Copyright
Copyright © 2001 by Clara Claiborne Park
Foreword copyright © 2001 by Oliver Sacks
All rights reserved. No part of this book may be reproduced in any form or by any electronic or mechanical means, including information storage and retrieval systems, without permission in writing from the publisher, except by a reviewer who may quote brief passages in a review.
Little, Brown and Company
Hachette Book Group
237 Park Avenue, New York, NY 10017
Visit our website at www.HachetteBookGroup.com.
www.twitter.com/littlebrown
First eBook Edition: April 2009
ISBN: 978-0-316-07529-9
Contents
Copyright
Foreword
CHAPTER 1: Introductory
PART ONE: Talking
CHAPTER 2: “That is not sound”
CHAPTER 3: “When the time comes”
CHAPTER 4: “Guess what!”
PART TWO: Thinking
CHAPTER 5: “All different kind of days”
CHAPTER 6: “When I ten, that minus one!”
CHAPTER 7: “The hangman hangs by the clothespin because of new politeness”
PART THREE: Painting
CHAPTER 8: “The sky is purple-black”
PART FOUR: Living
CHAPTER 9: “Because can tell by the face”
CHAPTER 10: “I guess Darth Vader learned from consequences! Like me!”
CHAPTER 11: “Guess what! Some of the people at work are my friends!”
CHAPTER 12: Valedictory
Afterword
Source Notes
Picture Credits and Copyright Acknowledgments
By Clara Claiborne Park
The Siege
Rejoining the Common Reader
You Are Not Alone
Exiting Nirvana
To Jessy,
who once couldn’t talk and has spoken so much of this book
And to the memory of Ernest C. Pascucci
Foreword
In 1967 a remarkable book was published —The Siege, by Clara Claiborne Park, an account of her daughter’s first eight years. It was remarkable on several counts: it was the first “inside” (as opposed to clinical) account of an autistic child’s development and life; and it was written with an intelligence, a clear-sightedness, an insight, and a love that brought out to the full the absolute strangeness, the “otherness,” of the autistic mind. It also brought out how much an empathetic understanding could help to lay siege to autism’s seemingly impregnable isolation.
Jessy Park — “Elly,” as she was called in The Siege — is now past forty, and Clara Park has now given us a sequel that is, to my mind, more remarkable still. The Siege could only relate the beginnings of a life, whereas Exiting Nirvana gives us a story forty years long, the whole of Jessy’s unfolding from the almost mute eight-year-old she was in 1967 to the richly gifted, though still clearly autistic, human being she is today.
Over the years the Parks have studied as well as loved Jessy. They have kept detailed records of every stage of her development — the development of her language, her emotions, her interests and moods; of her capacities (or incapacities) for understanding other people, the social world; of her capacities for logical and systematic thought; and, not least, of her varied and singular (and sometimes hugely complex) obsessions and “systems.” There is more “data” on Jessy, I suspect, than on any other autistic human being who has ever lived. And from this richness, Clara Park — a superb observer no less than a devoted parent — has distilled a lucid and beautifully wrought narrative, full not only of her own deep observations and thoughts, but of poignant and funny anecdotes of every kind (“A book should consist of examples,” wrote Wittgenstein), and the strange, mad poetry of Jessy’s own words. It reveals the life and mind and world of an autistic person with a depth and detail never before achieved.
It shows, too, how at least some of what might be called the defects or strangenesses of autism can also become singular strengths. Jessy is incapable of lying, or of detecting lies; the concept of deceit is unavailable to her. She herself is such an innocent that she cannot comprehend the concept of innocence. She is extremely literal-minded. She was wholly incapable at first — though is now capable to a small degree — of putting herself in others’ shoes, of sensing their positions or perspectives, for it seems to be of the essence with Jessy, as with all autistic people, that she is “mind-blind,” or lacking in so-called theory of mind.
