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Thursday, March 10, 2005 - Page updated at 02:28 p.m Film takes us into world of autism Seattle Times staff reporter In the short documentary "Autism Is a World," we see Susie Rubin, a 26-year-old with the developmental disorder, struggle with spoken language that comes out in labored, garbled blurts. Yet when she pecks one finger at a time on a portable keyboard, she speaks in complex, often poignant sentences. One minute she is an advocate, telling a roomful of peers and their guardians she will do what she can to help them unlock their potential. The next minute, she is fixated on tap water splashing atop plastic spoons that she clutches wherever she goes. "When I am watching the water I am zoning out," she says, "letting the autistic part of my brain take over. My mind goes blank ... I stop thinking." "Autism Is a World," co-produced and directed by Gerardine Wurzburg, is one of a number of Oscar-nominated shorts screening at Northwest Film Forum for a week starting tomorrow. Despite having an IQ of about 133, Rubin would not be able to call 911 if she needed to, her mother says, and she requires 24-hour assistance. Considered mentally retarded through her adolescence, she attends college now with the help of a support worker who often reminds her to keep her loud voice down in class. The gulf between the woman you see and hear and the thoughts she shares about her life with autism in this film is made wider by the soft, lovely voice of actress Julianna Margulies, who acts as her narrator in it.
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"Autism Is a World"
Autism is as heartbreaking as it is mysterious. It is pervasive and lifelong. People make snap judgments about Rubin and others with the disorder and then lump them into a one-size-fits-all label. But the disorder encompasses a spectrum of behaviors and levels of severity. Some with the condition injure themselves; some are agonizingly passive. Some are mute their whole lives; some speak, but are stuck on rote "scripts." Some blend in fairly well. Some are geniuses in one respect but lost in another. Some appear to have significant mental impairment. Many autistic people are trapped in strange rituals like curling corners of book pages over and over. Some jab fingers in odd directions and scream. Some get fixated on objects, schedules and routes. What they all seem to share is a fundamental inability or struggle to make or find those social interactions and cues most of us learn instinctively. So they are isolated, even when surrounded by people who love them. My 13-year-old son, diagnosed with autism 11 years ago, doesn't talk and gives little if any indication he understands what I say. He'll look me in the eyes only if it is important and only because he wants something — right now. If I hadn't shared his life, I would have had no clue that he observes or what he might know. So the loudest comment from the film for me was when Rubin says, "before I could communicate, I was considered a nonperson."
In fact, the strength of "Autism Is a World" is the portal it provides. I understand it when Rubin says, "I knowingly contribute to my looking retarded" by carrying plastic spoons wherever she goes, "but spoons are my comfort. I cannot explain how or why I need them. I just do." Essentially, facilitated communication (FC) involves an autistic person typing with the assistance of a helper. Often the "facilitator" will hold the disabled person's hand or wrist. Sometimes the caregiver holds the keypad, watches what is typed and points out errors. Rubin types independently and slowly at the portable keyboard held by a support worker, curling her tongue over her top lip as she takes aim. FC appears to have opened Rubin's world, but the practice came under fire in the mid-1990s when several cases showed that facilitators were subtly manipulating the messages in clinical trials and court cases. The controversy surrounding the technique is not discussed in the film. Gina Green, a San Diego scientist and autism expert, says the filmmakers should have at least acknowledged the debate so parents don't get false hope. "My opinion about it is based in large part on the results of some 50 controlled studies showing that the messages produced through FC are authored by the facilitators, not people with disabilities," she says. Director Wurzburg won an Oscar in the short-documentary category in 1992 for "Educating Peter," the story of the mainstreaming of a student with Down syndrome. She acknowledges that some facilitators in the past have erred in how they applied the technique, but says it works for Rubin. And the documentary is not a story of life becoming rosy with understanding. The struggle to control her autistic tendencies is constant, still. "The film, through Sue, tells what it is like to live with autism," Wurzburg says, "and it also gets across that you can't assume that someone is not intelligent because he or she can't talk." Richard Seven is a Pacific Northwest magazine staff writer.
Copyright © 2005 The Seattle Times Company
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