Nirvana: A Daughter’s Life with Autism. By Clara Claiborne
Clara Park’s first book The Siege: The First Eight Years of an Autistic Child (originally published in 1967) was one of the first parent accounts of a child with autism. It quickly became a classic and encouraged other parents to challenge the isolation of "those behind walls." The 1982 edition of The Siege added a 40-page "Epilogue, Fifteen Years Later." Now Exiting Nirvana tells of Jessy as an adult in her early 40s. The title is intriguing. Nirvana is the final goal of Buddhism, the transcendent state of being released from suffering, desire and sense of self. Jessy’s story is interpreted as a journey from "empty serenity" into "our common world of risk, frustration, loss, of unfulfilled desire as well as of activity and love" (p.10).
Her mother’s account might have been presented as a success story. For Jessy has "worked, rapidly and efficiently, for twenty years in the mailroom of Williams College, Williamstown, Massachusetts; ...she is hardly ever absent and never late; ...she pays taxes; ...keeps her bank account accurately to the penny; ...she’s saved more money than any of her siblings; [and] increasingly she keeps house for her aging parents." She does all the vacuum cleaning, the laundry, ironing, some of the cooking and all the baking, and is a "contributing member of her community and of her family." (pp.24-5). Jessy is also an artist with a very distinctive style, whose paintings are exhibited and commissioned; some are among the book’s illustrations.
But Clara Park is concerned with the truth of Jessy’s "slow progress" and to "keep the account honest." She draws upon a remarkable archive, built up over nearly 40 years, of paper slips with notes of Jessy’s doing or saying something that showed her increasing receptiveness and understanding of the world or revealed how different her perceptions and experience remained. The slips were filed in envelopes each labeled with a category of autistic behaviour: Hypersensitivities; Obsessions; Compulsions (Order, Errors); Verbal; Self-Awareness; Strangeness/Secret Life; Correlations/Analogies; Numbers. In the book, these complex and overlapping categories are simplified into groups of chapters about Talking, Thinking, Painting and Living. Chapter titles are Jessy’s own expressions.
Through these chapters of skilfully narrated anecdotes, we can learn so much. About Jessy’s long, slow journey to language, the expression of emotions, and an ability to think of others. About her complex preoccupations with systems of order—what she calls enthusiasms and others call obsessions; her passionate interest in logic and in discovering regularities and organizing them that is also expressed in her art. About routine, "autism’s curse and gift," through which she has become a useful member of her household and community. About the childlike purity which people love in her. About her "strange quivering tensing of muscles in response to intense interest or pleasure" and the occasions when she "snaps". About the homemade form of behavior modification and, later, the "imagery scenes" through which she learns more acceptable social mores and some flexibility. About how to pinpoint and explain the central disability in autism: the hypothesis by Eric Courchesne (professor of neuroscience, University of California at San Diego) that damage to particular locations in a baby’s cerebellum reduces the capacity to shift attention from one sensory stimulus to another.
If people with autism share some key neurodevelopmental disability, their life circumstances also shape how they develop their abilities and cope with their challenges. Unusually for an autistic person of her age, Jessy has always lived with her parents and nearly her whole life in the same house. With three older siblings, she belongs to a creative, accomplished and caring family. Her mother understates the family’s obvious commitment to Jessy and their patient perseverance through the "years of mingled frustration and tedium." She is frank about their priorities—that Jessy’s needs must not consume or destroy others in the family who have to survive for her sake as well as their own; and that Jessy must learn the practical tasks and necessary relationships of everyday life.
For all who are or will be concerned with autistic adults, I recommend both Exiting Nirvana and The Siege, reissued in 2001 by Little, Brown with the subtitle A Family’s Journey into the World of an Autistic Child. It is also helpful and interesting to see and hear Jessy as a central character in Oliver Sacks’s Rage for Order: Autism, produced by the BBC as part of The Mind Traveller series (and shown on PBS in North America in 1996).