Missing well-child visits leads to delayed autism diagnoses

In the days and months after a baby is born come a flurry of checkups. But after the first year of life, attendance at well-child visits often drops off.

That's a problem for children with autism spectrum disorder, whose delayed diagnoses can pose cognitive, educational and social disadvantages, a new analysis by University of Virginia School of Nursing professor Pam DeGuzman and colleagues finds.

"Lots of parents may not understand these visits' value, once childhood vaccinations are complete," said DeGuzman, whose study appears in the Journal of Pediatrics, "but research has firmly established that kids who are diagnosed early with autism fare far better down the line the sooner interventions are made available to them."

DeGuzman studied 253 children diagnosed with autism born in Virginia in 2011, their attendance at routine well-child visits, and the average age at which they received their diagnosis and, consequently, behavioral interventions. On average, children ultimately diagnosed with autism spectrum disorder attended fewer than half of doctor's visits during early childhood. Just one-fifth attended their 30-month well-child visit, and children who missed the 24-month, 30-month and three-year visits, were diagnosed with autism spectrum disorder on average more than nine months after than those who didn't miss these key appointments.

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.

Although autism can be reliably diagnosed in children as early as ages one or two, 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 two- to four-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."