A comprehensive look into the experiences of parents whose children have autism spectrum disorder

Anadolu The main aim of this study is to determine the experiences the parents whose children have ASD go through before and after the diagnosis and in the diagnosis process itself and how their lives are effected by ASD.The research participants are five mothers and five fathers who have a child with ASD. Research data were collected by using semi-structured interview, which is a qualitative data collection method. The data were analyzed through content analysis. Nine themes were formed through data analysis. Findings were obtained based on the data made into themes. The research findings indicate that the parents noticed ASD symptoms in their children when they were two years old at the latest. The participants stated that some doctors they consulted due to ASD symptoms in their children delayed the diagnosis process with misdirections. It was found that the process of attending the special education centers was initiated by specialists who had diagnosed the child. The parents said that their children became more social and acquired various daily life skills and self-care skills with the help of the education they received. It was found that the participants experienced various negative effects of having a child with ASD in their working life such as retirement, starting to work part-time, and having to quit the job. The parents also noted that their children who have a sibling with ASD felt secondary and had a more mature personality for their age. The participants said that in the process of diagnosis and education of their children with ASD, they had various problems in their social life and relationship with their spouse. It was realized that the parents used various methods to deal with these difficulties. Some participants stressed that they experienced several positive effects of having a child with ASD such as seeing life from a different perspective and feeling oneself stronger. It was determined that a great majority of the parents had various concerns for the future of their child and wanted their child to be able to live independently in the future. Further research is needed to contribute to literature on this subject. Based on the research results, some recommendations were developed for practice. Keywords: Parents having a child with ASD, life experiences, qualitative approaches, phenomenology.