Books: Passionate, insightful story of autism
Non-fiction: In a Different Key: The Story of Autism, John Donvan and Caren Zucker, Allen Lane, hdbk, 688 pages, €37.50
Kate Chisholm on two American journalists' far-reaching account of a much misunderstood condition.
'When people look back on my career, I'll be remembered for two roles: Ratso Rizzo and Rain Man," said Dustin Hoffman. He was right: the 1988 release of Rain Man, in which Hoffman gave an Oscar-winning performance of a man with autism, is forever quoted as a key moment in the campaign to get the condition noticed.
But as the American journalists John Donvan and Caren Zucker reveal in their passionate, insightful but over-long book, In a Different Key, Hoffman's portrayal was not the first attempt by Hollywood to talk about autism. In Change of Habit (1969), his last feature film, Elvis Presley plays a doctor who falls in love with a nun while both are working with underprivileged children, one of whom refuses to speak. The nun (Mary Tyler Moore) tells Presley that she thinks the girl is autistic.
Intriguingly, Presley's response as the doctor is to wrap his arms around the girl and to say that all she needs is love. Yet at the very same time in the US, children with the same condition were being separated from their families and locked up in state-run institutions. Others were injected with LSD ("to crack the silence of the silent") or given electric shocks from a cattle prod designed for use on animals weighing 2,000 pounds, ostensibly to stop the children from biting, scratching and banging their heads against walls.
Donvan and Zucker, both of whom have a family member with autism, also remind us that in the Twenties, Fitter Family contests were organised across the South and Midwest of America in which families were examined by a team of "experts", including a dentist, a psychologist, a psychiatrist and a historian, and scored according to their physical and mental attributes. The scarcely disguised purpose of these contests was to shame families with low scores to stop procreating: blazoned across advertisements around the fairgrounds were statistics that sought to prove how taxpayers were funding the care of those with "bad heredity".
This in part explains why parents with autistic children were for decades persuaded that the best thing for everyone concerned was to shut the children away and forget about them. It may also lie at the root of the shocking attempt by some members of the medical establishment to lay the blame on parents, especially mothers. Time magazine, for instance, ran an article in April 1948 which suggested that these "frosted children" became so because their "refrigerator mothers" failed to bond with them.
The saddest aspect of this article is that its author was Leo Kanner, the child psychiatrist who had first named the condition in 1943. He had studied a number of children, who had often developed quite normally for the first 18 months but who had then suddenly shut down all forms of communication or learning. He described how they shared "autistic disturbances of affective contact", taking the word "autistic" from the symptom list for schizophrenia. Kanner was at first sympathetic towards these children's parents, but then only a few years later claimed the vast majority were too cold, too serious, too obsessive and too detached.
This view was shared by Bruno Bettelheim, who developed high-intensity "behavioural" methods for treating disabled children at the Sonia Shankman Orthogenic School in Chicago in the Fifties and Sixties. For Bettelheim, autism was "a decision children made in response to the cold, nasty, threatening world in which they found themselves". Or at least this is how Donvan and Zucker portray him in a narrative which tends to categorise the chief players in their story as either heroes or villains.
Kanner would later change his mind again, announcing before an audience of parents with autistic children in 1969: "Herewith I acquit you people as parents." But by then the damage had been done.
Donvan and Zucker tell of the desperation of many parents as they sought not just to get help but also to clear up the confusions caused by the divisions and rivalries in the medical profession. It's a heartbreaking story of extraordinary perseverance - of parents such as Bernard Rimland, a locksmith from San Diego, who researched every single reported case of autism and then taught himself genetics, biochemistry, neurophysiology, nutrition and child psychology to find a way to help his son; or of Sybil Elgar, who in her forties became a teacher and set up the first school for children with autism in Ealing, west London, so that she could help those who would otherwise be left uneducated.
In recent years, the idea of autism has been broadened into a "spectrum", which includes those with Asperger's syndrome. The exploding number of cases, labelled an "autism epidemic", may be less to do with a real increase in autism, and more with the difficulty in diagnosing this condition that refuses to be contained in a simple set of symptoms or outcomes.
Donald Triplett, for instance, a patient in Kanner's first study, learnt to drive when he was 27 and travelled by himself to Egypt, bringing home snapshots of the pyramids. In his seventies he enthusiastically took up texting. Archie Casto had all his teeth removed in state-run institutions because he used to bite, but aged 74 his sister managed to get him into a sheltered house run by the Autism Services Centre. He learnt to ride a tricycle, to paint and colour, to hammer nails into a board. At 81, he saw the sea for the first time and touched his sister's cheek. Their stories give hope to parents of autistic children, but also continue the puzzle. If they could be helped, why do others seem destined never to be rescued from their locked-up, locked-out state?