A culturally grounded autism parent training program with Black parents

Abstract

Parent training (i.e. group-based supports and psychoeducation aimed at parent as primary agent of change) in Autism Spectrum Disorders (autism) is well-documented as an Evidence-Based Intervention designed to increase advocacy, knowledge, and empowerment. While research on Parent Training acknowledges the cultural limitations, the field lacks culturally grounded models. Furthermore, barriers in diagnosis, service acquisition, and inclusion of under-represented populations including Black families have been established; however, research programs have traditionally failed to include these families. This study aims to provide a first toward addressing the lack of inclusion. We describe the practice-based implementation of a culturally concordant Parent Training program (Spectrum of Care) developed by a community organization (the Color of Autism) as well as feedback from parents after the implementation process. The findings indicate that culturally grounded strategies could promote engagement and empowerment of Black families. There, however, is still a need for research that attends to parental mistrust and examines culturally grounded strategies more closely. Lay abstract Parent training programs have been well-studied in Autism Spectrum Disorders and shown to increase a parent’s feeling of empowerment, advocacy skills, and treatment enrollment for their child. The majority of parent training interventions have been developed without considering the unique needs of under-represented communities, such as the Black community. Black children with autism are not only misdiagnosed or not diagnosed at all, but are not accessing services equally compared to their White peers. There is an urgent need for culturally adapted interventions in order to decrease the disparity gap. The Color of Autism Foundation developed and ran a parent training program for Black parents of children with autism. The program was grounded in two key features: (1) creating a circle of support for parents to connect and heal from ongoing and historical racial trauma and (2) using parents of Black children with autism as the main facilitators. We believe this increased parent’s ability to engage in the educational aspects of the training. Overall, parents reported high levels of satisfaction with the training were highly engaged (attended an average of five of six sessions) and reported high levels of empowerment. Parents also reported continued mistrust in the medical and research community and a need for more Black providers. Further work should examine the relationship of the parent and provider in autism treatment and study the impact of circles of healing for Black families.