Study: Missing Well-Child Visits Leads to Delayed Autism Diagnoses

DeGuzman also found that those with Medicaid insurance missed more appointments and faced longer delays in autism diagnoses than children with private insurance. DeGuzman’s co-authors include UVA’s Micah Mazurek, the Novartis U.S. Foundation Professor in the School of Education and Human Development; Genevieve Lyons, a public health statistician in the School of Medicine; and Jessica Keim-Malpass, an associate professor of nursing.

Well-child visits during early childhood – recommended by the American Academy of Pediatrics at 12-, 15-, 18-, 24-, 30- and 36-month intervals, and annually thereafter – offer multiple opportunities for health care providers to screen children for autism spectrum disorder and other developmental disorders. Research has established that earlier autism diagnoses and the subsequent interventions they catalyze – such as building language skills, facilitating social interactions and teaching daily living skills, like tooth brushing and getting dressed – improve children’s cognitive, social and behavioral trajectories.

From left: Pam DeGuzman, Micah Mazurek, Genevieve Lyons and Jessica Keim-Malpass. (DeGuzman and Mazurek photos by Dan Addison, University Communications; others contributed)

Although autism can be reliably diagnosed in children as early as ages 1 or 2, American children are, on average, 51 months (4.25 years) old by the time they are diagnosed. Many with more subtle symptoms are diagnosed much older. While health care providers screen children whose parents suspect cognitive or social delays, they also do routine autism screenings at the 18- and 24-month visits, too. That’s the point at which autistic children typically have detectible symptoms, according to Mazurek, who called the moment pivotal, and “a sweet spot in early development that provides a nice opportunity for interventions that make a difference.”

“The longer we wait to diagnose autism,” explained Mazurek, a clinical psychologist and director of UVA’s Supporting Transformative Autism Research Initiative, “the more we’re missing out on that developmental window to provide interventions.”

DeGuzman’s study affirms the importance of promoting attendance at all recommended well-child visits to ensure that autism spectrum disorder screenings take place and emphasizes the importance of visits during the critical 2- to 4-year-old time frame. And while COVID-19 has affected how and whether families seek routine care, promising tactics – including evening and weekend office hours, home visits, group visits and “Reach Out and Read” programs – are making headway.

“A lot of the work we’ve been doing is related to supporting primary care providers to recognize the signs and symptoms of autism,” Mazurek said, “but if children aren’t even making it into the clinic, their needs may not be identified as early as possible and they may be missing opportunities for really valuable early interventions at a time when they can benefit most from them.”