Speaking the language of autism

A UCI Health center for neurodevelopmental disorders works to make life better for families coping with autism

At first glance, it’s an ordinary scene from many a childhood: A boy plays with a toy boat, loading and unloading small plastic balls. Yet there are subtle clues that something’s not right.

Akintunde Udo, 6, is so intent on his game that he ignores everyone else in the room, making no eye contact and seemingly oblivious to the conversation between his mother, Uduak Udo, and Teri Book, a nurse practitioner at the Center for Autism & Neurodevelopmental Disorders, which operates under the leadership of UCI Health School of Medicine.

Akintunde doesn’t look up when visitors enter the small office or even when a photographer crouches inches away, snapping his picture. It’s as though he’s separated by an invisible wall, and that wall is autism.

“Some people don’t think he has autism because he’s really intelligent and extremely well-behaved,” Book says. “But in the past few minutes, he’s shown several of the signs. If he were a typical boy, he’d be looking at you or me, because we’re socialized to look at people talking around us. He didn’t respond to a direct question. And he’s doing something over and over.”

Udo has come from her Huntington Beach home to the center in Orange to better understand the disorder and learn how to cope with her child’s symptoms. For more than 10 years, the clinic — formerly called For OC Kids — has offered medical evaluations, diagnostic testing, and the kind of education and social support that have become Udo’s lifeline.

Grant to fund expansion and research

Now the center is growing in size and services, thanks to $14.8 million in funding from the William & Nancy Thompson Family Foundation and the Children & Families Commission of Orange County. It’s transitioning into a nationally recognized evaluation, treatment and research facility that helps those with autism, ADHD, Down syndrome and other neurodevelopmental disorders.

“We’ve always hoped to do more, but until the Thompson gift and commission’s matching investment, we’ve been limited by funding,” says Dr. Joseph Donnelly, a pediatric neurologist who directs the center. “It’s our opportunity to transform from a clinic to a center that cares for the whole child.”

The center will move to a larger (still undetermined) location this fall. Services such as behavioral intervention, psychological testing and counseling, speech/language therapy and occupational therapy will be added for children, adolescents and young adults  through age 22, he says. Previously, the cutoff was 6 — Akintunde’s age.

“This allows us to follow patients over time and make sure they’re making progress,” Donnelly says.

For Udo, that continued support is vital.

“This is the best place ever,” she says. “Teri understands the emotional roller coaster we’re on. I can call her up crying, and she gives me a clear perspective.”

Udo has brought Akintunde here every few months since the center diagnosed him at age 3.

“His pediatrician noticed that his speech wasn’t as developed as it should be,” she recalls. “He wouldn’t look at me, and he had terrible night terrors. I just thought he needed more love. That started our journey with autism.”

Coping tools 

Udo makes careful notes in a journal while Book coaches her on handling meltdowns, demands and other challenging behaviors.

“If they scream that they want a cookie, don’t give in,” she counsels. “That makes it worse, because they’ll do it every time they want something.”

Book knows firsthand the pressures parents face. Her daughter has autism; today she’s a 21-year-old college graduate with a job.

“I have a really in-depth understanding of what parents are going through,” the nurse practitioner says.

“One of the most frustrating things is that kids with high-functioning autism like Akintunde are misunderstood. People don’t realize they have autism. But when these kids get to the edge of a cliff emotionally, they launch themselves. They scream and have temper tantrums.”

She once got a call from a distraught father whose child was throwing a fit in Starbucks, hollering, “He’s trying to kidnap me!” at the top of his lungs.

“You’ve never seen anything like it,” Book says. “When [children with autism] don’t know how to solve problems, they fall apart. It goes back to inflexible thinking.”

Symptoms vary widely

About one in 88 children in the United States has been identified as having an autism spectrum disorder, which can cause a wide range of social, communication and behavioral problems.

“Patients’ skills can vary from high-functioning to profoundly impaired and everything in between,” Donnelly says. “You can have a child with an IQ of 140 who plays the piano brilliantly and appears normal except for some social awkwardness, and you can have a child who doesn’t respond to his name, makes no eye contact, can’t speak, or who repeatedly spins in circles.”

Getting the diagnosis can be devastating to parents, even though they often suspect something’s wrong with their child long before teachers, relatives and others do.

“People say, ‘Oh, he’s a boy; he’ll grow out of it’ or ‘He’s so smart; he can’t have autism,’” Donnelly says. “We listen to parents and try to help. We get frantic calls from them saying their child was asked to leave preschool, or they’re afraid he’ll hurt another child, or he throws a tantrum every time they go to the store. They’ll say he’s not speaking, he won’t play with other children, or he doesn’t hug them.

“They may come to us when they’re desperate. Sometimes they’re overwhelmed emotionally and financially. Some have quit their jobs to help their child. And the stress on a marriage can be great. We support and educate families so they can survive and thrive, and help their child reach their often unknown potential.”

Center to triple in size

To better assist clients, the center’s staff is tripling in size. In addition to nurse practitioners such as Book, social workers, developmental pediatricians and neurologists there will be specialists in behavioral intervention, psychology, psychiatry, speech/language pathology, occupational therapy and even nutrition.

“In the past, we could provide medical treatment for epilepsy or ADHD, but we’ve never been able to provide other therapies,” Donnelly says. “We’re developing a true multidisciplinary team.”

They’re also enlisting UC Irvine experts in technology, the arts and other disciplines whose work benefits those with autism in new ways.

In addition, the center partners with the UCI Health School of Medicine’s Center for Autism Research & Treatment (CART) to develop new drug therapies. And, as part of its mission to serve as advocates, it’s working with Chapman University’s College of Educational Studies to strengthen the relationship between families coping with autism and their local school systems, which render the most intervention.

“We’re laying out a plan to use [the Thompson] investment most effectively,” Donnelly says. “We want to focus on areas where we can make a difference for individuals and families and serve those who have autism and other developmental disorders from the day of identification to adulthood.”

With support, he says, kids can succeed in school and contribute their unique abilities to society. Akintunde, for instance, has already told his mother he wants to be a heart doctor. Looking at her son as he turns his attention to another toy, Udo knows he’s smart enough that such dreams are possible.

— Kathryn Bold, University Communications