Reactions of Parents to the Diagnosis of Autism in Addis Ababa, Ethiopia

Autism is a neuro-developmental disorder that causes impairments in multiple areas of development including social interaction, communication, and behavior. In Ethiopia, around 600,000 individuals are living with autism. Developmental disorders such as autism are sometimes regarded as an evil-spirit or as a punishment from the supernatural/divine power in this country. The level of awareness, acceptance, and support for Autism Spectrum Disorder (ASD) in Ethiopia is very low. Joy and Nehemiah Autism Centers are the only two centers providing support for children with autism and their parents. The main objective of this study was to examine the reactions of parents to the diagnosis of autism in Addis Ababa, Ethiopia. To achieve this objective, nonrandom purposive sampling was used to select parents of children with ASD. Twelve parents were recruited from the two institutions with the help of managers of the centers. Data were collected by semi-structured interview guides. Interviews were transcribed and analyzed using thematic analysis. The identified reactions of parents to the diagnosis of autism were: stress, shock, denial, and feelings of guilt, blame, sorrow, and grief. Only a few participants relieved by the fact that their confusion was over and knowing their challenge had a name, autism. Overall, the negative feelings and reactions were dominant, but a few parents who felt relieved perhaps reframed their minds early on to thinking towards helping and providing care to their children. As a result, parents need to be cared for in order to provide for the needs of their children at the moment of diagnosis and throughout the entire process of caring for individuals with ASD.