Barriers to an Information Effect on Diagnostic Disparities of Autism Spectrum Disorder in Young Children

Background:
Autism spectrum disorder (ASD) is underdiagnosed in children from minority and low socioeconomic status families, and various reports allege that parental “lack of awareness” of symptoms is a factor. If these reports are true, then the implication is that simply exposing parents to information about ASD may alleviate diagnostic disparities as the use of the category increases around the world. Yet in the first sample of parents of young children with ASD living within spatial clusters of low severity cases—the very cases that may be explained by an information effect—exposure to information had little effect on diagnostic disparities.

Objectives:
The objective of the present research was to explore factors that inhibit an information effect among parents of symptomatic children who are exposed to information and/or other cases of ASD.

Methods:
Interviews were conducted with the parents of 54 children with ASD in Costa Rica, including many cases within spatial clusters that appeared after a genetic study conducted an information campaign for case recruitment. The interviews focused on factors influencing parents’ symptom recognition and help-seeking behaviors, including clinical encounters prior to diagnosis and contact with parents of children with neurodevelopmental disorders both before (incoming information) and after diagnosis (outgoing information). Parents were recruited at the diagnosing hospital either at the time of diagnosis or during follow-up appointments, and interviews were conducted by two authors who both took detailed notes and resolved differences immediately afterwards. The analysis was influenced by grounded theory and ethnomethodology, with the aim of providing “thick description” of any role of information on parents’ help-seeking behaviors.

Results:
Information about ASD failed to spur parents to pursue a diagnosis for their symptomatic children, in part because early symptoms in their children gave parents no reason to suspect ASD. As their children aged beyond 2-3 years and developed additional symptoms, parents’ understanding of ASD became relevant, but it depended on unique, idiosyncratic features of other children’s behaviors that were not often present in their own children. Parents often received unsolicited advice from strangers, although rarely from family, and it was always seen as critical of their parenting; furthermore, the advice was too late to influence the referral process, which was well underway by the time classical symptoms of ASD appeared, if they did at all. Post-diagnosis, the interviewees occasionally gave advice to other parents, mostly strangers, but none had apparently been diagnosed.

Conclusions:
These results challenge narratives about the role of information in the context of an increasing international prevalence of ASD diagnosis. In spite of efforts to disseminate ASD information through a population with low levels of ASD knowledge, there are significant barriers to an information effect on parents’ health behaviors, including the symptomatology of ASD. To reduce diagnostic disparities as ASD continues to be adopted globally, efforts to educate parents should focus on the heterogeneity of symptoms, as well as generic developmental delays that can indicate neurodevelopmental disorders in general.