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Raising Justin
For the parents of an autistic child, coping is an
ever-changing challenge.
by Irene Sege, Boston Globe, 5/1/2003
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The imaginary play that comes so effortlessly to Faith is
anything but instinctive to Justin, who was diagnosed with
autism when he was 3 and had not yet begun to talk. The
stimulation he seeks helps him cope with a chaotic world of
sights, sounds, tastes, and smells that his brain cannot easily
separate into foreground and background information.
With anecdotal evidence suggesting that there are growing
numbers of children like Justin in Massachusetts, the state has
launched a study to document the incidence of autism. California
recently found a threefold increase in the number of cases there
between 1987 and 1998. "I suspect we'll find the same thing
that's been discovered in California," says Dr. David Urion, a
neurologist at Children's Hospital.
Autism spectrum disorders are not apparent at birth and not
detectable through simple blood tests, which makes prevalence
difficult to pinpoint, Urion says. Recent estimates of autism's
occurrence range from once in every 125 people to once in 5,000.
Despite the conviction of many parents that the disability is
linked to vaccinations, most scientists believe its origins are
genetic. Autism costs school systems about $50,000 a year for
each child sent to a private day program and $100,000 for each
child placed in a residential one. This year, Massachusetts
began funding 26 autism specialists to help communities educate
as many of those children as possible within public schools.
For Allison and Michael Daigle, raising Justin is a painstaking
process. Every new experience entails preparing him first with
pictures and a written schedule. Teaching him to brush his teeth
took two years of gently touching his sensitive mouth until he
could tolerate 10 strokes of a toothbrush. "You think, `Good
job,' " Allison says, "but you do get worn down, and you do
think, `My God, how can this possibly be?' "
This winter the Daigles faced a more harrowing challenge that
left them feeling they had been naive to think that patience and
persistence would be enough to ensure steady improvement.
Suddenly, after 18 months of progress in everything from
Justin's speech to his ability to be included -- with the help
of an aide -- in a regular kindergarten to his capacity to
navigate life without tantrums, Justin woke screaming most
mornings and remained agitated through the day. He sometimes hit
himself in the head. For 10 weeks the Daigles didn't know if the
change was permanent or only a phase.
Justin slowly improved after Presidents' Day, and by April he
was back to his regular schedule, but not before his parents,
teachers, and therapists had tried a smorgasbord of strategies.
Justin's smile returned, but not before his mother relived the
anguish of "losing" her son that she experienced when he was
diagnosed.
"Every day I grieve," she says during the crisis. "When he was
younger and he had periods like this, he hadn't proven he had
any kind of functioning. Now we've gone through 18 months of
consistent progress. Learning to read. Learning to write.
Inclusion. Is this neurological activity? Or is it that this is
what autism looks like?"
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