Early detection can make a world of difference for toddlers with autism, but many children do not get diagnosed until they鈥檙e at least 4 years old.
As a result, they often don鈥檛 get specialized services during the critical period up to age 3 that can greatly improve their skills and behavior.
A new project at the 91探花 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 (READi) Lab and will begin early this spring.
The project is being implemented in four Washington counties 鈥� Skagit, Lewis, Spokane and Yakima 鈥� 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鈥檚 office for their child鈥檚 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 鈥� 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 , a 91探花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鈥檚 approach to managing those children isn鈥檛 working.
鈥淲e鈥檙e 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,鈥� said Stone.
An estimated one in 68 children is currently 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.
鈥淚t鈥檚 very stressful,鈥� she said. 鈥淚magine you鈥檙e worried about your child having autism and how they鈥檙e interacting with you, and you can鈥檛 get an answer about what鈥檚 going on. It鈥檚 a period of uncertainty and frustration.鈥�
Even when children are finally diagnosed, it can be difficult to find an early intervention provider with expertise in autism. Generic interventions don鈥檛 necessarily address the specific challenges of children with autism.
鈥淚f you don鈥檛 attend to the social deficit issues, they can get worse,鈥� said , the project鈥檚 manager and a 91探花research scientist. 鈥淚t鈥檚 important to act on the early signs and symptoms of autism.鈥�
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鈥檛 happen, Stone said, since pediatricians are often pressed for time.
To streamline the process, the UW鈥檚 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 . 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鈥檚 actions with toys. The adult then models a slightly different action and encourages the child to mimic it. It鈥檚 a fun approach that early-intervention providers can use and coach parents to do the same with their own children. The intervention has been to improve social and language skills, and provides a tangible way parents can help.
鈥淚t can really empower parents,鈥� Stone said. 鈥淚t builds interactions, and the parents feel so much more connected with the kids.鈥�
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 last September.
The 91探花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鈥檚 much at stake for toddlers with autism, she points out.
鈥淭his project has important implications for health care for these kids,鈥� she said. 鈥淎utism just doesn鈥檛 fit that medical model where you get a diagnosis and there鈥檚 treatment for it. Because often, you can鈥檛 get to the diagnosis part.鈥