Parental Action and Referral Patterns in Spatial Clusters of Childhood Autism Spectrum Disorder

Abstract

Sociodemographic factors have long been associated with disparities in autism spectrum disorder (ASD) diagnosis. Studies that identified spatial clustering of cases have suggested the importance of information about ASD moving through social networks of parents. Yet there is no direct evidence of this mechanism. This study explores the help-seeking behaviors and referral pathways of parents of diagnosed children in Costa Rica, one of two countries in which spatial clusters of cases have been identified. We interviewed the parents of 54 diagnosed children and focused on social network connections that influenced parents’ help seeking and referral pathways that led to assessment. Spatial clusters of cases appear to be a result of seeking private rather than public care, and private clinics are more likely to refer cases to the diagnosing hospital. The referring clinic rather than information spread appears to explain the disparities.