In a Different Key: The Story of Autism (45 page)

Where will Sally look for the marble?

Prompted by the question, the boy pointed to the blue box—to where he
knew
the marble actually was, not the yellow box, where Sally would mistakenly think it was still hidden. He had failed the false-belief test.

The next child Baron-Cohen tested did the same thing. And the next. Blue box, every time. Baron-Cohen was amazed at the consistency of the responses. Every kid was failing the test, and by doing so, proving his prediction right.

Then one boy actually passed the test. He pointed to Sally’s yellow box. A few kids later, it happened again. Still, 85 percent of the kids, ranging in age from six to sixteen years old, came up with the wrong answer. Many of them were highly verbal, with average IQs.

Baron-Cohen then took Sally and Ann to two other London schools to run the tests again with a much younger group of kids who did not have autism. None of these control subjects was older than four. Further, one of the school’s populations was made up of children with intellectual disabilities, some with IQ scores substantially lower than those of the kids in his autism group. Baron-Cohen told them the same story and asked them the same question: “Where will Sally look for the marble?”

The results were nearly the mirror image of those he got from the children with autism. The vast majority of these young children passed the test—86 percent of them, which included the children with lower IQs. Intellectual disability apparently did not interfere with the ability to assume someone else’s view of the world. These children possessed, according to Baron-Cohen’s hypothesis, what the autism children lacked: a working Theory of Mind.

When Baron-Cohen reported his results to Frith, she was as delighted as she was stunned. She, too, had never expected such a clear trend to emerge. Certain that Baron-Cohen had found something important, she encouraged him to gather more data.

The result was a 1985 article in
Cognition
that became one of the
field’s landmark papers. Baron-Cohen was the lead author, with Alan Leslie and Uta Frith taking second and third position. Nodding to the famous Theory of Mind paper about chimpanzees, they titled theirs “Does the Autistic Child Have a Theory of Mind?” In it, they made a bold statement on what they believed their data uncovered. “Our results,” they wrote,
“strongly support the hypothesis that autistic children as a group fail to employ a Theory of Mind.”

The paper’s publication had an immediate and lasting impact, not least on Baron-Cohen’s standing as a researcher. At the age of twenty-five, he was suddenly launched to the front ranks of experimental psychologists. The “Sally-Ann Test” became one of those experiments taught in graduate courses.

Baron-Cohen, Leslie, and Frith had found something vital—something previously unreported and probably pivotal to the nature of autism itself. “We have demonstrated a cognitive deficit,” they declared, “that is largely independent of general intellectual level and has the potential to explain both lack of pretend play and social impairment by virtue of a circumscribed cognitive failure.”

—

T
HE VALIDITY OF
the “Theory of Mind” theory of autism would be
debated for years, as would other big ideas coming out of London. Frith, working with her students Amitta Shah and Francesca Happé, developed yet another model for autism they called
“weak central
coherence.” Their experiments showed that individuals with autism showed superior skills at recognizing or manipulating parts of patterns and systems, but less talent for seeing how the parts worked together as a whole. In other words, they were weaker on big-picture thinking, but they could be masters of detail.

Baron-Cohen, meanwhile, also stirred new ideas into the conversation. He proposed, for example, that autism might be understood as the product of
“an extreme male brain,” marked by a propensity for systemized thinking, but at the price of being able to empathize well with other people. This was meant to explain the much higher ratio of men to women with autism, and why autism showed up more often in populations of engineers than in poets.

In all this, the London researchers kept spilling out data to back up their ideas, letting those ideas evolve, and expand or expire, as new data indicated. The questions asked in London continued to yield wondrous insights on how we all think, not just those of us with autism.

PART VI

REDEFINING A DIAGNOSIS

1970s–1990s

30

THE AUTISM SPECTRUM

I
n the mid-1980s, a writer with much to say about autism struck upon a word she thought perfectly captured the condition: “continuum.” She felt it expressed the way that autistic traits appeared in such a wide variety of intensities and combinations, among people of such divergent intellectual and social capacities. The word “continuum,” she said, described
“a concept of considerable complexity, rather than simply a straight line from severe to mild.”

But after she had been writing about “the autistic continuum” for a while, she decided there was an even better phrase: “the autistic spectrum.” It was a decision that would radically reshape the way people interpreted and responded to autism. The repercussions would be political, social, and scientific. In short, her change of mind changed the story of autism.

The writer was Lorna Wing. A key member of the London circle of researchers, Wing was a psychiatrist with an active practice, a researcher who published groundbreaking studies, an author whose plainspoken books helped families cope with autism, and an activist on behalf of individuals with autism. During the fifty years in which she was active, from the 1960s through 2010, she outshone nearly everyone else in the field. Her unique stature among the leaders of the global conversation about autism—including the Americans—was bolstered by a key distinction between her and other researchers. Schopler and Lovaas; O’Connor and Hermelin; Rutter, Frith, and Baron-Cohen—none of them went home to autism at night.

Lorna Wing, however, did.

—

W
ING LATER RECALLED
that she had her first cold inkling that something was wrong with her six-month-old daughter Susie while the two of them were traveling on a train one day in the late 1950s, sharing a cabin with another young mother she did not know, who had brought along a baby boy about Susie’s age. Typically for the era, Wing did not know a thing about autism, even though both she and her husband, John, who first met in anatomy class when they were assigned to dissect the same corpse, were already practicing psychiatrists.

