Understanding Barriers to Healthcare for Children with Autism Spectrum Disorder: A Preliminary Measure Validation Study
Autism spectrum disorder (ASD) is associated with a variety of physical, mental, and behavioral healthcare needs. However, parents of autistic children consistently report difficulty accessing necessary services, and no instrument has been validated to assess and quantify these barriers for autistic children. The current study aims to adapt and validate the Barriers to Care Questionnaire (BCQ), a pre-existing measure of barriers to healthcare for children with specific healthcare needs, for families of autistic children. The BCQ and theoretically related measures were collected from 242 parents (117 parents of autistic children, 125 parents of non-autistic children). Cronbach’s alpha statistics (ranging from 0.87 to 0.96 for BCQ subscales) provide evidence of reliability for the BCQ. The BCQ subscales were correlated with unmet treatment need, treatment experiences, and theoretically related variables at the child, parent, and family level, providing evidence of convergent validity. Correlations were of low magnitude with theoretically unrelated variables (parent personality and socially desirable responding), suggesting preliminary evidence of discriminant validity. Additionally, the BCQ subscales predicted a significant amount of variance in unmet need and treatment experiences over and above other predictors for autistic youth, indicating incremental validity. Parents of autistic children reported significantly more barriers to care across all subscales of the BCQ than parents of non-autistic children, and the highest average item score was on the “skills” subscale, which measures difficulties with navigating the healthcare system. Results support that the BCQ can be used among autistic youth, and suggest the critical need for family-centered supports and provider education in order to ameliorate barriers to healthcare for autistic children.