The Road to Diagnosis: Perceptions, Concerns, and Experiences of Racial and Ethnic Minority Parents of Children with Autism Spectrum Disorders

Background: Parents play a major role on the path to diagnosis of their children with Autism Spectrum Disorders (ASDs). Despite the current federal and state level efforts to reduce disparities in healthcare access and utilization, racial disparities still remain. Research has shown that White children are diagnosed earlier than minority children and minority children may express ASD symptomology differently than their White counterparts. Thus, it is imperative to better understand the pathways to diagnosis for racial and ethnic minority families to ensure that their children receive the aid they need and to reduce the aforementioned racial disparities in mental healthcare service utilization.

Objectives: The purpose of this study is to explore ethnic and racial minority families’ journeys to diagnosis for their child with ASD. Specifically, we aim to find out if race predicts diagnostic seeking behaviors, perceptions of the condition, and perceptions of the quality of diagnostic services the child receives.

Methods: Using data from the 2011 Survey of Pathway to Diagnosis and Services (“Pathway”) (N=1725; White= 1368, Minority=347), we conducted bivariate and multivariate logistic regression to examine the difference between minority and White children with ASD in accessing and utilizing mental healthcare services. “Pathway” is a nationally representative survey of children ages 6-17 years who were identified by the 2009/10 National Survey of Children with Special Health Care Needs (NS-CSHCN). The data set takes a close look at current and past use of clinical treatment, intervention, and healthcare services.

Results: We found a statistically significant difference on parental concern and perception of the child's condition based on race. White parents presented with more medical concerns, verbal and nonverbal communication concerns, and learning ability concerns than minority parents. No statistical difference was found related to parental concern about the behavioral, social, and sensorial difficulties of the child, parental perceptions of the child’s condition, and parental perception of diagnostic services that their child received, between White and minority parents. However, the analysis yielded a significant relationship between parents' and healthcare practitioners' behavior and delay on diagnosis among minority children.

Conclusions: The result of this study indicated that healthcare providers' and parents’ behavior may contribute to diagnostic delay of minority children with ASD. There is a need to develop policy, multi-culturally competent practice, and family level strategies to reduce barriers to diagnostic services for minority children with ASD.