Also published on this date: Shelf Awareness for Thursday, November 12, 2015

Thursday, November 12, 2015: Maximum Shelf: In a Different Key: The Story of Autism

Crown: In A Different Key by John Donvan & Caren Zucker

Crown: In A Different Key by John Donvan & Caren Zucker

Crown: In A Different Key by John Donvan & Caren Zucker

Crown: In A Different Key by John Donvan & Caren Zucker

In a Different Key: The Story of Autism

by Caren Zucker, John Donvan

In 1938, Dr. Leo Kanner, a preeminent child psychiatrist in the United States, examined a boy named Donald Triplett. Donald began life developing normally, but around age two his mother grew concerned. Donald was detached emotionally and didn't show signs of self-sufficiency or ability to recognize danger. He created rituals and expressed a rigid need for "sameness." It would be four years after first seeing Donald before Dr. Kanner coined a term for this collection of irregular behaviors; at that point Donald Triplett became the first person ever diagnosed with autism. His story begins In a Different Key, ABC contributing correspondent John Donvan and ABC producer/journalist Caren Zucker's in-depth look at this puzzling disorder that was virtually unknown (or undiagnosed) only 70 years ago.

While Donald's was the first diagnosis, Kanner did not believe he had " 'discovered' autism as much as found the eyes with which to see it." Since that time, the view of this "spectrum" has come into clearer and clearer focus, but it continues to mystify those in the fields of medicine and psychology and, above all, the families of the afflicted.

Moving chronologically, Donvan and Zucker recount the milestones that took the world from being blindly unaware to spending millions of dollars a year on research and treatment for the disorder. They detail the early atrocities of prison-like institutions, selling the mentally disabled into servitude, and even "Fitter Family" contests, which had been run across the Midwest and South since 1921:

"Mrs. Watts staged her contests at state agricultural fairs, always timed to overlap with the main event--the livestock contest. Farmers had trucked in their best-looking cattle, their most perfect pigs, to compete for blue ribbons. The judges, fellow farmers, gave prizes for breeding animals that came as close as possible to flawless examples of their species. Better-bred animals, when crossed again and again, led to unending improvement in the stock of the breed.

"Mrs. Watts had the same goal for humans... 'we are testing the Joneses, Smiths and the Johnsons.' "

The shocking nature of this declaration sharpens the image of a nation intolerant of disability or difference. The environment in this era was fraught for a child with an "extreme preference for aloneness and [an] extreme need for sameness."

When the country moved past these deplorable eugenics ideas, it proceeded in the 1950s and '60s to the theory of "refrigerator mothers": autistic children were the product of mothers who didn't love them enough. Donvan and Zucker probe these elements of autism's history with journalists' eyes--reporting the facts--but they also share the heartfelt experiences of parents who persevered, fighting daily battles for their children while enduring criticism from society and the mental health community. It's Donvan and Zucker's compassionate respect for the families and their astounding achievements that makes In a Different Key so compelling.

The authors point out the strife in the autism community, dividing people who are facing the same obstacles while simultaneously opposing each other. Donvan and Zucker explain these points of view without judgment or criticism and acknowledge the contributions as well as the shortcomings of both sides. In sections on the epidemic narrative (autism is dramatically increasing in frequency) and the vaccine theory (childhood inoculations can cause autism), they illustrate how these beliefs evolved and then counter them with opposing theories and data.

Two prominent organizations of the late 20th/early 21st century, Cure Autism Now (CAN) and the National Alliance for Autism Research (NAAR), refused to merge over a slight difference in philosophy, even though they had the same goals and a unified front would have been more powerful, both financially and politically. Again Donvan and Zucker refrain from judging the decision while still imparting the key information: "And therein lay the important difference. In 1995, Jon and Portia wanted to 'hurry up science' in time to cure their own son. Eric and Karen accepted Zach's autism as a fact, but wanted good science done now for the sake of future generations."

In a Different Key recounts the many strenuous trials that families have encountered and continue to face. But it also brilliantly illuminates the successes, the strengths and the hope. A cure has not been found, nor a definitive cause isolated, but today the medical field is brimming with research. Treatment programs like Applied Behavior Analysis (ABA) are improving the lives of some people on the spectrum. Advocates are making gains in educational options and quality-of-life programs.

