Examining the Process and Impact of Parent Affiliate Stigma on Raising a Child with ASD in African American Families

Background and Purpose: Autism spectrum disorder (ASD) is a developmental disorder, impacting 1 in 44 children in the United States, affecting their behavior, communication, and socialization. Individuals with ASD display behaviors that often lead to social stigmatization. The child-related stigmatization often extends to parents who, by association, become the subject of negative social reactions and alienation.

Recently, Kinnear et al. sought to specifically study the process of parents’ difficulties with stigma (child’s ASD-related behaviors, stereotypes and rejections, isolation and exclusion, impact on parental employment, and parent’s difficulty with ASD stigma) and whether their stigma influenced their difficulties in raising a child with ASD. However, Kinnear’s study mostly examined racially white families. Consequently, the purpose of this study was to examine whether African American parents of children with ASD endorse experiencing the affiliate stigma process at all stages of the Kinnear model. The study also expanded the Kinnear model by using the affiliate stigma scale to operationalize affiliate stigma and the Revised Impact on Families (RIOFS) scale to operationalize difficulty raising a child with ASD.

Methods:

Study Design: The study utilized a cross-sectional non-experimental survey design. The study involved the collection of empirical data from African American parents of children with an ASD diagnosis. Participants were asked to complete a 38-question survey online at a single point in time. The online survey was constructed in SurveyMonkey® with questions designed to operationalize study variables.

Sample: The study sample of African American parents of children with ASD was collected by using a non-probability purposive sampling strategy. The sample of the study consisted of 2,276 African American parents of a child with ASD.

Measures: The study collected data on child age, gender, and level of verbal communication difficulties and parental age, gender, and education level. Additionally, study participants responded to questions using the Child’s Autism-related Behaviors scale, Competence in Social Roles scale, Autism Causes and Characteristics, Frequency of Rejection of Child by Peers scale, RIOFS, and the Affiliate Stigma scale. In addition, participants responded to single item questions to assess family isolation, family exclusion, and impact on employment.

Results: The results of a multiple regression analysis showed that child autism-related behaviors, child’s rejection by peers, impact of autism on parental employment, and difficulty with stigma were statistically significant predictors of difficulty of raising a child with ASD. Difficulty with stigma was a stronger predictor of difficulty of raising a child with ASD for African American parents of a child with ASD when compared to Kinnear’s sample. In an expanded model, family exclusion and affiliate stigma were found to be statistically significant predictors of difficulty of raising a child with ASD.

Conclusions and Implications: The findings of the study indicated that African American families have greater difficulty with stigma pertaining to ASD, which may be exacerbated by other forms of stigma experienced by African American families. Future research should focus on designing studies to gain a deeper understanding of the findings in this study, including the source of the stigma for African American families.