Abstract
A selection of films and books is offered this month for your holiday consideration. The film A Beautiful Mind is important enough to warrant two reviews because of its potential to influence attitudes to schizophrenia over a wide audience.
With best wishes for the festive season.
Jo Beatson
Clara Claiborne Park
London: Arum, 2001
ISBN 1 85410 806 9 pp.240 $39.95
Clara Claiborne Park gives an honest account of life with Jessy, her daughter who has autism. When Park originally wrote a book about the first eight years of Jessy's life, she used a pseudonym in the hope that Jessy might one day read the book and not be embarrassed. She now acknowledges that although Jessy has learned to read, she will never be capable of reading this book, which is an eloquent description of ‘a 40 year journey’. It does not tell of a miraculous recovery. Park, with great sensitivity and insight, describes Jessy's growth and development as she gradually exits from the detachment of ‘nirvana’ and enters more fully, ‘yet never entirely’ the world in which we all live. The majority of adults with autism are unable to live independently and Park now acknowledges this is also the outcome for Jessy.
The book describes the core, persistent features of autism in sections entitled: talking, thinking, painting and living. Park writes about practical strategies to help overcome specific problems. For example, each day for the past 20 years Jessy has practised ‘imagery scenes’ (imagining a situation and rehearsing the expected, appropriate behaviour) and relaxation exercises to help manage her hypersensitivities and social anxiety. Behaviour modification programmes were started when Jessy was 14. Behaviour contracts and a system of rewards and punishments that tapped into Jessy's fascination with numbers helped improve social skills, introduce new foods and control disruptive outbursts.
Formal education was problematic. Jessy spent 4 years at nursery school where she had some number skills but no speech and was generally unresponsive. Elementary school placement lasted only eight weeks and a home-based education programme with teachers and therapists was preferable at this time. From 13 to 22 years Jessy attended special class at high school where she screamed at the school bells, scratched in the wrong places and could hardly talk to peers. Jessy continued to have ‘companions’, such as student teachers, at home to help with her learning until her twenties. It was not until she was 15 that Jessy was speaking more clearly and could finally read and write. She eventually attained a literacy standard at 4th grade level. Gains in language have been slow and the result of persistent hard work and, 40 years on, Jessy continues to confuse pronouns, make odd noises that she calls her ‘mumbles’, has an inappropriate tone of voice at times and has difficulty asking questions. She also ‘snaps’ when asked questions that contain words that distress her. From 9 to 16 years, Jessy became absorbed in systems and patterns in words, pictures, numbers and letters as she tried to impose rules on the world around her and make sense of it. Oddities of thought, feeling and behaviour that Jessy describes as her ‘enthusiasms’ have changed with time but now remain in the form of extensive, annotated lists.
Park acknowledges that Jessy has attained a general competency in daily living skills and a measure of independence that is not typical of most adults with autism. For the past 20 years Jessy has been employed full time at the mailroom of a local college. She can balance her cheque book, pay her share of the grocery bill and is an active member of her local community. Jessy is also a successful artist and paints highly detailed and brilliantly coloured pictures of everyday items, such as the controls of an electric blanket, buildings and bridges. Her eye acts like a camera, the visual equivalent of the typical autistic literalism. Jessy's painting is not only a creative pastime but has also led to wider social contact as she meets people at exhibitions of her work and negotiates new commissions.
Many parents of young children with autism ask me ‘What will he be like when he grows up?’ This book goes some way to answering that question because it is an honest account not of magical cure, but of hard work and gradual adjustment. Most aspects of Jessy's life are influenced and compromised by her autism and prevent her living independently. Jessy is fortunate that she has full employment and that her obsessive preoccupations with colour, form and detail have led to quirky, vibrant paintings that are valued by others. This is not the case for the majority of adults with autism.
I recommend this book to parents of children with autism and professionals who want to read an honest account of the hardship, effort and eventual rewards experienced by Clara Claiborne Park and Jessy as she exits nirvana. Clearly, her journey is not over yet.