WESTCHESTER
When Autism Strikes
By ALICE
KENNY
ROTON-ON-HUDSON
— WAVING purple socks and a fleece jacket, Astrid Vaughan tried to
capture the attention of her drenched daughter, who refused to stop
bouncing on her trampoline, despite the pelting rain.
"Kee-Kee, sweetie, how about putting on your socks?" she pleaded,
standing in a chilly downpour in front of their split-level home in
Croton-on-Hudson. "Would you like your jacket?"
"Wah, he, he!" Kristie squealed, flipping a full 360 degrees,
landing on her bare feet, then flying high again.
Mrs. Vaughan long ago gave up trying to limit Kristie's bounces
to appropriate weather. Kristie, who is 12, has severe autism, a
neurological disorder that encases her in an invisible shell,
choking her off from normal communication and interaction. For a
decade, she started the day when she felt like it, often at 3 or 4
in the morning, breaking out of the house and onto her beloved
trampoline. Like many families with autistic children, the Vaughans
installed locks on the insides of their doors, hiding the keys from
Kristie. But she escaped by removing — or cutting holes through —
the window screens. When stuck inside she bounced on the beds until
the beds broke, the box-spring coils collapsed.
Kristie's behavior was erratic. At one moment, Mrs. Vaughan said,
she was her sweetheart exuding unconditional love. At another, she
would bolt naked from the house and plunge into the neighbor's
swimming pool. Her speech was limited to rote responses,
interspersed with unintelligible noises. As she grew older, she
began to wander, disappearing into the woods, down faraway streets
and along crowded mall corridors.
"She has no inhibitions, does what she feels like doing," Mrs.
Vaughan said, her calm voice a contrast to her words.
When Mrs. Vaughan first learned of Kristie's diagnosis in 1992,
autism was considered a rare disorder. But, during the last 10
years, the percentage of New York State preschoolers with a
diagnosis of autism has quadrupled, from one in 2,000 children to
one in 500, according to a statewide study by the New York Autism
Network.
Doctors cannot completely account for this escalation, nor do
they know autism's causes or cures, leaving parents like Mrs.
Vaughan and her husband, Mark, a telecommunications salesman,
experimenting with unproved treatments and blaming everything from
the environment to themselves for their child's disability.
"When a child is diagnosed with autism, it's not the child that
is diagnosed, it's the entire family," said Dr. Andrew Baumann, a
psychologist and chairman of the New York Families for Autistic
Children, a Long Island-based group, and father of an 8-year-old
autistic son. "It changes dynamics in a whole strange way, placing a
huge strain on the mother and father. There's guilt, fear, shame,
anger. Everyone wants to blame someone."
Exhausted, seeing no medical remedy on the horizon and frightened
for Kristie, and by the impact of her behavior on their two other
children, Julia and Kurt, the Vaughans made an agonizing decision.
In late July, they placed Kristie in the New England Center for
Children in Southboro, Mass., a year-round residential school, the
best they could find, nearly three hours from home. As is true with
many families grappling with autism, a cluster of complicated
factors shaped the choice, and has left Mrs. Vaughan with a swirl of
feelings, part guilt, part apprehension, part hope.
"Could you imagine how you'd feel if your daughter wasn't going
to be sleeping at home every night?" Mrs. Vaughan asked. "But I know
it's for the best. I know it's best for her and Julia."
When Kristie was home, Kurt, 14, preoccupied with girls and his
guitar, was rarely there. He saw his sisters in the car when his
mother took him and his friends to games and get-togethers.
Meanwhile, Julia, 10, slight and strikingly shy, stayed away from
the trampoline, and away from her sister. She had been afraid of
Kristie for years, Mr. Vaughan said — afraid she might hurt her,
afraid of her unpredictability. The older Kristie got, the more
withdrawn Julia became.
Last winter, something in Julia seemed to snap. Their pale
delicate daughter began spending much of her time alone in her room,
crying, smelling perfumes, winding strings into enormous balls. With
Kristie vacuuming the family's attention, the Vaughans struggled for
time to focus on Julia's crisis.
"I'd really like to see Kristie get into a group situation so
Julia could have a house," Mr. Vaughan said in early summer, his
eyes glancing toward the bedroom where Julia had hidden all day.
"She's a child with the ability to be saved. I don't want her
falling into the abyss."
