Validating Measures and Unpacking Differences in Service Use for Diverse Children with Autism

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PROJECT SUMMARY Families of children with limited English proficiency (LEP) have been systematically excluded from autism spectrum disorder (ASD) research, yet they likely experience greater barriers to care. As a result, little is known about what factors are associated with these disparities, and how they differ across populations and settings. Because of this lack of data, developing data-driven strategies to address disparities for children with ASD and LEP can be a challenge. Thus, we propose to address this critical gap by conducting a sequential mixed methods study to understand what patient, provider, and structural factors are associated with disparities in care for families with LEP. First, in collaboration with a team of experts in LEP survey research, we propose the largest ever diverse, multi-lingual national survey (n=2730) of families of underserved children with ASD to both validate measures (e.g., parent stress, stigma, discrimination) in five languages (Spanish, Haitian-Creole, Vietnamese, Mandarin, English) and use those measures to understand disparities in care between and across populations. The survey will be embedded within the Autism Cares Network (ACN), a national network of 20 large, geographically diverse hospital systems focused on improving care for ASD. We will then use qualitative interviews to better understand survey findings. Finally, based on best practices from the field of implementation science, we will use rigorous consensus methods to place findings in context and make recommendations for data and measure use, as well as policy decisions. Our results will impact the field by validating measures to be used in future studies of ASD interventions – from treatment trials to policy initiatives – as well as by producing data to be used as future intervention targets in disparities reduction efforts. Our aims align directly with the NIMH’s Strategic Plan to reduce disparities in treatment of ASD.