‘In a Different Key’ presents symphony of autism’s history

In September 1933, Mary and Beamon Triplett of Forest, Mississippi, welcomed their first child into the world. At first, Donald appeared to be a healthy, normal baby boy. But that soon began to change.

Donald developed inexplicable behaviors, staring into space for lengthy amounts of time or repeating certain words ad nauseum. He had a tremendous capacity for recall, but would fly into a fury if interrupted mid-task. He had the same volatile reaction to small variations in his routine.

Most distressing to his parents, however, was their son’s seeming indifference to their presence. Lacking any explanation for Donald’s behaviors, his mother concluded that her little boy was “hopelessly insane.” On the advice of multiple doctors, she and her husband decided to commit Donald to the state’s care at the age of 4.

Luckily for Donald, his stay at the children’s institution lasted just a year. Unlike thousands of other parents at the time, Donald’s parents came to regret their decision and took their son home. Their determination to understand and to help him eventually brought them to preeminent psychiatrist Leo Kanner, who in 1943 published a paper titled “Autistic Disturbances of Affective Contact.”

Donald was the first child in history to be diagnosed with autism.

Personal history:

Donald’s intensely personal, highly detailed story sets the tone for “In a Different Key: The Story of Autism,” a new book by Emmy Award-winning news correspondent John Donvan and Peabody Award-winning news producer Caren Zucker. The duo spent seven years researching and writing the book, but their ties to autism run deeper: Both began reporting on the topic nearly two decades ago — well before autism entered the mainstream national conversation. They also have family ties to the condition: Zucker’s son has autism, as does Donvan’s brother-in-law.

Over 550 pages, Donvan and Zucker present a meticulous, absorbing history of autism’s transformation from an unknown malady thought to warrant institutionalization and a diagnosis “shrouded in shame, secrecy and ignorance,” to an increasingly accepted, even celebrated, condition. The book’s 10 parts form a stepwise chronology of that metamorphosis, told through interviews with more than 200 people, including individuals with autism, caregivers, advocates and researchers.

Donvan and Zucker tackle the push for change through the eyes of key protagonists. These include Lorna Wing, psychiatrist and mother of a daughter with autism, who wrote the first book for parents of children with the condition and argued that autism occurs across a spectrum, and Tom Gilhool, lawyer and activist, who in 1971 paved the way for children with autism to attend school. The book also highlights the legions of parents who convinced scientists in the 1990s that autism was a field worthy of research.

Revolution in progress:

But there are dark stories, too, such as the account of Alec Gibson. The California father murdered his 13-year-old son with autism to “save him from the world’s cruelties.” Also detailed in the book is a series of experiments in which researchers gave nonverbal children with autism the hallucinogenic drug LSD in an attempt to make them speak.

Ultimately, though, Donvan and Zucker conclude that public attitudes about autism are moving in the right direction, thanks to “the heart, the sweat, the stubbornness and the fight” of a cast of players — most notably, parents.

Parent advocacy “turned autism from a condition that was barely recognized into the most talked-about, most controversial, diagnosis of our time,” the authors write. The neglect, cruelty and scorn that once characterized society’s reaction to difference are giving way to the notion that those who vary from the norm have their own unique gifts.

Many challenges remain, of course. Donvan and Zucker point out that most research studies and services focus on children rather than adults. In fact, most programs for people with autism end when an individual turns 21. After that, few opportunities exist for work or independence, leaving many adults with autism living in their childhood bedrooms and relying on their parents for care. Those who do not have this option often wind up in ‘homes’ — state-supported, dormitory-like establishments that leave little room for personal growth or opportunity.

Unfinished symphony:

But the story of autism is far from finished. As awareness of the condition continues to grow, Donovan and Zucker hope that shared responsibility and community acceptance become the norm. Slowly but surely, society is moving in that direction. Small-scale, experimental programs that integrate adults with autism into communities are popping up in the U.S. and Europe, and some individuals manage to find jobs by themselves, often thanks to their parents’ dedication.

Indeed, Donald, who is still alive today and in his 80s, is a beloved member of his hometown community in Forest, Mississippi. His family ensured that he would always have a job at the local bank, which they owned and where he worked for decades. In the years since the death of Donald’s parents, former coworkers have become a surrogate family, welcoming Donald at church, arranging birthday parties for him and greeting him at the golf course.

Not every place is Forest, Mississippi, and not every person with autism enjoys the same privileged background and support that Donald has. But Donvan and Zucker look forward to a world in which “acceptance of individuals’ autistic differences would become so widespread and automatic that, in virtually any setting … we would recognize, and take steps to welcome and protect, the odd man out.”

Rachel Nuwer is a freelance science journalist and contributing writer for Spectrum.