Parents taking action adapted to parents of Black autistic children: Pilot results

Abstract

AbstractThere is a dearth of culturally relevant, family‐centered programs for parents raising Black autistic children, despite significant racial disparities in autism diagnoses and service access. Using a mixed‐methods convergent study design, we report qualitative and quantitative findings from a pilot trial of a peer‐to‐peer program, Parents Taking Action (PTA), adapted to primary family caregivers of Black autistic children with or at increased likelihood for autism. We aimed to understand the feasibility of delivering PTA with fidelity to the manual; participants' acceptability of program strategies; and pre–post changes in child, parent, and family outcomes. Three peer mentors (“Parent Leaders”) delivered the 14‐session intervention to seven participants. All Parent Leaders and participants were mothers of Black autistic children. We interviewed participants and Parent Leaders regarding program content and outcomes. We also collected fidelity checklists and pre–post, parent‐report measures on autism knowledge, family outcomes (e.g., advocacy), stress, depression, and child behavior. Parents reported on program acceptability at post‐intervention only. We found the Parent Leaders delivered the program with overall high levels of fidelity, based on our observations and Parent Leaders' self‐reported checklists. Participants reported high acceptability of the intervention strategies and provided feedback on methods to improve application of the content. We found statistically significant pre–post quantitative improvements in parent‐reported knowledge of their rights and child advocacy, autism knowledge, and child social competence. Participants and Parent Leaders expanded on these changes in interviews, and identified improvements in autism knowledge, parent stress and depression, family outcomes, and child behavior related to program participation. We conclude PTA is a promising, culturally and contextually relevant intervention for parents of Black autistic children. A randomized controlled trial is needed to rigorously evaluate changes in child, parent, and family outcomes.