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One
minute they're sitting, the next they're gone.
Off the couch and onto the rocking chair, into
the corner of the room, anywhere but where they
were.
The children move quickly, often too fast for
their parents - or even the camera's lens - to
catch them.
This speed, this constant flash of children, is
why the Kirton house looks like it does: a veritable
maze of locked doors and makeshift barricades
that are designed to keep kids in, or out, of
certain areas. It is why the Kirton parents can
keep talking through just about anything, hardly
raising their voices while 8-year-old Nephi has
yet another "meltdown" as 5-year-old
Sarah, aka "Tigger," bounces madly on
the couch beside them.
After all, if John and Robin Kirton focused too
much on these incidents, who would catch 3-year-old
Ammon, lovingly referred to as "The Destroyer,"
before his little hand finds its way into his
dirty diaper? And where, during all of this, are
the older children, Bobby and Emma, or the baby,
Mary?
Life with six children is tough. Life with six
children with autism practically defies description.
The stress has landed the family in juvenile court,
following an offhand comment from a frustrated
mother, and cost John Kirton his job and the family's
medical insurance. But it has also helped the
Kirtons - who now market their own "Autism
Bites" T-shirts - recognize the healing power
of laughter.
"We use sarcastic humor to diffuse our stress,"
Robin Kirton said with a smile. Added husband
John: "If we didn't laugh, we'd cry."
Dubious distinction
In Utah, 1 in every 133 children has autism, according
to a recent study that placed Utah's rate about
12 percent higher than the national average. University
of Utah researchers found that the rate is even
higher for boys, at 1 in 79.
Even with such high state rates, having six children
from the same family on the autism spectrum is
extremely rare, said Judith Pinborough Zimmerman,
Ph.D., assistant professor in the department of
psychiatry at the U.
"What tends to happen is sometimes families,
if they have one child with autism, they tend
to stop having other children," she said.
"Geneticists refer to it as stoppage."
Autism is characterized by impaired social, communicative
and behavioral development. It is a spectrum disorder,
with symptoms and characteristics ranging from
mild to severe. Common characteristics include
resistance to change, a difficulty expressing
needs, tantrums, difficulty socializing with others,
an obsessive attachment to objects, over- or under-sensitivity
to pain and a preference for being alone. There
is no medical cure for autism.
Autism cannot be detected by medical tests; diagnoses
are based primarily on observation. Its causes
are unknown, though research indicates that genetics
can be a factor, while many believe that environmental
factors and even childhood vaccines may be to
blame.
The Kirtons note all of these factors when questioned
about the cause of their children's autism. They
also point to John's age as a possible factor,
as he was over 40 when all of his children were
born. (Bobby, the oldest boy, is Robin Kirton's
son from her first marriage.)
The Kirton's own research, through Internet searches,
online discussion groups and local autism conferences,
has led the family to believe it may lead the
nation in the number of children with autism.
It's a dubious distinction to John and Robin Kirton,
but they also see it as an opportunity to educate
others about the disorder and, maybe one day,
start their own nonprofit organization to raise
money for other families with autistic children.
This week, researchers from the Utah Registry
of Autism and Developmental Disabilities, a joint
project between the state health department and
the U. medical school's department of psychiatry,
will visit the family's home to draw blood from
each family member as part of an ongoing study
into the role of genetics in autism.
'Dangerous thoughts'
John and Robin Kirton bristle when asked the all-too-familiar
question about their family: Why didn't they,
as many parents do, stop having children?
Depending on their mood, the Kirtons respond with
humor, frustration or defensiveness. Regardless,
the answer remains the same - all of the Kirton
children were already born when Bobby's fifth-grade
teacher told John and Robin she suspected the
boy suffered from Asperger's syndrome, a mild
form of autism.
According to the Utah Registry of Autism and Developmental
Disabilities, signs of autism-spectrum disorders
are often the most obvious in 3 and 4 year olds,
while more mild forms are often not diagnosed
until later in childhood.
After observation tests confirmed Bobby, now 13,
was a high-functioning autistic, the Kirtons began
to become concerned about their other children.
Sarah's diagnosis came next, then Ammon's.
"That's about when my grieving period started,"
John Kirton said.
The Kirtons sought early intervention services
for the two children, each considered "classic
autistic." Falling at the severe end of the
spectrum, each child is still in diapers and has
limited verbal skills. It was one of those early
intervention workers, from a local nonprofit organization
that contracts with the Utah Department of Health,
to whom Robin Kirton made the comment last fall
about the family's Murray home being so dirty
that some days she was tempted to "burn the
whole thing down and start over."
The remark was never meant seriously, said Robin
Kirton. It was simply one of those "dark
and dangerous and scary thoughts that crosses
the minds of all parents but you don't do."
Still, within an hour, workers from the state
Division of Child and Family Services were at
the front door. One week later, all six children
were at the Christmas Box House, where they lived
for two weeks while their mother's mental state
was evaluated.
"I feel like my character was, at first,
so smeared," Robin said. "At the same
time, I know they were doing their job. I've just
had to prove myself and earn our freedom back.
"It really helped humble us. It made us appreciate
the children more."
It also led to an official diagnosis for the other
three Kirton children after the juvenile court
judge ordered that they be tested for autism,
as well. Last November, the news finally came:
Emma, 9, and Nephi also have Asperger's syndrome
and 2-year-old Mary has PDD-NOS, which stands
for "pervasive developmental disorder - not
otherwise specified."
The news, Robin said, "was hard to take."
However, the diagnoses also helped the family
in certain ways, she said. "For one, it helped
make sense of all the stress."
'Armageddon level'
The Kirtons will be back in court late next month
for what they hope will be their final court hearing.
"The thing with the thing," as John
Kirton refers to the state intervention, is finally
winding down.
The pair has made necessary changes to their home,
and John Kirton has found work driving a truck
for a local excavation company. The owner is sympathetic
to the family's situation and the fact that John
misses at least one day of work every couple of
weeks to tend to his family - the reason he lost
his previous job. And although John and Robin
are without health insurance, three of the children
receive Medicaid and the other three are on federal
SSI (supplemental security income) through Social
Security.
Meantime, the couple, who celebrated their 11th
wedding anniversary in late May, will continue
to cope with their situation in their own ways.
John blogs on their Web site autismbitestheblog.blogspot.com/
about his family and rents World War II movies
because, "even though I know how it ends,
I like to see the fighting and how they got there."
Robin, on the other hand, steals whatever free
time she can to play her favorite computer game,
Snood.
Recently, while reaching the highest level in
the puzzle game, Robin reached an important conclusion
about her life.
"I realized that the lower levels aren't
fun now, because I'm good at it," Robin Kirton
said. "If I had, say, six normal kids or
less kids that were normal, that would be easy
for me. God knew I was up for the challenge, so
he made it.
"Six autistic kids is my Armageddon level."
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