Identifying Needs of Ethiopian and Eritrean American Parents of Autistic Children

Collectively, Ethiopians and Eritreans represent one of the largest African immigrant groups in the US, yet no research to date exists on families from these communities raising autistic children. The purpose of our study was to examine the experiences of Ethiopian and Eritrean families of autistic children including experiences (1) receiving the autism diagnosis and interacting with healthcare providers, (2) obtaining services and supports for children (including satisfaction with services and barriers to care), and (3) accessing services and supports for caregivers and families (including needs and barriers to care). Ethiopian and Eritrean parents (N = 51) raising autistic children in the US completed an online survey. Parents reported limited prior knowledge of autism within their communities and had varied experiences with healthcare providers through the diagnostic process. They endorsed barriers to accessing care for their child and family supports (such as provider shortages and cost of services), service needs, and dissatisfaction with school-based and behavioral supports. Many parents reported a negative impact on workforce participation in order to meet their child’s needs. Parents identified needs that would benefit their autistic children and families, such as accessible support groups to obtain relevant information. To our knowledge, this is the first systematic study exploring the experiences of Ethiopian and Eritrean families raising autistic children in the US. We discuss implications of our findings and recommendations for culturally responsive care.