Experiences and Perceptions of Parents Raising Children with Autism

Authors: Tamene Keneni, Tibebu Yohannes

Abstract:

The prevalence of autism spectrum disorder (ASD) in general and autism in particular is on the rise globally, and the need for evidence-based intervention and care for children with autism has grown, too. However, evidence on autism is scanty in developing countries, including Ethiopia. With the aim to help fill the gap and paucity in research into the issue, the main purpose of this study is to explore, better understand, and document the experiences and perceptions of parents of children with autism. To this end, we used a qualitative survey to collect data from a convenient sample of parents raising a child with autism. The data collected were subjected to qualitative analysis that yielded several themes and subthemes, including late diagnosis, parents’ reactions to diagnosis, sources of information during and after diagnosis, differing reactions to having a child with autism from siblings, extended family members, and the larger community, attribution of autism to several causes by the community, lack of recognition and open discussion of autism and lack of appropriated public educational and health care services for children with autism and their parents. The themes and subthemes identified were discussed in light of existing literature, and implications for practice were drawn.

Keywords: ASD, autism, children with autism, raising children with autism