An In-Depth Analysis of the Life Experiences of Parents with Children with Autism Spectrum Disorder

Abstract

Studies report that different aspects of the family structure can be affected when a family has a child who has been diagnosed with Autism Spectrum Disorder (ASD). This study aims to determine the experiences of Turkish parents of children with ASD before, during and after the diagnosis, and how this situation affects both their individual and family lives. In the study, the data were collected using a phenomenological approach that involved the semi-structured interview method. The study sample consisted of 10 parents of children with ASD, including five fathers and five mothers. The data were analyzed using the content analysis technique, from which nine themes were identified. The themes and sub-themes identified constituted the main findings of this study. Accordingly, most of the participants stated that the ASD diagnosis of their children was late as a result of being misled, and that their children were able to develop daily life and self-care skills from the trainings they had received. Participants further reported that they had endured negative experiences, including being forced to take on part-time jobs or to go into early retirement, because of having children with ASD. Yet, in contrast to these drawbacks, the participants also stated that they had experienced positive emotions due to their children's special situation, such as looking at life from a different perspective, feeling stronger and developing different methods of dealing with ASD-related difficulties. From the results of this study, it can be suggested that additional research involving different approaches be planned to gain a better understanding of the experiences that both children with ASD and their parents face as a result of being labeled (stigmatized).