Cultural adaptations of a parent training program for families of children with ASD/IDD: Parents taking action

Substantial systemic barriers to care exist for Black, Latino, Asian, and other communities of color, as well as low-resourced populations. Yet, few parent-mediated or parent education interventions specifically target ethnically, racially, or socioeconomically diverse families of children with autism spectrum disorder and/or intellectual and developmental disabilities (ASD/IDD). Furthermore, the ASD/IDD literature is lacking guidance on methods to culturally adapt interventions to attend to families' unique strengths and challenges. Thus, this chapter describes five adaptations of Parents Taking Action (PTA), a peer-led program aiming to increase parents' ASD/IDD-related knowledge and build skills in evidence-based parenting strategies. We developed the original PTA version for Latino parents of young children with ASD using rigorous community participatory processes informed by the Ecological Validity Framework. The adaptations targeted Black parents of young children with ASD in Maryland; Chinese immigrant parents of children with ASD/IDD in Illinois and New York; Latino parents of youth with ASD in Colombia; Latino parents of adolescents with ASD in California; and parents of children at-risk for ASD in low-resource households in Texas. For each adaptation, we describe background contextual factors; the process by which we engaged key stakeholders (including self-advocates, parents of individuals with ASD/IDD, and providers), assessed community needs, adapted the program, piloted the intervention, and evaluated outcomes; and next steps for research and practice. The lessons learned from our adaptation and pilot study processes can be used for future research and practice aiming to empower culturally diverse parents raising children with ASD/IDD.