In a Different Key: The Story of Autism, by John Donvan and Caren Zucker
The New York Times Sunday Book Review
By Jerome Groopman January 26, 2016
Through history, the commandment to act with empathy has been more honored in the breach than in the observance. In their new book, John Donvan and Caren Zucker chart America’s path to recognizing autism as part of the human condition, making a case that the arts as well as advocacy have been central to the process. The authors come from the world of television news — Donvan is a correspondent for ABC, and Zucker is a journalist and producer — and their book is crafted like a tightly edited news special: The prose is vivid, the tempo rapid and the perspective intimate, as if each character has been filmed with a hand-held camera. They depict history through biography, recounting the stories of individuals with autism and their families, physicians and psychologists — focusing on those who challenged traditional concepts of cognitive and behavioral debility and led the way to broader acceptance of autism.
“In a Different Key” posits that the condition is not a new phenomenon. In 15th- century Russia, some autistic people were believed to be “holy fools,” touched by God, and this divine connection conferred protected status. In early 1900s America, society largely aimed to purge rather than protect “mentally defective” people. The eugenics movement was embraced by prominent doctors and biologists as well as social advocates like Margaret Sanger and political leaders like Theodore Roosevelt. “Defective” people were to be relegated to institutions and prevented from procreating by sterilization; mercy killing was even proposed in The American Journal of Psychiatry.
In 1933, as eugenics was peaking in popularity, Donald Triplett, the first child to receive a diagnosis of autism in America, was born to an educated Mississippi couple. He had a distinctly different way of speaking, substituting “hexagon” for the number six, and using “you” to indicate “I” and vice versa. More mysterious, however, was his emotional life:
“Donald showed scant interest in the inhabitants of the outside world, and that included his parents,” Donvan and Zucker write. But “he would turn violent the instant his activities were interrupted, whether he was sketching words in the air or spinning pot lids on the floor. . . . He would not tolerate even the slightest changes to his physical surroundings.”
After more than a year of institutionalization with no discernible improvement, Donald was brought to Dr. Leo Kanner at Johns Hopkins. Kanner observed Donald but did not immediately come to a diagnosis, nor would he for the next few years. In 1943, however, he published a seminal article titled “Autistic Disturbances of Affective Contact” describing 11 such children; Donald was Case 1.
Kanner was the first to identify autism in America, and he believed it was present from birth — but found maternal coldness to blame, as did others, notably Bruno Bettelheim, director of the University of Chicago’s Sonia Shankman Orthogenic School, a “laboratory for developing new methods in the treatment of disturbed children.” The authors eviscerate Bettelheim as a “prolific embellisher of the truth,” who used the appellation “doctor” without being a licensed physician (he held a doctorate in art history). He wrote of an autistic child named Marcia obsessed with the weather, and claimed he unraveled the meaning of her obsession by breaking the word into three smaller words “we/eat/her.” The girl’s fixation grew out of a deep fear that her mother “intended to devour her,” Bettelheim explained, but with treatment, she was “well underway to complete recovery.” He described the mother of another autistic child, saying, “To be nursed by her is like being poisoned.” Blaming the mother for the child’s difficulties became more popular after Kanner’s report, not only in clinical journals but also in the lay press. Bettelheim escalated the rhetoric, comparing the children to prisoners in concentration camps, and their mothers, by analogy, to Nazi camp guards.
The idea of the toxic mother did not sit well with Ruth Sullivan, a former Army nurse whose son Joe had autism. She took Joe to see specialists trained by Kanner in 1963, but rejected “the thought that she had made Joe autistic — not then, or ever.” Her family could serve as “an experiment with a ready-made control group,” Donvan and Zucker write. She had seven children, “all loved and mothered in the same way, but only one had autism.” Sullivan would go on to become “the doyenne of autism activists” and a prominent member of the National Society for Autistic Children, which connected families nationwide.
