In a Different Key: The Story of Autism (41 page)

After that, the place was used to make autism history.

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I
N THE
1960s
AND
1970s, Britain was as short on autism researchers as the United States. The few who did study the topic were concentrated around London, and most knew one another well. They were also in fruitful contact with their colleagues in the States. Indeed, after World War II, British and American scientists had come to dominate the investigation of the human mind, unseating their German-speaking colleagues as the leading influences in the field.

Not surprisingly, the scant literature on autism that existed focused almost exclusively on American or British children. Mention of other nationalities in the autism literature was so rare for so long that the mere fact of speaking English could almost have been mistaken for a risk factor for autism.

Yet despite their common language, American and British researchers had noticeably different priorities. Americans sought to treat—and even cure—autism. Among researchers in the United States, there was a sense of emergency, a drive to find solutions as soon as possible. In
Britain, the approach was calmer, aimed more at finding an explanation for autism. Driven more by curiosity, British researchers sought to map the contours of autism and understand the autistic mind.

The British approach—which they stuck with for the next five decades—produced a distinctive set of outcomes. A small group of British-trained experimental psychologists and research psychiatrists came up with insights that permanently altered how autism was perceived and understood around the world.

The British, too, always kept one eye on a larger question: What does autism reveal about the workings of the human mind in general? That is not to suggest that these scientists were not motivated by the wish to bring relief to the children and their families. But at the same time, the children were considered rare and fascinating subjects, fortuitously available in one place—that house on Florence Road.

Indeed, hardly an autism study took place in Britain in the 1960s that did not take the researcher to that address. First, though, the parents had to get the place up and running.

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I
T DOES NOT
do justice to the early organizing efforts of British autism parents to say they merely paralleled those of American parents. That is because, in many important respects, the British parents were the actual innovators. They did it first, and then the American parents consciously followed their lead. The British were the first, for example, to organize a national society in 1962. They were the first to use the newspapers to get their story told. They were the first to pick a puzzle piece for their logo—which would be
copied again and again by autism groups around the world.

They did not, however, build the first autism school. A few had already been established in and around New York City around 1960. But the school they did build was the first to develop a global reputation, drawing visitors from around the world. Originally called the Society School for Autistic Children, it became renowned for proving that such children
could
be educated. For that, much of the credit must go to the matronly woman who lived on the top floor—a naturally gifted
teacher named Sybil Elgar.

For Elgar, working with children with autism was a second chance in life. She had trained as a mortician just after World War II, but only ever worked as a government clerk, and then as a school secretary. In middle age, she was obliged to leave the paid workforce entirely to care full-time for her sick mother. In these narrowing circumstances, well into her forties, Elgar signed up for a correspondence course on how to be a teacher.

It was a slow and tedious way to enter a new profession, since her contact with professors took place entirely through the mail. It did require, however, that she get some periods of exposure to actual children in a classroom. In 1958, she fulfilled part of that requirement by spending a day at the Marlborough Day Hospital in London’s St. John’s Wood neighborhood, on the ward designated for children labeled “severely emotionally disturbed.” She did not then realize it, but many of the children she saw that day would have qualified for diagnoses of autism.

Her day at Marlborough sickened Elgar emotionally. It was a classic scene of institutional life: the children were bereft of attention or meaningful stimulation, and they certainly were not learning anything useful. Elgar confided in friends that the place was “soul-destroying.” Haunted by the memory, she made a return visit in 1960, hoping to see improvement. When she saw none, she resolved to start a school of her own for exactly these sorts of children, ones who had no champion. She was forty-six years old.

Two years later, Elgar began working with six boys in the basement of her North London home, all six of whom had been labeled “severely emotionally disturbed.” The diagnosis of autism, which would have fit at least some of them, was still not familiar to most clinicians. Elgar had never heard of it. By 1963, however, she was recognizing the relevance of the concept to her work. She approached three London-based child psychiatrists to offer spaces in her school to any of their patients with the condition. Unimpressed by her credentials, not to mention her working-class accent, none of them took her seriously.

The mother of a boy with autism did, however.
Helen Green Allison was an American in London whose son Joe, born in 1957, was diagnosed with autism by the age of four. Allison had been living in
Britain since World War II, when she arrived to study at Oxford, and stayed to work in military intelligence. In 1961, she went on the BBC
Women’s Hour
radio program to talk about her son. After that appearance, she was contacted by families from all over Britain who had similar stories. She was the mother who, along with a small group of other parents, launched the world’s first autism advocacy group, using a name they instantly regretted: the Society for Psychotic Children. Within months, they rechristened themselves the National Society for Autistic Children.

By this time, Allison had Joe in Sybil Elgar’s little school. On his first day there, he smashed every lightbulb in the basement schoolroom. Elgar was unperturbed. She replaced the bulbs, then set out to connect with this wildly behaving boy. Watching, and improvising, she soon saw that Joe learned better when he was shown how to do something—even simple-seeming tasks like sitting down in a chair—rather than having it explained to him with words. By instinct, Elgar had stumbled onto an important insight: visual processing tends to trump auditory processing in some
children with autism. In itself, this was evidence of a neurological basis to the condition, but in 1963, it was a possibility that university researchers were barely beginning to consider. Elgar also experimented with imposing structure on the children’s activities. She set strict schedules and established boundaries around work and play areas. By doing so, the self-taught teacher was overruling the professional psychoanalysts, who were still recommending environments of unlimited freedom to unshackle egos boxed in by unloving mothers. When that failed to work, as it invariably did, their next suggestion was usually an institution.

