Diagnosing autism in children early is critical to how their lives unfold, yet it rarely happens.
Most children are 4 years old before the neurological disorder is identified, according to the federal Centers for Disease Control and Prevention. Yet, a diagnosis can be made as early as 18 months.
A University of Washington project in four counties including Spokane is aimed at finding children earlier and making sure they receive specialized treatment that will help them with developmental and behavioral problems right away and throughout their lives.
“We don’t want to wait. We are losing a lot of valuable time,” said lead researcher Wendy Stone, a UW professor of psychology. “There’s a great disparity in which children are being diagnosed. For individuals from underserved or minority populations, the delays are even more significant.”
An estimated 1 in 68 children nationwide has been identified as being autistic to some degree. Characteristics of the disorder are delays in social interaction and communication, and restricted, repetitive behaviors and interests.
Autism is five times more common in boys than girls, studies show. If a mother has one child with autism, there’s a high probability she’ll have a second, said Dana Stevens, clinical director of the Northwest Autism Center.
UW’s five-year, $3.9 million study is being overseen by its Research in Early Autism Detection and Intervention Lab and will begin early this spring. The university is working with partners in four counties to coordinate screening by primary care physicians and early intervention programs.
UW’s project is one of 12 funded by the National Institute of Mental Health nationwide.
“The national health care system’s approach to managing those children isn’t working,” Stone said. “We’re stuck with this model where a child needs to get a diagnosis before she or he can get specialized services, but there are such long waiting lists for a diagnosis that kids age out of the birth-to-3 system, which results in a lost opportunity.”
A UW spokeswoman said participating doctor’s offices in Spokane will be provided with computer tablets preloaded with screening questions for autism in toddlers. Parents who are taking their kids for their 18-month checkups will answer questions about specific behaviors and situations – for example, whether the child is upset by everyday noises, fails to interact, does not follow verbal directions and is not interested in playing with other children.
If a child screens positive, they’ll be referred to intervention services. One such provider in Spokane County is Northwest Autism Center, which has already agreed to participate in UW’s project.
Project leaders hope to catch more children at risk for autism through this process, even before an official diagnosis is made.
“One of the great things about the project is we can start some of the intervention sooner,” Stevens said.
There, clinicians work individually with autistic children ages 2 to 5 for 48 days. The center is booked until fall.
Stevens is also helping UW line up Spokane County doctors who will take part in the project.
“There’s no cure. There’s no blood test, and that’s why physicians need to learn to screen because it’s behaviors,” Stevens said. “We want doctors to screen as much as possible so we can intervene.”
Interventions can be as simple as an adult showing a child a slightly different way of playing with a toy, and encouraging the child to mimic it.
“It can really empower parents,” Stone said. “It builds interactions, and the parents feel so much more connected with the kids.”
The project includes training workshops for participating doctors and service providers, multiple checklists and the distribution of materials to parents. Stone realizes the effort places a lot of demands on providers, but the difference it can make in the lives of toddlers with autism could be life-changing.
“This project has important implications for health care for these kids,” Stone said.