At pivotal points in the book, the prose grows overheated. “It was time to lead a charge against the status quo and to do it as a mother, even if being one robbed her of credibility in the eyes of professionals,” the authors write of Sullivan. “She believed in the power of large numbers, the potential for a group of women to force change.”
Sullivan, of course, was not living in a vacuum. Her challenge to the conventional wisdom about autism needs to be placed in the context of the time, in the ’60s, and as part of a wave of disenfranchised groups questioning authority and demanding society shift from discrimination to tolerance, if not acceptance. The civil rights movement asserted that people of color deserved a place at the table, literally and by law; feminism brought women to the fore in the workplace and in politics. Breast cancer advocates began to push surgeons to adopt the less disfiguring but equally beneficial lumpectomy instead of the radical mastectomy, and sought to influence how funding was channeled from the government for research. Two decades later, the playbook of feminist health advocacy gave a blueprint to gay activists in the wake of the AIDS epidemic as they confronted drug companies and the government. Unfortunately, such context is absent from the narrative; no direct links are drawn to feminism, gay rights or AIDS. This omission makes the story incomplete. We are shown what happened, who made it happen, but never why.
However, the authors do devote much space to how film and television increased awareness of autism. The authors highlight the movie “Rain Man” (1988), which first introduced autism to the general public and made an immediate impact. “All over the United States and Britain, anyone with an intimate connection to autism suddenly began getting questions,” Donvan and Zucker write. “They came from friends and family, and, in many cases, from reporters, all of whom were newly curious about this fascinating condition they had never given much thought to, or even heard of, before seeing the movie.” The film was not perfect, the authors allow, but it was “the first movie to get autism right, and to reach so many people while doing so.” Some two decades later, the HBO biopic about the writer and animal scientist Temple Grandin, a “real-life celebrity with autism,” portrayed by Claire Danes, would “carry the message even further,” depicting the unique contributions of people on what is now called the autism spectrum.
As the book approaches the present day, Donvan and Zucker address the dangerous detour taken by prominent advocacy groups about the causes of autism. A deeply reported chapter features Bob Wright, the former chief executive of NBC, who became involved in autism advocacy after his grandson received a diagnosis. Wright believed that there needed to be “a big tent” effort to ultimately understand autism. He founded a nonprofit, Autism Speaks, in 2005, which enjoyed great success until it became “entangled” in the work of Andrew Wakefield, the British gastroenterologist, who tied development of autism to the MMR vaccine in an article in The Lancet in 1998. His report was soon discredited, and the article retracted. Alas, this research, shown to be severely flawed, is still cited by opponents of childhood vaccination.
Autism Speaks tried to remain neutral in the “debate” but gave a voice to anti-vaccination activists, one of whom was Wright’s daughter. While championing the “proven benefits” of vaccination, it also promised to investigate whether vaccines were dangerous. “Attempting to bridge the chasm between two polarized constituencies, the organization had been forced into rhetorical somersaults,” Donvan and Zucker write, and it never regained its former prominence after the controversy.
The book concludes with a vignette. In 2007, an autistic teenager on a bus in New Jersey began to be harassed by two men. “What’s your problem, man?” one asked, referring to the teenager’s repetitive movements. Just as the atmosphere was growing more tense, a passenger confronted the bullies. “What’s his problem?” he said to them. “He’s got autism. So what’s your problem? How about you shut up?” Understanding moves us to silence cruelty. “It happened on a bus in New Jersey,” the authors write. “It can be that way anywhere.”
IN A DIFFERENT KEY
The Story of Autism
By John Donvan and Caren Zucker
670 pp. Crown Publishers. $30.
Jerome Groopman is the Recanati professor of medicine at Harvard and a co-author, with Pamela Hartzband, of “Your Medical Mind: How to Decide What Is Right for You.”
A version of this review appears in print on January 31, 2016, on page BR14 of the Sunday Book Review with the headline: A New Normal Approaching Autism.