Abstract:

It is a broad-spectrum neurodevelopmental disorder that manifests symptoms of autism in early childhood and its effects usually last a lifetime. The global prevalence of autism increases exponentially with each passing year, and studies focusing on individuals with autism and their families are becoming more important. Because autism is a disorder that seriously affects not only the individual but also the well-being of family members. Although there are burdens related to care, psychological and social burdens on families affect family dynamics. The aim of this study is to reveal the experiences of families with children with autism regarding psychological and financial difficulties and to determine their needs. The research was qualitatively designed to explore families' feelings, experiences and perceptions about having a child with autism. For this purpose, in-depth interviews were conducted with 10 parents who were medically diagnosed with autism for their children under the age of 18. Purposeful sampling was used to determine the study group. The data were obtained as a result of face-to-face interviews conducted by the researcher using a semi-structured interview form and analyzed with the MAXQDA 2020 program. Families have various difficulties regarding pre-diagnosis, post-diagnosis and social acceptance. Difficulties include the prolongation of the time between the moment when families are in doubt and the time they go to professionals for a diagnosis. This is about non-acceptance and denial. Families who have difficulties in accepting after the diagnosis go to different professionals during this process, which causes delays in early intervention and education. The families stated that they do not have a clear road map about what to do after the diagnosis and that informing the family is quite sufficient.

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