Mothers’ Adjustment to Autism: Exploring the Roles of Autism Knowledge and Culture

Abstract

INTRODUCTION: Autism spectrum disorder (ASD) service-use disparities are well-documented among racial/ethnic minorities. Yet the nuanced impact that culture has on barriers to ASD service-use has not been sufficiently explored among these populations. This study explores the interrelatedness of culture and service-use barriers (i.e., parent ASD knowledge and adjustment) among culturally diverse mothers of children with ASD. METHODS: Twenty mothers from the Boston area participated in semi-structured qualitative interviews regarding their experiences with ASD. Applied thematic analysis was used to analyze data stratified by ethnicity (Latina vs. non-Latina) and nativity (immigrant vs. U.S. born). RESULTS: All mothers had similar gains in ASD knowledge after their children's ASD diagnoses. Non-Latina mothers (immigrant and U.S. born) felt empowered by their gained ASD knowledge, while Latina mothers struggled to fully accept their child's diagnosis and were unable to apply their general ASD knowledge to better understand their child's ASD-related needs. Culturally based stigma against ASD, including rejection from the Latino community and internalized self-blame, appeared to drive Latina mothers' beliefs that ASD is an invalid diagnosis for their child. CONCLUSION: Latina mothers' desire for community acceptance in the context of ASD stigma was a particularly salient cultural value among Latina mothers in this sample. Findings suggest that parent-focused ASD education programs may not sufficiently address ASD service-use disparities for Latina mothers. Rather, ASD education programs that address informational and cultural needs may better promote ASD adjustment among ethnic minority families.