Tuesday, January 26, 2016

The Boston doctor who studied autism before autism

In 1846, the Boston physician Samuel Gridley Howe (pictured), already renowned as the founding director of what would become the Perkins School for the Blind, set off across Massachusetts on a mission. The state had tasked him with determining “the condition of the Idiots of the Commonwealth,” their number, and “whether anything can be done in their behalf.” 
Over the course of months, he and other experts would examine hundreds of Massachusetts residents with intellectual disabilities. At the time, most such people were either kept at home for life, or became wards of the state. There were few resources for their education. 
Howe saw children and adults with a huge range of cognitive disabilities. But one finding surprised him in particular: As many as 100 people he studied did not appear to fit common notions of the mentally disabled. They were “easily distracted,” in constant motion. Many were mute, or communicated only by “echolalia” — repeating the words and phrases of others. Yet these patients demonstrated varied, often startling levels of mental acuity. 
One patient, listed as Case 27, had committed to memory more than 200 songs, and “will instantly detect a false note in any of them,” as Howe wrote in his 1848report to the state Legislature. Another, Case 360, could quickly calculate the number of seconds a person had been alive. Others could “perform many simple mathematical operations with a great deal more facility than ordinary persons.” 
These people were widely grouped with others with cognitive disabilities as “idiots.” Recently, however, three writers have identified Howe’s outliers quite differently: They say these Massachusetts residents might have had autism. 
In their new book “In a Different Key: The Story of Autism,” coauthors John Donvan and Caren Zucker claim they’re the first to recognize Howe’s research as an early inquiry into a group of people who could be retrospectively diagnosed on the autism spectrum. In fact, as they note in a related article in the current issue of Smithsonian Magazine, they were inspired by the similar findings of James Trent. Trent, a professor of sociology and social work at Gordon College in Wenham, studies the history and policy around intellectual disability and is the author of a 2012 biography of Howe, “The Manliest Man.” 
These three writers agree that Howe’s identification of this distinct group marks a key contribution to our understanding of autism, a condition that has seized the public’s attention over the past few decades as diagnoses have rapidly risen. Until now, the search for people on the autism spectrum prior to the child psychologist Leo Kanner’s popularization of the term in 1943 have largely focused on speculation about famous historic figures, from Mozart to Einstein. 
In the recent bestseller “NeuroTribes: The Legacy of Autism and the Future of Neurodiversity,” author Steve Silberman notes several frequently cited cases, such as the feral child known as the “Wild Boy of Aveyron” and the 18th-century Scottish nobleman Hugh Blair. He also recounts the story of the renowned British scientist Henry Cavendish (1731-1810), whose reported eccentricities and “shyness” led the late Oliver Sacks and others to suggest he had Asperger syndrome. 
But Howe’s 19th-century group research offers stronger support that autism has always been present in the human race, according to Donvan: “It challenges the notion that autism’s existence really begins only when the diagnosis was made in the 20th century.” It’s a powerful counterargument, he said, to those who contend that autism is a modern phenomenon — the product of vaccines (a discredited theory) or some undetermined environmental factor. Instead, it offers some hint that the diagnosis rate might have skyrocketed largely because the public and the medical community have become so much more familiar with the telltale signs. 
Howe’s scientific approach is compelling, Donvan said. As a phrenologist — a doctor who believed, as did many in the 19th century, that a person’s intelligence and character traits could be seen in the shape of his skull — Howe was driven by numbers and measurements, the author noted. As a result, “he provided data” — charts, tables — “that was unprecedented, across a broad population.” 
“The whole subject of idiocy is new,” Howe declared in his report to the Legislature. Intrigued by new developments in France, where educators were working for the first time with the mentally disabled, Howe and colleague Samuel B. Woodward (who was superintendent of Worcester State Hospital, which was recognized as pioneering in the humane treatment of people with intellectual disabilities) hoped to convince the public of the benefits of educating the “ineducable.” 
Trent, in his Howe biography, mentioned that the patients Howe and Woodward identified sounded to him like they may have been autistic. “I note that in the book, though I don’t develop it very much,” he said. But it was an earlier book by Trent, “Inventing the Feeble Mind,” that tipped off Donvan. Though that book doesn’t mention autism, it does cite Howe’s overall study. Donvan, intrigued, tracked down the source material—Howe’s report to the Legislature. 
“That’s when my heart sort of stopped,” he said. Some of Howe’s descriptions of his patients, like the one with perfect pitch, sounded to him like proof there were people with autism long before it had a name.“I’ve developed good radar for this,” Donvan said. “We’re hedging a lot, but I’m pretty convinced. These are real, anonymous, not successful people, people who are often left out” of the historic record rather than quirky celebrities, he added — and that, in some ways, makes their stories particularly valuable. 
For those in the autism advocacy community, Howe’s report offers a tantalizing kind of prehistory. Lydia Brown, chairwoman of the Massachusetts Developmental Disabilities Council and a former policy team member of the Autistic Self Advocacy Network, said in an e-mail that it’s “fantastic to learn more about a marginalized community’s history in part by looking to see evidence of our existence in the past. . . I think it’s important and beautiful to look for traces of disabled people — and autistic people in particular.” 
In Howe’s report, the doctor noted that his era’s medical experts had names, lamentable as they may seem today, “to mark the idiot, the fool, the simpleton, the weak-minded,” as well as “the man of common sense, the strong-minded man, the man of talent, and the man of genius.” But the medical community was lacking categories for “the thousand intermediate grades” he and Woodward acknowledged. 
More than 160 years later, one of the categories they observed might have a familiar name.