Authors: Donna Williams
Also by Donna Williams
Copyright Â© 1994 by Donna Williams
All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without permission in writing from the publisher.
Grateful acknowledgment is made to Harcourt Brace & Company for permission to reprint two lines from “East Coker” in
by T. S. Eliot. Copyright Â© 1943 by T. S. Eliot and renewed 1971 by EsmÃ© Valerie Eliot. Reprinted by permission of Harcourt
Brace & Company.
Published by Three Rivers Press, New York, New York.
Member of the Crown Publishing Group.
Random House, Inc. New York, Toronto, London, Sydney, Auckland
THREE RIVERS PRESS is a registered trademark and the Three Rivers Press colophon is a trademark of Random House, Inc.
Library of Congress Cataloging-in-Publication Data
Somebody somewhere : breaking free from the world of autism / Donna Williams.
1. Williams, Donna. 1963â â. Mental Health. 2.
AutismâPatientsâBiography. I. Title.
RC553.A88W555Â Â Â Â Â Â Â Â 1994
[B] Â Â Â Â Â 93-30412
To my younger brother and all the gadoodleborgers who never forgot how to simply be, and to all those who did who may one day rediscover the few things that did come naturally to them.
n the edge I ask myself, what will I lose,
To have lived in the depths of “well below zero,”
I grasped the tools to climb out,
And scream loudly to the world,
That I was all that I was, before never enough,
That with all I was, it wasn't fair enough
That I stayed there: a nobody nowhere.
This is the story of how one picks up the pieces after a war. It is a story of disarmaments, peace treaties, and reconciliations. It is a story of learning how to build a somewhere out of a nowhere and a somebody out of a nobody. It is the tale of a journey to find how to build castles in the air and make them real, of building bridges between the dream to fly and the being able to do so. It is the story of somebody somewhere.
Within each of us there is a stranger (or strangers) lurking in the shadows of our own subconscious minds. They know
us but do not know us. And the only thing that keeps them “back there” is a sense of self (self-possession). Not all of us are born aware we have this.
copy of the manuscript lay on the floor as I packed the tea chest.
, the story of my life and my life's lives, was something of an epitaph. It marked the end of an era and the start of a life I could now begin to own freely.
That manuscript, those sheets of paper, had been both my best friend and my worst enemy. They had both saved me and destroyed me. A copy was in the hands of a possible publisher. Another copy would come with me back to Australia, back to the place of its roots. The other copy of the manuscript would live in my tea chest here in London. My stomach twisted as I put it into a big brown envelope, sealed it up, put it in the tea chest, and used almost a packet of nails to close it. The manuscript was on the verge of being made public to the world and I was still paranoid that someone might look at it.
Letting anyone read it had been a desperate move. Exposed to the enemy, what I had known as “my world” would never again be free from the contamination of its exposure.
“My world” was a spiritual body. It had been my home, my self, my life, my entire system of making sense of that bastard place called “the world.” I had felt compelled to disown or reject any part of “my world” exposed or touched upon by “the world.” This was my law, a sort of decontamination procedure or safety valve for the maintenance of sanity within the confines of an inescapable cage. If I had
a crystal or other knickknack I considered part of my world because I had genuinely chosen to like it, and if it was then seen or touched upon by anything in “the world,” I would no longer own it. This law went so far as to govern my every smile or look, my own articulation and accent, my tastes, my own way of moving, thinking, wanting, and my entire perception of who Donna was. Once seen or touched by “the world,” these self expressions became instantly disowned. What was left in their place was the nothingness of denial or yet another addition to an endless repertoire of “the world” faÃ§ades. I could share only so long as nothing I shared or the way I shared it was “me.”
Yet I had come to see that I could no longer stand life in my gilded cage, my straitjacket of knots within knots within knots.
I had confronted my fears one by one and thrown them to the wolves to prove that I was bigger than the fears that compelled me. The ultimate daring of all fear would be to throw “my world” into the jaws of “the world.”
“My world” was contained in the pages of that manuscript and though the exposure would be a sort of self-inflicted soul-rape, I knew that after its publication I would be compelled to disown not just part of “my world” but all of it. I knew I could never accept “the world” without walls until I had thrown down my weapons. My possessiveness and secrecy of “my world” were the greatest weapons I had, weapons so strong that when I threatened to expose “my world” it would run from the grasp of my own conscious awareness and expression. Rejecting “my world” was like amputating my own limbs one by one without anesthetic, but it would have to be done.
