POSITIVE EXPERIENCES AND MEANINGFUL INTERVENTIONS OF PARENTS OF CHILDREN WITH AUTISM SPECTRUM DISORDER:JOYS AND OBSTACLES IN THE FLOW OF LIFE

Abstract

While there is wealth of quantitative research exploring interventions for children with Autism Spectrum Disorders (ASD), these studies insufficiently address how the Quality of Life (QOL) of children with ASD is impacted by interventions. Studies that explore social participation tend to address easily measurable aspects of socialization, but do not adequately address the quality of interactions. The challenges of raising a child with ASD are numerous. Alongside difficulties, parents report positive aspects of raising a child with ASD, which are underexplored in the literature. This study sought to better understand these issues by using a grounded theory method. Five parents of children with ASD were interviewed. Four major themes emerged. The theme of "Flow of life," described the interconnected experience of parents together with their children as they planned for the near and distant future and considered the QOL of their children. The second theme, "Circumstances," included challenges and positive experiences of families. "Helping the flow, joys" was the third theme, capturing situations that helped parents navigate around challenges. Finally, "Social participation" captured the experiences of everyday social activities and provided a sense of supports for families. The themes were integrated, using the framework of the Kawa model, which represents life experiences through the illustration of a river. The model was modified and additional components were added to accurately represent the experiences of families that emerged from this research and may be a useful tool for parents to explore the most meaningful and relevant interventions for their children with ASD.