To ensure that African American and Latino children with autism spectrum disorders get the care they need, researchers at the Southern California Clinical and Translational Sciences Institute (SC CTSI) and Children’s Hospital Los Angeles have proposed the creation of teams of specially trained community advisors to help families obtain proper screening and timely access to needed services.
Although studies show no difference in the rate of autism spectrum disorders according to ethnicity, African American and Latino children are typically diagnosed six to eight months later than white children. These months can make a big difference, explained Michele Kipke, PhD, professor of pediatrics and preventive medicine at the Keck School of Medicine and SC CTSI co-director and director of the Community Engagement program.
Children diagnosed before age 3, for example, are eligible for certain publicly-funded early intervention programs shown to provide children with autism increased opportunities and better outcomes. After age 3, those programs are not available.
Through focus group studies, researchers developed a clearer picture of the experience Latino and African American parents have when they asked doctors about children’s unusual behavior or development.
Principal investigator Katrina Kubicek, PhD, assistant director of the SC CTSI Community Engagement program, said, “More often than not, doctors told parents not to worry, that the child would be fine in a year or two, rather than referring the child to a developmental specialist for evaluation. That led to missed and delayed diagnoses for some families.”
Investigators recommended the development of teams of community-based lay health care workers, called promotoras, who would help parents advocate for their children. The promotora model has already proved successful in Latino communities in California, where they have raised awareness about heart health and provided other assistance.
“Use of promotoras is one of the strategies we are exploring to help equip parents with information and tools they need to access services for their children,” Kipke said.
— Paul Karon