A Perfect World: A Father’s Quest to Unriddle the Mysteries of Autism
Random House, $34.95,
As New Zealanders, we like to pride ourselves that we live in a caring egalitarian society with decent, though imperfect, health care and education systems. Why then is autism so neglected in New Zealand? The opening chapter of A Perfect World paints a dismal picture of the totally imperfect support we give autistic children and their families. Cohen, an experienced journalist, is the father of three-year-old Eliot who is autistic. Descriptions of Eliot as a young child depict a boy who sleeps very badly (as do his parents), who doesn’t speak but communicates through using a series of pictographic cards and who when upset, which is often, screams, yells, and sometimes bangs his head. The level of state support described by Cohen is paltry – at most, one hour’s speech therapy per week and some help with placing Eliot in a kindergarten.
The Cohens have decided that the best they can do for Eliot is to provide him with therapy called applied behavioural analysis (ABA). Cohen describes ABA as “a teacher-directed, one-on-one activity that works by breaking down skills and knowledge into tiny pieces. Those pieces are then rebuilt line upon line, precept upon precept, over and over, in order to expand a child’s understanding.” ABA is painstaking work and doesn’t come cheap; it costs the Cohens $1000 a week for Eliot’s treatment. The state provides nothing towards the cost, and the Cohens are not even eligible for a tax break for the treatment.
The sense that New Zealand lags behind the rest of the world in researching autism and providing support for autists and their families pervades Cohen’s book. Faced with the difficulty of his son’s mysterious condition, Cohen embarks on a quest to “unriddle the mystery of autism”. He travels to the United States and speaks with professors at Vanderbilt’s Behavioural Analysis Clinic and researchers in the Autism Genome Project; he travels to Cambridge to speak with Simon Baron-Cohen, director of Cambridge’s Autism Research Project and author of the controversial book The Essential Difference: Autism and the Extreme Male Brain. Baron-Cohen argues that testosterone is the biological basis of the prenatal development of the autistic child. For Baron-Cohen, the inconvenient truth of autism research, after testing thousands of subjects for their ability to read the emotions behind facial expressions, is that men have less empathy than women and are more prone to abstract “system building” modes of thought. Autism is caused by an extreme male brain.
Very little has been written on autism in Asia, and Cohen’s meeting with South Korean autism researcher Michael Hong gives a fascinating account on how South Korean perspectives on autism place an emphasis on environmentally caused conditions. Hong proposes that many Korean children are not autistic at all but are mimicking autism due to being neglected as their mothers rush out to work in Korea’s booming economy. It’s an argument that has certain similarities with Bruno Bettelheim’s notion of “refrigerator mothers” in the 1950s. Bettelheim blamed the mothers of autistic children for being emotionally cold and distant from their children, thereby plunging them into a total withdrawal from the world.
Internationally, the recent explosion of interest in autism and the emergence of a distinct literature on autism and autism spectrum disorders are largely due to the greater number of children being diagnosed with both autism and Asperger’s syndrome/high functioning autism, an increase often described as being at epidemic levels. People with Asperger’s syndrome (sometimes dubbed “the little professor” syndrome) are often somewhat pedantic or literal, have a strong interest in a number of set topics (often computers), and miss the nuances of many social interactions (think Roy Cropper from Coronation Street and his love of trains). Mark Haddon’s bestselling novel The Curious Incident of the Dog in the Night-time has done much to increase interest in and colour the popular understanding of Asperger’s syndrome, as has recent armchair diagnosing and speculation on the internet as to which famous historical figures and current popular culture icons have Asperger’s.
One of the many complexities of autism lies in the now commonly accepted notion that autism is a spectrum disorder, ranging widely from the profoundly low functioning at one extreme to those with high intelligence and only mild social impairments at the other. In one sense the lumping together of individuals with quite different characteristics and needs under the umbrella of autism spectrum disorders only adds to the difficulties of conceptualising autism and for developing policy around adequate resourcing for support for autists and their families.
Recently there has been debate, instigated by adult autists who have formed an autistic self-advocacy movement, relating to the validity and ethics of autism treatment. They see autism not as a disorder to be cured but rather as different neurological wiring or a different way of being with its own unique strengths. This anti-cure perspective has been criticised by some parents of profoundly autistic children who on a daily basis have to deal with the challenging behaviours of this condition, desperately seeking any cure or respite. Again, the notion of a continuum of disorder is relevant: at issue here is whether the movement reflects the needs and concerns of those with high functioning autism or Asperger’s syndrome but makes less sense when applied to those at the lower functioning end of the spectrum. Cohen sidesteps these types of issues, particularly those relating to “autistic identity”, by focusing narrowly on “classic” or “Kanner” autism and by assuming a primarily medicalised rather than socio-cultural view of the condition.
In the early chapters, Cohen sets out to unriddle the mystery of autism. But how is Cohen to approach this riddle? In autism literature, there are numerous accounts of writers tackling the autism enigma via first-person narratives. Two of the best of these are Valerie Paradiz’s Elijah’s Cup and Lawrence Osborne’s American Normal. Cohen’s book falls within this tradition although he inexplicably adopts the annoying stylistic gesture of referring to himself in the third person as “D”. This tends to lessen slightly the impact of his personal account. When Cohen writes well, his prose is engaging and lucid; his accounts of autism research in the United States and Cambridge are worth the price of the book alone.
Cohen sometimes finds it difficult to keep to his subject matter. The interview with Paul Auster in New York has nothing to do with autism and Cohen’s tendency to name drop (having cocktails with Julie Burchill) along with slips into hardboiled detective prose – “The game of life is played with a deck of wild cards” – distracts from the book’s real strengths. A Perfect World is, however, a welcome addition to the growing literature on autism. One of its many strengths is that while Cohen takes an international perspective in his quest to understand autism, the book is firmly grounded in his own experience as a parent with an autistic son living in New Zealand.
Harvey Molloy and Latika Vasil are both Wellington-based writers. They have written articles and a book on Asperger’s syndrome.