Learning

April 29, 2015

UW autism center marks 15 years of research and service

Annette Estes, left, plays with 2-year-old Caellum Ortiz at the UW Autism Center.Kathryn Sauber

When the University of Washington Autism Center opened its doors in 2000, the notion that the disorder could be detected in preschool-aged children was controversial.

“We were diagnosing kids between 3 and 4 years of age,” recalled Steve Dager, a UW professor of radiology and the center’s former interim director. “People were still skeptical that you could diagnose autism that early.”

Much has changed since then. Researchers can now diagnose autism in some children before 12 months. Autism’s prevalence has skyrocketed from one in 600 people nationwide to one in 68. The UW center has expanded its programs and services, added a second location in Tacoma and grown from serving 50 people its first year to more than 500 annually.

As awareness has grown about autism’s long-term impacts, the center, which will celebrate its 15th anniversary with an open house April 30, has increasingly focused on providing a continuum of services from birth through adulthood. That’s something Director Annette Estes is proud of.

“We maybe don’t see the volume of people another center might serve, but we see each person for a long period of time and for much more integrated therapy,” she said. “We are working toward offering a life-span model, so that we have services that grow with the person.”

Those services start with comprehensive evaluations of children as young as infants, since early intervention can make a tremendous difference in behavior and skills. Treatment ranges from intensive behavioral intervention to individual counseling, social skills instruction, in-home sessions, speech and language therapy and sleep clinics.

The center offers evidence-based training for parents, educators and health professionals on behavioral strategies, classroom tactics, diagnostic tools and other topics. For children, there are five-week summer camps to help build social skills and self-esteem in a fun, low-key environment alongside siblings and peers. Enrollment has almost tripled since the camps started in 2006.

“We always fill them,” Estes said. “There’s a huge demand.”

‘It’s been amazing’

On a recent weekday afternoon, Estes sat on the floor playing with 2-year-old Caellum Ortiz while his mother, Zoe Ortiz, looked on. The little boy pressed the buttons on a brightly colored popup toy, smiling as various Disney characters appeared.

“Who’s that? That’s Donald Duck!” Estes said.

“Mickey my favorite,” Caellum said.

The Ortiz family has two other children, a son and a daughter, and all three have varying forms of autism spectrum disorder, characterized by delays in social interaction and communication, and restricted, repetitive behaviors and interests.

Caellum is participating in an early-intervention study that also provides in-home behavioral therapy and parent coaching. Ortiz said the visits have been invaluable for the family, including Caellum’s two older siblings, ages 3 and 5.

“It’s been amazing,” she said. “They’re working with Caellum but they also work on his social interactions with his siblings, because that’s a huge deal. It’s helping all three of them.”

Center staff are also helping Ortiz navigate the sometimes overwhelming challenges of raising three children with autism.

“They’ve been really supportive in listening to me and talking me through the issues we’ve had,” she said. “I’ve learned a lot from them.”

Providing training to parents helps them become advocates for their children throughout their lives, Estes said, a critical skill for navigating a disjointed health care system.

“Finding the right services can be a challenge,” she said. “Parents are constantly having to learn and adapt to new systems, depending on the age of their child.”

Pioneering research

The UW Autism Center was launched with a $5 million endowment from Microsoft executive Richard Fade and wife, Susan, and a matching $5 million gift from an anonymous donor.

From the start, said Founding Director Geraldine Dawson, the center has focused on developing early interventions and training community professionals to build treatment capacity. It also emphasizes a holistic approach that looks not just at the behavioral aspects of autism but also the medical conditions associated with it, such as sleep problems and gastrointestinal disorders.

“What we’ve learned is that by addressing those issues, we can greatly improve the outcomes for people with autism,” said Dawson, now the director of the Duke Center for Autism and Brain Development at Duke University.

A primary research focus at the UW center has been brain-imaging of infants to identify functional and structural changes that might indicate autism. The center launched one of the first longitudinal studies looking at how brain changes in children with autism evolve and correspond to behavioral symptoms of the disorder. Among its findings are that children with autism have developmental patterns of brain chemistry changes that are different from other children.

The center has also carried out four coordinated research efforts over the past 15 years that enrolled children in various studies simultaneously, allowing researchers to collect a valuable cross-section of information on brain structure and chemistry, behavior and other autism indicators.

“It is very rare to have that continuity,” Estes said. “The data we’ve collected here is really a treasure.”

When the center started, Dawson said, around half of people with autism were expected never to speak or be minimally verbal. That figure has dropped to about 25 percent, she said, and through early intervention and innovative new treatments, is expected to further decrease.

“We’re getting so much more sophisticated at tailoring both the medical and the behavioral interventions to each individual person,” she said.

Researchers now know that autism is not one condition, but a group of complex brain disorders. Hundreds of genes linked to autism have been identified in recent years, and scientists are working to pinpoint genetic subtypes of autism associated with specific medical conditions that could lead to more personalized treatments.

With increased understanding about autism’s complexity is a growing awareness of patients’ long-term needs. There’s been a shift toward developing ways to help adolescents and young adults with autism find employment and live satisfying, meaningful lives, Dawson said. Microsoft’s announcement earlier this month that it is piloting a program to hire people with autism for full-time jobs at its headquarters is an encouraging sign, she said.

“I think it’s very much a reflection of our times,” she said. “We’re recognizing that people with autism have some very unique talents and gifts that can be extremely helpful in the work environment, and that they have something great to offer to society.”

Still, about half of people with autism remain severely impaired throughout their lives, Estes said, and an ongoing focus at the center will be on determining how appropriate interventions can help improve life for them.

“There are these wonderful stories of hope, but there’s also the reality for people with autism,” she said. “It’s something most people deal with their entire lives.”