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 When Burlington filmmaker Anne
Barbano approached Vermont families to interview them about the
experience of raising a child with autism, she was traveling on
familiar ground.
Barbano's
9-year-old son Nicholas was diagnosed with autism five years ago.
Though the diagnosis gave a name to the mysterious problems that
Nicholas began exhibiting as a toddler, this comfort was short-lived.
Barbano and her husband, Michael George, learned from doctors and
research studies that autism has no cure and that symptoms can range
from mild to severely debilitating.
With
intensive speech therapy and other treatment, some children with autism
overcome communication problems and live independent, productive lives
as adults; but as Barbano and her husband discovered, finding good
treatment and the money to pay for it are enormous challenges.
"It's like having a prescription
but no one can fill it," Barbano said.
The difficulty of family life with
autism is portrayed vividly in Barbano's new film, "Living the Autism
Maze," set to be screened Saturday at 5:45 p.m. at Merrill's Roxy
Cinemas in downtown Burlington. The 40-minute documentary, co-directed
by Middlesex filmmaker Jeff Farber, takes viewers into the lives of
Barbano's and five other Vermont families with autistic children. The
parents share their frustrations with doctors and school administrators
and acknowledge their big fears: What will happen when my autistic
child becomes an adult?
"We're all terribly frightened for
the future, for our kid's future," George says in the film.
The film touches on the raging
debate about the causes of autism -- which have not been conclusively
identified -- and the bitterness some parents feel after a diagnosis is
made.
Doreen Giannelli of Essex Junction
describes in the film how she felt after learning her pre-school
daughter Darby has autism. "Our daughter has a medical condition and a
medical diagnosis for which there is no medical treatment. And in my
mind, once Darby was diagnosed, the medical community pretty much said.
'OK, 'bye."
Autism is a neurological disorder
that affects about one in 250 births, according to the U.S. Centers for
Disease Control and Prevention. Symptoms include delayed or absent
language, cognitive delays, repetitive body movements and limited
ability to understand social rules.
The cause is unknown. Heredity and
problems in pregnancy or delivery may be a cause. Also debated: whether
childhood vaccines with traces of mercury are a factor.
As autism diagnoses
increase, more schools are teaching children with the disorder. Most
are entitled to special education services that typically exceed
average per-pupil costs. In Vermont, schools spend upward of $150,000
per child or more annually on children with the most severe cases of
autism, according to the Vermont Education Department.
"Maze"
suggests that despite
considerable expenditures by schools, many parents aren't happy with
the result. Parents talk in the film about poorly coordinated programs,
educators and therapists with no training in autism, and bad advice.
One of the families in the film
pulled their son out of the school in favor of home schooling. Another
family described how their son -- a college graduate now working as a
computer programmer -- was kept off the honor roll because he couldn't
pass gym and was tagged early on as unlikely to graduate. "It seems to
me there's probably a lot of money spent without a lot of results,"
Farber said.
The film also suggests that for
children with more severe needs, success does not come easily. Lisa
Lawlor of Woodstock describes on camera the intensive therapies and
treatment required to help her school-age autistic twin sons learn
basic skills. It took four months for the boys to learn to sit in a
chair at school. They could not speak until age 6. "Not a word --
nothing," Lawlor says in the film.
Barbano is relatively happy with
the services her son receives. Nicholas is in third grade at Edmunds
Elementary school in Burlington. He's assigned to a regular classroom,
but attended by an aide throughout the school day. He receives one hour
of occupational therapy and three sessions of speech therapy a week.
Medicaid covers up to 26 hours a week of personal care, during which an
aide works with Nicholas at home.
Even with access to special
services, there are many challenges. Barbano recently visited her son's
classroom to talk with his fellow students about autism and give them
more insight into Nicholas. Sometimes he grabs for other children's
snacks. Barbano explained that she doesn't want him to do this, but
that he might not be aware that the food belongs to another child. Her
goal during the chat: "Let's try to understand where he's coming from."
Barbano said the film is in some
ways an SOS from families who are struggling to help children with a
difficult disability. She's convinced that society can do better by
families, and that someday autism will be defeated.
"I'm really waiting for the cure,"
Barbano said. "I think that's what helps me get up in the morning."
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