Liz McCully’s son, Ethan, was never a big talker. At his 18-month checkup, her pediatrician said Ethan should have about a 20-word vocabulary within a couple months. But he only had one — “Kitty,” for a cute, plush cat McCully bought him at the zoo. Her pediatrician referred her to the Autism Center at Seattle Children’s Hospital for a diagnostic evaluation.
McCully contacted Children’s in August 2013. Within a couple weeks, someone called back and left a message: Ethan would be placed on a waitlist, and McCully would get a call to schedule an appointment when he was closer to the top. It said she could expect to wait 12 months.
Ethan finally received an official diagnosis of Autism Spectrum Disorder (ASD) this past January — nearly three years after McCully first noticed speech delays and almost a year and a half after she first called Children’s.
“It’s just hard because everything about autism is ‘early intervention, early intervention,’ ” McCully said. “And then you just sit around and wait.”
With daunting waitlists, limited autism specialists and pediatricians who don’t always perform autism-specific screenings, parents can wait years for an official diagnosis, and research shows minority groups wait even longer. Meanwhile, kids can miss out on specialized services during the most critical developmental years of their lives.
A new research project at the University of Washington (UW) aims to close the gap between when parents first notice signs of ASD and when their kids get intervention. The idea is simple: Make it easy for providers to screen for autism risk and start treatment right away, even before a diagnosis.
“Just the concept of starting intervention before the child gets a formal diagnosis — that’s quite innovative,” said Wendy Stone, director of the UW Research in Early Autism Detection and Intervention Lab. “That goes against what’s been done. For autism, it just takes too long, and we can’t let these kids lose out on getting services during the time they’re waiting it out.”
The five-year, $3.9 million project is funded by the National Institute of Mental Health and will involve gathering data and implementing a new ASD screening and service delivery model in Skagit, Lewis, Spokane and Yakima counties.
Problems and solutions
It is widely accepted that intervening with specialized therapies and services before age 3 is critical for kids with ASD, which causes a range of social, communication and behavioral challenges.
“What we know is that the earlier we are able to start it, the better the outcomes for the child,” said Lisa Ibanez, project manager and UW research scientist. “There’s a lot of brain development and brain plasticity where intervention can yield greater benefits.”
There’s more than one reason to access services early in life: After 3, children are no longer eligible for a federally-mandated program called Birth to Three, which provides early intervention services for kids with developmental challenges. By the time McCully’s son was diagnosed, he was 4.
If more kids are screened earlier for signs of ASD, researchers say, more parents might be able to take advantage of Birth to Three before the opportunity is lost.
The American Academy of Pediatrics recommends that all children get screened for autism at 18 months. But Ibanez said that doesn’t always happen, and even when pediatricians do screen, they are often too rushed to ask the necessary follow-up questions or don’t have the expertise to identify non-textbook signs.
UW’s project will streamline the process. Pediatricians who participate will screen all children 18-months-old using an electronic tablet that automatically takes parents through a series of questions, scores the responses and triggers the necessary follow-up questions. It can all be done in the waiting room.
Meanwhile, participating Birth to Three providers will be trained on a more in-depth, interactive screening as well as parent interviews. They can receive live consultation from licensed psychologists via telecommunication during the assessment.
Birth to Three providers will also learn Reciprocal Imitation Training (RIT), an intervention designed to teach children with ASD to imitate during play. Though providers often refer parents to interventions like speech therapy, they don’t always know ASD-specialized services like RIT that target core autism behaviors in a holistic way.
Stone said RIT can be a turning point for parents who have had trouble developing relationships or interacting with their children.
“There comes a point when a child all of a sudden sees that this person is imitating them, and it’s like a lightbulb,” she said. “Parents feel it, and it just feels different, like they are more connected than they have been. It’s the most amazing thing.”
The overall model is called Screen--Refer-Treat: Toddlers go from the tablet screening with pediatricians to the second-level screening with Birth to Three providers, then straight to fun, easy intervention that parents can learn while waiting for a formal diagnosis.
“That’s the really exciting part,” Ibanez said. “If the child is deemed to be at risk, intervention can start immediately.”
Who gets diagnosed?
Yakima County was specifically chosen for the project because its population is nearly 50 percent Hispanic.
Several studies have shown children of color get diagnosed later, less often and receive fewer services than white children.
“We know that more than likely, they are being under-identified,” Ibanez said.
Latino children get diagnosed more than two years later than white children and are 50 percent less likely to be identified at all, according to the Centers for Disease Control and Prevention.
It is unclear why the disparity exists. Researchers point to the overall disparity in access to medical services, as well as cultural and linguistic
barriers between pediatricians and families.
A study by Katharine Zuckerman, a pediatrics professor at Oregon Health and Science University, found that only 10 percent of pediatricians administered screenings in Spanish. For this project, Stone and Ibanez said they hope to gather information that might shed more light on the disparity. Screenings will be available in Spanish.
“We are trying to recruit all different types of families from all backgrounds and socioeconomic statuses,” Ibanez said, “but we did want to have at least one county where we knew we would have a large Hispanic population.”
There’s a lot to be done before tablets are in hand and training begins, including one to two years of data-gathering and interviews with providers, interventionists and families in the participating counties. Still, Ibanez and Stone are eager: Ibanez said she is excited to get out of the lab and into the community, and Stone sees it as a chance to practice what she’s been preaching when it comes to early intervention.
“This is a chance to try out a health care delivery model that we’ve been talking about for a long time,” she said.
Today, Ethan is prospering at a Montessori school in Wallingford. He has his diagnosis, but the waitlists continue as McCully works to get him into various social skills groups and ASD-specialized therapies.
“I know it’s really important that we do stuff early,” McCully said, “but you can’t get into any of the places to do the stuff early. It would’ve been really wonderful if everything could have happened quicker.”