Tracing autism, from past to present
More than 3 million Americans, including one in 45 children, have autism, a spectrum of disorders characterized by impaired social interaction and repetitive or ritualistic behaviors. Increasing rates of diagnosis, the vigorous efforts of advocacy organizations like Autism Speaks, whose jigsaw puzzle logo adorns countless bumper stickers, and a discredited though widely publicized claim about a possible link between the MMR vaccine and autism have all thrust the condition into the national consciousness.
But just 16 years ago, when John Donvan and Caren Zucker, two television journalists, wanted to produce a segment about autism for the nightly news, they found it a tough sell with network executives. Donvan, an Emmy-winning correspondent for ABC News, said in a phone interview from his Washington, D.C., home that there seemed little awareness of the condition in 2000, except among families affected by it. He said, “People who knew about autism knew about autism. And everybody else maybe kind of knew about ‘Rain Man.’ ”
Donvan and Zucker, a news producer, share a personal as well as a journalistic interest in autism. Donvan’s brother-in-law and Zucker’s son are both affected. The team created a series, “Echoes of Autism,” for ABC, wrote an article in The Atlantic about Donald Triplett, the first person diagnosed with autism, and just published “In a Different Key,’’ a comprehensive history of the condition, centering on Triplett’s story.
Triplett was not actually the first person with autism. Donvan and Zucker recently wrote an article for Smithsonian about their discovery that Samuel Gridley Howe, founder of Perkins School for the Blind in Boston, described several people who likely had the condition in the 19th century. But in 1943, when Triplett was 10, he became the first patient to whom pioneering Johns Hopkins neurologist Leo Kanner applied the newly coined term “autism.’’ Triplett’s parents had brought the boy to Baltimore from their home in Forest, Miss., because they were concerned about his extreme social awkwardness and obsession with numbers.
Triplett returned to Forest, where he graduated from high school, and now drives, golfs, and lives independently. At 82 he has spent his life among neighbors who accept and even admire him. Many told Donvan and Zucker that they consider Triplett, who can count the bricks on the side of a building at a glance, a genius.
Not all the stories in “In a Different Key’’ are so uplifting. Psychiatrists in the mid-20th century theorized mistakenly and cruelly that “refrigerator mothers” caused autism by withholding affection from their infants. Hans Asperger, for whom a syndrome on the autism spectrum is named, cooperated in the murder of disabled children by the Nazis.
Neither Donvan nor Zucker foresee a cure for autism emerging in the near future. In a phone interview from her home in New Jersey, Zucker noted that autism is very complex, and may actually be several different conditions.
The authors do see some progress in the acceptance of people with autism, led, in part, by proponents of neurodiversity, They feel more people with autism could reach their full potential if they had the kind of support Triplett has had in his community. Zucker acknowledges that not everyone can live in a small town like Forest. Still, she thinks it’s realistic to expect her son, now 21, to live in a society that considers him “one of us, as opposed to being the ‘other.’ ”