In a Different Key

by John Donvan

  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 Susie alternated between being passive and withdrawn, or extremely restless and screaming.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.

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  THE 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.

  This was far too big a project to do alone, so Wing advertised for a psychologist to work with her—someone experienced with children and in doing cognitive assessments. Judith Gould, a young psychologist then training at the Maudsley, fit the bill. Gould had been doing both of those things in an education-focused research project. After an interview with John and Lorna Wing, she was hired. On that day in 1972, the new team of Wing and Gould headed to the basement, where the records were kept.

  Lifting data from the cards was not enough; Wing insisted on a stringent process of verification. She and Gould embarked on a marathon field investigation, spending nights and weekends knocking on doors in Camberwell, to see for themselves what the cards said about the individuals they described. Limiting their investigation to children who were fifteen years of age and under, they set out to see all the cases of diagnosed autism in that group. But that was just the beginning. Beyond that, they wanted to see every child who was reported as displaying any traces of developmental disability more broadly defined. That mea
nt intellectual impairment, speech delay, or any kind of learning disability. Scattered autistic traits, such as repetitive interests, or social aloofness, also counted.

  Wing and Gould conducted one-on-one interviews with more than 900 teachers of kids whose histories had been recorded on those cards in the basement. After that, they themselves spent time with more than 132 of the children and their families. Data collected by the end of any given evening would be fed back into the system the next day, then reported to the basement secretaries, who transcribed the data onto the file cards. One day, near the halfway point of the project, workmen showed up at the basement door with a desk-sized keypunch machine. Computerization had arrived at the Maudsley. It thus became the task of the clerical staff to transfer the data from those thousands of records onto punch cards. Eventually, boxes of the cards were driven to University College for processing on the mainframe there.

  So labor intensive was the sheer legwork aspect of the project that it was four years before Wing and Gould were ready to start publishing. But beginning in the late 1970s, they produced a string of papers that became the foundation for Wing’s own radical rethinking of the concept of autism. It was where she broke with prevailing concepts and began to change how everyone else interpreted the condition.

  Wing had decided that something crucial had been missed in all the prior years of autism analysis, when the circles drawn by the condition had been too tightly inscribed. It was time to move beyond seeing autistic traits as meaningful only when they were locked together into a supposedly tight syndrome, as Kanner had done. That left out too many people who needed help, or, as she would later write, it had “the effect of excluding those who do not fit neatly into the categories.” Without question, her perception was influenced by her firsthand experience of raising a child with autism, which made her ever mindful of the consequences for families of a labeling system that overlooked their need for help. By that measure, she wrote, drawing narrow definitions had “not proved helpful in prescribing types of education, behavior management, medication, or other treatment.”

  But just because she thought narrow definitions had failed, it did not mean Wing thought autism had no meaningful shape at all. She and Gould proposed a framework they called the “triad of impairment” to encompass the defining core of the condition. This included, first, an impairment in the usual set of social give-and-take skills. The second impairment was related to reciprocal language, including nonverbal language. The third was a failure to engage in what Wing called “social imagination,” like that used in pretend play.

  Key to the triad framework, however, was its flexibility and variability. Within it, Wing argued, autism’s traits could appear in a huge number of combinations and infinite shades of intensity, “right up to the borderline of normality.” This, she boldly asserted, was the big picture that even the great Kanner had missed. Though she first used the word “continuum” to capture this concept, including a chapter in her book called “The Continuum of Autistic Traits,” by 1988 she was often using the term “spectrum” to make the same point.

  By the 1990s, Wing had left “continuum” behind entirely, deciding that it was too suggestive of a sliding scale of severity. Wing wanted researchers and clinicians to break free of reliance on a simple measuring stick for autism. She hoped to encourage them to be more nimble, more discerning in how they recognized and interpreted differences that were unlikely to always appear in the same, neat, narrowly drawn boxes that diagnosticians naturally favored. As Wing would often say, repeating an adage she made her own: “Nature never draws a line without smudging it.”

  —

  IF IT HAD been anyone other than Lorna Wing promoting it, the notion of an “autism spectrum” may well have remained an obscure reference in a few journal articles here and there. But Wing had both influence among her colleagues and a following among parents that no other professional could match. And she was relentless. She wanted the spectrum idea to take hold, so she did everything she could in the 1980s and 1990s to ensure that happened. She kept writing about it, and she talked it up at conferences. And when she revised her classic parent handbook, Autistic Children, which every autism family owned, she gave it a new name: The Autistic Spectrum. Among the broad community of people connected to autism, that book title, more than anything, made the term colloquial.

  Wing also brought the spectrum idea with her when, in 1984, the editors of the Diagnostic and Statistical Manual of Mental Disorders (DSM)—published by the American Psychiatric Association—decided it was time to update the book. That year, because of Wing’s stature in the field, she was brought in to write the first draft of the revised criteria for autism, which gave her a leading voice in the three years of debate and negotiation that followed.