Wing noticed that the boy was entranced by the sights and sounds of the journey, and that, when he spotted some sheep out the window, he pointed to them excitedly, glancing back at his mother to see her reaction. Her daughter never did this. Susie alternated between being passive and withdrawn, or extremely restless and screaming. She hardly ate. She hardly slept. And she definitely never engaged in the easygoing connection she saw this boy making with his mother. At that moment, Wing felt touched by a chill.

Just after Susie turned three, her father happened to attend a lecture by the British psychiatrist Mildred Creak, who was then involved in one of the earliest efforts to classify the collection of behaviors that added up to autism. John Wing came home with a new hunch about Susie. Shortly after that, she was diagnosed with autism.

Susie’s autism was severe, and her diagnosis came at a time when severe autism led to two clear prescriptions: early institutionalization for the child and psychoanalysis for the mother.

Neither prescription interested Lorna Wing. Instead, she set out to use her training to help Susie stay out of institutional life and to assist other families in their situation. She switched her professional focus, transferring into a research setting in child psychiatry. She joined the Social Psychiatry Unit at the Maudsley, along with John, who
became its director. The Wings immersed themselves in conducting studies that eventually numbered in the hundreds. One of the research projects they oversaw was Victor
Lotter’s landmark study that made the first attempt to measure the prevalence of autism in a population.

But science was only part of it for this autism mother. Wing also
became
the dominant personality in parent advocacy in Britain. She helped
start Britain’s National Society for Autistic Children in 1962 and was on the committee
that chose Sybil Elgar to run the society’s new school. She also acted as the group’s science policy advisor. In this role, Wing became the go-between, connecting parents with the scientific community. She was uniquely situated for this, as the one person in London with a stake in both camps.

But that came with pitfalls too. As it was, there was an inherent challenge in being a woman trying to be taken seriously by colleagues in psychiatry, a field dominated by men. But to be the mother of a child with the very disability she was studying risked inviting skepticism of her ability to do science dispassionately.

This was not a small concern. Over in the United States, the same issue had been faced by Bernard Rimland, one of the few fathers involved in research who was then fighting the dominant mother-blaming mind-set. Rimland continued to make it a practice, when writing or speaking in a scientific setting, never to mention the existence of his son Mark. Even in his groundbreaking 1964 book, he did not specify that Mark was one of the children he described for illustrative purposes. Rimland did not want to give his critics grounds for dismissing his challenge of the status quo as the outpourings of
an overwrought parent.

Wing followed this practice when, in 1970, she published
Autistic Children: A Guide for Parents and Professionals
. No expert had ever written such a book before, one that spoke directly to parents about the challenges of raising their autistic child. Previously, the question was considered moot: institutionalization negated the need for parenting advice. Further, the book that most people were still reading about autism at the time, Bruno Bettelheim’s
The Empty Fortress
, hammered home the incompetence of the parents. But Wing assumed that many would at least try to keep the family together, and that mothers and fathers needed practical insights delivered in simple, straightforward language. Thus, she pointed out the importance of basic matters such as how parents should address their young children. “To begin with,” she counseled,
“the child’s name should always be used in connection with situations which are pleasant for him.”

Wing’s book was received like a shaft of light in the homes of families who read it. It went through several printings and translations into other languages—some of them amateur. In Tel Aviv, for example, autism mother Edna Mishori, who cofounded Israel’s first autism organization, sat up over many nights in 1971, paging through a Hebrew-English dictionary and typing up her own version of Wing’s book, which she copied, stapled together, and handed out to other families in Israel.

Because of the impact
Autistic Children
had throughout the 1970s, it was true to say that, in the eyes of parents of that time, Lorna Wing had “written
the
book” on autism. And then she rewrote it.

—

T
HE TURNING POINT
in Wing’s own thinking on autism—which led to her coining the phrase “autism spectrum”—was grounded in a set of file drawers in the basement room of an administration building inside the Maudsley Hospital complex. The drawers held a set of cards comprising a handwritten database known as
the Camberwell Register. Each card carried the details of a different individual residing within the London borough of Camberwell who had required, at any time, any psychiatric service delivered by the government. All day long, a clerical staff of half a dozen women sat at desks updating this information by hand, relying on fresh field reports, so that it was always current. Reliably, whenever a child from the borough received social services for the first time anywhere in the system, a card was started for him or her right there in the basement. Wing and her husband, John, had initiated the register in the mid-1960s themselves, with the stated purpose of, first, ensuring that the government was adequately providing services to those needing them, and second, providing
a database for psychiatric research.

In 1972, Wing went down to the basement with a new research project planned. She wanted to explore a particular complication frequently encountered by researchers who attempted to count the number of people in any population who had autism. It was the problem of how to account for people who were “near misses.” These were individuals, often relatives of people who had been diagnosed, who also
clearly showed some autistic traits, but not enough to merit a diagnosis themselves. Something about their language perhaps, or their social behavior, was resoundingly reminiscent of parts of the overall condition as it was then understood.

Or there might be individuals whose autistic traits were so mild in some areas that it was uncertain whether they completed the picture of the condition. This phenomenon was observed by Victor Lotter in the 1960s, in his count of children with autism in Middlesex, and by Susan Folstein in the 1970s, when she went looking for sets of British twins who both had autism. Folstein ended up having to exclude a number of twin sets from her final count, where one child in the pair, though obviously neurologically affected,
did not meet the full set of autism criteria
she was using for her study.

Wing was a mother who appreciated both the value of support services and the critical importance of having a diagnosis that justified the provision of those services. This may have been her reason for wanting to find a way to count them all: all the people who reflect any trace of autistic behavior, in any degree and in any combination. The Camberwell Register would be her launching pad.