A Daughter's Life with Autism

Exiting Nirvana
by Clara Claiborne Park

Oliver Sacks called The Siege: A Family's Journey into the World of an Autistic Child "one of the finest personal accounts of autism, and still the best-beautiful and intelligent." Now, in Exiting Nirvana, Clara Claiborne Park continues the story of her daughter Jessy. In this moving, eloquent memoir, we see Jessy's progressive journey out of her isolated "Nirvana" into the world we all share. It is an honest and captivating story of emergence, perseverance, and love.

Jessy Park, now an adult, still struggles with language, with hypersensitivities and obsessions, and with the social interactions that ordinary people take for granted but that she cannot understand. With the help of family, teachers, and friends, Jessy has achieved more than her parents could have hoped for. She has left behind the extraordinary repetitive calculations of her autism for the utilitarian tasks of determining her share of the grocery bill and balancing her checkbook. She has grown into an accomplished artist-her astonishing paintings transfigure the ordinary world with the rainbow colors of Nirvana. More important, she has overcome her social handicaps enough to hold a job, becoming not a burden but a contributing, active member of her family and community. Exiting Nirvana is a luminous, moving story about the making of a self and what it means to be human, an account Jessy's mother must tell for her, since she cannot tell it for herself. But most of all it is a remarkable story of growth, not only in Jessy but in everyone who has touched her and whom she has touched.

Chapter 1

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 ultramarine 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 counter-sink 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 correct 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 want any 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...

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.

Copyright © 2001 by Clara Claiborne Park

About the Author

Clara Claiborne Park is the author of several books, including The Siege: A Family's Journey into the World of an Autistic Child, and is a prominent speaker about autism. She won the 1999 American Society of Magazine Editors Award for Feature Writing for her American Scholar article "Exiting Nirvana." She recently retired from the English Department at Williams College and lives in Williamstown, Massachusetts.