washingtonpost.com

Oscar Nominee: Documentary or Fiction?
Film Resurrects Discredited Autism Tactic

By Lisa Barrett Mann
Special to The
Washington Post
Tuesday, February 22, 2005; Page HE01

In the '90s, it took less than five years for a communication method promoted as a miracle breakthrough for people with severe autism to be discredited as a sham. Next Sunday, when millions tune in for the annual Oscar film fest, it could take only a few minutes of accolades for the method to undergo something of a public rehabilitation. Or so proponents hope -- and other experts fear.

The method, called facilitated communication, or FC, entails having an autistic person type messages with the assistance of a helper, who usually holds the person's hand or wrist. FC plays a starring role in a documentary that is up for an Academy Award. The 40-minute film, "Autism Is a World," concerns a severely autistic woman who, viewers are asked to believe, emerged from her shell via FC to reveal a brilliant mind trapped inside an uncooperative body. The woman, Sue Rubin, whose little spoken language is barely intelligible, is credited as the screenwriter.

The film, insists its Washington-based producer/director, Gerardine Wurzburg, isn't about facilitated communication, but about our stereotypes of disabled people. The same position is taken by co-producer Doug Biklen, who heads the Facilitated Communication Institute at Syracuse University, is credited with introducing the method in the United States and remains its biggest champion.

Longtime autism researcher Gina Green isn't buying their take on the film. "It is [about FC] because they're making these claims about what FC 'reveals,' " said Green, a lecturer at San Diego State University, who describes herself as outraged. To make a film touting the method without "even a hint, much less a disclosure" of all the information disproving it "is appalling," she said.

If the movie wins an Oscar, "hang on to your seats!" said Rockville autism consultant Joanne Cafiero, who attended a viewing of the film last fall. Cafiero, who sat on a National Academy of Sciences panel investigating autism interventions from 1999 to 2001, enthusiastically predicts that parents of children most disabled by their autism will start demanding access to FC and other literacy training -- "and these kids are entitled to a rigorous curriculum."

Child psychiatrist Fred Volkmar, director of autism research at Yale and primary author of the autism chapter in the Diagnostic and Statistical Manual of Mental Disorders, fourth edition (DSM-IV), hasn't seen the film yet. But "in the field [of autism research and treatment], people are very worried" about it, he said, because of FC's frightening history -- one that is never mentioned in the documentary.

The World of Sue Rubin

Rubin, the 26-year-old woman who is the movie's subject, was thought to be mentally retarded, with a mental age of 2 -- until she reached age 13, the film tells us. Then, reportedly, her educational psychologist proposed that she try FC. Rubin's mother served as the helper, supporting her hand so Rubin could pick out letters on a keyboard.

"As I began to type, my mind began to wake up," narrator Julianna Margulies reads from Rubin's script. Rubin, Margulies reads, was soon reevaluated and found to have an IQ of 133. In the film she appears to type independently, at a rate of about one keystroke per second. But someone else always holds the keyboard.

Rubin's story may be new to most viewers, but she's become something of a phenomenon in the autism world, headlining at disability advocacy meetings where she presents prepared speeches that are read aloud by an assistant or delivered via a voice synthesis program on her keyboard. The film shows Rubin giving such a presentation, as well as celebrating the Jewish Sabbath with her family, interacting with her aides and betting on horse races. We also see her in a favorite activity -- playing with water in the sink, repeatedly filling and emptying spoons.

Odd interests and repetitive behaviors are hallmarks of autism, a developmental disorder marked by difficulty communicating with others and forming social relationships. While some people with autism, like Rubin, have few verbal skills, others can enunciate very clearly, but with odd content -- such as answering any question with dialogue from a Disney movie, explains neurologist Margaret Bauman of Harvard Medical School, who appears with Rubin in the movie. Intellect is difficult to assess in people with autism -- not only because of communication problems, according to Yale's Volkmar, but because their abilities can vary enormously. For example, they could have above-average nonverbal abilities yet far-below-average verbal and social skills. That makes a single IQ score misleading.

"Autism is a world so difficult to explain to someone who is not autistic, someone who can easily turn off the peculiar movements and actions that take over our bodies." It's hard to connect these eloquent words, spoken by Margulies and attributed to Rubin, with the woman you see on screen. In addition to autism, Rubin has physical disabilities. She comes up only to the chest of her assistants, and her walking is labored. Rubin "has a chromosomal disorder. She's not your typical autistic," said Bauman. Could that be what prevents her from being able to speak, rather than the autism itself? Possibly, Bauman conceded.

The longest sentence we hear Rubin utter is a barely discernable "I wanna go to Grandma's." Usually, Rubin says "all right" over and over again. (The repeating of words or phrases, known as "echolalia," is common among people with autism.) She has a helmet to wear when she can't prevent herself from banging her head on the wall. She carries a set of plastic spoons everywhere.

Upending viewers' expectations is what the film is really about, said producer/director Wurzburg. "The public has terrible stereotypes of people with autism and intelligence. . . . I believe that with all human beings, you have to assume that there's competence there. [The public] just cannot possibly believe that someone who doesn't look normal could possibly have intelligence. The same thing happened with slaves when they wrote narratives. People asked, 'How could they be smart?' It's a civil rights issue!"

Others contend that the rights of people with autism are being violated, but by the people putting them into FC instead of into less controversial programs.

