Native American Parents of Children With Autism: Perceptions and Life Experiences

Autism spectrum disorder (ASD) is found in all racial and ethnic groups and at all socioeconomic levels, including in the Native American/Alaska Native (NA/AN) communities. However, a review of literature showed a dearth of research on Native American children with an ASD diagnosis and their families, particularly from the first-person perspective of the families. We conducted semi-structured interviews with 12 Native American parents or guardians of children with ASD regarding their perceptions of, and experiences with, the diagnostic process, and family and community support. Participants in the study noted an increase in awareness of ASD in their communities, challenging diagnostic processes, a lack of knowledgeable professionals and sufficient services on the reservation, and the importance of support from extended families. Recommendations for providers and future research are included.