“We Have to Fight More:” Experiences of Black and African American Families Raising Children with Autism

Background:  Previous research has described significant barriers to appropriate Autism Spectrum Disorder (ASD) screening, diagnostic and early intervention efforts in the African American community. African American children visit providers on average three times more than White children to receive an ASD diagnosis, with a longer period of time between initial provider contact and diagnosis. Furthermore, African American children with ASD are 2.6 times more likely than White children to receive an inappropriate diagnosis such as Conduct Disorder or Attention Deficit Hyperactivity Disorder on their first specialty care visit. Once African American children are diagnosed with ASD, studies have found these children and their families are underrepresented in early intervention and genetics research, and face additional barriers to care. Apart from these concerning statistics, the current literature focusing on African American children with ASD is limited.

Objectives:  We explored caregiver stress, coping responses, and experiences accessing the continuum of ASD services, from screening and diagnosis through intervention, in a sample of urban Black and African American families raising children with ASD.

Methods:  Our community-based research team recruited parents and other primary caregivers of Black and African American children ages 18 and under with ASD in an urban Mid-Atlantic city (N=18). Participants completed the Parenting Stress Index, Ways of Coping Questionnaire, and a semi-structured interview. Qualitative data were coded and analyzed using NVivo 10, using grounded theory methods. We analyzed the quantitative data using descriptive statistics in SPSS.

Results:  Child-related caregiver stress was elevated in our sample (mean percentile = 85, SD = 18.2). Participants’ most commonly-reported coping mechanisms were problem solving and emotion regulation. On average, caregivers described a nearly 30-month delay between their initial concern and ASD diagnosis, which was attributed in part during the qualitative interviews to poor provider-family communication. Many participants spoke in depth regarding the impact of race on their experiences raising a child with ASD, including low provider expectations of child’s abilities, lack of adequate resources in local schools, perception of the need to “fight more” to receive services, incorrect provider assumptions regarding family structure, and stigma surrounding ASD within the Black and African American community. Caregivers’ recommendations for improving service access for Black and African American children with ASD will be summarized.

Conclusions: Our exploratory study identified numerous obstacles Black and African American children with ASD and their families confront to access appropriate services and support. In addition to barriers often reported by families of children with ASD in general, our research uncovered additional challenges, such a neighborhood violence and racial discrimination, which exacerbated delays to care. Despite reports of high levels of parent stress, the caregivers in our sample used primarily adaptive coping mechanisms to address stress. Future research should identify culturally-responsive interventions to support families under stress and build on existing strengths.