A new method for autism spectrum disorder screening in children of Latinx families, developed by Georgetown University Medical Center autism specialists, was presented at the International Meeting for Autism Research in San Francisco from May 10 to 13.
The new screening method includes conducting interviews with families of children who may have autism to determine if further testing was warranted, as opposed to the standard method of requiring parents to fill out a questionnaire asking them to describe their child’s behavior.
Many parents, especially those in Latinx and immigrant communities, found the questionnaires problematic, according to Deputy Director of GUMC Center for Child and Human Development Bruno Anthony, who led the research team.
“What we learned very clearly through the parents was that they did not like filling out forms,” Anthony said. “Sometimes they were hard to understand, there were literacy issues, there was concerns about where those forms would go and trust issues. What they really preferred was having a face-to-face discussion and having somebody talk them through the forms so that they could understand them.”
Rather than asking parents to fill out forms, Anthony’s team encouraged doctors to meet with parents and their children to conduct interviews to determine if the children needed to undergo further testing for autism. Doctors were reluctant at first, believing the interviews would take too long, according to Anthony. To quell these concerns, the team offered “family navigators” in lieu of doctors to conduct the interviews.
“We started the process by having family navigators who were bicultural, bilingual people from the community who actually had kids who had some kind of developmental problem, which they had sought services for in the past. So they were very knowledgeable, and they were able to link and engage very well with the Latino families,” Anthony said.
As the 18-month study progressed, doctors at the hospital gradually took over the interviewing duties, having discovered that the interviews were reasonably short.
Since the study was completed at Unity Health Care Upper Cardozo Health Center in 2014, the Washington, D.C. hospital fully implemented the new model for testing for autism. Anthony believes that similar methods have the potential to work at health care facilities across the nation, but only if they are carefully implemented and the surrounding community is considered.
“Each place that wants to do it has to go through the same process that we went through — talking with families, thinking about their staff needs, thinking about the things that would get in the way, the things that would facilitate, and see how this kind of method would work,” Anthony said. “I think it can, but it has to be done in a way that makes sense to the site and the community around it.”
Though important, screening is only the first step for children at risk of autism, according to Anthony. He said it is important that families follow up with further testing and early prevention measures if necessary.
“The important thing is what happens when there’s concerns raised about the outcome. So if the form suggests that the child might be at risk, then there has to be the next step, which is the most important in getting the family to agree to go to the next stage of assessment, which is more intense,” Anthony said. “Screening is only the first step.”