Problems and social exclusion of families with children with autism: A mixed method study

Autism, whose symptoms appear in early childhood, becomes evident in the first months of life, negatively affects the child's social interaction and communication skills, and affects all areas of his life by seriously damaging his social life, communication skills, behaviors and processes with relationships. Autism is the family, school, social environment, social institution, etc. with which the child interacts. It harms the relations with all systems and can cause the child and his family to experience various problems in the society. In this context, in this study, the problems experienced by families with children with autism and the experiences of social exclusion due to autism were examined. For this purpose, mixed research model was used to obtain rich and detailed information. 150 mothers/fathers of children with autism, selected by the purposeful sampling method, participated in the study. Socioeconomic and Demographic Information Form, Multidimensional Scale of Perceived Social Support (PSSS), Social Exclusion Scale and Semi-Structured Interview Form were used in the research. The problems of families and their experiences of social exclusion were described using a semi-structured interview form prepared by the researcher with 22 parents of children with autism. Regression, t-test and ANOVA analyzes were used in the analysis of quantitative data, and thematic content and process analysis Maxqda 2020 was used in the analysis of qualitative data.According to the quantitative findings obtained from the research; Social exclusion levels of families with children with autism are moderate. A significant relationship was found between the perceived social support systems of families and the levels of social exclusion, and it is seen that the increase in social support reduces social exclusion. According to the qualitative findings obtained from the research; Families with children with autism are experiencing some problems in education, social, health and economic areas and they have been exposed to exclusionary attitudes and behaviors in these areas. Families' sources of support are social, economic, emotional, psychological, and the family's internal resources and strengths.All of the families stated that the services provided by the state were insufficient and stated their expectations from the state. At this point, the problems of families with autistic children, their experiences of social exclusion and their expectations from the state were evaluated and the result was presented as a suggestion from the perspective of social work.