Film Documents Families Coping With Autism
Aug. 8, 2006 -- Autism can isolate a child from loved ones and friends.
It takes a toll on not just the child who suffers from it, but also his or her family.
Although the condition is extremely prevalent -- according to Autismspeaks.org, one in 166 children is diagnosed with autism and more children will be diagnosed with autism this year than with AIDS, diabetes and cancer combined -- many people do not understand what it is.
"Autism Every Day" is a new documentary about the everyday life of families with an autistic child, focusing on Alison Singer, whose daughter Jodie suffers from autism.
The film is produced by Lauren Thierry, the mother of an autistic son, Liam.
According to the organization Autism Speaks, an autistic child is born every 20 minutes in the United States, yet medical insurance often does not cover the therapy these children require.
Only .3 percent of the National Institutes of Health's budget went to autism -- a disease for which there is no cure.
Autism is the fastest-growing serious developmental disability in the United States and costs the nation more than $90 billion per year, a figure expected to double in the next decade.
"When people hear 'autistic,' they think of J-Mac [the New York high school manager who scored 20 points in a high school basketball game], 'Rain Man', 'Forrest Gump'," Thierry said.
"But 50 percent of the kids with autism are like those in the film. They don't have a savant quality. People think this is a psychiatric problem, but it's not. These kids are not throwaways. They need the right kind of help," she said.
Thierry said that autism was not a behavioral problem or a matter of a parent not being able to control his or her child, but a neurological disorder that the child could not help.
Misconceptions
Singer, Autism Speaks' senior vice president for communication and strategy, said that people "look at you like you can't control your child, or that you've done something wrong to your own child. They immediately look at you as if it's your fault, and that's what makes it so isolating."
Thierry said "Autism Every Day" was about "stating the case" that autistic children, who are deprived of so much in life, deserve compassion not scorn.
When Thierry first started investigating her son's behavior, she said people told her, "'Your kid's fine. You're just being overprotective. He's a little slow.' And you buy it at first. Then you go to a doctor and get the diagnosis they tell you there's nothing you can do."
Thierry, a former TV journalist who gave up her job to care for Liam and 4-year-old twins, said she found out about her son's condition at 9 a.m. and had to be on air at 10:30.
She went on TV for four hours, and then went back to her office and made a barrage of calls to find out how to treat Liam.
Singer said the day she found out about Jodie was the worst moment of her life.
Initially, her doctor told her there was nothing wrong until a neurologist tested Jodie and said, in Singer's words, "No cure. No help. Good luck and goodbye."
"It's extremely overwhelming," Singer said. "We make progress, do all we can do. With treatment she can be highly functioning. And there have been successes."
"Jodie has learned to talk to us, to tell us what she needs, and there is less 'tantruming.' They do make progress when there is the proper intervention. She's a much happier girl at 9 than she was a few years ago."
Making Strides
Thierry also said the costly therapy was helping Liam.
"In the past, I would know that August meant staying in the city, because we couldn't go anywhere," she said. "This year we've gone to the beach, and now he swims like a fish."
Another thing many people forget, Singer and Thierry said, is that autism does not just impact the child, but the entire family.
"For the first few years, everything was focused on Jodie," Singer said. "It's like everyone has it. Marriage suffer -- 80 percent of the marriages fail. And you lose your time with your other children. I spent so much time with Jodie, I missed my other daughter's babyhood."
Parents whose lives focus on the care of their autistic child also have to worry about what will become of their children after they are gone.
"There are no good long-term solutions," Singer said. "Society doesn't get it. There are no facilities or programs for adults with autism. What will happen to our kids?"
For more information about autism, please visit Autismspeaks.org where you can see "Autism Everyday" in its entirety.