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

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.

Grant Number: 4RF1MH128275-04
NIH Institute/Center: NIH
Principal Investigator: Sarabeth Broder-Fingert