  When the new edition appeared in 1987, her imprint was obvious. In place of the menu of five different diagnoses the previous edition had offered to people with autistic traits—which took account of differences such as age and persistence of symptoms—this update grouped everyone together into just two categories.

  One was called “autistic disorder,” which applied to people whose traits were closest to what Leo Kanner would have called autism.

  The other, however, was clearly spectrum-“inspired.” It was a broad catchall label to serve as a diagnosis for all the “near misses”—people with impairing autistic traits that did not add up to “classic” autism. Though the label coined for it was classically clunky DSM-speak—“Pervasive Development Disorder Not Otherwise Specified”—PDD-NOS became an important and much-used label. One reason for this, reported anecdotally, was that pediatricians sometimes grabbed for it knowing that mothers and fathers dreaded hearing the word “autism.” Parents who were wise to this practice, however, and who wanted it “given to them straight,” complained that PDD should stand for “Pediatrician Didn’t Decide.”

  But the category also caught on because it worked. As Wing had argued, not everyone who needed help fit neatly in simple boxes drawn with clean, unsmudged lines. There was a place for the diagnosis in the lives of real people, and a place for them in the diagnosis.

  That was also why, once Wing pointed out the rationale for it, the concept of an autism spectrum slowly gained momentum. It captured the variability of life lived by individuals whose distinctive traits were also demonstrably and dramatically variable, yet who also shared some sort of hard-to-define touchstone of difference.

  Leo Kanner, Wing thought, had spotted just a slice of the spectrum. In Wing’s view, Kanner’s work was historic; it brought autism to the world’s attention. But she was beginning to argue that he had only found part of it, and that there was so much more to the spectrum.

  It was why, at the same time she introduced the world to the concept of the autism spectrum, she also introduced another diagnostic concept that almost no one had heard of before.

  It was called Asperger’s syndrome.

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  THE AUSTRIAN

  They only met once, when Hans Asperger, an Austrian pediatrician unknown in the English-speaking world, was on a short visit to London. Lorna Wing had come across one of his decades-old papers and, having found it interesting, invited Asperger to drop in for a cup of tea in the canteen of the Maudsley Hospital. By Wing’s later account, they communicated in English, which would have been a struggle for her elderly guest. The Austrian’s manner toward her was cordial. A year or two later, in 1980, Asperger died, his name still largely unrecognized outside of Austria.

  But that fact would change dramatically within a decade—and solely because of Lorna Wing. During the same years in which she was developing and promoting the concept of the autism spectrum, she also introduced the world to the work of Asperger. She was particularly intrigued by a paper he had published in German at the height of the Second World War that she felt was very relevant to the spectrum idea.

  Later, Wing recognized that introducing Asperger to the world had produced a slew of consequences she never
intended, which left her feeling, she said, that in lifting the lid on his legacy, she had opened a Pandora’s box. But by then, she couldn’t close it again.

  Asperger’s syndrome became famous, far better known than the man himself.

  —

  SLENDER, BESPECTACLED, and boyish-looking—even as an adult—Hans Asperger grew up on a farm outside Vienna. He was a loner in his boyhood, often taking long treks in the woods, entertaining himself by reciting long passages from poems he had memorized. As a teenager, he found some company in an outdoors and nature-oriented organization called the “Wandering Scholars.” It was part of a broad youth movement called Bund Neuland, which was Roman Catholic in membership. Joining this group marked a turning point for Asperger. He later credited much of his intellectual development to its influence.

  He studied medicine and became a pediatrician, working out of Vienna’s University Hospital, where in 1932 he was promoted to head up a program using education as a treatment for mental and personality disorders. It was sort of a school inside a hospital. The work he did there, described in publications he produced between the years 1938 and 1944, was the basis of Lorna Wing’s later interest.

  Asperger’s relative anonymity outside of Austria was only partly due to the fact that he wrote and published in German. The other factor was his association, by dint of his birth country, with Hitler’s Third Reich. The Reich’s medical science was seen as corrupted, morally and factually, by ideology. While the victorious Allies were happy to acquire Germany’s rocket scientists, much of the biomedical and psychological research conducted in Germany or Austria during the Nazi era was viewed with suspicion by the rest of the world. The bad associations lingered long after the war ended.

  There is no record of Asperger himself joining the Nazi Party. While he served in the German army, it was because, like many physicians, he was drafted. Having already lost a brother on the Russian front, and as a married father of five, he was not enthusiastic about having to go. His service, in any case, lasted only a matter of months. He worked in a military field hospital, in Nazi-occupied Croatia, and came home disturbed by the carnage he had seen there.