Georgetown autism specialists working with Latino families in Washington, D.C., have developed an effective screening program that identifies Latino infants who may be at risk for autism spectrum disorder (ASD), allowing the opportunity for early intervention.
Pediatricians recommend that all children be screened for autism by age two. In the year before the study, few were screened for autism risk—less than 10 percent of Latino 18-30-month-olds received screening—and none were identified to be at risk for ASD. After incorporating the new screening model, more than 90 percent of the infants were screened during wellchild doctor visits. Four percent were identified to be at possible risk and referred for more specific ASD testing.
“This rate mirrors the rate of positive screens found in studies of U.S. Englishlanguage toddlers,” says the study’s senior investigator, Bruno Anthony, PhD, former deputy director for the Georgetown University Center for Child and Human Development, and professor of pediatrics and psychiatry. “It appears that our approach is effectively picking up children who might benefit from early intervention that can improve outcomes such as cognition, peer interactions, language development, and strategies to enhance families’ coping abilities,” explains Anthony.
The years-long, federally funded effort took a deep dive into Latino cultural norms in order to develop an ethnically sensitive screening methodology. The typical screening tool used in the U.S. to diagnose ASD risk is the M-CHAT (the Modified Checklist for Autism in Toddlers), a questionnaire for parents regarding their child’s behavior.
But the M-CHAT, even when translated into Spanish, is not often used with Latino parents, says Anthony.
“Our prework for this study found that the parents often did not understand the questions,” he says, noting that the questions can be ambiguous from a cultural perspective.
Anthony and his group adapted the M-CHAT by providing explanations of some questions, and adding oral administration by bilingual, bicultural family navigators who themselves had experience raising children diagnosed with developmental disorders. Over time, health care workers gradually took over the screening process from the family navigators.
“We found that Latino parents were often not comfortable talking about their child’s possible behavioral issues and developmental delays,” notes Anthony. “We had to work hard to give them the sense that these conversations are appropriate and safe in a medical setting.”
“The findings show that universal screening for ASDs and developmental delays in primary care can be effective if the program is responsive to community and provider needs that inform outreach, family engagement, training, and clinical procedures,” he adds.