Racial and ethnic group differences in service utilization in children with autism spectrum disorder: The role of parental stigma

Abstract

Racial and ethnic disparities in service utilization in autism are widely documented. Autism-related parental stigma may play a role if parents from racial/ethnic minoritized backgrounds experience dual stigma from autism and from membership in a marginalized group. This study examines racial/ethnic differences in autism-related stigma and compares the impact of stigma on service utilization in a large, diverse sample of US-based parents of autistic children (final sample = 764; White 41.6%, Black 16.6%, Latino/a/x/Hispanic 20.9%, Asian 7.5%, Multiracial 9.6%, Native American 1.8%, Pacific Islander 0.5%, Middle Eastern 0.2%, and Other 0.2%). Parents completed online surveys assessing affiliate and community stigma, service utilization, and perceived unmet treatment needs. Small but significant racial/ethnic group differences emerged in some aspects of stigma and service utilization. Specifically, Asian and Latino/a/x parents were less likely to fully engage in recommended services; Asian parents endorsed less service availability; Latino/a/x and multiracial parents reported more unmet needs; and Asian and White parents reported significantly more affiliate stigma. There was little indication that stigma contributed to racial/ethnic differences in service utilization, except for Asian families. Results indicate that socioeconomic factors interact with race/ethnicity to impact service use and stigma.

Lay abstract

Families of color often have less access to autism-related services and describe receiving lower-quality care than White families. The experience of being rejected and judged due to being a parent of an autistic child, called “stigma,” might contribute to these healthcare inequalities. The purpose of this study was to test whether families from different racial/ethnic backgrounds differ in their use of autism services and experience of stigma and whether autism stigma leads to lower service engagement for families of color. Our results indicated that Asian parents were less likely to engage in recommended services fully, reported less service availability, and significantly higher levels of autism-related stigma. Furthermore, higher levels of stigma among Asian families partially contributed to lower service engagement. Similar to Asian parents, Latino/a/x parents were more likely to report lower service engagement; and Latino/a/x and Multiracial parents endorsed more unmet treatment needs than other groups. Interestingly, White parents reported levels of internalized stigma similar to those of Asian parents, and both groups reported experiencing more stigma compared to Latino/a/x, Black, and multiracial parents. Future research must examine the factors underlying these differences, and more attention should be directed to reducing stigma among Asian families to minimize its impact on service utilization.