Jessy has been subject, from an early age, to sudden enthusiasms (her word) or obsessions (the medical word, which she has happily embraced), going from numbers and colors and unusual sounds and words to radio dials and heaters, to certain roads and houses, to atmospheric anomalies and the night sky. These obsessions, elaborated by an incessantly active and systematizing mind, have led Jessy to construct amazingly intricate systems in which weather, mood, flavors, colors — a dozen variables — are all interconnected and correlated with one another. (Jessy can instantly learn a word like “correlation,” because this is already a concept she possesses, when, in contrast, she cannot read the expressions on people’s faces, or the intentions in their voices, cannot comprehend why she cannot instantly evict someone from a restaurant table she considers “hers,” and is generally blind to all social meanings.) Though idiosyncratic, Jessy’s systems bring to mind the elaborate, pseudoscientific systems of numerology and astrology.
In the past twenty years, Jessy’s obsessions have been transformed, or transmuted, into paintings — paintings, at first, of radio dials and heaters (very fresh, brilliantly colored, a sort of Pop Art), and now exquisite paintings of houses and churches, in which an uncanny accuracy of line is combined with colors of surreal brilliance. Night scenes are her favorites, in which buildings stand out incandescently against a dark sky — cobalt, or ultra-marine, or (her favorite) “purplish black” — and in which every major star is portrayed in its exact position and magnitude.
Exiting Nirvana is never sentimental, but it is often lyrical, and even allegorical in the universality of its themes. All of us, perhaps, have to move from some primal Eden of self-sufficiency, self-absorption, changelessness, timelessness, into the vicissitudes and frustrations and unpredictabilities of the world, into a life that may be full of growth and adventure, but that threatens continual contingency and risk. It may be — this is certainly a central theme of the book — that this sort of Nirvana can achieve in the autistic an overwhelming, engulfing, annihilating intensity, shutting out the world, in effect, by a timeless absorption in monotonous and repeated activities. Clara Park, in some of the most memorable passages of The Siege, described just this with the eighteen-month-old Jessy; and Temple Grandin (who in referring to her own autism once called herself an “anthropologist on Mars”) tells us how she too as a child would “sit on the beach for hours dribbling sand through my fingers and fashioning miniature mountains,” blind to the human beings, the human activities and interactions, all about her. We have all, perhaps, dribbled sand in this way, but for the autistic there is a very real danger that such dribbling will engross an entire lifetime. It was this sort of enraptured, timeless, self-stimulating nothingness that Jessy’s parents had to put under siege in the first place. But then the siege became a journey into the possibilities of coexisting in our world, partly by understanding it (which is still possible for Jessy only to a very limited extent), more by learning its (to her unintelligible) rules and customs and values by rote, while at the same time keeping, even strengthening, her own autistic singularity and identity — that immediacy and purity and simplicity of mind which lies at the core of her character and art.
&nb
sp; Though Jessy cannot live independently (and never will be able to), and though she requires supervision at work, she does work, with extreme competence and absolute reliability, as a mail clerk. She balances her checkbook; she pays taxes; and (the most difficult, perhaps, for anyone who is autistic) she has come to appreciate something of the feeling of other people, other minds, and of the nature of friends and friendship. And if she has left or renounced Nirvana to some extent, she can recapture it in the stillness, the timelessness, the beauty of her strange paintings. This may, indeed, be as crucial in balancing her life as anything else.
For many years autism was seen as a defensive withdrawal from the world, on the part of a child neglected and alienated by cold, remote parents — Leo Kanner, who identified the condition and named it, spoke of “refrigerator mothers.” But there is nothing whatever to support such a notion and everything to refute it. Jessy, the “baby” of her family, has been dearly loved — not only by her parents, but by her siblings — since birth; has perhaps had less trauma than most of us; and gives the impression, for much of the time, of an odd (and, as it were, secret) happiness. Clara Park speaks here of Jessy’s continuing capacity for “autistic delight”:
Once she’d exult over her discovery that “70003 is a prime!”… Then her interest subsided; other things evoked her secret smile. Stars. Rainbows. Clouds. Weather phenomena. Quartz heaters. Odometers. Streetlamps. A strange procession of obsessions, for a year or two eliciting an intensity of emotion approaching ecstasy, then subsiding into mere pleasure. Wordless once, now a word, a phrase, could thrill her. “Asteroid explosion,” “digital fluorescent number change.”
