come along for the ride.

As with many low-functioning autistic kids, Henry’s sole interest is in sensory stimulation. When therapists and family members aren’t attending to him, he prowls about restlessly, searching for the next thing to get into. Since most of what surrounds him shouldn’t be poured, sifted, chewed, smeared or smashed, Henry is an accident looking to happen.

The more so because he simply cannot grasp what’s forbidden. Nancy once left briefly unattended her youngest son’s birthday cake. When she returned and found Henry wiping his palm across the frosting, obliterating her painstaking decorations, she found herself crying out “No!” But then Henry turned to her with a heart-breaking look of shock and hurt, aware now that he must have done something wrong, but totally bewildered about what it was.

And so Nancy tries to remember to relock the pantry, the refrigerator, the medicine cabinet, the studio. But as Henry is always on the lookout for unlatched locks, and as the family cannot, will not, barricade themselves into a fortress, they must endure several messy mishaps per day. Nancy takes it in stride, milking Henry’s latest escapade for all its humor, but events like his periodic trashing of her studio are thoroughly demoralizing.

Jason, unlike Henry, knows exactly what makes us yell. But, like many autistic kids, he sees little reason to please us. Unable to read our facial expressions or tones of voice, he feels neither the heat of our anger nor the warmth of our praise. We are, first and foremost, complex pop-up toys whose responses are most delightfully predictable whenever he breaks the rules. Turn the volume way up, and we spring up to turn it down. Run into the street, and we come charging after him. Poke our eyeballs while we hold him, and we promptly release our grasp.

If only he understood more, we could explain what’s right and wrong, and why. But for all his mechanical acumen, Jason struggles with the simplest of sentences.

Month after month, as Nancy and I swap stories over tea, we wonder: how can we use our artistic and analytical talents to find meaning in the surrounding chaos?

Finally this past spring, mopping up her studio, Nancy hears her calling and wins a Philadelphia Independence Foundation Fellowship to pursue it. Her mission: to capture on canvas the beauty of children with handicaps. Most challenging, because it is so subtle, is the look of autism: that distant daze, those faintly exotic poses.

Meanwhile I start programming software to teach language to kids like Jason. With computerized feedback, he now pushes buttons not just to turn things on and off, but to construct meaningful sentences. Applying what he learns to spoken conversation, he expresses ideas and questions of growing complexity: Where did the moon come from? What happens if you don’t wear clothes? Most miraculously, his behavior improves. Suddenly conversing with us is more interesting that simply pushing our buttons.

The challenges of autism persist for both Nancy and me. But our families, like all families with special needs, persist as well, squeezing, smearing, and pushing small miracles out of our daily lives.

In addition to parenting her three children, Katharine Beals creates software for autistic children at autism-language-therapies.com. Over forty families are currently participating in a free software trial, many of them reporting impressive progress.

Nancy Bea Miller is an award winning painter whose subjects include children with special needs. Her website can be visited at nancybeamiller.com.