As many of you know, I write book reviews for Blogging for Books – a great deal for me, because I get free review copies of the latest publications in health and wellness in exchange for a review.
When I order a book, I don’t always know what I’m getting into – so you can imagine my surprise when I opened the heavy box from Blogging for Books, and found a nearly 700 page book, published just last year. “Never judge a book by it’s cover” was my first challenge.
First, I must confess it really did take me six months to read In a Different Key cover to cover. And not just because I’m crazy busy – raising a 4 year old boy, directing a growing nonprofit, my regular 9-5, recording an album on the weekends – which is a totally legitimate excuse (unless you’re a college student)! But The Story of Autism challenged my emotional complacency and intellectual arrogance more than any book I’ve read in a long time.
Let’s start with the challenging aspects of this tome on one of the 20th century’s most difficult and controversial medical topics: autism. In the 1930’s, Donald Triplett was a small child in Mississippi, and by all accounts, perfectly physically healthy and normal. From early on, however, Donald made unusual associations – like people with colors and shapes with numbers. There was an internal logic that kept his world in order, but that internal logic simply would not conform to externally understood social or intellectual conventions. Whatever helped Donald maintain a sense of “sameness” became a sacred obsession. Whenever his obsession was derailed by external requirements like eating, going to the bathroom, or sleeping (always imposed by outside forces) he became uncontrollably violent – sometimes toward others, sometimes toward himself.
His parents were advised by a doctor to send him away – for his own safety, and for the safety of the family and the community. As heartbreaking as this would be for the parents, it was equally as painful to have a child who seemed completely unaware that he was loved, or that he had parents at all.
“That was the hardest thing for Mary [Donald’s mother] – Donald’s utter emotional indifference to her presence. The boy did not seem to care in the slightest whether she caressed or kissed or hugged him. If she were to turn away and face the open window, lost in her own thoughts, he would never cling or whimper to win back her attention. One of the most basic pleasures a parent feels – that of being loved – seemed to elude her, even though the other young mothers in her circle took it for granted. Surely a child’s love for his mother was instinctive, the conventional order of things. And if Mary knew one thing about herself, it was that she’d always been most at home withing the boundaries of the conventional, and had done surpassingly [sic] well there.”
According to historical accounts, Donald was fortunate to have two loving parents who were among the wealthier families in Mississippi. They could afford to consult with a prominent Mississippi doctor who recommended Donald be sent to an institution where he could be under “constant medical supervision” – to a children’s hospital for the insane.
This is where the story really begins, following Donald, and a dozen other families with autistic children through the challenges of abusive and neglectful institutions, trying to raise a violent and uncommunicative child at home, fighting for a diagnosis that would win their children more respect and empathy in the medical world, and fighting against stereotypes of the “frigid mother” – a popular social myth that unloving mothers were to blame for profoundly withdrawn and dysfunctional children.
It was painful to turn the pages as I read about early treatment programs for autistic children which included isolation, starvation, beatings, and electro-shock therapy. I could hardly bear to read the story of Dougie, a severely autistic 13 year old boy, rejected by public schools, murdered by Alec, his own father “to put him out of a misery he believed to be inevitable.” This book reads into the cracks of this broken story, where other parents of autistic children can relate to that depth of hopelessness:
“Mary Ellen Nava, on the other hand, understood what Alec had been up against and why he had snapped. That’s how she sow it: her friend’s husband had, indeed, done a terrible thing, something that could never be justified. But she doubted he did it out of selfishness. Other autism parents, when they heard about the murder, reacted the same way. They were horrified by it, but at the same time, they recognized something familiar in the despair Alec surrendered to. At times, they too had felt chipped down almost to nothing by their inability to find a safe place for their kids – whether in a school now, or out in the world after they were gone.”
That has been the crux of the fight for recognition of autism – to “find a safe place” for kids who have little other options. This book tells the story of Ruth Sullivan who pioneered the civil rights movement for autism, the countless parents who each fought hard in their individual school districts for their children’s rights to go to public school, the many parents who fought their doctor’s recommendations to send their children away to hospitals for the mentally ill – where they would never see their children again, and the many parents who teamed up with doctors to understand autism better, it’s causes, to find effective treatments, and for some, even to look for a cure.
This book does the greatest justice to the conversation around autism by including a thorough chapter on the vaccine controversy, by including the words of autistic activists like Temple Grandin, Alex Plank and Ari Ne’eman. The authors John Donvan and Caren Zucker demonstrate with so much compassion the shifting understanding of this disease – how the concept of an autistic “spectrum” is so young, and already being supplanted with ideas like “neurodiversity”.
Most importantly of all, Donvan and Zucker have taken great care to tell the story as accurately and truthfully as possible – and from the perspective of the world’s leading experts on autism: parents. It has been the parents who have driven all historical progress for the rights of their children to go to school, to have a place in the world. It is the parents who have most often been stigmatized and criticized – and yet persevered with social organizing, fundraising, grant writing, and the exploding amount of medical and social research that has happened in the last 30 years.
The book ends by returning to the story of Donald Triplett, who graduated college, worked at the family bank, learned to play golf, and managed to have a relatively peaceable, normal existence in the small, rural town in Mississippi.
“When Donald was about seventy-nine, Jan Nester from the bank insisted that he get a cell phone, and she showed him how to send text messages. Donald was hooked. It was as if some sort of interior barrier fell. Suddenly, he was tapping out words constantly, communicating with real fluency for the first time in his life. Nonverbal children with autism experienced a similar breakthrough when the iPad was introduced in 2010. By manipulating images and characters on the screen, some were able to express themselves without relying on words and grammar, which had always been obstacles. Likewise, when Donald texted, he could forget about complex visual and physical requirements of spoken language, such as eye contact, facial expressions, and the neurological gymnastics of turning thought into sound. While texting, he ‘spoke’ in a different voice.”
Had I seen this book on the shelf – I probably would not have bothered. The cover is not bright and flashy, the title doesn’t necessarily jump out and engage you, and I would have been intimidated by it’s sheer size. But that is often the same with meeting autistic people – if we have never lived closely with someone who is autistic, or had to interact with someone on the spectrum, or had a friend with an autistic child, perhaps we never even give them a chance. Perhaps we are intimidated, or insecure, maybe we’ve already made judgments about who they are and how they relate to people before getting to know them. I’m so grateful this book landed on my doorstep, just as I am deeply grateful for the autistic friends in my life.
“Don’t judge a book by it’s cover” applies to more than just books.
I received this book from Blogging for Books for this review.