A Proposal: One of Us...

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Two snapshots from One of Us: A Family's Life with Autism:

     My son Cameron's hands embody his disability. Large and powerful, with long, elegantly tapered fingers, they could be a guitar player’s hands, but instead dangle from his arms like a yearling colt’s gangling hooves. They show no sign of labor, nor a single callus. He can't write his name with them. He can't show you three fingers. He can't even make a firm fist. Neutralized by his disorder, they are animated mostly by tics and violent gestures. They are handicapped.

     Yet he uses his hands skillfully for what clinicians call "self-stimulatory behaviors," or stims. Different stims have obsessed Cam at different times: at age three and four he went through a Stacking Stage; at ages five and six, the Climbing Craze; then came the Wastebasket Era, when he became fascinated with sitting in nested trash cans. From ages nine through twelve his favorite pastime was to roam our yard, pulling branches from shrubs or trees and stripping their leaves. With relentless efficiency, he’d snap off a branch with his right hand, then run his left hand along the stem’s length, briskly cleaning the limb. He repeated the ritual with another branch, each action a near-perfect copy of the preceding one. Then again. Then again. From twigs his hands fashioned a perfect, unchanging autistic planet.

     Indoors, another stim took over: The String Thing. This habit began at age six, when Cam would come home from school wearing only the top portion of the knit shirt he had unraveled thread by thread, its vestiges hanging about his shoulders and arms as if he’d sprouted through them like the Incredible Hulk. This stim vanished, then returned with a vengeance when he turned ten.

     Within days he destroyed his shirts, socks and underwear. We bought him natty sweaters; he tore them up. Then he destroyed his blankets. We purchased new ones made of tough artificial material; they lasted exactly seven minutes.

     Then Leslie had an idea: whenever Cam began to tear fabric, she offered him a white shoelace. His clothing was saved by The Shoestring Solution.

     Here’s how it works.

     After plucking a thread from the weave, wrap the filament around your fingers, stretch it, then run the taut band between your teeth like floss. Twang! Repeat this ritual until you’re surrounded by a mound of fibers, each one rendered into gossamer fuzz. Finally, stuff the wad into your mouth and chew it like gum.

     Clinicians see "stims" as mere symptoms, but that’s not the whole story. They also serve an important function—they are "bandages" that protect Cam from the threatening environment, or soothe his anxious nerves. They furnish order, structure, safety. There is even a strange integrity at work: with a string, he’s Robinson Crusoe on his island, building a private utopia with what’s literally at hand. No one shares the island; he’s unreachable, self-involved, impervious. Yet his ability to remake the world in his own image is unmistakably human. In such seemingly alien behaviors Cam reveals that he is one of us.

***

     On a summer day Cam and I make our regular visit to the swimming pool. He walks a few feet ahead of me on a swimming pool’s concrete lip; young people sun themselves nearby.

     Suddenly Cam claps loudly, yells "Aaah," darts to his left and snatches a handful of a lounging girl’s long blonde hair.

     "Yow!" she shouts, tapping vaguely at Cam’s hands. But he won’t relinquish his hold. For fifteen seconds I unwind the girl’s hair strand by strand, all the while coaxing Cam to let go. When I finally free his hand, he takes with it a fistful of ratted hair.

     "I’m sorry," I say. "Cam has autism and gets fixated on things. Sometimes it’s hair."

     "It’s okay," she says.

     Later that same summer the whole family revisits the pool. As Leslie and I prepare to get wet, Cam runs toward the deep end.

     "Cam, that’s too deep. Come back to the rope," I shout after him. "Cam!"

     Ignoring me, he jumps into the pool at the eight-foot mark. Stunned, my wife and I watch our son’s head sink beneath the surface. My heart stops: he can’t swim! Then the spell breaks, and I dive in to save him. As I near the spot where he went under, Cam suddenly pops up, giggles, and makes his way in a modified dog paddle toward the side. Somehow he learned to swim on his own.

     In the water, there are no rules, no expectations. When swimming, he sloughs off the weight of autism and finds himself. He becomes not a disabled boy who can’t write or speak, but a person who fashions his own world. He even lets us share these waters at the edge of his island. In such moments, his soul burst its doors, throws off its bandages and dances like a bomb. In such moments—more glorious because so rare—we are together and free.

******************

      What is it like to live with a half-grown child who can't speak, who frequently erupts in violent tantrums, and spends hours making hand shadows or stripping shrubs? How do his parents try to bring him out of his private world? How do they keep their sanity and preserve their love for him and for each other? One of Us: A Family’s Life with Autism answers these questions by tracing the first twelve years in the life of my son, Cameron, who has severe autism. It ends as my wife Leslie and I make the wrenching decision to send him to a full-time residential school. 

     Autism is a developmental disorder affecting language acquisition and use, behavior, and social interaction. Over the last ten years, autism diagnoses have increased alarmingly, from an estimated 1 out of 3,000 births to the currently accepted rate of 1 in 166 births. Discussions of this apparent epidemic and its possible causes (particularly toxins such as thimerosal, a mercury compound found in childhood vaccines) now appear daily in newspapers, popular magazines, and on television.

     Autism has also become a hot literary topic: Mark Haddon's novel The Curious Incident of the Dog in the Night-time, narrated by a high-functioning autistic teenager, recently rode the best-seller list for over a year; memoirs of recovery by autistic people or their family members have swelled the autism library. But as well-meaning as these books may be, they don't tell the whole truth about autism. Stories of recovery---a rare outcome in real life---not only ignore the vast majority of autistic people and their families, but may even do harm: desperate parents whose children haven’t recovered resort to untried, spurious or downright dangerous therapies, and the general public comes to perceive autism as a set of charming eccentricities whose worst manifestations disappear by applying some magical treatment. 

     The story of the severely autistic child---the child with entrenched, destructive behaviors, impaired cognition and little or no language---has not been told. One of Us is that story. With honesty leavened by humor, I recount our family’s sometimes harrowing, sometimes hopeful struggle to diagnose and treat Cameron’s autism—to teach him and learn from him.

     One of Us shows that autism is not just an individual disorder, but a family condition that permanently changes everyone involved. Hence, the book is not only Cam’s story; it’s also the story of his parents’ progress through denial and anger to acceptance, and the story of a sorely tested marriage that survived through tenacity and trust. Though Cam was not cured, the book is not a chronicle of failure. It ends on a note of hope, as Cam’s departure for a new residential school offers the whole family a fresh start. One of Us portrays a rare sort of victory: the triumph of love over tremendous adversity.