Planning for Life

The History of Autism – A Disease, a Disability, or Another Mode of Normalcy?

Posted by Elizabeth Stepakoff on February 1, 2016

By Karen B. Mariscal

We realize it is a little odd to review a book review.  But Steven Shapin’s review of the new autism book, In a Different Key: The Story of Autism by John Donvan and Caren Zucker, published in the January 25, 2016 issue of The New Yorker, here, is exceptional.  Shapin uses his review to provide a brief survey of the history of autism, and how we have come to understand it, that is the best we have seen.  Shapin explains that a major focus of Donvan and Zucker’s book is on autism in the family and the changing historical role of parents of autistic children.  Here is an excerpt from the review:

“The world has always been unpredictable and disorderly, and some people have always found its ways unbearable.  But there hasn’t always been autism – or its related categories, Asperger’s syndrome and (the current official term) autism-spectrum disorder.  Autism was autism_2.jpgdiscovered, and given its identity as a discrete pathological condition, by two physicians [Kanner and Asperger] working independently of each other in the Second World War.  . . .
The establishment of autism as a distinct pathological condition has certainly improved the lot of countless patients and their family members, but, as Donvan and Zucker relate, the road has been far from smooth.  Not long after Kanner’s discovery, autism came to be seen as a developmental disorder caused by bad parenting – especially by mothers who withheld affection from their children and created kids who were incapable of affect.  The villain here was another Austrian émigré, Bruno Bettelheim, who, on the strength of a doctorate in art history and supersized intellectual chutzpah, had wangled Ford Foundation funding for his research and a prominent position as a child psychologist at the University of Chicago. . . Bettelheim put forth the idea that autism was a rational response of children who, dealing with a deficit of maternal emotion, reengineered themselves as machines.  Bettelheim reckoned that a cure would come through an expertly designed systematic introduction of emotion into emotion-starved kids.” 

Villain indeed.  That guy with a doctorate in art history and a lot of chutzpah caused a lot of pain.  We can’t imagine how those mothers must have felt, already struggling with a disabled child, being blamed as “refrigerator mothers.”  We may not have made a lot of progress in figuring out what causes autism, but we have come a long way.  Thanks to The New Yorker for featuring this book, and Shapin’s excellent summary of how autism has come “to challenge our notions of what is pathological and what is normal.”

If you have questions involving your disabled children, contact Karen Mariscal, Esq.

Topics: autism, special needs

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