But Elgar’s method got results. Joe settled down and even began using words for the first time. When Helen Allison shared this with other parents, Elgar found her teaching in much higher demand. The National Society decided to fund a bigger school, because Elgar’s basement had run out of space. Elgar’s husband, Jack, a former railway clerk, happened to hear about a policemen’s dormitory coming up for sale in 1964. The society put in a timely bid, and the Elgars ended up living on the top floor of the house at 10 Florence Road.

The Society School for Autistic Children soon expanded into the two houses on either side of number 10. Money came from government and from private donors, including celebrities, among which were three of the Beatles, who spent hours playing with the kids. Eric Schopler crossed the Atlantic for a look inside, taking home new ideas that he blended into his own program in North Carolina. This master teacher, Sybil Elgar, would eventually be honored by the queen. The parents honored her as well, when they renamed her school “The Sybil Elgar School” in gratitude for what she was doing there every single day: proving that children with autism could be taught.

Over the next decades, hundreds of children were educated there. Meanwhile, many of them made cameo appearances in some of the most forward-thinking research ever undertaken in the quest to understand what autism really is.

—

O
NE DAY IN
1967, a woman and a man, both of them scientists, showed up at Florence Road hauling along a heavy wooden box, roughly the size of a window air conditioner. A hole cut in one side was just large enough for a child’s head to poke through. For the next several hours, a long line of boys and girls with autism sat down in a chair in front of the box and did just that—they stuck their heads inside, as the pair watched and took notes.

Data was everything to the two scientists who, in the compact universe of London experimental psychologists, were already research legends. The Australian-born Neil O’Connor and the German-born Beate Hermelin were seen as superb designers of brilliant experiments that shed light on how the minds of children with autism worked—and how they worked differently from everyone else’s. Before O’Connor and Hermelin, almost no one had bothered
to ask these questions.

The pair worked out of Maudsley Hospital, a psychiatric facility in South London. Redbrick and baronial, “the Maudsley,” as it was always called, was paired operationally with Bethlem Royal Hospital, the direct descendant of the notorious thirteenth-century insane asylum known as “Bedlam.” In the twentieth century, the Maudsley’s
wards were used for teaching by the Institute of Psychiatry, the country’s top postgraduate training program. Most of Britain’s leading psychiatrists passed through on the way to becoming fully certified.

O’Connor and Hermelin, who were psychologists, both spent time at the Maudsley. But starting around 1963, their desks were shifted to a set of wobbly wooden huts that stood in the big building’s shadow. Thrown up after the war, those rough structures became home to a research group known as the Social Psychiatry Unit. An undertaking of Britain’s Medical Research Council—the equivalent of the National Institutes of Health in the United States—the SPU brought together a disparate collection of laboratory psychiatrists, social scientists, statisticians, and graduate students. They all wanted to make a mark.

The unit became an intellectual hothouse. It was London, after all, and it was the 1960s. Iconoclasm ruled. Everything “establishment”—art, music, fashion, humor—was being frisked, mocked, shaken up, and made to account for itself. Something parallel was happening in the social sciences in Britain, especially at the Maudsley. The researchers in the huts—colleagues, friends, and competitors all—egged one another on in pursuit of the same shared objective: to challenge every known tenet of psychiatric and psychological dogma by putting it to the test of experimentation. That was the ethos and the essence of experimental psychology, which was the specialty of Hermelin and O’Connor: Test everything. Demand data.

In 1963, the pair turned their attention to autism. They wanted to give the kids tests—actual small tasks—so that they could measure performance. At the time, this was generally considered a futile proposition, since so many of the kids did not communicate in a recognizable way or were otherwise uncooperative. Hermelin and O’Connor, however, believed that there were still ways to elicit observable physical and mental responses that could be measured and quantified, ones that did not require much cooperation or conversational communication. They built that odd wooden box with these goals in mind.

—

T
HE INSIDE OF
the box was painted completely black. Besides the large hole on one side for the children to put their heads through, there was a tiny peephole-sized one on the opposite side that let the researchers watch the children’s faces while they were in there. That day, more than two dozen kids were brought into a small room set aside for the researchers. Some stuck their heads into the box because they were curious, others because they wanted the candy that was being used as a bribe.

For the first few seconds, the kids saw only total blackness. Then suddenly, a spotlight flashed on, revealing a human face floating in the far dark corner—actually a live person around back, pressed up against a third opening. For ten seconds, the person’s eyes closed; then they opened again. After thirty seconds, the light was cut, and the box went black again.

O’Connor and Hermelin were interested in the kids’ eye movements. They wanted to see where the children looked when the light came on and for how long, then contrast this with what happened when the same children were run through the experiment several more times, albeit with a key difference. In these trials, instead of a real live person’s face, the light revealed pairs of upright white cards displaying various images, abstract geometric shapes, plus one that showed a photograph of a face.

It took a few hours to run the paces with all twenty-eight children who cooperated that day. Then, on a second day, Hermelin and O’Connor took the box to another school to run the tests on a roughly equivalent number of younger children who were matched with the first group in so-called mental age. The children in this second, control, group did not have autism.

When the experiment was over, O’Connor and Hermelin analyzed the data and found that the children with autism, as a group, differed significantly from the control group in the attention they gave to the dark and empty areas of the box. The control group paid almost no attention to the darkness, but the children with autism, judging by where their eyes went, were quite curious about the shapeless voids and shadows.

It was a paper-thin distinction, but it was real. And it was typical of
the line of inquiry Hermelin and O’Connor pursued. Over a five-year period, through similarly exacting experiments, the pair continued to discover narrow yet quantifiable ways in which children with autism processed the world differently from other children. They discovered, for example, that many children with autism relied on their sense of touch more than they did hearing or seeing. In all, their experiments produced an array of data making clear that autism had a neurological basis. Here at last was proof that autism had to do with the brain, not with a mother’s love.