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.
Cameraman Gary Griffin, right, trains his lens on Sue Rubin as she visits the racetrack in the Oscar-nominated film "Autism Is a World."
(Courtesy Of State Of The Art)
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" Autism Is a World" will be shown at the National Archives Theater in D.C. on Sunday, Feb. 27, at noon. It will also air on CNN, which co-produced the movie, on Sunday, May 22, at 8 p.m. NBC News is looking at autism all week in its series "Autism: The Hidden Epidemic." Segments will air daily on "Today," "The Nightly News With Brian Williams," CNBC's "Power Lunch," MSNBC and Telemundo.
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 ½ -- 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.