The obverse of this — and now much rarer — is the piercing cry of desolation that Jessy sometimes emits. The causes of these, Clara Park writes, were
as inexplicable as the causes of her delight. Perhaps her milk was served in a glass instead of her silver cup…. Perhaps one of the six washcloths in the family bathroom was missing…. Even when she began to put words together… we were no nearer understanding. It was, we could be sure, never anything that would make another child shriek, it was always trivial, what normal people would call trivial — trivial in everything but its effect on Jessy…. By the time she was twelve or thirteen, she could tell us. But what good did it do to know that a lighted window had disrupted the darkness of the building across the street, that a cloud had covered the moon, that she had accidentally caught sight of Sirius… ?
These sudden raptures or desolations, though occurring in such trivial (but to her passionately charged) contexts, bring to mind some of the raptures and distresses that creative artists and scientists sometimes have — the ecstatic “Eureka!” of discovery or insight, the sudden feeling of calamity when things do not go right. This is all infinitely far from the emotional dullness, or muting, or “indifference,” that is sometimes ascribed to the autistic.
Clara Park speaks of Jessy’s strange happiness as characteristic of her condition. I am not sure that this is so — that autism alone can generate such a temperament or disposition or life-mood. Knowing the Parks somewhat, I can perhaps say what Clara Park herself is too modest to say: that this is a most extraordinary family — the mother a gifted teacher and writer, the father a theoretical physicist, and Jessy’s three older siblings intellectually gifted and accomplished. The Park household is one where eager interest and attention turn in all directions, and where intellectual play and fun are the constant atmosphere. And this is not only a creative and playful family, but a deeply supportive and loving one. Surely some of Jessy’s happiness and confidence, and the diversity of her own interests, must reflect this rare family situation.
Most books about a “condition” or an “afflicted person” are sad if not tragic, even if they strike a note of heroism or bravery. Exiting Nirvana is a great exception, for while it is as deep and unsparing as reality itself, it has a joyous and lyrical quality from beginning to end.
Oliver Sacks
January 2001
Exiting Nirvana
Jessy Park: Judy's House in
Hastings-on-Hudson, 1996.
CHAPTER 1 Introductory
How to begin? In bewilderment, I think — that’s the truest way. That’s where we began, all those years ago. That’s where everyone begins who has to do with autistic children. And even now, when my daughter is past forty…
This morning, at breakfast, Jessy reports an exciting discovery. It’s a word. She doesn’t say it quite clearly, but it’s recognizable: “remembrance.” “A new fluffy-in-the-middle! Found in the newspaper! It is fluffy in the middle!” Her voice is triumphant, her face is alight. “I saw one! With five on each side!” Leave that unexplained, in all its strangeness. For now. Shift to something less bizarre. Somewhat less bizarre.
. . .
Jessy is painting a church. Her acrylics are neatly arranged on the table beside her. With her sable brush and steady hand she has rendered every brick, every curlicue of the Corinthian capital, every nick and breakage in the old stone, accurately, realistically, recognizably. Except that the capital is a vivid, penetrating, astonishing green. The elaborate details of the stonework are picked out in shade upon shade of rose and violet and turquoise and ultra-marine and yellow and green, a different green. The tower thrusts upward into azure sky. Into the blue (five shades, she tells me) she’s introduced three zigzags, one above another, exactly parallel, zig for zag. Lightning, she says. She’s painted lightning before, realistically, recognizably, working from photographs, since lightning, unlike a church, doesn’t hold still for her to sketch it. But no one ever photographed lightning like this, so neatly angular, so controlled. “I invented it!” Happily she explains: it’s what she sees when she has one of her brief migraine episodes. Migraine can be painless; Jessy is quite comfortable with hers. She points out that the zigzags too are colored: “Very pale mint, lavender, and yellow.”