DANIEL CRIMMINS, the former director of the New York Autism
Network at Westchester Medical Center in Valhalla, headed the study
documenting the sharp rise in the percentage of New York state
children with autism over the last decade. During this period, the
definition of autism was expanded to include more able children on
one end and more mentally impaired on the other. Using the new
definition, one in 250 children were labeled autistic.
Despite the changing definition, Dr. Crimmins said, "When you
compare apples to apples we're now talking about one in 500 children
having autism compared to one in 2,000 a decade ago."
His results, which have not yet been published, appear similar to
the escalating rates noted in various studies across the country.
A child is now more likely to have autism than Down syndrome, a
detectable chromosomal abnormality causing mental retardation. A
baby is more likely to develop signs of autism than a teenager is to
develop schizophrenia. With appropriate support, children with Down
syndrome often live at home well into adulthood. Therapy and
recently developed anti-hallucinogen drugs can help bring teenage
schizophrenics back to reality.
But children like Kristie, even with the most patient parents and
best educational opportunities, are often placed in long-term
residential centers before they reach their teenage years. The
state, county and local school district typically split a student's
annual tuition, upward of $100,000. Despite near universal agreement
that there is some hereditary link, no genes have been identified
and no prenatal test exists to warn prospective parents of this
devastating disability.
"As a mother, when something so bizarre happens, something you
never heard of, you start looking at yourself," Mrs. Vaughan said.
"What did I do to make this happen? What if I hadn't moved here? You
investigate everything. Life becomes so difficult because there are
only 24 hours in a day."
Did the Indian Point nuclear power plant, PCB's in the Hudson
River or fertilized lawns cause a countywide epidemic, Mrs. Vaughan
wondered. Did the inoculation for measles, mumps and rubella that
Kristie received shortly before her diagnosis unleash her autism?
Autism is four times as common among boys as among girls. Why was
her daughter stricken?
Dr. Crimmins's study appears to discount Mrs. Vaughan's suspicion
that something specific to Westchester caused Kristie's autism. His
statistics are based on submissions from preschool directors across
the state identifying 4- and 5-year-olds with autism, children with
impaired social interaction, communication and behavior. The results
indicate that autism rates have swelled everywhere, he said;
Westchester rates match the sharp increases found throughout the
state.
Working out of Albert Einstein Medical College in the Bronx, Dr.
Michelle Dunn, a neuropsychologist, is involved in the largest
worldwide search to date for the causes of autism. Like many experts
in the field, Dr. Dunn believes there are several primary
explanations for the increase but cannot completely account for its
four-fold leap.
Autism is a relatively new diagnosis, first identified by Leo
Kanner in 1943. Besides the expansion of the definition in the last
decade, parents have been more willing to accept the diagnosis as
they learn that it enables their children to qualify for better
intervention services. In addition, since brain abnormalities are
associated with autism, higher survival rates of brain-damaged
premature babies leads to more autistic children.
"I also think something else is going on," Dr. Dunn said. "More
children with autism are being born. It's like a jigsaw puzzle where
we haven't filled in the middle yet and might be missing some
pieces."
While scientists have found a correlation between genes and
autism, they have not pinpointed which genes are responsible. By
studying CAT scans, researchers have identified abnormal brain
structures common among autistic children. But they do not yet know
how these abnormalities affect brain function.
Scientists are looking closely at immunizations, infections,
metabolic changes and environmental factors. Although various causes
have been implicated, none has been proved. Examinations of the
relationship between measles/mumps/rubella vaccines and autism have
found insufficient evidence to support a link.
"I blame it on the environment," Mrs. Vaughan said. "We're
products of our supposed advancement."
IT was an odd blur, Mrs. Vaughan recalled, that day just before
Thanksgiving 10 years ago when the neurologist confirmed that
Kristie had "autistic tendencies." Kurt, 4, was up to his usual
antics, tumbling with his friends. Julia, 8 months old, was starting
to sit up. The sun, as best as their busy mother could remember, was
probably shining.
But the world suddenly looked bleak, senseless. What forces had
replaced their quiet, cheerful baby with a 2-year-old who didn't
turn and smile when Mommy called her, didn't lift her arms for hugs
and reassurance?
About one-third of children found to be autistic seem to develop
normally until shortly before their second birthday.
