AUTISM: PARENTS’ EXPERIENCE AND CARE PRACTICE IN ADDIS ABABA

Abstract

Introduction Autism is a complex neurobehavioral disorder that includes impairments in social interaction and developmental language and communication skills combined with rigid, repetitive behaviours. There is critical lack of awarness among the community and parents about ASD. Commonly parents of autistic children in Ethiopia, particularly mothers, become disabled themselves by burdened with the full responsibility of care and likely having very little income. Thus this study aims to understand the pscycological, social and economic experiences of parents/caregivers from having or parenting a child with ASD. Methods : This was a phenomenological qualitative study conducted in Addis Ababa, Ethiopia. Seventeen caregivers of autistic children from 15 families were purposively selected. Semi structured in depth interview guide that include participants’ views to ASD, its challenges and their overall experiences was used to collect the data. Analysis was done using themes emerged from the data. Result: Initially all study participants’ does not have any awareness about the problem of their child with autism. Most of them noticed their child’s problems and heard about it from health professionals. In-depth interview had also indicated that: All parents of children with autism require intensive care and always need somebody to follow up the child with autism and 13(81.25%) child spent the day and night at home. In addition having a child with autism has not only extra expense but also effects on generating income to support their family. In this study, it is found that parents having child with autism expressed their feeling of being isolated from social life due to perceive a lack of understanding what autism is and what was involved in caring by the community Conclusion: Autistic disorder imposes a huge emotional/psychosocial and economic burden on families and communities. Existence of autism training centers, lack of funding and resources are among the challenges that were faced by the families/care takers of Autistic children.