In a Different Key: The Story of Autism (50 page)

Having expressed his empathy for Herta’s mother, Asperger rendered his recommendation: “Permanent placement at the Spiegelgrund seems absolutely necessary.” The letter was signed “Hans Asperger.”

Everyone in the audience grasped the meaning of Asperger’s letter. It was a death warrant. Indeed, Czech confirmed that Herta was admitted to the Spiegelgrund on July 1, 1941, and killed there on September 2, 1941, one day after her third birthday. Records state that she died of pneumonia. Notes from the hospital archives quoted her mother as agreeing, through tears, that her daughter would be better off this way, rather than living in a world where she would face constant ridicule and cruelty. It was Czech’s assessment that Herta’s parents supported the Nazi agenda.

The effect in the room was powerful. As they listened, members of the audience stole glances at the picture of Asperger and the boy on the cover of the program. Suddenly, the celebratory nature of their gathering seemed wildly off key, as Czech went on delivering, in a quiet, affectless voice, more disturbing news from the Nazi past.

In February 1942, he reported, Asperger was the senior pediatrician representing the city of Vienna on a commission asked to review the health status of 210 Austrian children residing in a mental hospital in lower Austria. Several months earlier, the government had begun taking steps to apply mandatory education laws even to children in these hospitals, as long as they were “educable.” A panel of seven experts was charged with compiling a list of the names of those children who should, despite their mental challenges, start attending classes in either traditional academic or special-education settings. In a single day, Asperger and his colleagues went through the records of all 210 children. While 17 were found to be too young for compulsory education, and 36 too old, the panel designated 122 of them as ready for schooling.

That left 26 boys and 9 girls. Their fate, Czech reported, was known, and he believed Asperger knew it as well. A written summary detailing the commission’s composition, purpose, and procedures clearly stated that those children judged to be not “educable” were to be “dispatched for Jekelius Action” as quickly as possible. When that was written, Erwin Jekelius, a former assistant to Asperger’s mentor Franz Hamburger, was the fiancé of Hitler’s younger sister, as well as director of the Spiegelgrund. “Jekelius Action” was a euphemism the commission’s members would have understood quite well. Asperger once said he took a “great risk” by refusing to report children to the authorities. This, clearly, was not one of those times.

Czech also shared findings suggesting a greater affinity between Asperger and the Nazis than Asperger had admitted to. According to the file the Nazi Party kept on him, he was repeatedly judged to be an Austrian whom the Nazi authorities could trust, even more so as the years went by. Each time Asperger applied for a post or a promotion, he was cleared as someone who, though not a party member, abided by Nazi principles in the performance of his job. In one instance, a party official wrote that he
“conforms to the principles of the policy of racial hygiene.”

In the years following his talk, Czech would discover other evidence of how far Asperger went to conform. He found letters in Asperger’s handwriting that used
“Heil Hitler”
as their closing salutation. This was not mandatory. He also unearthed a job application filled out in Asperger’s hand in which Asperger described himself as a candidate for the Nazi Doctors Association, a group that functioned as a medical policy arm of the party and was instrumental in closing the medical practices of Jewish physicians. He also learned that Asperger had applied to be a medical consultant to the Vienna branch of the Hitler Youth, though there is no record of him having been accepted. All in all, in Czech’s view, Asperger took care during the war to safeguard his career and to burnish
“his Nazi credibility.” Asperger, it would appear, did what was necessary.

—

C
ZECH SPOKE FOR
only twenty minutes or so that day at the Vienna city hall. Then he stopped to take audience questions. In that pause, Dr. Arnold Pollak,
the director of the clinic where Asperger had worked for much of his career, leapt to his feet, clearly agitated. Turning to the room, he asked that everyone present stand and observe a moment of silence in tribute to the many children whose long-forgotten murders Herwig Czech had returned to memory. The entire audience rose and joined in wordless tribute.

