Autism interventions designed or adapted for the Black/African American population: A systematic review

Abstract

The needs of the Black/African American population in the United States have historically been neglected in research, including in the development of therapies and services to support people with autism. The scope of interventions to support autistic people that are designed or adapted to be culturally responsive to the Black American population is not known. The state of these interventions systematically addressing cultural factors is also underexplored. The present systematic review examined the research evidence of autism interventions either designed or adapted for Black persons in the United States. The search did not have a specific date range but identified literature starting in 1999, and the search ended in 2023. A total of eight studies were identified and reviewed: Four were interventions designed specifically for the Black autistic population, one was an adapted intervention, and three were interventions evaluated with a Black autistic sample. To evaluate these studies, we used the Cultural Adaptation Checklist and found that few autism interventions are systematically adapted for Black individuals. Autism researchers that have engaged the Black autistic population or their families have been thoughtful in ways of engaging; however, there was no universal framework that drove development or adaptation efforts of these interventions. The development of more culturally responsive autism interventions (i.e. adapted evidence-based interventions) for the Black population offers promise for more equitable autism practices.

Lay abstract

Black/African American people in the United States who have a diagnosis of autism often experience service-related disparities, including not having the same access to high-quality autism and related care (e.g. behavioral interventions), and are less likely to have sustained treatment engagement across their lifespan. While interventions to support autistic people are typically designed to be universal, there is concern that these interventions not being tailored to the Black/African American population could reduce the overall impact due to a lack of responsiveness to the needs of the Black children or families who receive the intervention. The current systematic review summarized research on interventions developed for the Black autism community, including Black children with autism and their caregivers. After a comprehensive, systematic search, eight peer-reviewed publications were identified that met the study’s inclusion criteria. The majority of the interventions were tailored to Black caregivers of children with autism. Autism researchers demonstrate different strategies for engaging Black caregivers in culturally responsive ways; however, more research into these interventions is needed in order to assess their effectiveness. In addition, there are still limited interventions adapted to be culturally responsive to Black/African American autistic people. The Cultural Adaptation Checklist framework is a novel approach with promise to become the standard for adapting interventions to meet the needs of culturally diverse groups. Cultural responsiveness is an important facet in the development of interventions that produce optimal outcomes for the range of diversity in the United States and is an important step to achieving equitable autism research practices.