"We know from videos that they lose language and social skills,"
said Dr. Isabelle Rapin, professor of pediatric neurology at Albert
Einstein Medical College in the Bronx. "Their play skills go down
the tubes." Considered by many the doyenne of autism, Dr. Rapin has
spent decades studying the disability. "We have no idea what causes
this," she said. "We don't know. We don't know. I'm telling you we
don't know."
Mrs. Vaughan shouldered the task of trying to rescue her daughter
from disability. She joined parent groups advocating for research
and treatment and searching for a cure. She tried therapies, drugs
and special diets. The trampoline was supposed to help Kristie focus
and better understand her body in space.
Instead of returning to her former high-level sales position with
Intercontinental Hotels, Mrs. Vaughan accepted a job as an office
assistant at a local water vending company, scheduling her work
hours around Kristie's school day. While insurance covered most of
Kristie's medical bills and the school district paid for her
education and therapies, it was hard to afford the $15 per hour
charged by qualified baby sitters.
Over the years and with her school district's backing, Mrs.
Vaughan tried many different educational settings, from home
schooling to inclusive classrooms to special education. Kristie did
make progress. During the structured, fast-paced program at her most
recent school, Devereux Millwood Learning Center in Millwood, she
appeared completely aware, giving short, practiced responses to her
behavior therapist's questions. But when the therapist became
momentarily distracted, Kristie reverted immediately to her own
language of bings and beeps, squeals and screeches and to her
private, special world.
IN July the sun beat down mercilessly, as one day melted into the
next, marking the countdown to Kristie's move.
"The day goes; the whole day goes," Mrs. Vaughan said. "I can't
even deal with putting her stuff together. I'm walking around like
I'm in a coma."
After holding her family together for 10 years with courage,
grace and very little sleep, she suddenly seemed vulnerable,
disturbed by her husband's resignation to the situation,
second-guessing the decision to place Kristie far from home,
wondering whether even she might need counseling.
Since Kristie's verbal ability was severely limited, Mrs. Vaughan
planned to prepare her daughter for her new life by showing her
snapshots. But Kristie refused to look at the photos. When her
mother mentioned anything about the move, Kristie's response was
always the same, "No."
Mrs. Vaughan intended that after Kristie's mandatory first month
on campus, she would return home every other weekend. But there was
no way to explain that to Kristie. "I don't know how to talk to her
about this," Mrs. Vaughan said. "She probably won't get the concept
that she'll still have her home and her room here. When the bus
picks her up and brings her home to us; that's when she'll know."
Although she rarely broke ranks with her husband, she was annoyed
by Mr. Vaughan's practicality. "Another family — the whole family
went to therapy after they placed their child in a residential
school," she said. "His feeling is `no one's going to need therapy
in this house.' "
THE trampoline stands silent now. No squeals, no beeps, no
bounces.
"It's quiet, too quiet," Mrs. Vaughan said. "I think about her
every minute."
Her husband took to tackling big projects, cleaning out the
garage, emptying the tool shed, anything, Mrs. Vaughan said, to keep
from feeling the pain of Kristie's absence.
Kurt appeared bewildered. "It's a lot different," he said. "I was
used to her screaming and running around. I'd get angry at her but I
always loved her. Now there's something empty in my house."
But for Julia, Kristie's move appeared at first to open a window
to safety and freedom. Julia who for months, even during July's heat
wave, refused to leave her hot room, immediately began swimming
daily at the local pool. Less than a week after Kristie's departure
Julia invited a girlfriend over, her first guest since early spring.
Although Julia still has much to work through, Kristie's move
seems to have helped mend the sister's relationship. During
Kristie's visit over Thanksgiving, Julia, who used to cringe when
Kristie came near, instead took her big sister's hand, spoke to her
softly and smiled.
While Kristie appeared ecstatic to be home, she also seemed
adjusted to her life away. When the school van pulled into the
Vaughans' driveway, Kristie bounded out, squealing, barely allowing
the bus to brake. And when the van returned after the holiday,
Kristie ran across the lawn, leaped back into her seat and sat ready
for her ride back to school.
Although her departure has lightened the family's workload, it
has not alleviated their heartache. They lean on one another and
friends for support.
"It's very strange," Mrs. Vaughan said. "I miss her so much. I
almost miss the stress."
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