Parents' Experience during the Diagnostic Process of Autism Spectrum Disorder in the West Bank. A Descriptive Phenomenological Study

Abstract

ASD (Autism Spectrum Disorder) is one of the crucial subjects in the mental health sector, and it is a universal, rapidly-growing disorder. The aim of my study is to investigate and describe the experiences of the parents going through the process of diagnosing autism spectrum disorder in the West Bank. Briefly, my specific objectives are to describe: how an autism diagnosis affects families; the psychological impacts on parents; and the physical burden associated with it. I also investigated the consequences of diagnosis of autism spectrum disorder on couples' lives, family dynamics and the effects of community stigma. In order to explore the aim, the Giorgi methodology was adopted, and the design that I used was a qualitative phenomenological descriptive design. I conducted the study on 12 parents of children with autism in the West Bank. Semi-structured face-to-face interviews were conducted to elicit parents’ experiences. A thematic analysis of the data identified 4 core themes and 14 sub-themes representing the vital challenging elements of the parents' experiences: diagnosis, stigma, grief, and family challenges. This study is unique in being a pioneer in the field of ASD in the West Bank. It highlights the needs of children and their families throughout the process of diagnosis and afterwards. This study fills a gap in current research on ASD.

Keywords: Autism spectrum disorder (ASD), diagnosis, parents' experiences