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Behold, the newest entry into my Top 5 books: NeuroTribes by Steve Silberman. Rounding out the Top 5 (not including the Bible) are in no particular order: Pride and Prejudice by Jane Austen, John Adams by David McCullough, Persuasion by Jane Austen, and Team of Rivals by Doris Kearns Goodwin. You can see this book is in pretty rarefied air :) I had planned to read this book after I was done with classes but I couldn't wait. I'm glad that I didn't.
There's been a lot of press around this and the buzz in the autism community has been intense. At least those in the neurodiversity circles, I'm pretty sure that those in the Autism Speaks / anti-vaccine camp aren't quite as effusive in their praise due to the main themes of the book which are:
THERE IS NO AUTISM EPIDEMIC.
AUTISTIC PEOPLE HAVE ALWAYS BEEN HERE.
For an amateur history buff like myself, his research on how autism came to be diagnosed was fascinating. It started with Hans Asperger first diagnosing the condition in the early 20th century but his research was lost during World War 2 when the Vienna clinic in which he was working was leveled by the Allies. Asperger's definition of autism was much more like the current definition; that is a spectrum and encompassing many different manifestations. Almost at the same time, Leo Kanner was working in the United States with children who exhibited patterns of repetitive behavior and social deficits. He worked hard to narrowly define autism as a disorder that is restricted to the most severe cases, as well as only a childhood condition, dubbing it "early infantile autism." Unfortunately, Kanner's research survived, unlike Asperger's, and was the dominant narrative of autism for decades. Because of this definition, many many children (and adults) did not receive the services that they needed and were misdiagnosed with conditions like schizophrenia and childhood psychosis.
For me, the most heartbreaking stories were the ones about children who were institutionalized, which was the standard practice in those days for any child who showed signs of a disorder. I mean, it goes without saying that you would need to pry Elias out of my cold dead hands if anyone ever wanted to institutionalize him, but this is also not the common wisdom of the day and parents would have been placed under an enormous amount of pressure to send their children away since there weren't resources readily available to help them. Reading this book also made me wonder how Elias would have been diagnosed (if at all) 20-30 years ago since he doesn't fall under Kanner's narrow definition.
Two quotes that I found interesting:
Researchers at the University of Edinburgh discovered in 2015 that genes associated with autism are also associated with higher levels of cognitive ability - particularly problem solving tasks requiring nonverbal, hands-on intelligence. (273)Elias's strength lies in his ability to problem solve. He's always been this way since he was very small.
It turned out to be an idea as old as Asperger's notion that people with the traits of the syndrome have always been part of the human community, standing apart, quietly making the world that mocks and shuns them a better place. (450)This one makes me pause. As a society, we are so unwilling to accept people who are different than us even though the diversity in this planet is immense. We want everyone to be like us, act like us, LOOK like us that when they don't, we ignore them and don't put the work in to befriend them. This isn't just true for autistic / NT people, it's true across race, religion, nationality, as we are are seeing on a national level these days.
It's a fascinating book, no matter whether or not you love an autistic person. It would be a great gift for a parent whose child was recently diagnosed!
WONDER by R. J. Palacio
So, I cried through at least half of this book. Some parts are legitimately sad. It's the (fictional) story of August Pullman, a 10 year old who was born with a severe facial abnormality. He endured multiple surgeries and had been homeschooled up until his 5th grade year when his health had stabilized to the point that he was able to attend school. They place him in an expensive private school in NYC called Beecher Prep. This is a YA book, but like most YA books, anyone can glean something significant from it. The overarching theme is choosing kindness, not simply choosing not to be mean. There is a difference.
I probably would not have done so much crying had I not had a child with special needs who is also vulnerable to bullying. Our society is just not kind to people who deviate from any norm, tragically. I'm making Ben read this one and we've had some good conversations coming out of it. I love being able to talk about books with my kids!
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