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.”
…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.”
Now, Jellison, who lives in Stow, Ohio, 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.
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.
…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.”
…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 such as 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…
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.
…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.”