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As autism research widens, we are beginning to understand more about this neurological disorder and how it affects cognition, as well as social and verbal skills in both children and adults with varying degrees of severity. In their new book In A Different Key: The Story of Autism, Caren Zucker and John Donvan reflect on the last seventy years since the first diagnosis was given. Below, read their answers behind why they wrote the book, and above, Read It Forward has curated fourteen reads—both fiction and non—that help explain some of the mysteries and stigmas wrapped up in the autistic spectrum.
Q) How did the diagnosis of autism come to be recognized? Who were the scientists behind it?
A) Autism is a name we give to a condition whose boundary lines are not especially clear, and never have been. Our conception of it dates to the time around World War II. Just before the war, a pediatrician in Austria named Hans Asperger began using the word autistic to describe a number of boys he was treating who demonstrated high intelligence but had severe limitations in social skills. At the same time, a child psychiatrist in Baltimore named Leo Kanner met the first of eleven children whose “autistic” traits he would write about in 1943, in the paper that introduced the concept of autism to the world. The very first person who received the diagnosis was Donald Triplett, who is still alive, and whom we profile in our book.
Q) In your book, you say that autism existed decades, even centuries, before the diagnosis was invented. What evidence of this did you find?
A) Before Kanner’s and Asperger’s research, autism almost certainly existed, but the behaviors that signal it were either overlooked or diagnosed as intellectual disability, or even mental illness. We are intrigued by studies that have attempted to find autism in the historical record, in descriptions of people who lived and died before the diagnosis was coined. Our most interesting find was in a study undertaken in the mid-nineteenth century by an educator named Samuel Gridley Howe, who recorded data on every person in Massachusetts who exhibited intellectual disability (then known as “idiocy”). When we looked at his cases, we felt an almost breathtaking sense of recognition: his subjects sounded like people who today would be diagnosed with autism. Though it is difficult to retrospectively diagnose people with certainty, the case for Howe having come face to face with autism—without knowing it—seemed so compelling to us that we had to include it in the book.
Q) What did you discover about the role of parents in helping children with autism gain acceptance and in gaining civil rights for them?
A) Parental love has been the driving force behind almost every change made for the betterment of children “on the spectrum.” Though they began as amateurs in the ways of science, politics, and bureaucracy, parents were, decade after decade, gladiators in the cause of making a place in the world for their children. The refrigerator mother theory was beaten back by parents. Likewise, the campaigns to shutter institutions and force open classrooms were spearheaded by parents. Parents also persuaded scientists to reassess the scientific value of autism research and worked assiduously to make everyone else understand that autism existed, and that it mattered. Today, people with autism are speaking for themselves more and more, but for decades they had only their mothers and fathers to speak for them. All activists today stand on the shoulders of those earlier generations of autism moms and dads.
Q) You tell the story of Donald Triplett, the first person diagnosed with autism, now in his eighties and living in the same small Mississippi town where he grew up. In what ways is his story unusual? In what ways might it serve as an example for other adults with autism?
A) Donald had a rough start, but he has had a wonderful life, and not just for a person with autism. He is a healthy man in his early eighties who still plays golf and lives contentedly on his own, surrounded by family and friends he has known all his life. Much of this is due to Donald’s intelligence and adaptability. But we think the circumstances in which he grew up are also a factor in how much he has grown as a human being. In the town of Forest, where he was raised, everyone knows everyone else, and tomorrow is likely to be much like yesterday. His parents were owners of the local bank, wealthy by Mississippi standards. Given the town’s ethos, and given how deeply embedded his family was in the community, residents slowly came to embrace the strange boy in their midst. He was respected, included, encouraged, and protected. This went so deep that, in 2007, when we made our first visit to Forest, residents warned us that we’d better not do anything to hurt Donald, because they “knew where to find” us. They were not entirely joking!
We wish we could bottle the attitudes Forest, Mississippi, had toward Donald and export them to any setting where people stand out as different by virtue of disability.
Q) Many people think of autism as something that affects children, but you point out that it’s a lifelong struggle. What obstacles do you see affecting people who are aging with autism?
A) Every child with autism becomes an adult with autism, and yet autism is still most often framed as a condition affecting children. There is one upside to that: society’s response to children with autism has become more and more positive with time. Kids with autism go to school and receive therapy because we finally and slowly woke up to their needs.
Unfortunately, that has yet to happen with adults. Most of the supports society has developed for people with autism end at the age of twenty-one. There is a huge unmet need for housing, work opportunities, and support staff. Finding a way to fully integrate adults with autism, as we have done to a significant degree with children, is a job half done at this point. In a Different Key shows how getting the first half done was accomplished. We hope it can serve as an inspiration for the work that still remains.
Featured image: Green Color/Shutterstock.com; Author photos: © Heidi Gutman, © Ralph Alswang.