Stress, Coping and Resilience in African American Families Raising Children with Autism

Background: Despite the growing awareness of Autism Spectrum Disorder (ASD), barriers to appropriate screening, diagnostic and early intervention efforts in the African American community persist. 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 significantly underrepresented in early intervention and genetics research, and face considerable barriers to care. Apart from these concerning statistics, the literature focusing on African American children with ASD is very limited. The current study solicited the perspectives of Black and African American caregivers raising children with ASD. Specifically, we explored caregivers’ stress, coping responses, and experiences accessing the continuum of ASD services, from screening and diagnosis through intervention.

Method: Parents and other caregivers of Black and African American children ages 18 and under with ASD were recruited in an urban Mid-Atlantic city. A semi-structured interview guide was used to guide discussions on caregivers’ access to ASD-related services and supports. In addition, participants completed the Parenting Stress Index and Ways of Coping Questionnaire. Qualitative data were coded and analyzed using NVivo 10, using grounded theory methods. Descriptive statistics of the quantitative data were produced using SPSS.

Results: Stress scores were notably elevated in our sample (mean percentile = 94.5, SD = 8.3). Caregivers’ most common coping responses were problem solving and emotion regulation. The research participants outlined multiple barriers to ASD-related care, including inconsistent or missing information on ASD, limited transportation options, and financial issues. The respondents also reported lack of appropriate childcare, unsafe living conditions and community violence contributed to their stress, and led to maladaptive coping behaviors such as alcohol use. Some parents voiced concerns over differential treatment due to race and offered suggestions for improving access for Black and African American children in ASD services.

Implications: This study highlights the numerous barriers caregivers of children with ASD confront to access appropriate services and support. Many of these barriers are consistent with extant research exploring the general needs of families raising children with ASD. However, our research uncovered additional challenges, such a neighborhood violence and racial discrimination, which exacerbated delays to care. While our sample reported exceptionally high stress levels, we also found the parents and other caregivers in the study used both adaptive and maladaptive coping mechanisms to address their stress. More research is needed to identify interventions and other supports for families facing obstacles to appropriate ASD services.