Telescoping Health Disparities in Childhood Autism: Urban African American Families Providing Protection and Taking Action through Their Cultural Pain

Background: Delays to the diagnosis and misdiagnosis of autism spectrum disorder (ASD) in African American children represent a considerable health care disparity in the United States. Untimely diagnosis and treatments in the care of African American children with ASD result in preventable delays in implementing interventions that improve outcomes. Cultural factors such as the child’s presentation, clinician bias toward diagnosis of the European American child, access to health care for the African American child and cultural knowledge of ASD within the African American community have been implicated in the care disparities.  

Objectives: The objective of this study was to discover the cultural care meanings, values, beliefs, practices and cultural ways of urban African American families caring for their child with autism.   

Methods: An ethnonursing qualitative study was conducted to discover and systematically analyze meanings of care and cultural ways of urban African American families caring for their child with autism. Fifty two participants were interviewed and in-depth field observations conducted in their environmental context. Participants included 8 African American families with 24 family members of children with autism, and 28 health and school professionals. Data were analyzed and findings reported as they emerged from the patterns as themes. 

Results: Two major culture care themes of providing protection and taking action for their child, underpinned by an additional finding of cultural pain, were significant to the health care disparities in diagnosis and treatment among African American children with ASD. The urban families provided protection by ensuring their child's independence in self-care, being watchful over their child’s safety, and building trustworthy supports with health care and school professionals. They took action for their child as a means to balance choices for their child, family and community, to ease the stigma of disability and lack of cultural knowledge of ASD, and to address the ongoing challenges of poverty and inequitable education. The additional finding of cultural pain, defined as hurtful or offensive daily and nightly experiences, influenced the families’ cultural ways as they sought to alleviate the cultural pain through humor, giving back and preparing their children for these experiences.  

Conclusions: The findings substantiated that multiple cultural factors can influence the delays to diagnosis and treatment in the urban African American child with ASD. When clinicians provide culturally congruent care for African American families caring for their child with ASD through cultural awareness, building trustworthy relationships and reinforcing family strengths; there is the potential to mitigate some of the disparities in the health care of childhood ASD. Interventions are needed to address the systemic disparities in health care access and cultural knowledge of ASD within the African American community for urban African American families caring for children with ASD. Future directions are to employ community-based research methods in order to develop and test systemic interventions that impact the delays to diagnosis and treatment in African American children with ASD.