Early detection can make a world of difference for toddlers with autism, but many children do not get diagnosed until they're at least 4 years old.
As a result, they often don't get specialized services during the critical period up to age 3 that can greatly improve their skills and behavior.
A new project at the University of Washington aims to address that delay and ensure that children with autism are identified and helped early enough to prevent problems later on. The five-year, $3.9 million initiative is being carried out by the UW's Research in Early Autism Detection and Intervention (READi) Lab and will begin early this spring.
The project is being implemented in four Washington counties -- Skagit, Lewis, Spokane and Yakima -- with high numbers of Latino children, who tend to get diagnosed with autism later than others. The initiative is expected to result in earlier, autism-specialized treatment for families statewide.
Parents arriving at a doctor's office for their child's 18-month checkup will get tablets loaded with a set of screening questions for autism in toddlers. The questions ask about specific behaviors and situations -- for example, whether the child gets upset by everyday noises, plays make-believe and is interested in other children.
Project leaders hope to catch many more children at risk for autism even before a formal diagnosis is made. Lead researcher Wendy Stone, a UW professor of psychology, said while Washington has been a leader in developing innovative programs for identifying children with special needs, the national health care system's approach to managing those children isn't working.
"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," said Stone.
An estimated one in 68 children is currently diagnosed with autism spectrum disorder, characterized by delays in social interaction and communication, and restricted, repetitive behaviors and interests. The American Academy of Pediatrics recommends all children be screened for autism at 18 months.
But not all pediatricians follow that practice, Stone said, leaving many children undiagnosed for months or years while parents grasp for answers.
"It's very stressful," she said. "Imagine you're worried about your child having autism and how they're interacting with you, and you can't get an answer about what's going on. It's a period of uncertainty and frustration."
Even when children are finally diagnosed, it can be difficult to find an early intervention provider with expertise in autism. Generic interventions don't necessarily address the specific challenges of children with autism.
"If you don't attend to the social deficit issues, they can get worse," said Lisa Ibañez, the project's manager and a UW research scientist. "It's important to act on the early signs and symptoms of autism."
The standard screening process involves a checklist with 20 questions that parents can answer. If a child screens positive, the physician is expected to ask a series of follow-up questions. But that often doesn't happen, Stone said, since pediatricians are often pressed for time.
To streamline the process, the UW's Institute of Translational Health Sciences is developing a Web-based version of the screening that incorporates the follow-up questions. Toddlers who screen positive will be quickly referred to local early intervention programs, where they will receive additional screening. An off-site psychologist will work with those programs through telemedicine technology to provide guidance and interpret screening results.
The project is also promoting the use of a simple play-based intervention that begins with imitating a child's actions with toys. The adult then models a slightly different action and encourages the child to mimic it. It's a fun approach that early-intervention providers can use and coach parents to do the same with their own children. The intervention has been shown to improve social and language skills, and provides a tangible way parents can help.
"It can really empower parents," Stone said. "It builds interactions, and the parents feel so much more connected with the kids."
The project is one of 12 being funded by the National Institute of Mental Health to create innovative service delivery models for children, youth and adults with autism spectrum disorder. The grants were announced last September.
The UW initiative will require physicians and service providers to attend a training workshop, distribute recruitment materials to parents and complete numerous checklists. Stone acknowledges that the effort asks a great deal of participants. But there's much at stake for toddlers with autism, she points out.
"This project has important implications for health care for these kids," she said. "Autism just doesn't fit that medical model where you get a diagnosis and there's treatment for it. Because often, you can't get to the diagnosis part."
For more information, contact Stone at firstname.lastname@example.org or 206-685-2821.