“She Is Stand-Offish Like That”: Black Adults' Recognition of Child Behaviors Associated with Autism Spectrum Disorder

Abstract

Objective: 

The purpose of this study is to identify the sociocultural factors in the Black community that contribute to a delay in identification of Black children with autism spectrum disorder (ASD).

Methods: 

Four focus groups with parents of typically developing children were conducted at 2 Black Churches using a community-partnered participatory research approach and the socioecological model. Participants completed sociodemographic surveys, viewed CDC Autism Training Videos of Black children with ASD, and reported on their behavioral observations. Focus groups were audio recorded and transcribed. Thematic data analysis was conducted using NVivo software.

Results: 

At the individual level, participants interpreted ASD-associated behaviors as a problem of timing of developmental milestones in the course of normative development rather than a sign of a disorder and positive and negative characteristics. At the interpersonal level, the role of grandparents and extended family was important for monitoring child development. At the organizational level, racial concordance with health care providers was seen as critical because of historical mistrust. At the community level, fear of racism and child protective services and inequitable care emerged. At the policy level, there were concerns about access to affordable, high-quality care.

Conclusion: 

This study provides insight into the sociocultural factors in the faith-based Black community that may contribute to a delay in identification of Black children with ASD. Health care professionals need additional training to effectively serve Black children and families in the face of historical mistrust and health care inequity.