Parenting a Child with Autism: The Lived Experiences

Abstract

Even though we have considerable amount of research focusing on the parents of children with Autism, majority of these studies have primarily attempted to explore the stress and burden that these parents experience. There are very few attempts towards capturing the specific experiences of parents who have children with autism. The present study explored the socio-psychological realities of parents with children having ASD to gain insight into the lived experiences of these parents. The Zarit Burden interview was administered on 20 parents of children with ASD. A ZBI cut-off score that was 40 (moderate to severe burden) helped identifying 10 caregivers with high caregiving burden. A semi structured interview was further conducted to get a detailed account of the experiences of these parents. Qualitative analysis revealed major themes such as an inherent loss of control, fear of the future, shrinking self and emotional transformations. Although parents found the battle challenging, there were also signs of strengths they gained in the course of parenting child with ASD. Findings from this study may be helpful in developing programs to address life qualities of these parents.