After twenty-five years of wondering what sort of stupid, mad, or disturbed person I was, I had stumbled across a word that helped explain “my world.” That word was “autism.”
All I knew of the word had been the dictionary definitionâ“withdrawn.” So what, I had thought, knowing I had been withdrawn throughout much of my life.
From library books, I found a handful of conflicting theories. Throughout the ages, autism had gone from being seen as being caused by everything from possession by fairy spirits to bad parenting.
From psychosis to emotional disturbance. From retardation to a sleep disorder, and most recently as a developmental disorder occurring either before or shortly after birth that affects how the brain uses incoming information.
There is a bit of truth in most theories, but the total truth is probably to be found in none. Theories weren't relevant to me. What mattered to me was how my difficulties crippled and tied up the me inside.
Autism had had me in its cage for as long as I had ever known. Autism had been there before thought, so that my first thoughts were nothing more than automatic, mirrored repetitions of those of others. Autism had been there before sound so that my first words were the meaningless echo of the conversations of those around me. Autism had been there before words, so that ninety-nine percent of my verbal repertoire was a stored-up collection of literal dictionary definitions and stock phrases. Autism had been there before I'd ever known a want of my own, so that my first “wants” were copies of those seen in others (a lot of which came from TV). Autism had been there before I'd learned how to use my own muscles, so that every facial expression or pose was a cartoon reflection of those around me. Nothing was connected to self. Without the barest foundations of self I was like a subject under hypnosis, totally susceptible to any programming and reprogramming without question or personal identification. I was in a state of total alienation. This, for me, was autism.
I guess I had been one of the luckier ones. I had been both echolalic and echopractic, able to mimic sound or movement without any thought whatsoever about what was heard or seen. Like someone sleep-walking and sleep-talking, I imitated the sounds and movements of othersâan involuntary compulsive impressionist. This meant that I could go forward as a patchwork faÃ§ade condemned to live life as a “the world” caricature. Others called “autistic” who were neither of these things sometimes paid the price of being incapable of any sound or action at all. They, at least, probably maintained a sense of self. Ironically these people, and not those like me, were the ones who were labeled “low functioning.”
The “post-operative” debris now lay around my feet. The echoes of the life I had lived as the characters I called Carol and Willie (my “the world” faÃ§ades) stood as pathetic reminders of just how expensive cheap acceptance had been in “the world.” Buried behind these faÃ§ades, I had been suffocating in a self-made mind-house with defenses to cover defenses to cover defenses. This was “my world under glass,” a place with reinforced invisible glass windows, a self-made womb to replace the womb I had now outgrown and through which I had been able to view “the world” as it sat back and enjoyed the show. But the windows of “my world” had been broken and I was left rawly exposed to the enemy. In my vulnerability, I had used my final defense. I had laid myself bare at its feet. In doing so I had shattered the impenetrability of the characters, an impenetrability dependent upon the self-deception that I had no self beyond these stored repertoires. I had shattered the image, and in doing so threw down every weapon that had kept me safe for twenty-five years. The cold wind of the unknown was blowing in brutally through the holes in my broken glass walls.
What I had known of closeness were the memories of a tapping upon glass, the glass of my own rock-solid, invisible walls. I had had a compulsion to outrun emotion. The compulsion had led to a way of life where my best friend was my mirror image, the only person with whom I could be my real self.
I had also created a theoretical “the world” family; a collection of selective memories that made my family look like the Brady Bunch. “This family” hid the realization of the horror story that was “the real reality,” and allowed Carol's repertoire to include the role of being somebody's darling child.
Roses hung over the fences of the long London street I now walked along on my way to the house where my tea chest lived. Listening to the sound of my feet, I reached out, picked a petal, and shredded it. The wet strawberry color covered my fingers as I broke the petal apart, rolled the bits, and gathered them in the center of my palm. My nose zoomed in on them like a camera taking a photograph and
I took a long breath. I was swept up in the smell, becoming part of the rose it had come from.
Too aware of the world around me now, I was such a step up from oblivious. Yet now I felt inhibited, too inhibited to make the bits snow by throwing them over me. My hand down by my side, I let them trickle onto the ground as I walked along. They would be a path for any others like me to recognize there was another like them who had come this way.
I was scared to walk alone now. It had been different when Willie was around. I always knew Willie would take over if I couldn't handle things.
Carol and Willie were my “more real” inner family, the characters I had created and through whom I had lived two-thirds of my past twenty-five years.
