Mark Osteen - One of Us: A Family’s Life with Autism

One of Us

A Familys Life with Autism

Mark Osteen

University of Missouri Press
Columbia and London

Copyright 2010 by

The Curators of the University of Missouri

University of Missouri Press, Columbia, Missouri 65201 Printed and bound in the United States of America

All rights reserved

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Cataloging-in Publication data available from the Library of Congress

ISBN 978-0-8262-1902-2

ISBN 978-0-8262-7237-9 (electronic)

This paper meets the requirements of the American National Standard for Permanence of Paper for Printed Library Materials, Z39.48, 1984.

Design and composition: Jennifer Cropp Printing and binding: Thomson-Shore, Inc. Typefaces: Minion and Memoir

An earlier version of chapter 11 was published in Autism and Representation, ed. Mark Osteen (New York and London: Routledge, 2008), and is reprinted by permission; chapters 12 and 15 were first published in WeberThe Contemporary West. Excerpts from the following are reprinted by permission: Bye-Child, from Opened Ground: Selected Poems 1966-1996, by Seamus Heaney, copyright 1998 by Seamus Heaney, reprinted by permission of Farrar, Straus, and Giroux, LLC and by Faber and Faber, Ltd.; Death of a Young Man by Drowning, from The Journals of Susanna Moodie, by Margaret Atwood, copyright 1976 by Oxford University Press, reprinted by permission of Houghton Mifflin Harcourt Publishing Company, all rights reserved, and with the permission of Curtis Brown Group Ltd., London, on behalf of Margaret Atwood, copyright O. W. Toad, 1970; Little Gidding, from Four Quartets, by T. S. Eliot, reprinted by permission of Faber and Faber, Ltd.; A Martian Sends a Postcard Home, by Craig Raine, copyright Craig Raine, 1979; Prisoners, by Denise Levertov, from Oblique Prayers, copyright 1984 by Denise Levertov, reprinted by permission of New Directions Publishing Corp.; Spring and All, Section 1, by William Carlos Williams, from The Collected Poems: Volume I, 1909-1939, copyright 1938 by New Directions Publishing Corp., reprinted by permission of New Directions Publishing Corp.

For Cameron

Contents

Acknowledgments

The author of a book so long in the making accrues debts to many people. Quite a few of those peopleCams teachers, therapists, aides, and doctorscontributed immensely through their expertise and care for our son. Instead of thanking them all by name here, Ive expressed our gratitude in the pages within. Below are the folks who helped directly with the manuscript.

Martha Woodmansee first suggested that I write this book; Lois Wallace provided an honest and helpful assessment of the first draft; Tracy Bernstein supplied much good advice at a later stage. I am extremely grateful to them, and to my colleagues at the Loyola University English and Writing departments, particularly June Ellis and Bryan Crockett, who read and tactfully commented on earlier versions of the manuscript. James Buckley, dean of the Loyola College of Arts and Sciences, furnished essential support both personal and financial. Big thanks are also due to Katherine Fausset for believing in this book and for suggesting the revised ending. Even bigger thanks go to my friends and fellow writers Scott Allen, Ned Balbo, and Ron Tanner for their editorial suggestions and steadfast encouragement. In addition to improving the writing in a multitude of ways, they also gave me the faith to forge on.

My greatest thanks, of course, go to Leslie. In this case, the clich is literally true: One of Us wouldnt exist without her. Her courage, humor, intelligence, and love make her the heroine of this book and of my life.

What man is there of you, whom if his son ask for bread, will he give him a stone?

Matthew 7:9

Prologue

The Other World

Today is July 4, 2000. My son Cameron turns eleven. For him, as for most kids, its a big day. But we havent planned a picnic, and Cam wont be playing Nintendo, soccer, or Little League baseball.

Instead, hell spend the day watching the same videos and listening to the same songs he has enjoyed since age three, then take a trip to the playground or the supermarket. Later well share birthday cake and open his presents: an electric paper shredder and a toy keyboard. After his dinnerwhite rice with soy sauce, a few pieces of chicken, some grapeshell watch Mary Poppins for the five-hundredth time. In most respects, Cams birthday will be just like every other summer day. And thats exactly how he wants it.

Cameron has autism, and for him our everyday world is a chaotic whirl: noises inaudible or innocuous to us drive him crazy; shadows and strings constantly distract him; words break up like radio signals drowned out by static. Any change in his routine makes Cam anxious, so my wife Leslie and I reshape our world in his imagevisiting the same places, serving him the same foods, playing the same videos and CDs. In his world, a few insignificant objects become essential, as if imbued with magical properties, while objects significant to other people carry no meaning for him at all.

But Leslie and I also inhabit the normal world, so dwelling in Camerons world is difficult. We cant always tell what he wants and often cant make him understand us; we feel oppressed by his rigid routines and his inability to learn. We are saddened by his chronic pain, the result of trying to fit into a world not made for him. Because the neuro-typical world demands that Cam live in it, he clings to those magical objects that cradle him in their consoling captivity.

Here is how life works in Cams world.

He is fascinated by plants. But his botanical interest is less a scientists than a locusts: he spends hours stripping the leaves from bushes and trees. Full of trees and rimmed by a forsythia hedge, our yard provides plenty of raw material, and, if left to his own devices, hed denude it within days. If we look away for a moment, well find him three yards over, pulling leaves from a neighbors dogwoods.

And so after lunch on his birthday, we visit a nearby playground, where at least he wont trespass or damage a neighbors prize flowers. For us, the word playground is somewhat of a misnomer: Cam doesnt really play. In his eyes, the playground is simply a space full of plants helpfully arrayed for destruction. He roams, breaking branches from bushes or saplings. After snapping off a twig with his right hand, he runs his left hand along its length, briskly cleaning the limb. He repeats the action over and over, relentlessly. After husking the handiest bushes around the perimeter, he hops on the swings for a few minutes, as if to catch his breath, then returns to his botanical operations.

Why does he destroy plants? The professionals call these behaviors self-stimulation, or stims, or stereotypies. Its as if an endless loop in Cams brain places him on a treadmill he can neither shut off nor jump off. Yet his actions arent just automatic: if you watch closely, you see that he carefully selects which stems to pull, having learned which plants have barbs or thorns, which are woody or limp, and which offer the precise degree of desirable resistance. Beyond these choices, however, each action is a near-perfect copy of the previous one. His work yields a purified present, a limbo where he can live more comfortably.

Above us, on the ball field, a father pitches softballs to a boy about Cams age. The father maintains a stream of encouraging patter, coaching the boy to stay back and keep his eye on the ball, reminding him, If you hit, run! Dont wait to see where it went.