Personal connections--Donvan's brother-in-law and Zucker's son are autistic--could easily lead to bias, but In a Different Key strives to accurately and comprehensively educate the reader, not promote any certain school of thought. The authors' belief seems to be that an informed population is a powerful tool in the continuing fight against autism. They leave conclusion-drawing up to the reader.

In a Different Key is an eye-opening reading experience for those not intimately connected to autism--a collection of stories about everyday heroes working tirelessly to make a difference in the lives of those who, for reasons yet unknown, end up trapped inside themselves. It isn't a quick read, but rather a book to be slowly digested and absorbed. Think of In a Different Key as a treatment program for blurred sight. Everyone who reads it will experience new-found clarity. --Jen Forbus

Crown Publishing Group (NY), $30, hardcover, 9780307985675, January 2016

Crown: In A Different Key by John Donvan & Caren Zucker

John Donvan and Caren Zucker: Educating the World About Autism

John Donvan
(photo: Ralph Alswang)
Caren Zucker
(Photo: Heidi Gutman)

John Donvan is a multiple Emmy Award-winning correspondent for ABC and the moderator of the Intelligence Squared U.S. debate series. His co-writer, Caren Zucker, is a Peabody Award-winning television news producer with ABC and PBS, where she produced and co-wrote the six-part PBS series Autism Now. Both authors have a personal connection to autism and together they have written a comprehensive history of the disorder in their new book, In a Different Key.

What brought you together to write about autism?

We began working together as a producer and correspondent team at ABC News in the late '90s. At the time Caren was unaware that John's wife had a brother with autism, and that her own son, Mickey, would be diagnosed with autism in 1996. After Mickey's diagnosis, we decided, as friends and colleagues, to try to make autism something of a beat. We were not interested in doing the usual run of stories that center on the miracle cures, bizarre treatments or spectacular savant skills, but wanted to pursue a journalism of autism that would help educate those who didn't know about or understand it, and that would inspire them to compassion and generosity of spirit to those who are different because of how their brains are wired. Eventually, we launched a branded series at ABC, called Echoes of Autism. In 2001, we produced the first half-hour network special on applied behavior analysis, which is now the gold standard for autism treatment. We sat down with brothers and sisters of kids with autism, as they shared their life experiences. We produced broadcasts on how challenging it is for someone with autism to find reciprocated love. We made it a priority to produce pieces that highlighted the need for schools, and the huge shortage in adult services. And we reported on people diagnosed with Asperger's syndrome, meeting adolescents who painfully exposed how tough life was for them, with the constant bullying they experienced.

But stories on TV come and go. That is why, about six years into producing these stories, we decided we wanted to write a book that would be everlasting, and that would tell the larger, longer backstory of how families and advocates began to change the world for people with autism. We now feel we have written the definitive history of the struggle for civil rights surrounding the most controversial diagnosis of our time, fueled by hope, science and love.

How did the process of writing a book compare to your work in television?

The only commonality between the stories we produced at ABC News and the writing of the book is that they are both forms of journalism. Otherwise, writing a book is a different game entirely and we had to relearn a lot. For example, we had arrived at a clear and comfortable division of labor working in television, where we were familiar with the format and with each other's style of work. All that changed during the process of writing the book. Television, of course, has pictures, which tell at least half the story themselves. Creating a scene is a completely different challenge when telling a story with words only.

Also, although our TV colleagues may disagree, writing a book is much harder than constructing a story for television. We often say in the TV news business, "It's not brain surgery." Neither is writing a book, of course, but the research, precision, passion, imagination and effort that went into writing In a Different Key was more challenging work than either one of us has ever experienced. As already mentioned, we had to work out a way to make writing a shared activity. We'd like to believe that at the end of the day, we took the combination of our individual strengths and produced a richer book, something deeper and more important than either one of us could have done individually.

How did your collaborative process work for writing the book?