PART VII

DREAMS AND BOUNDARIES

1980s–1990s

33

THE DREAM OF LANGUAGE

“C
ommunication at sentence level.” Those were the words that leapt out at Doug Biklen when the letter from Australia arrived in 1987. By then, Biklen, based at Syracuse University, was well-known in academic and activist circles as a forward thinker on
the civil rights of people with disabilities. The letter writer, an Australian lawyer named Chris Borthwick, had written him to share news of a stunning breakthrough achieved by the woman he lived with. Her name was Rosemary Crossley. Biklen had met the couple a few years earlier, when the Australian government invited him to give a series of lectures on his work in the United States. Since that time, Borthwick said in his letter, Crossley had achieved something previously considered impossible: two-way, “sentence level,” English-language communication in children with autism who had never before spoken. These were children whose demeanor and verbal production—grunts, squeals, screaming, or just plain silence—suggested not only a limited capacity for language but also serious cognitive deficits.

But Crossley had tested those limits by teaching the kids to type messages on a small computerized device. Borthwick said that Crossley was eliciting sentences after as few as three sessions.

“Every single one,” Borthwick emphasized. “All. The lot. One hundred percent.”

Biklen was fascinated and inspired. For twenty years, since the late 1960s, he had been at the forefront of efforts to bring recognition to people with disabilities as full members of society—and to end the prejudices that saw disability as the equivalent of deficiency. As a graduate student at Syracuse University, he began joining the legendary
Burton Blatt, his mentor, in going into the back wards of New York State’s large institutions to expose the appalling warehouse conditions under which intellectually disabled people were being held. In the late 1980s, he was well-established in his own right. He was on the faculty at Syracuse as the director of its Center on Human Policy, which supported research and advocacy on disability rights, and he was the author of several well-regarded books. He was also the winner of multiple rights-related awards from organizations such as the American Civil Liberties Union.

Biklen was well-known to the local public school districts around Syracuse because of his campaign, begun in the 1970s and joined by others, to open all classrooms to all children regardless of disability. Borrowing from the argument made in the landmark 1954 Supreme Court case,
Brown v. Board of Education
, which established the unconstitutionality of separate public schools for white and African American students, Biklen opposed the de facto segregation-by-disability practiced by most public schools in America—where “special education” meant usually separate classrooms and a separate curriculum. “Inclusion”—the idea that everyone should have access to the same spaces, services, and opportunities—became Biklen’s watchword.

The inherent merit of his argument had been established by a number of legal victories won by Syracuse-area parents, who, with his encouragement and counsel, had successfully advocated for and even sued their schools to gain access to regular classrooms for children with disabilities. Their pressure also won for their kids a variety of supports to enhance their ability to participate academically and socially, which might include a sign language interpreter for a deaf child, or a second teacher to help a child with autism stay focused.

Not every expert agreed that inclusion was always to the individual child’s benefit, and in the years to come, the efficacy of inclusion would be much debated. But Biklen was an absolutist. He argued that it was an educator’s ethical responsibility to take each student’s educability as a given, and he exhorted schools and teachers to approach each child with a “presumption of competence.”

But a special challenge arose with bringing nonverbal children with autism into a regular classroom. Such children could only go so far,
since academic progress depended so much on conversational literacy—on the vital give-and-take with teachers, and with students. Many of the kids could not demonstrate that. As Biklen recognized, it was a difference that did not seem to have a work-around.

That was why, as soon as he got the letter about “communication at sentence level,” Biklen knew he had to see for himself where these words were coming from.

—

R
OSEMARY
C
ROSSLEY WAS
a celebrity in Australia. By 1984, the story of her triumph in establishing two-way communication with a teenage girl who could not talk had been made into a movie, based on a bestselling book written by Crossley herself, with the young woman as coauthor. Annie McDonald, born in 1961, had been diagnosed with cerebral palsy and was assumed to have severe brain damage. She could not walk or feed herself. In the film, as in real life, Crossley was an assistant in the institution where Annie resided full-time in the late 1970s, when she began to suspect that the girl’s intellect was, in fact, whole and vibrant. Over time, Crossley worked hard to make a connection with Annie, seeking some way to communicate using words. Ultimately, she declared that she had achieved success using a method of her own invention. She further asserted that it had vindicated her hunch that Annie was not at all mentally diminished and actually had a great deal to say. It was the cerebral palsy that kept her from speaking, by interfering with the mechanical production of speech, Crossley concluded. Then Crossley came up with a method that bypassed spoken language.

