Unstrange Minds is a book from George Washington University Professor of Anthropology – and Dad to Isabel, his autistic daughter, Roy Richard Grinker about autism, its history as a diagnosis and how it exists as a cultural phenomenon in other (non-Westernised) countries.
Epidemic
The first thing that Unstrange Minds does is quietly and comprehensively dismantle the idea of there having been an autism epidemic in the sense of that concept relating to a sudden, massive increase.
The shift in how we view autism….is part of a broader set of shifts taking place in society.
Page 4
Grinker goes on to take the reader through the often fascinating history of autism as a diagnostic label (Kanner is pronounced ‘connor’ – who knew??) to illustrate his theory of the apparent rise in autism prevalence being intrinsically linked to these cultural changes such as the growth in child psychology as an area of practice, the decline of psychoanalysis, the rise of advocacy organisations, greater public awareness to educational needs and change in pubic policies:
Doctors now have a more heightened awareness of autism and are diagnosing it with more frequency, and public schools….which first started using the category of autism during the 1991 – 1992 school year are reporting it more often….Epidemiologists are also counting it better.
Page 4
Grinker then goes on to make a similar point to the one that Paul Shattuck was making earlier this year:
Still, these rates may not be proof of an epidemic. Why? Because the old rates were either inaccurate….or based on different definitions of autism than the ones we use now.
Page 4 – 5
The point about different definitions of autism contributing to the ‘rise’ in autism prevalence is frequently dismissed by the mercury militia et al but Grinker has collated the ever changing face of the DSM on the books accompanying website and it graphically demonstrates his point.
Autism Abroad
Unstrange Minds is one of the first academically rigorous books (that I know of) that takes a look at how autism is perceived outside the Western experience. Grinker looks in depth at Korea and India. The picture is not always pretty but it does provide a striking example of how the old adage about ‘out of sight, out of mind’ can contribute to a cultural perception that autism is something unmissable. Those who believe in an epidemic of autism often state that it is ‘impossible’ to miss people with autism. They should consider Grinker’s experience in Korea:
When [Milal School] was being built in the mid-1990s, some of the wealthy residents of this quiet neighborhood south of the Kangnam River in Seoul picketed the site, cut the school’s phone lines, physically assaulted school administrators, and filed a lawsuit to halt construction, because they believed that the presence in the neighborhood of children with disabilities would lower property values. The school opened in 1997, but only with a compromise. It was required to alter its architecture so that the children were completely hidden from public view. Some of the protestors were brutally honest. They said they didn’t want their children to see or meet a child with autism.
If we believe this type of situation and deliberate obfuscation of autism has never occurred in the West than we are kidding ourselves. The situation in Korea now, is how we were in the West once upon a time. This theme is explored thoroughly by Grinker. Remove the places names and this could be London of the 1970’s or New York of the 80’s:
In Seoul, a city of eleven million people, the story is different. There is invisibility in numbers. Posed to an adult, the question ‘Do you know any children who don’t speak well?’ usually goes unanswered, partly because people are reluctant to talk about such things for fear of shaming the child’s family. Equally, people with autism are sometimes hidden away, often go untreated and are seldom integrated into community life.
Page 233
Grinker offers an anecdote from his own life with his autistic daughter Isabel that shows how this wish to exclude difference still turns up in Western culture, even today. A camp director phoned the Grinkers with news that Isabel had ‘took her clothes off in the classroom and the mother of another girl is demanding your daughter be removed from the class’. The camp director had not spoken to the teacher and after he had it transpired that Isabel had merely taken her arms out of her sleeves and put them under her shirt because the air conditioning was on high. It was clear that the whole situation had been contrived by the parent of the other child and indeed, when the camp refused to place Isabel in another class, this same mother withdrew her child (pages 273 – 274).
Autism At Home
The sections of the book directly concerning Isabel are my favourite. My role as dad to an autistic girl makes me appreciate the anecdotes and clear stories of love that other dads of autistic girls convey. The Grinkers don’t shy away from the bad side as well as the good side and detail the battles with American educational authorities that echoed our own battles with our LEA (an ongoing battle even today) to even be recognised as needing such services.
Grinker’s anecdotes about his family (like me, his home life is female oriented with a wife and two daughters) are too poignant and contextual to share and quote well but believe me, they are the lifeblood of the book, making the academic discussion real to parents and people who are autistic.
The author Ron Suskind called Unstrange Minds:
…this big-hearted, uplifting, fiercely rigorous book-a genuine gift to readers who believe in the power of truth.
which is exactly right. It is firmly committed to the truth. It is committed to a rigorous examination of how and why we came to think of autism as having ‘an epidemic’ and explaining how cultural beliefs led us to this stance. It is however also brave, kind, hopeful and above all real. Not a dusty anthropological tome in any way, Unstrange Minds is written in engaging style by a writer who clearly finds his subject fascinating and who has a deep cultural as well as deep personal knowledge of how autism exists as a type of existence as well as a diagnostic label.
Its available on pre-order from Amazon.com only. Don’t let that stop you. Pre-order it from the US no matter where you live. The extra air-mail fare is well worth it. I read the whole thing in two weeks worth of train journeys to and from work and very nearly missed my stop more than once due to being utterly absorbed. Buy it. Read it. Enjoy it.
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