Willie was a walking textbook, a fact accumulator in a world of facts. The first member of my self-contained, untouchable mobile family, Willie played the prison warden of the invisible cage I was safely locked into. Sometimes I would be let out for good behavior, but always on my jailer's terms. Willie was amazingly strong and afraid of nothing. Although I was only five feet two and little more than a hundred pounds, Willie had used my skeleton of a body to lift wardrobes and refrigerators by himself, heaving them on and off roof racks with the finesse of a professional mover. He was impervious to painâphysical, mental, and emotional. He was always in control. I could always withdraw into my prison, leaving him to function on automatic pilot. He would speed-read piles of books, memorize lists of facts, and impress people with stored-up factual garble until it was safe enough for me to come back.
Willie started life as a pair of green eyes under my bed when I was two years old. I was afraid of him, but I was more afraid and confused by what was happening in my house.
A pillow was pushed down upon my face day after day. You never knew when it would strike. You had to pull your jaw and bottom lip in in anticipation of the pressure on your mouth. “Calm down, have no need to breathe.” The feeling of fabric forced into your mouth would trigger the response to vomit. But vomit was
not allowed, nor was fear. Home was the place where spastics and retards “deserved to die.” Me? I would play “normal,” even if I didn't feel it.
The smell of smoke and alcohol, the screaming and swearing and smashing of things and people were general sounds of domesticity. The rhythmic moving of bodies before eyes too young to understand was part of education lying in wait. This was a “motivating” environment. In the absence of a want, you learned to perform one.
Steam rose from a tub of boiling hot water. The sound of fear in your own ears, a silent screaming. No words. No “no.” Who knew what words were for? Fear fought for domination. Learning to “disappear” had its advantages. Cigarettes seared flesh, and the belt buckle hit something again and again. “Cry and I'll fucking kill you.” The reminder that the cost of crying would be death made fear irrelevant. Fear was my worst enemy.
I felt secure in “my world” and hated anything that tried to call me out of there. I needed no rescue from the heaven of living death. Without “motivation” I would have stayed there. People, no matter how good, had no chance to compete. My reflection in the mirror, with its total predictability and familiarity, was the only person who came close. I would look into her eyes. I would try to touch her hair. Later I would speak to her. But she was stuck forever on the other side of the glass and I couldn't get in. I didn't blame her. It was pretty crappy on this side.
Sleep was not a secure place. Sleep was a place where darkness ate you alive. Sleep was a place without color or light. In the darkness you could not see your reflection. You couldn't get “lost” in sleep. Sleep just came and stole you beyond your control. Anything that robbed me of total control was no friend of mine.
“The world” could force compliance even if it couldn't touch you. A mind that hadn't yet reached out for anything was being force-fed with what others called “life.” The subconscious mind began to store meaning that my conscious mind had not yet learned to reach for. I was still in a state of pure sensing without thought or feeling. Feelings that had not yet met conscious awareness were being triggered. There were no words for them or even knowledge of where
they came from. What poured in just sat there. The feelings were not ready.
There was a rip through the center of my soul. Self-abuse was the outward sign of the earthquake nobody saw. I was like an appliance during a power surge. As I blew fuses my hands pulled out my hair and slapped my face. They pulled at my skin and scratched it. My teeth bit my flesh like an animal bites the bars of its cage, not realizing the cage was my own body. My legs took my body around in manic circles as though they could somehow outrun the body they were attached to. My head hit whatever was next to it, like someone trying to crack open a nut that had grown too big for its shell. There was an overwhelming feeling of inner deafnessâa deafness to self that would consume all that was left in a fever pitch of silent screaming. And somewhere in that inner screaming, Willie became my refuge and escape, a way to relieve the overload without self-expression. Somewhere in there Willie and I became inseparably two.
The fact that we shared the same body never seemed unusual to me, although I faced accusations of possession. I had no reason to believe we were only one person. How could we be? We were so different.
Willie developed superficial emotions. It was good to be caring so in spite of his indifference, Willie cared. It was good to be interested so in spite of his lack of curiosity, Willie was always interested. It was good to be responsible so in spite of his detachment, Willie was responsible. But the only heart-emotion Willie had was anger. This he channeled into fierce determination, his motivation an ever-clinical, ever-logical sense of justice and equality.
Carol came along a year and a half after Willie. She took possession of the object that was my living-corpse body and shared it with “the world” in exchange for acceptance. Based on a little girl I met only once in the park, Carol could be seen in my reflection. My face had glowed with the discovery of a friend with whom I could feel safe and understood. Again and again I had walked into the mirror trying to get into Carol's world, but Carol would not give away the secret of how to succeed.