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 Nicholas Barbano-George is a
curious, lively, adorable 11-year-old with autism. He's also now a
movie star. The Burlington boy is among several children spotlighted in
Living the Autism Maze, which focuses on Vermonters grappling with this
spectrum of neurological disorders. The documentary -- premiering this
weekend in Burlington -- has been a literal labor of love for Nicholas'
mother Anne Barbano, who co-directed the project with Jeff Farber of
Middlesex.
"It
was initially supposed to be 20 minutes, then we were trying for 30
minutes," recalls Barbano, who funded the project with a $9600 grant
from the Vermont Developmental Disabilities Council. "Jeff finally
said, 'You know what? Your film's telling you it's 40 minutes."
Barbano imagined a comprehensive,
oral-history approach that would include interviews with at least 10
families challenged by autism. They settled on six, and managed to find
an array of people from Winooski to Woodstock. Although each has a
distinct story to tell, there seems to be general agreement that
medical personnel and public school systems often don't provide enough
information or support. Hence the "maze" that must be navigated by
parents desperately trying to figure out how to help their kids.
Autism hits an astonishing 1 in 166 children, usually manifesting by
age 3. They tend to demonstrate problems with social relationships,
communicating emotions and sensory signals. Nicholas appeared to be a
normal infant, his dad Michael George says in the film, but by age 3 it
became evident that "something just wasn't right." Nonetheless, Barbano
points out that Nicholas wasn't officially diagnosed until the year
2000, when he was 6.
Another mother talks about her
baby son experiencing a grand mal seizure and requiring CPR the day
after being vaccinated for measles. "Then he stopped babbling and
making eye contact," she says of the boy, now a teenager.
This account would seem to confirm
the common suspicion that a mercury-based ingredient in childhood shots
can bring on autism, a theory that has yet to be proven with scientific
certainty.
Barbano and Farber interview
several experts, such as a doctor from the Vermont Child Development
Clinic, who speculate on a range of potential causes from genetic to
environmental. Nobody knows how to make the disability go away.
"Sometimes when you get that label
of autism, the attitude is, 'Well, there's no cure,'" Barbano suggests,
miming a typical shrug of discouragement.On camera, the mother of a
little girl notes, "The medical community lost interest once she was
diagnosed."
Children with autism often can
make substantial gains in specialized educational programs. In the
film, Nicholas responds with enthusiasm to coaching from a speech
therapist. "Vermont is a small state," Barbano observes. "They're
trying to offer more programs to help families. It's evolving."
The film's struggling parents
impressed Farber, who has about 20 previous documentaries under his
belt. "As a father of two, it struck me how much more energy these
people need to protect their kids and find services for them," he says.
"I'm in awe of their commitment."
Living the Autism Maze will screen
for free at 5:45 p.m. on September 17 at the Roxy.
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