The experiences of autistic parents in terms of their psychosocial and financial burden

In this study, the experiences of parents and different professionals working in this field regarding the psychological, social and financial difficulties experienced by families with children with autism were discussed. The data of the study were collected by conducting in-depth interviews with twenty parents and seventeen professionals using semi-structured interview forms in accordance with qualitative research methods. The findings obtained were grouped under four different themes: learning the diagnosis, social life, financial difficulties, and suggestions and needs. Learning the first theme, diagnosis; difficulties encountered in the diagnostic process, the length of the diagnostic process, the late age of diagnosis, a lot and despair, inability to accept, self-blame, changes in future plans and so on. psychological responses of families to diagnosis and so on. The second theme was determined as social exclusion, social reactions, reduced participation in social life, family relations, difficulties experienced in the field of education and health, and difficulties in the field of employment. Under the third theme, financial difficulties, there are categories of treatment costs, training costs, and extra costs. Suggestions and needs for families, professionals and policy makers are included under the theme of suggestions and needs, which is the last theme. Families are under a psychological burden upon learning the diagnosis, become isolated from the society and experience financial difficulties for the needs of their children. In particular, financial difficulties negatively affect the well-being of families and this situation directly reflects on their children. Families who know what can be done for their children but cannot afford it financially feel inadequate and helpless.