Raymond Fox bit his dog's tail. Later, without saying a word, he pulled
down his pants in front of a couple of strangers.
And this was a good
day for the 5-year-old boy.
For years, his mother, Cam Jellison, knew Raymond was different from
other boys his age. But no one would tell her why.
``We didn't want to label him, either,'' Jellison said. ``But we
wanted to know what to do.''
Now, Jellison, who lives in Stow, and other parents throughout the
region with similar questions are getting some long-awaited answers at
the Autism Center at Children's Hospital Medical Center of Akron.
Raymond is one of about 50 children who have been brought to the
center since it opened last year. The center is a joint project between
the hospital and Akron's Blick Clinic, which provides services to people
with developmental disabilities.
For reasons no one knows, autism and other related developmental
disorders are being diagnosed more frequently here and nationwide.
The Autism Center is just one example of how health-care providers,
government agencies and schools are responding.
``I think we're constantly trying to evolve what will make sense for
individuals and their families,'' said Gregory L. LaForme, a
psychologist and executive director of the Blick Clinic.
It's not known exactly how many children have autism nationwide, but
experts generally agree that as many as one in 500 have some form of the
disorder. Statewide, the number of people ages 6 through 21 identified
by the Ohio Department of Education as autistic jumped from 22 in 1992
to 2,858 this school year.
Greater awareness and recent changes in the criteria used to diagnose
the disorders most likely have contributed to the increase in cases.
Autism is an often-misunderstood disorder that affects the brain's
normal development in three key areas: social interaction, communication
and behavior. Early diagnosis is critical.
Autistic people ``need to have a jump-start on how it is they can
effectively engage their world,'' said David L. Holmes, a psychologist
and chairman of the panel of professional advisers for the Autism
Association of America. Holmes runs a service center for autistic people
of all ages in New Jersey.
``When it comes to autism,'' he said, ``it is not just another
disorder. It's a highly unique disorder.''
Autism Center team
The Autism Center at Children's Hospital coordinates a patient's
appointments with a team of experts, including a developmental
pediatrician, a social worker, a psychologist from the Blick Clinic, a
genetic counselor and other health-care professionals.
The team members meet to discuss the case, reach a diagnosis and come
up with recommendations that Dr. John Duby, the center's director, later
shares with the parents.
``We're really trying to take a good look at the child,'' said Duby,
who also serves as director of developmental and behavioral pediatrics
at Children's Hospital.
Before the center opened, parents from the 17 counties that
Children's Hospital serves sometimes had to juggle these appointments
themselves.
``Now they can come to one place and get it all together,'' Duby
said. ``We offer to follow these kids. We don't just see them for this
one short evaluation and then just drop the ball.''
In Raymond's case, his mother had been asking doctors about what was
causing his lack of speech and unusual behavior since before her son
turned 2. Doctors kept telling her to give Raymond time.
``We couldn't wait anymore,'' Jellison said.
After Raymond made several visits to the center last summer, the team
determined the boy had mild to moderate mental retardation and pervasive
developmental disorder, a variant of autism.
Center personnel helped come up with a plan to wean Raymond off his
seizure medication, which was causing him to be drowsy and less
attentive, Jellison said.
Raymond's mother and stepfather, Bryan Jellison, also consult Duby
for advice on a special education program at Indian Trail Elementary in
Stow.
Officials at the center said appointments usually are covered by
health insurance. However, that wasn't the case for the Jellisons, so
they've had to pay more than $1,000 out of pocket for Raymond's
appointments.
``At this point, we really don't mind doing the extra work to pay for
this,'' Cam Jellison said. ``It's worth it.''
Diagnosis difficult
As the Jellisons have learned all too well, diagnosing autism and
related disorders can be difficult. No two children with autism are
exactly alike, and other disorders can mimic some autistic tendencies.
With an autistic child, speech might be absent or delayed. Words
might be used repetitively -- sometimes without their usual meaning.
Ritualistic mannerisms, such as rocking, spinning or finger-flicking,
are common. Pretend or symbolic play is often absent. Frequently,
there's little awareness of other people or of their feelings.
For unknown reasons, the majority of children with autism are male.
An estimated 60 percent to 70 percent of those with autism suffer
from some degree of mental retardation, a factor that can complicate the
diagnosis.
Only about 10 percent are savants, meaning they show incredible skill
in areas like music, calculation or memory -- the image of autism
popularized by Dustin Hoffman's character in the movie Rain Man.
Of the 50 or so children who have been referred to the Autism Center,
fewer than half actually had autism or a related disorder, Duby said.
Others had language disorders, genetic disorders or other developmental
problems. Two children had developmental problems caused by neglect.
``I think the surprising thing is the percentage of folks coming in
for something else,'' the Blick Clinic's LaForme said. ``And that may
account, in some respect, for what some people perceive as the increase
of autism.''
At least two hospitals in Cleveland, the Cleveland Clinic Children's
Hospital for Rehabilitation and Rainbow Babies and Children's Hospital,
also offer autism services.
More work needed
But advocates say even more needs to be done to help these
mysterious, disconnected children and their families.
``The hope is we're going to be able to develop closer relationships
with the educational programs that are serving these families and
kids,'' Duby said.
Indeed, a diagnosis is just the first step, said Dr. Max Wiznitzer, a
pediatric neurologist and head of the autism center at Rainbow Babies
and Children's Hospital.
``We have to look at the bigger picture, which is making sure there's
good, coordinated intervention for this population,'' Wiznitzer said.
Steps slowly are being taken to reach that goal.
The Ohio Department of Education's Office of Exceptional Children,
for example, is using $1 million in federal money to fund 26 projects
statewide aimed at identifying, evaluating and supporting successful
programs for autistic children.
The nine-month grant, which started in December, includes coverage of
projects headed by four school districts in the Akron-Canton area:
Buckeye Local, Cuyahoga Falls, Louisville and Revere Local.
``You go through an evaluation for a few hours in some center,''
Wiznitzer said, ``but the number of hours you spend in school in one
week eclipses the amount of time you spend in the center. That's what's
going to have the greatest impact.''