The Lived Experiences of Mothers Raising Children with Autism Spectrum Disorder in Ethiopia

Abstract

Autism Spectrum Disorder (ASD) is a complex neurological condition characterized by impairments in social interaction, communication, and behavior. In Ethiopia, mothers of children with autism face unique responsibilities and challenges in caring for their affected children compared to other family members. This study delves into the lived experiences of these mothers, focusing on their reactions upon detecting autism in their children, the primary challenges they encounter in nurturing and caring for their children with ASD, the support they receive from the community and schools, and their feelings regarding the future career prospects of their children with autism. To conduct this investigation, a qualitative research approach, specifically employing a phenomenological research design, was utilized. Data collection was facilitated through semi-structured interviews, and the study targeted six regular schools and one autism center. A purposive selection process identified fifteen mothers of children with ASD as key informants. The subsequent data analysis centered on thematic areas outlined in the interview guides, which served as leading questions. Additionally, two cohesive case stories were developed as integral components of the study. The findings revealed that a majority of the respondent mothers/guardians felt overwhelmed by the demands of caring for their children with autism. They also highlighted the negative attitudes of others and the lack of specialized services, compounded by a shortage of trained personnel, which significantly exacerbated their challenges and complicated their caregiving responsibilities. In light of the study's outcomes, it is recommended that the concerned federal ministries become actively involved in promoting and coordinating interventions to support mothers/guardians and their children with autism. This involvement is crucial to ensure that appropriate services and assistance are readily available to address the needs of these individuals.