Very pale; to me they all look white. Only a scrutiny as sharp as Jessy’s would notice a difference between them. Only a mind as free of conventional perceptions would make lightning out of a migraine illusion, or convert the dramatic disorder of nature into this orderly vision, or transfigure a deteriorating church with colors beyond the rainbow. Bizarre becomes original in the language of art, becomes surreal.
. . .
But Jessy’s life, and life with Jessy, is not all strangeness. Indeed, it is less strange every year, more ordinary, more like other people’s lives. We work, we shop, we do errands. So consider this recent incident, at the little post office on the island where we spend our summers. The parking lot is full. I’ll park at the curb and rush inside while she waits in the car.
She doesn’t like that. “We could ask someone to move so we can park,” she says.
“We can’t do that,” I tell her.
She confirms this. “We can’t ask them because they were there first.” She was just hoping; she really does know the rule. She learned it years ago, when she asked some people to move from her favorite table and had to leave the restaurant. Now I countersink the lesson: “How would you feel if someone asked us to move so they could park?”
“Hurt my feelings.”
Still, evidently, more work to be done. “No, it wouldn’t hurt your feelings. Feelings get hurt when somebody does something or says something and you think they don’t like you. Or criticize you.” (This is getting complicated.) “It’s not when they do something you don’t like; then you get irritated, or angry. That’s different.”
That was a year ago. This week, at the supermarket, the lesson resurfaces. Near the checkout, I’ve met a friend; we get talking. Too long, thinks Jessy; the shopping’s done, time to go. She waits a minute, two, then pushes our friend’s cart with an abruptness just on the edge of aggression. She’s caught herself, but she knows she’s been rude. Later, as we talk it over, she plugs in the familiar, all-purpose phrase: “Hurt his feelings.” Has there been any progress at all?
I begin to correc
t her. But she anticipates me. “Not hurt his feelings, irritated!” She remembered! This is the first time she’s ever made the distinction. Except, except… except that he wasn’t irritated. He’s known Jessy from childhood, and makes allowances. How to explain that and still convey the necessity of self-control? Words, feelings, contexts, human meanings. We’ll be working on these for years to come.
. . .
Forty years. The middle of the journey. The middle of her journey; nearer the end of mine. But I had better begin nearer the beginning, where I began thirty-four years ago, when I first realized there was a story to tell.
We start with an image — a tiny, golden child on hands and knees, circling round and round a spot on the floor in mysterious, self-absorbed delight. She does not look up, though she is smiling and laughing; she does not call our attention to the mysterious object of her pleasure. She does not see us at all. She and the spot are all there is, and though she is eighteen months old, an age for touching, tasting, pointing, pushing, exploring, she is doing none of these. She does not walk, or crawl up stairs, or pull herself to her feet to reach for objects. She doesn’t wantany objects. Instead, she circles her spot. Or she sits, a long chain in her hand, snaking it up and down, up and down, watching it coil and uncoil, for twenty minutes, half an hour, longer… 1
It was like that; that was when we began to know.
. . .
To know what? Today, any reasonably savvy pediatrician would know what, would recognize autism when she saw it in as pure a form as this. Autism is when your two-year-old looks straight through you to the wall behind — you, her mother, her father, sister, brother, or anybody else. You are a pane of glass. Or you are her own personal extension, your hand a tool she uses to get the cookie she will not reach for herself. Autism is when your three-year-old sorts her blocks by shape and color so you can’t think she’s retarded. Autism is when your eight-year-old fills a carton with three-quarter-inch squares of cut-up paper to sift between her fingers for twenty minutes, half an hour, longer. Autism is when your eleven-year-old fills sheet after sheet with division, division by 3, by 7, 11, 13, 17, 19…. But that’s enough, there are many books about autism now, anyone can read the symptoms. I need the image for what the symptoms don’t convey: this child was happy. Is it not happiness to want nothing but what you have? Craving, the Buddha taught, is the source of all suffering, detachment the road to the serene equilibrium of Nirvana.
Exiting Nirvana Page 1
