In a Different Key: The Story of Autism (43 page)

Aurnhammer found the place to be an intellectual banquet. Its spirit of iconoclasm suited her perfectly, as did the view shared by everyone at the institute that they were engaged in work that mattered, that they were probing previously uncrossed frontiers. Aurnhammer loved being taken along for the ride, and when she wasn’t doing coursework or staying up late with a dictionary plowing through the especially arcane English of psychology research reports, she could be found in the Maudsley’s canteen, kicking around ideas with fellow grad students and faculty. She even met her future husband, British-born psychologist Chris Frith, during her first few months at the Maudsley. As he
spoke no German, their friendship became a full-time immersion in English, to her benefit. A year after their first meeting, she became Uta Frith.

It was her participation in a “journal club” that led Frith to find her mentors. Weekly, she and a group of other young psychology apprentices got together and reported on particularly interesting research papers they had each picked off an assigned list. The week Frith’s turn came around, she arrived excited to discuss a paper she had chosen at random, one that had been published the year before. It covered some experiments into the perceptual differences of children labeled “psychotic”—the term that eventually would
be replaced by “autistic.”

Frith had been around a few such “psychotic” children at the Maudsley, and she had personally observed what the paper was talking about. Often the kids would look straight through the person sitting right in front of them—or they seemed to be deaf to someone slamming a book onto a desktop just behind them. They never turned around or even flinched, yet their hearing was perfectly intact. This selective imperviousness to interruption was one of those associated traits of autism—like the indifference some kids showed to extreme hot or cold—that disturbed parents but tantalized inquisitive psychologists.

On the ward, Frith had heard some psychiatrists attributing these behaviors to a malfunctioning parental relationship. She found this explanation unconvincing but knew of no data supporting alternative theories. In the paper Frith chose to discuss, though, the authors had constructed an experiment that identified cognitive patterns unique to children with autism, in relation to how they registered the shape, size, brightness, and orientation of line drawing. To be sure, it was a narrow, almost esoteric, discovery. But it was solid, experiment-based, and indisputably indicative of a neurological component to autism.

Frith brought the paper to her journal club not knowing that its authors worked out of the same Maudsley campus where she was doing her clinical training. As soon as she realized this, she had someone point them out to her—O’Connor and Hermelin. One day at lunch, Frith approached them in the hospital canteen. Speaking German gave Frith a quick “in” with Hermelin and made it easy for her to have a fluent, deep conversation about experimental psychology. The two
professors were immediately impressed by Frith’s boldness and curiosity as she framed some penetrating questions about their study. By the end of that meeting, Frith had found her mentors. Soon afterward, Hermelin and O’Connor invited her to pursue a PhD in experimental psychology under their guidance.

That was how, in 1966, Frith came to make her own journey out to the school on Florence Road, to carry out an experiment whose results would rank among the most intriguing and influential of its era.

The night before, Frith had stayed up late readying her materials, preparing a large set of hand-drawn cards. Though the experiment had been designed primarily by her new thesis advisors, Frith was to take the lead on its execution. It was set up like a memory game. Frith would read through a list of eight words. After each list, she would ask the children to repeat the words they had heard in the same order she had used.

But there was a twist. In some lists, the words were presented in a wholly random order. For example: “day she farm when cat fall back rake.” But in some lists, the words actually made a little bit of sense as parts of sentences, such as: “ride home by car write to us now.” As always, there was to be a control group—children without autism matched for “mental age.” Each child in each group would go through eight lists in eight “trials.”

The results were unambiguous. With the random word lists, the kids with autism were on par with the other kids at repeating back most of the eight words, and were actually better at retaining the last few words from each list in their memories.

With the non-random lists, however, the kids without autism had a tremendous advantage. They were obviously recognizing those partial sentences inside the word strings, then using that recognition as an aid to remember all the words in those lists.

But for the kids in the autism group, it was as if “write to us now” was just as random as “cat fall back rake.” Failing to spot the organizing presence of language, their brains got no memory help from words that actually did make sense together. They just didn’t hear it.

But then Frith pulled out the cards she had worked on the night before. These contained pictures—little line drawings of ordinary objects
like a house, a duck, a pair of scissors, or an umbrella. She placed these cards face-up in sets of four in front of a child in a certain order. She paused, scrambled the cards, and then asked each child to restore them to their original order.

This time too there were clues built in to assist memory. Certain cards fit together in the logical sequence of an unfolding process. For example, when Frith laid down a picture of a burning candle, next to it she placed a picture of a similar candle nearly melted down to a stub. Or, next to a drawing of an egg in an eggcup, she placed a drawing of a similar egg in a similar cup, only the egg was cracked open and half-eaten.

In this purely visual memory test, the kids without autism again did well when such visual clues to meaning were provided. But so did the kids with autism. Indeed, their scores were virtually identical to those of the control group.

This intriguing experimental outcome became a classic of the autism world and pointed to a powerful hypothesis: that while children with autism may miss some of the intricacies of language and the meaning contained therein, they were strikingly capable of deriving meaning from information provided through nonlinguistic means. Moreover, these results suggested again that autistic children were better attuned to visual rather than auditory learning. These insights were repeatedly confirmed by other experiments and integral to ways in which
teaching methods were shaped in the years to come.

Generously, when O’Connor and Hermelin published this research, they named Frith as a collaborator in a front-page footnote: “This work was carried out by Uta Frith in
collaboration with the authors.” Such a prominent acknowledgment of a graduate student was not common in that era; perhaps this spoke to her mentors’ conviction that Frith, their protégée, was going to go far in her field.