Controversy and Heartbreak

Facilitated communication was developed in the 1970s in Australia to assist children with cerebral palsy, a disorder that disrupts the brain's ability to control muscle movement. With a facilitator supporting the child's wrist or hand in front of a letter board or keyboard, the children reportedly began to pick out words and sentences, one letter at a time.

In 1989, after observing the technique in Australia, Biklen introduced it to special educators and speech/language pathologists in the United States as a method that could allow nonverbal people with autism or severe mental retardation to communicate. Biklen and other advocates claimed that most of these individuals actually had a very sophisticated understanding of spoken and written language, but verbal or motor difficulties prevented them from speaking or typing without assistance.

By 1992-1993, FC was being hyped in magazines and on TV as a miracle breakthrough. Deeply affecting stories emerged of nonverbal children and adults released from the bonds of autism, suddenly writing poetry and complex stories, divulging deep personal feelings and displaying brilliant intellect. Children were swept out of special ed classrooms and into advanced placement courses as they started acing exams and writing sophisticated term papers.

Then, Volkmar said, stranger things began occurring. Some children began typing messages in languages they'd never been taught. Others "told" facilitators their parents were sexually abusing them: Parents were arrested, and kids taken from their homes and put into foster care. One child, Volkmar said, "asked" for his medication to be changed -- based on an article he'd "read" in the New England Journal of Medicine.

Skeptics began questioning the method. Unlike people with cerebral palsy, most with autism don't have severe motor problems -- so why should hand support be necessary? How come so many children weren't looking at the keyboard while they typed, when even the most experienced touch-typist needs to at least look to position her hands?

Researchers put FC to the test. In one study, the child was shown one object and the facilitator something different. When the child was asked what she saw, she typed what the facilitator saw. Results from dozens of blinded tests began rolling in from across the country, and nearly all came to the same conclusion: Facilitators were subtly guiding the children's typing. In 1994 the American Psychological Association passed a resolution declaring that "facilitated communication is a controversial and unproved communicative procedure with no scientifically demonstrated support for its efficacy."

The Open-Minded, the Holdouts

How then to account for Margaret Bauman, a pediatric neurologist at Harvard Medical School and Massachusetts General Hospital, who appeared with Rubin in the film? Asked about Rubin's writing, she replied, "I'm certainly convinced that what I've seen her do in front of me was her independent work. Her mom sits next to her. Sometimes Mom says, 'I don't understand that, do it over again.' It's painstakingly slow." But it's her own, Bauman said.

Bauman, who runs a large clinic for autism and related disorders, said that to her mind, facilitated communication "was oversold in the beginning," and then rejected too thoroughly: "The baby was thrown out with the bath water."

What Bauman said convinced her that the pendulum had swung too far was her investigation of a 13-year-old boy with profound autism, severe mental retardation and a seizure disorder who was said to be communicating through a facilitator. The boy was rocking and making no eye contact, until he was put in front of a computer, she said. Then, "the child's whole behavior changed. He came alive in front of that computer." She and other researchers found that, if they read a story to the boy while his facilitator was out of the room, the boy could answer questions about the story through facilitated typing -- questions to which his facilitator couldn't possibly know the answers.

When her report was published in the journal Mental Retardation in August 1996, Bauman said her colleagues gave her grief. FC had already been "disproved."

But "disproved" from an empirical stand point doesn't necessarily mean "never works," some researchers note. For example, a 2001 article in the Journal of Autism and Developmental Disorders reviewed various studies on FC since 1995. In controlled studies (where the facilitator didn't know the answer the subject was supposed to type), there were 62 results refuting FC. But there were also 10 results supporting it -- although the author, Mark Mostert, challenged their validity.

But some persist in trying to "prove" FC. When they've "invested so much emotionally, and even financially, in a very public way, they find it hard to back off," said San Diego State's Green.

Fifty studies have shown you cannot spot the facilitator's influence on what's being typed, said Green, the former president of the Association for Behavior Analysis, a professional group for a type of psychology.

"Very subtle influence can affect people's behavior. It doesn't even have to be touch. It can be the slightest sound, the slightest visual cue," said Green. "You can edit videotape and show whatever you want. They'll show you a close-up of the finger moving across the keyboard . . . but you're not getting what else is going on."

Religion and Politics

Volkmar, who said he personally has never seen a case of validated FC, compares the movement to a religion: "With facilitated communication, people believe in it. They believe it's a way through to their child."

But it's also a political issue. One advocacy campaign, called "Breaking the Barriers," argues for the "right to communicate." Its core value, according to its Web site, is the "presumption of competence" -- meaning its members believe "all people can be competent communicators." Sue Rubin and her mother are shown on the Web site as founding members.

Early intervention programs have helped change the perception of people with autism: Fewer (an estimated 50 to 60 percent) are thought to have IQs below 70, said Volkmar, compared to 75 percent a decade ago. At the same time, "to pretend that someone doesn't have a disability is a disservice," Volkmar said. University of Kansas autism researcher Brenda Smith Myles, who says she has seen only "a couple" cases of validated FC in her career, echoes his concerns: "One of my great fears is that [with FC] the person doesn't know what they're typing. Then they're missing out on appropriate interventions" and skills training.

"I understand why people would say, 'Let's not get people's hopes up unrealistically,' " said Biklen. "But the greatest danger in education is to stop looking for that different person inside. Look at Helen Keller. The work for the educator is to go in the direction of presuming competence, and then finding the right tool."

Lisa Barrett Mann last wrote for the Health section about new Medicare health screening benefits.

2005 The Washington Post Company