A documentary on treating autism seeks to destigmatize the disease
San Francisco Chronicle
by Carolyne Zinko
Sunday, November 13, 2005
Elizabeth Horn, looking back on the moment doctors diagnosed her daughter, Sophia, with autism eight years ago, described it as being "the darkest day of your life.''
Not only because she was being told her daughter had a brain disorder that would hinder her ability to communicate and behave appropriately with others for the rest of her life, or that her daughter was joining the ranks of some 26,000 people in California who receive services for autism each year, some of whom may require special, institutional care -- a concern to state officials looking at long-term expenditures for the developmentally disabled. It was also because doctors at Mills Peninsula Hospital in San Mateo, where her daughter was being seen, had few suggestions for treatment beyond hiring a speech therapist.
"The first impression you get with this diagnosis is that you're on your own,'' Horn said. "Even though there were resources, there was no sense of direction anyone could give as to how to proceed.''
Horn received a list of therapists to contact. "In 1997, that's all you got,'' she said. "It was woefully inadequate.''
Horn, a filmmaker who primarily makes films for corporations, began looking at her family's journey through an artistic lens. She decided there was a story in how difficult it is to figure out what to do to help your autistic child.
Based partly on personal experience and partly on the experiences of families whose autistic children appear to be recovering with a controversial treatment, Horn created a 60-minute film, "Finding the Words." The film's financial sponsor is KTEH San Jose. American Public Television has agreed to submit the film to PBS for a national broadcast in April, which is national Autism Awareness Month.
In her search for answers, Horn began talking with therapists, asking if they had seen any autistic children -- as she put it -- "get better.'' She learned of people around the United States who were trying behavioral therapy and biomedical cures such as supplements and a highly controversial treatment called chelation therapy -- aimed at ridding the body of heavy metals, which some parents believe are introduced by thimerosal, a mercury preservative in childhood vaccines. Mercury is known to cause brain damage. The medical establishment has countered that there is no proof that thimerosal causes autism. Thimerosal has been eliminated from most vaccines since a 1999 call by the American Academy of Pediatrics and the U.S. Public Health Service for drugmakers to voluntarily stop including the substance in immunizations.
The arc of the film goes like this: Parents with so-called normal children watch something go wrong with their child's development, receive the autism diagnosis and do whatever they can to get their children "back" to a normal state.
"My question to myself as a mom was, 'If another woman can get her kid back, why can't I get mine back, and if I can't get mine back, why?' " Horn said. "That's the question I want every parent to ask. Until they do, children will get lost at a rate of one every 22 minutes in this country with profound autism.''
During the course of four years, Horn visited nine families whose autistic children appeared to be improving with chelation, and she got permission to film them both before and after treatment began. One unexpected result of her interviews, Horn said, was the discovery of similar patterns of symptoms, behavior and recovery in each child. Dishearteningly, Horn said she discovered that many of the parents of autistic children were urged by doctors to put them in institutional care at ages as young as 2.
"The doctors felt they were being kind, and because most of the families had other children, that the best thing to do was to get the child out of the house and give them 24-hour care,'' Horn said. "But something in all these parents refused to accept the diagnosis. That moment where you decide that rather than give in to despair, you're going to turn and fight, was interesting to me as a filmmaker. Each of these families had that moment, and they had the outcomes with children improving as a result.''
One of the more dramatic improvements included in the film is that of a boy who did not begin to speak until he was 15. His family attributes it to the treatment. Although her 10-year-old daughter's progress has not been dramatic, Horn believes she is "slowly but surely getting better.''
The film was financed by 70 individuals, many from Silicon Valley, Horn said. Her husband, Zach Nelson, is chief executive at NetSuite.com.
One of her goals is to push for the use of technology to build a database of information on autistic children so that patterns of symptoms could be detected more quickly and treatments could be targeted more effectively.
Not all the families Horn approached wanted to be included in the film, even those whose children were said to be doing better after treatment. Horn said there is an "underground" of recovered children because some families don't want anyone to know that their children had been diagnosed with autism in the first place.
The film is Horn's attempt to push for a medical paradigm shift, which she feels will help remove treatment obstacles such as stigmatization and isolation.
"If we can change the definition of autism from incurable brain disorder to an illness, there's no shame in getting well,'' she said. "In fact, it's a triumphant story.''
E-mail Carolyne Zinko at email@example.com.