Otizmli Çocuğa Sahip Ailelerin Psikososyal ve Finansal Yüklerine İlişkin Deneyimleri

Abstract

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 autistic children are 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 were gathered under four different themes: learning the diagnosis, social life, financial difficulties, and suggestions and needs. Learning the diagnosis, which is the first theme; difficulties experienced in the diagnosis process, length of the diagnosis process, late diagnosis, shock and helplessness, inability to accept, self-blame, change in plans for the future, etc. psychological reactions of families towards diagnosis and so on. The second theme was determined as social exclusion, social reactions, decreased participation in social life, family relations, difficulties in education and health, and difficulties in employment. Under the third theme, financial difficulties, there are categories of treatment costs, education costs, and extra costs. Under the last theme, suggestions and needs, there are suggestions and needs for families, professionals and policy makers. Families come under a psychological burden with the learning of the diagnosis, are 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 directly reflects on their children. Families who know what can be done for their children but cannot afford it financially feel inadequate and helpless.