She called it “facilitated communication.” It was also commonly known as FC. When Biklen flew to Australia in 1988 for a week’s visit, Crossley demonstrated the method herself.

At the first session, Biklen was introduced to a twenty-four-year-old man named Louis. Louis had some speech, but it appeared to be purely echolalic, meaning that he simply repeated other people’s words, without any discernible meaning. That day, Louis started out by saying,
“Excuse me. Get Mommy on the bus. Excuse me,” over and over, no matter what anyone else said to him. But as Biklen watched, Crossley
sat down next to Louis, took hold of his right forearm, and, addressing him directly, apologized for the elementary nature of what they were about to do. Then she turned to the small electronic screen lying flat on the table in front of them and asked Louis to touch, with his finger, several small pictures displayed on the screen as a computerized voice called out the name of the object shown. With Crossley lightly supporting his arm, Louis reached out and, tentatively, hit the right target each time:
car, circle, triangle
. After a few minutes, the pictures on the screen were replaced with the words
hand, eye
, and
fish
. Crossley moved her hand up toward Louis’s wrist and took hold of the top of his sleeve—again, only lightly—as she asked him to point to specific words. Again, he made all correct choices. After that, he moved on to choosing single words from full sentences and letters from a display of the full alphabet. Crossley congratulated him warmly each time he hit a mark correctly.

A half hour had already passed when Crossley produced a Canon Communicator—a small keyboard device that spooled out a thin paper tape displaying whatever was typed into it—not unlike a label maker. Crossley asked Louis to tell her his name, which he did using the keyboard. At this point, she was touching his arm only intermittently. Then she asked him if he had anything he wanted to say. His finger moved and the paper tape advanced again with each letter he pressed. It read: IM NOT RETARDED. Crossley commented, “No, I don’t think you are.” Louis continued pressing keys; this time the tape read: MY MOTHER THINKS IM STUPID BECAUSE I CANT USE MY VOICE PROPERLY.

Biklen was astounded. During a follow-up visit to Australia, which lasted nearly four weeks, he met with twenty-one people identified as having autism, most of whom had little to no spoken language. Via FC, he “spoke” with them. Some, new to FC, had only a limited vocabulary, producing keyboard communication that was rife with misspellings and grammatical errors. Others, who had been communicating for three or four years, seemed to have mastered the art of conversation. In each instance, a facilitator performed the role Crossley had played with Louis, offering encouragement and maintaining light physical contact with the person pressing the keys. The facilitator
might support a forearm, or an elbow, or keep a hand on a shoulder. This contact was meant not to steer the letter selection, but to provide gentle resistance that slowed the process, smoothing out impulsive or involuntary movements. For example, if a person were to get locked into hitting the same key repeatedly, the facilitator would pull his hand back from the keyboard. In some cases, there was no physical contact at all, which Biklen called “independent” typing—though the facilitator always remained inches away.

Biklen found himself engaging with people who were liable to be viewed by others as profoundly uncommunicative and almost certainly intellectually disabled. But with FC, he found himself convinced that the opposite was the case. For example, he met Bette, a young woman who could not go to the toilet by herself, but was verbally sophisticated enough to ask Biklen, via keyboard, “if people like me will ever be normal…able to do more things that other people do.” One boy explained that he had mastered reading “by being around words and by watching television.” Biklen took part in facilitated conversations that wandered into jokes and wordplay and that even probed philosophical matters, such as “the social construction of reality” and the nature of disability itself.
“What really does integration have to offer to some terribly retarded people?” a young woman named Polly asked him via FC. This was all the more extraordinary since many of these children and young people had been denied all education and perhaps had never even been read to. Yet they were composing full sentences, with recognizable grammar and better than passable spelling.