When Roy Richard Grinker’s daughter Isabel was diagnosed with autism in 1994, the condition was considered rare. It was thought to affect three in every 10,000 children. Now, the rate is closer to one in 100. Many see this rise as evidence of a catastrophic epidemic. Grinker, controversially, sees it as a cause for optimism.
Grinker is an American anthropologist. Unstrange Minds is both a memoir of life with Isabel and a survey of the way autism is interpreted worldwide. His view is that autism has always existed in every society and that the numbers have probably been fairly constant. We in the West perceive an epidemic because knowledge and awareness of autism has improved so vastly in the last 15 years that it is now spotted in cases which in the past would have been misdiagnosed or ignored. The ‘epidemic’, therefore, is a symptom of social and medical progress. Being able to identify the problem gives us a head start in learning how to cope with it.
More subtly, Grinker argues that attitudes to autism reflect the current values and preoccupations of society. In 1960s America psychoanalytic theory was more powerful than it is now, so that the psychoanalyst Bruno Bettelheim’s erroneous view that autism was caused by cold, unresponsive parenting, which he argued all too persuasively in The Empty Fortress, was uncritically accepted. This did untold damage to families already battered by the difficulties of raising an autistic child. Galloping progress in genetic research and brain scanning techniques has since proved that autism is a congenital condition and that the autistic brain has significant structural abnormalities. What causes a foetal brain to develop in this way is not yet fully understood, but at least ‘refrigerator mothers’ are no longer blamed. Not here nor in the US, at any rate.
The most fascinating and original part of Grinker’s book looks at how other cultures respond to autism. In South Korea, there is little help for autistic children or respite for their parents. Autism is seen as shameful. A diagnosis of Reactive Detachment Disorder is often given — the term used in the rest of the world to describe institutionalised orphans or children otherwise deprived of loving care who develop problems of social relatedness. So, in South Korea it’s the mother’s fault again, but this is socially preferable because the RDD label does less damage to the marital or social prospects of other siblings. To have a heritable disorder in your family is a worse stigma than to have a bad mother.
In India, autism is massively underdiagnosed and undercatered for. Typically, the Indian mother keeps her son very close to her for the first few years, then pushes him away, handing him over in a kind of playful rejection to the extended family, who set about making a man of him. An autistic boy (autism is more common in boys) will find it difficult to break his dependence on his familiar care-giver; the extended family are unlikely to want such a boy. Mothers of autistic children are ostracised, even abandoned, because their situation disrupts the social code.
In South Africa, Grinker meets a Zulu family; the parents find out all they can about autism from the internet, but are castigated by the grandparents for refusing to call in a witchdoctor to expel evil and appease the wrath of ancestral spirits. Grinker hopes that improved global communication, especially the internet, will spread understanding worldwide, and that the tolerance that is beginning to blossom in the US, now that the psychoanalytic stranglehold has loosened, will eventually become universal.
This humane, intelligent book reminds me of hearing the autistic author, Donna Williams, tell parents that they need to be their own child’s anthropologist. Autism is defined by social and communication difficulties and by a lack of ‘theory of mind’ — the ability to think oneself into the position of someone else. If you wait for your child to explain how he sees the world, what he finds difficult, or why he’ll only wear purple trousers on a Monday, you’ll wait for ever. Instead, says Williams, observe your child, study evidence as an anthropologist would — as Grinker has tried to do with Isabel. Strip away all culturally-received preconceptions about what a child should be like, and look at what is.
Like every autistic person, Isabel Grinker is not just a collection of symptoms. She’s an individual with unique strengths, talents and problems. In relating his ‘study’ of her to his assessment of how autism is perceived worldwide, her father has performed a valuable service.
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