A community-based approach to longitudinal language research with racially & ethnically minoritized autistic young adults: Lessons learned and new directions

Abstract

Purpose: Language and autism research each typically exclude racially and ethnically minoritized (REM) autistic individuals. In addition, in the case of autistic individuals with language impairment, investigators often approach caregivers to discuss research participation, rather than autistic individuals themselves. This gap limits the ecological validity of language research in autism. To address this gap, this clinical focus article describes strategies for engaging REM autistic young adults with language impairment using lessons learned from five years of longitudinal research with this population. This approach involved an ongoing community partnership, as well as participatory partnerships with REM autistic individuals and community stakeholders, developed through “slow science.”Conclusion: The approach yielded excellent retention of participants over five years and led to co-development of research projects aimed at priorities described by REM autistic individuals and their families, including understanding self-determination, social determinants of health, and language variability in autistic REM with language impairment. Findings support the utility of community-based methods with autistic REM young adults with language impairment, with key take-aways for diversifying research while replicating, extending, and building theory.