Several times over the past few years I have had clients come into the office and start the conversation with “I think I have Asperger’s” or “I think my child may be on the autism spectrum.”
And at some William and Mary reunions I’ve attended, people speculated on those who had trouble fitting in back in the day. “I think maybe he was on the spectrum,” a classmate said.
One nickname for socially awkward nerdy and geeky kids at W&M is “Twamp” — typical William and Mary person. Steve Silberman, author of NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, spoke at the college this past fall as part of the neurodiversity initiative there. And John Elder Robison, the neurodiversity scholar-in-residence at William and Mary, wrote in praise of Silberman’s book. Indeed, it is one of the best books I’ve read in the past year.
Autism has been in the conversation a lot over the past few decades. There are those seeking help for their kids or themselves; those who think, or thought, that vaccinations have spurred an autism epidemic; and portrayals of autism in Rain Man, Parenthood, and other films and television series. PBS recently aired a documentary called Autism in Love. Persons on the spectrum are publishing books about their lives and how they cope in a world where they’re different, with Temple Grandin perhaps the most famous.
An issue that sometimes arises with pop culture, though, is that when we see someone portrayed with a label, or even someone who talks from experience, we form a stereotype. As is often the case with groups, there are more differences within the autism group than between groups. Silberman relays a quip from the autism community: “When you meet one person with autism, you’ve met one person with autism.”
This is a wonderful book. Its seed was planted serendipitously in 2000 when Silberman covered a “geek cruise” for Wired magazine. In follow-up research, he found a pattern: the children of programmers had a higher-than-expected occurrence of autism. Fortunately for us, Silberman was hooked on finding out more.
What follows is a meticulously researched and well-written story of autism, full of rich and complicated people and plot lines. Silberman does not cherry-pick data, but takes a thoughtful, deep approach. He weaves together stories in such a superb fashion that the book reads like a novel — and, as we read, we learn how treatment and concepts of people on the spectrum have evolved. Silberman’s research is thorough, and he provides many pages of notes so you can see his sources, and use it for your own further research if you like. The history in the book is fascinating, and I was happy to see that throughout the text Silberman shows respect, compassion, and integrity for the people and their stories.
Eugenics played a large role in the history of my state, Virginia, with the Buck v. Bell case and forced sterilization. Silberman reviews how the eugenics movement in the US was adopted wholeheartedly by Germany under the Nazis. Over 200,000 disabled children and adults were killed as part of the official program, and thousands more by doctors and nurses on their own. In the midst of the carnage, Hans Asperger, who worked with children he called his “little professors,” spoke out. His words ring true today. He felt that “aptitudes and deficits” come from the same place and that “our therapeutic goal must be to teach the person how to bear their difficulties. Not to eliminate them for him, but to train the person to cope with special challenges with special strategies; to make the person aware not that they are ill, but that they are responsible for their lives.”
Silberman gives the history of the autism diagnosis, from Kanner’s syndrome in the mid 1940s to the modern-day spectrum. Treatment of those on the spectrum, Silberman shows, has ranged from murder, torture, and bullying to support by family and empathetic friends and professionals. In different eras, the characteristics of those on the spectrum have been characterized as pathological deficits and as strengths. (I think the history Silberman paints says more about those who come up with labels and treatments than it does about those being labeled.)
One thing that struck me throughout the book was how often and how much the egos of even well-meaning people played a part in the cultural perception of those on the spectrum. Silberman introduces us to Leo Kanner, Bernard Rimland, Oliver Sacks, Ole Lovaas, Bruno Bettelheim, Lorna Wing, and many more professionals who helped drive the story we tell about the spectrum. We also get to meet parents who were once blamed for “damaged children” and were themselves labeled “refrigerator parents.” And we meet folks on the spectrum — scientist Henry Cavendish, Gottfried K., Beth, Joe Sullivan, and Peter Guthrie, and many more. Their stories are particularly touching.
In reading Silberman, I learned that Asperger was not even the first in the twentieth century to write about autism. And I learned just how much of modern culture, particularly technology, is due to the special talents and skills of those on the spectrum. I wonder how much we have lost due to the labeling and throwing out of people in this rich tapestry.
Silberman also looks at the question of the “autism epidemic.” And he looks at how we define autism: much of what Asperger originally espoused has come to be accepted. He explains how a typographical error in the DSM-IV — substituting the word “or” for “and” — had a major impact on the number of people diagnosed.
The book prompted me to think about a paradox in our culture. To help people in need, we have to diagnose them so that they qualify for services. But to diagnosis is to pathologize, and what could be seen as a possible strength is redefined as a liability. A single behavior can be seen more than one way, depending on the context and the culture. A child could land in a place where she is accepted for who she is and nurtured and where she can live her best life — or she could land in a place where her behavior and way of communicating are seen as a disease, a deformity, and where she is locked away and treated as less than sentient.
Some years ago I was tasked with helping to implement a recovery model at a mental health center. I proposed that those receiving services would be seen as the experts of their lives and would make decisions about their care — and I was met with laughter. “That will never happen,” the staff told me.
What I found particularly hopeful in the stories Silberman shares is how people are taking charge of their lives and becoming empowered. Advocates are asking us to work with the person in front of us rather than seeing them as a diagnosis or trying to fit them into a box. Some have proposed a solution-oriented framework: instead of looking to find a “cure” or seeing autism as an “error of nature,” Silberman writes, these advocates believe that “society should regard it as a valuable part of humanity’s genetic legacy while ameliorating the aspects of autism that can be profoundly disabling without adequate forms of support.” Silberman goes on to look at ways this can be done.
In fact, there are so many genes associated with autism, Silberman explains, that writer Emily Willingham titled one of her blog posts “This Just In … Being Alive Linked to Autism.”
NeuroTribes: The Legacy of Autism and the Future of Neurodiversity
Avery, August 2015
Hardcover, 544 pages