They were right about that. Uta Frith would go on to become one of the
biggest names in the field of autism research. In addition to composing her own probing questions about the nature of the condition and designing experiments to answer them, she became the field’s leading “explainer” of autism to the general public. She hosted numerous television programs and was quoted often in the press.
Her
book,
Autism, Explaining the Enigma
, was the first one by a hands-on researcher to explain the condition as a matter of scientific interest to a general audience. In its pages, Frith wrote about the experiments performed on Florence Road with the same sense of wonder that had first attracted her and her mentors to autism, the same wonder she then passed down to some of her own brilliant students. She described, in plain English, the nuances of their experiments and framed their findings in a way that suggested that the study of the “autistic” brain was actually the study of all brains. The book would be translated into ten languages and go through several reprints.

Popular curiosity about autism was starting to catch on. The questions asked in London, which picked up pace in the 1970s, were stoking the fire at just the right time. The researchers weren’t finding all the answers; instead, the questions kept leading to more and better questions.

28

THE GREAT TWIN CHASE

I
n the early 1970s, a general practitioner named M. P. Carter, who lived and worked mostly in the east of England, passed away. Later, when his wife went through the doctor’s personal effects, she found in his desk a list of names of twins with autism. Carter had been putting this list together since 1967, when he placed notices in several medical journals, asking
“any doctor knowing of such a twin pair [to] please contact” him. Carter was active in Britain’s National Society for Autistic Children as its East Anglia organizer, and had been in touch with Bernard Rimland in the United States. The two men had been discussing some sort of joint study on autistic twins, but Carter had died before getting around to it.

Carter’s wife, recognizing that the short list of names was probably important, sought to get it into the hands of someone who could make use of it. That was how
the names came to be given to a London professor of psychiatry named Michael Rutter.

Rutter, then in his early forties, was already the superstar of British child psychiatry and the first person in Britain named to a professorship in that discipline. Destined to be knighted by the queen later in his career, Rutter was recognized for his exacting intellect and for the rare and blunt clarity of his academic writing. Autism was but one of his interests, in which, as a thinker and researcher, he played a leading role throughout five decades, beginning in the 1960s.

In 1973, when Rutter first saw Carter’s list of twins, he saw the possibilities in it immediately. Other researchers had written about twins and autism, but only minimally, with only a few cases mentioned here or there and always with sparse data. But with a sufficient number of
cases, Rutter thought he might be able to answer two intriguing questions at the same time: How frequently was autism shared between twins? And was the rate the same for identical and fraternal twins? Numbers like that had the potential to say a great deal about the role of genetics in autism. If analysis showed that autism was shared between identical twins at a higher rate than expected, that could answer the question of whether genes helped determine who had autism and who did not.

—

T
HE QUESTION HAD
been taboo for several decades, a result of the lingering scientific scandal of genetic arguments used by the Nazis to justify the murder of people with mental disabilities. For many years after World War II, seeking a link between a person’s DNA signature and signs of mental illness or intellectual disability was not an endeavor that appealed to many researchers. Particularly in American psychiatry, nothing was more politically incorrect than the suggestion that there was any genetic dimension to the mind’s functioning. Feeding the taboo was the presence in America of many European-born psychiatrists who had escaped the Holocaust or who had family who had died in it. On this point, passion trumped the spirit of inquiry. When Danish psychiatrist Eric Stromgren visited the United States in 1948, he found it depressing that even
“the possibility of genetic contributions” was something he was not permitted to broach with colleagues there. “Genetics had become a dirty word,” he recounted.

Besides, the mother-blaming theory, which still dominated, obviated all need for exploring the condition’s genetic or biomedical side. Taken together with the distaste for gene research, very little true scientific study of the biomedical aspect of autism was undertaken for years. But once he had the list of twins in his hands, Michael Rutter was ready to take on the taboo.

—

W
HEN HE STARTED
putting together the outlines of a study, Rutter settled on a target population: all sets of British twins—identical and fraternal—where at least one of the siblings appeared to be affected by
autistic traits. That had been the organizing principle of Dr. Carter’s list, whose dozen or so names gave Rutter a good starting point. Now, as Carter had once done, Rutter reached out across the medical profession to contact pediatric centers, social service agencies, and mental hospitals with the aim of tracking down any pairs of twins Carter might have missed. Rutter received remarkable cooperation—a testament to his reputation, probably. Large envelopes of documents began arriving by mail, packed with the children’s full, original records.

These records all claimed autism diagnoses for at least one of the twins in each set, but Rutter wanted certainty that the diagnosis was valid. For him, that meant getting independent confirmation in each and every case. Every family on his growing list would have to be visited in person so that the children could be evaluated face-to-face. But the dozens of names on his list came from children scattered over hundreds of miles in the United Kingdom. He could not get to all these children himself; his duties at the Institute of Psychiatry demanded all of his time as it was. So he brought in an outsider.

Susan Folstein, who grew up in Missouri, was one of the five women admitted to Cornell Medical School in the class of 1970, when that was the ceiling for female enrollment. When she told a professor she hoped to become a professor herself someday, he counseled her to go
“become an expert in something.” By chance, this same man had studied at the Maudsley and knew Michael Rutter. He put the two of them in touch.

Thus, in the summer of 1974, Folstein found herself in the far north of England, sloshing through a soggy field toward a small encampment of mobile homes, where she spotted a mother bending down to help a naked toddler urinate in the mud. The woman’s hair was waist-length and loose, the same orange-red as the child’s. There was no phone service out there, or electricity or running water. Still, the woman appeared not at all surprised to have an American suddenly showing up at her trailer. Some weeks earlier, a letter had arrived, and the woman, who could not read, had walked it into town to have the doctor who looked after her kids read it to her. It was from Folstein, explaining her research interest in the woman’s twin boys.