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.

Autism is characterized as a spectrum of disorders (ASD).  In addition to the diagnostic criteria listed above, also seen are so-called savant skills in calculation or music, epilepsy, tics, gastrointestinal disturbances, psychiatric disorders, attentional dysfunction, toe-walking, and hyper- and hypo-sensitivities to sound, touch, smell - any sensory stimuli.  The variety of characteristics across individuals with the more disabling symptoms overlap with behavioral and learning disorders and psychiatric illnesses, and the less disruptive end of the spectrum can be difficult to distinguish from variations within neurotypical persons.  In the absence of a biological marker - a measurable indicator such as a gene, antibody, or microbe that conforms to the presence of a physiological condition - the diagnosis of ASD can be challenging, and includes a subjective judgment by the person making the diagnosis.  It is unknown whether the individuals who are now grouped under this single spectrum umbrella will turn out to have one or several markers when the biology of the syndrome is better understood.

My PhD research involved sensory processing in persons with ASDs.  So the science is fascinating to me, but it is the young people with ASDs whom I met, and their remarkable families, that stay with me. Whether you work to understand what is happening in the brain, provide medical care or education to individuals on the autism spectrum, the variations across the syndrome are striking.  The variety of theories about the causes of ASDs, the proposed treatments both sensible and extreme, and even the different names given to the syndrome, since it was first written about by Leo Kanner in 1944, make it confusing to understand.  That is why In a Different Key makes such an important contribution to the mainstream autism literature.  Donvan and Zucker have written the first comprehensive history of autism as a medical diagnosis, a subject of research, and a social phenomenon, for the lay reader.  It is laudably accessible in eschewing both technical jargon and abstract descriptions - always stressing stories about real people.

As someone who makes stories and experiences for audiences and who has also done science, I am struck that however sophisticated our knowledge of science becomes, the data must always be conveyed through narrative. I love creating programs that assist the public in understanding science research, but even in communicating with each other, scientists tell stories to interpret their data. That is not always obvious to nonscientists, who believe that science is a medium of facts and figures that is impenetrable without a secret key.

Donvan and Zucker don't oversimplify the story, they do a far harder thing - they convey its complexity simply, a real achievement.  More than writing about autism exclusively, they have really succeeded in writing about how biomedical science as practiced today, intersects with ethics, funding mechanisms, education, personally identity, and social movements.  In doing so, they write a story about how neuroscience research is relevant to every one of us.  That is why I have invited them to speak for a Brain Awareness Week program at Baruch Performing Arts Center, where I work. 

If you are in the New York City area, I hope you will join them and me on Monday March 14th at 6:30pm for a talk and book signing. Reserve your seats here.  Whether or not you can attend, I recommend that you pick up a copy of the book for yourself.  We make the world a more hospitable place when we learn about people who experience it differently than ourselves.

This is one of more than 25 Brain Awareness Week programs throughout NYC. Check here for a full listing.  Check here if you don't live in the NYC area. 

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