Searching the world for autism answers
SECTION: FEATURES; Pg. 15
LENGTH: 1409 words
There is no autism 'epidemic', argues Roy Richard Grinker, despite a dramatic rise in the number of cases. Arminta Wallace reports
Roy Richard Grinker's daughter Isabel was diagnosed as autistic in 1994. At that time Grinker knew little about the condition, and knew no one else who had it - autism was considered a rare disorder, occurring in about three out of every 10,000 live births. Little more than a decade later, scientists are reporting rates of autism as high as 60 in 10,000 live births, and autism and Asperger syndrome seem to have taken popular culture by storm, with the success of the novel The Curious Incident of the Dog in the Night-Time and movies such as Mozart and the Whale and Rain Man.
But does all this, as some researchers and lobby groups have suggested, add up to a global epidemic of autism? An anthropologist as well as the parent of a child with autism, Grinker is perhaps uniquely placed to investigate the subject; and in Unstrange Minds: Remapping the World of Autism he weaves cutting-edge science, personal anecdote and wry humour into a compelling journey of discovery.
The book is controversial because it strongly disagrees with the epidemic idea. Grinker argues that what has changed is not the global incidence of autism but the way in which we find, label and count children with autism.
He begins by analysing the word "epidemic" itself, noting that it's a highly emotive tag that implies danger and suggests fear, calling up associations with "plagues that can sweep through the streets, something contagious in the air you breathe or the food you eat". The massive rise in the number of children diagnosed with autism over the past decade does not, Grinker insists, even remotely resemble a plague. On the contrary, he says, it's perfectly reasonable, considering that the diagnosis itself is quite new and accurate statistics probably still don't exist.
The word "autism" - from the Greek autos, meaning "self" - has been around since the turn of the 20th century, but until the 1940s children with autism were generally diagnosed either with schizophrenia or mental retardation.
Then the Austrian psychiatrist Leo Kanner described a cluster of symptoms relating to a condition that he called "extreme autistic aloneness". The children in Kanner's study had speech delays or unusual language, fantastic rote memories, and an obsession with sameness and repetition. According to their parents, they had developed normally until about the age of 18 months or two years.
A goodly chunk of Grinker's book is taken up with a lengthy analysis of why the rates of autism prevalence are changing. Another chunk is devoted to the fascinating and often shocking history of psychiatric diagnosis, which comes across as, at best, a pretty inexact science. A classic textbook, published in 1908, lumped serious mental disorders into a small number of categories: idiocy, lunacy, insanity and feeble-mindedness. As recently as the 1950s, "feeble-mindedness" counted as a respectable medical diagnosis - and one for which, Grinker claims, American doctors routinely advocated euthanasia.
Kanner and other specialists in child psychology, such as Hans Asperger, J Langdon Down and Bruno Bettelheim, eventually distinguished autism from Down syndrome and Asperger syndrome. The now-accepted idea of autism as a spectrum rather than a single disorder emerged only during the late 1970s and early 1980s.
For much of the early 20th century, however, psychiatry was dominated by psychoanalysis, and the urge to find someone to blame. Bettelheim declared that autism was caused by unloving parents, and coined the chilling term "refrigerator mother". One of his most famous studies referred to the progress he had made in "thawing out" children who had been frozen, replacing their mothers' "black milk" with proper nurturing.
MUCH OF BETTELHEIM'S research has since been called into question, and although he was, as Grinker puts it, "the leader of the mother blamers", he wasn't the only one. Grinker merrily lists the many different kinds of bad mothers immortalised by 20th-century American popular culture: "the professional or rich mother who never sees her kids, the teenage mother, the Jewish mother, the stage mother, the overprotective mother, the overly permissive mother, the hysterical mother". He also revisits some of the parenting advice given by early child-rearing "gurus". It includes the instruction to never, ever pick up a crying child, how to bind a child's arms to a metal rod in order to discourage thumb-sucking, and the helpful suggestion that parents should teach small children to bandage their own wounds, lest they "become weak and unable to succeed in the competitive workplaces in America".
Grinker makes it clear that parenting - even bad, or plain misguided, parenting - doesn't cause autism. Western culture, however, still likes to play the blame game. Thanks to the now-widespread belief that vaccinations are the bad guys, many parents are refusing to immunise their children against common childhood diseases. The only practical result of this, according to Grinker, has been a significant increase in the incidence of mumps. There is, he maintains, no scientific evidence to link vaccinations with the onset of autism; though he has interesting things to say about anti-vaccine movements, which apparently began with a parental rebellion against smallpox inoculation in the 18th century.
There may well be further chapters in this desperate search for a scapegoat. Last year, a study claimed that the incorrect disposal of rechargeable batteries is further contributing to an increase in autism. Grinker is fatalistic about such scare stories. At some level, he claims, people actually want an "epidemic" of autism, because where there's an epidemic there just might be a cure. The real cure, he says, lies in changing cultural attitudes to autism. First, we'll have to acknowledge the true extent of autism in society. Then we'll have to commit resources to help autistic children to maximise their educational potential - an expensive business. Eventually, schools will have to engage with the question of whether autistic kids should be placed in special environments, or integrated into the mainstream - a complex issue with a range of answers that vary from child to child, and also change as the child develops.
Not only that, but children with autism grow into adults with autism. Will it be possible to integrate large numbers of autistic adults into society? Grinker travels to countries as diverse as India, Korea and South Africa to examine attitudes to autism there - and finds cultural landscapes which, though bleak in the recent past, are changing with impressive speed.
We still have a long way to go, but, he says, we're getting there, and the books and movies of popular culture are a reflection of how far we've come. Autistic children used to be locked up and hidden away. In the future they'll take their place in the wider world - and it will, Grinker says, be a good place.
Did autism exist before it had a name? Yes and no, is Grinker's answer. Without a label and a set of symptoms, autism wasn't something people could recognise.
In Senegal, children with many of the symptoms of autism are called "marvellous children". In Russia, records exist, from the 16th century onwards, of so-called "blessed fools" - children and adults who were mute or spoke gibberish. The word "blessed" meant "innocent in the sight of God".
Grinker suggests that some famously unsociable famous people, such as the chess champion Bobby Fischer or Vincent Van Gogh, may have been autistic. So may some of the "feral" children who have been found wandering, mute and dishevelled, in various forests at various times. The assumption was that they had been there for years, or had been raised by animals. More likely, says Grinker, they'd been in the wilds for only a few hours or days.
Finally, Grinker says, if you want to see undiagnosed autism in spades, look to Silicon Valley. According to one tongue-in-cheek magazine article, the hi-tech industry is packed with people who have borderline autism or Asperger syndrome; and the same holds true for Nasa and other scientific and mathematical institutions. People with autism have, he concludes, always been there - we just weren't primed to see them as autistic.
SUBJECT: AUTISM (94%); INVESTIGATIONS (90%); DISEASES & DISORDERS (90%); EPIDEMICS (90%); BIRTHS & BIRTH RATES (90%); DISABLED PERSONS (89%); PSYCHIATRY (88%); SCHIZOPHRENIA (77%); MENTAL ILLNESS (76%); RESEARCH (76%); DELAYS & POSTPONEMENTS (75%); MENTAL RETARDATION (71%)
LOAD-DATE: March 20, 2007
Copyright 2007 The Irish Times
All Rights Reserved