We brought different strengths to the process of writing the book. John is our "voice," the writer that turns our stories and research into magic for the readers to embrace. When we first undertook this, the plan was that Caren would travel to different places doing most of the interviews. Yet there were many interviews--with a noted expert, for example, or a person with experience of such depth that we felt both of us should have a face-to-face encounter--that became three-person events. As a parent, Caren was able to win the trust of some individuals and families who otherwise might not have shared their stories. Together we determined what stories or interviews would have to be cut from the book, as its original length was almost twice as long as it is today. Unfortunately, our research was of such a broad scope that we were unable to include everything. There were entire countries that we visited whose stories still need to be told. We hope we will be able to include some of the individuals in a future version, or article, especially those Caren met in South Africa.

Given your personal connections with autism, what, if anything, surprised you in your research and work on In a Different Key?

Caren: I cannot say I was surprised by anything. I do think, that in researching the history of autism, we saw how society repeated some of the same mistakes over again, even when there had been a previous awareness of the horrible treatment and conditions; somehow history repeated itself--institutionalization is one good example. However, the depth and passion of those fighting for the rights of people with autism was more profound than I had imagined, and taught me that although this community may still have a long way to go, we are where we are today because of the fight these parents and advocates fought: for access to schools, for the end of institutionalization, for an end to the blaming of mothers and, most important, for the ongoing battle to help find a place and acceptance in the world for people with autism.

John: I, too, was surprised by how often the same lessons had to be learned again and again, which seems to result from short-term memories about the struggles and achievements of preceding generations.

There are quite a few mortifying events in history that you chronicle throughout the book. Do you feel there are similar things happening now?

We would like to think that our book might make some impact in educating and giving the world a deeper understanding and compassion for those who have autism. You mention all of these horrible events in our history, and we tell the stories of how parents effectively battled for change. However, with each step forward, new challenges surface--the most pressing being, at present, a shortage in housing and support for adults with autism. That came about because of progress, ironically. With the demise of the institutions, we eventually created schools for children with autism, but we did not build places where adults with autism could have a life. Society has barely started figuring out how best to care for the adult members of the autism community. We still do not have an answer for parents who ask "Who will take care of my child when I die?" As a society, we must think carefully about how we treat our most vulnerable members.

Autism is seen a lot in books, movies and television these days.

Caren: I believe many of the books, movies, and television shows come from society's new awareness of autism, and it also stems from people who are part of the community doing what they can do best. The book and Broadway show The Curious Incident of the Dog in the Night-Time gave many in society an accurate glimpse into Asperger's syndrome in a way that had never been seen before. Also, Ron Suskind's writing about his experiences as a dad whose son uses Disney characters as a way to communicate, and Sesame Street's new character Julia, who will begin to educate toddlers about autism all exemplify the sorts of portrayals that add to society's awareness in a positive way.

John: A lot of the early dramatizations were too interested in autism as a vehicle for creating an exotic character, or to spell out a medical mystery that needed solving by a doctor-hero. The stories were about the doctors, not the people. That has changed dramatically, and for the better. Autistic people are today much more often presented as the protagonists in their own stories. To put it simply, I loved HBO's biopic Temple Grandin, which was based on a book by Temple Grandin herself.

There are a lot of misconceptions and fallacies about autism. If you could rectify one, what would it be?

It may prove impossible, but the conversation about autism would probably become a lot simpler, and much less marked by strife, if we could arrive at a clear, consistent and unassailable definition of the term autism itself. In what will probably come as a surprise to many lay people, this has never been achieved. The concept known as autism--its very definition in the textbooks--has wavered and shifted over time, and been pulled in and out of various shapes and colorings repeatedly in the three-quarters of a century that our book covers. Just as it is often said that "when you have met one person with autism, you have met one person with autism," it has also often been lamented that two people using the term may not, in fact, have exactly the same thing in mind. It is this aspect of the concept that has given rise to so much division over where autism comes from, how it should be treated, or even if it should be treated.

That said, society has come far in terms of raising its level of compassion toward those who are different since "autism's first child" was diagnosed, but there is still a formidable lack of knowledge, which leads people to be fearful or unkind to those they don't know or understand. It really isn't about misconceptions or fallacies; it is about tolerance for difference.

There is also a group of people within the autism community who feel we should not be trying to cure or treat people with autism. We would argue that there should be and can be no doctrinaire position on this matter, and that the desire to ameliorate true impairment should not fall victim to an idealized version of what autism embodies. That said, those who choose explicitly to celebrate their own autism as a gift have a real point to make. In their cases, we are happy to join in the celebration. --Jen Forbus

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