Autism Spectrum Disorder: Experiences of Mothers Before and After Their Children’s Diagnosis and Implications for Early Special Education Services

Abstract

Mothers of children diagnosed with Autism Spectrum Disorder (ASD) face various burdensome challenges in many stages of their lives. This study aimed to explore the experiences of Turkish mothers whose children were diagnosed with ASD in terms of the emotions they felt and the challenges they encountered before and after the diagnosis. 17 mothers participated in this study which was designed in line with qualitative research methods and participant information form based on demographic characteristics was utilized to collect data along with the interview form composed of 11 questions. Findings from face-to-face interviews conducted with mothers showed that mothers thought their children had some problems as a result of their observations of limitations in communication skills, limitations in social interactions and some problem behaviors in their children. Children were diagnosed with ASD by doctors during the preschool period. Mothers expressed that they had experienced grief, denial, anxiety and fear after the diagnosis and stated that these feelings had not changed. In addition, mothers mentioned that they had changes in their family lives and that they maintained a child-centered life. Mothers pointed out that they generally spent their time doing research and gathering information on the subject. Research findings reveal the necessity of taking these mothers’ experiences into account in early special education services and the need for planning these services to meet these mothers’ needs.