In a Different Key: The Story of Autism (46 page)

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
meant 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.”

—

I
F 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.

31

THE AUSTRIAN

T
hey 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.

—

S
LENDER, 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.

That said, the medical culture he inhabited in Vienna was permeated by Nazi ideas. Vienna was especially dangerous to children with disabilities. In 1939, the year after Austria was assimilated into the Third Reich, the state commenced a campaign of murdering disabled infants, toddlers, young children, and adolescents. Their definition of
“disabled” included both mental and physical infirmities. The campaign was framed as a program of mercy killing, but it was driven by the Nazis’ obsession with building a strong nation by culling its weakest citizens.

They applied an emotionless but economic and self-serving logic to this purpose. They did not insist that the presence of a disability was, by itself, the litmus test for a life-and-death decision. Rather, each disabled child’s right to life was subjected to a kind of cost-benefit analysis. Medical professionals were called upon to judge which children’s futures were salvageable with treatment and education, and which were not. Children found to be “educable” were those seen as having a solid chance of benefiting from remedial support. If they could become productive citizens, the state could justify an investment in them. They were channeled into special schools and given what assistance the state could afford. The “ineducable,” described in Nazi literature as “worthless,” were not given that chance. They were put to death.

In Vienna, this process—the judging as well as the killing—was carried out by doctors and nurses at a facility known as the Spiegelgrund, which resembled a children’s hospital. Each child’s murder was accomplished over the course of days and weeks, as he or she was daily dosed with the antiseizure medicine phenobarbital. It was often administered in the form of suppositories or mixed into infant formula or cocoa. Over time, the drug caused a gradual breakdown of lung function. When the end came, the cause of death was usually listed as pneumonia. The staff removed and preserved the children’s brains for future research, then the families were invited to collect their children’s remains.

No physician working in Vienna could avoid contact with the Nazified medical bureaucracy. Hans Asperger would have brushed up against it every day. His mentor at the University Hospital, Professor Franz Hamburger, was an enthusiastic party member. In addition, Asperger served in various advisory roles to the city, whose top administrators were loyal Hitlerites. For any Austrian with career ambitions, professional advancement required remaining in the Nazis’ good graces. Getting along meant being seen as fitting in.