Sunday, March 6, 2016

The science of autism is a story of real people (Books - In a Different Key by John Donvan & Caren Zucker)

Ruth had stopped doubting herself the morning she saw Joe do a jigsaw puzzle upside down.  For some time, she had been nagged by a feeling that he was not like her other children in some crucial way.  Six months earlier, Joe had stopped speaking, even though, up to that point, he had seemed to be developing normally...

And then there were these puzzles.  He was working on one just then, a map of the United States whose parts were sprawled, like him, all over the kitchen floor and through the doorway into the living room.  He was getting it done: New Hampshire met Maine, and New Mexico snapped in next to Arizona.  But he was getting it done fast, almost too fast, Ruth felt, for a two-year-old.  On a hunch, she knelt down to Joe's level and pulled the map apart, scattering the pieces. She also, deliberately, turned each piece upside down, so that only the gray-brown backing was showing.  Then she watched what Joe did with them

He seemed not even to notice.  Pausing only for a moment, Joe peered into the pile of pieces, then reached for two of them.  They were a match.  He immediately snapped them together, backside-up, between his knees on the floor.  It was his new starting point.  From there he kept going, building, in lifeless monochrome, out of fifty pieces, a picture of nothing. 

What John Donvan's and Caren Zucker's In a Different Key: The Story of Autism (Crown Publishers, 2016) is especially good at, is conveying a picture of autism historically, scientifically, and socially, by telling the stories of the people involved.  One in 68 children have a diagnosis, so it's hard to live in today's America without hearing about autism.  Understood as a lifelong neurodevelopmental disorder, it is diagnosed based on impairments in communication, especially social relatedness, and a restricted repertoire of activity and interests. The dysfunctions it results in manifest themselves in different persons as impaired eye contact, failure to develop peer relationships, an absence of or delay in developing communicative speech, an inability to conceive of other people's mental states or emotions, lack of spontaneous imaginative play, inflexible adherence to routines which are disruptive to daily functioning, and persistent preoccupation with part of objects rather than their conventional uses, symptoms which must be present prior to three years-of-age to be diagnostically relevant and which often are noticed suddenly, after a period of apparently typical development.