EXPERIENCES OF MOTHERS IN DEALING WITH STIGMA RELATED TO THEIR CHILDREN WITH AUTISM SPECTRUM DISORDER IN THE SAUDI CONTEXT

Abstract

It remains unknown to what extent mothers of children with Autism Spectrum Disorder (ASD) are stigmatized. Children with ASD require special care to increase their attention and master the necessary motor and behavioural skills. In most society, particularly Middle East and Africa, mothers are largely the care providers for children while their partners concentrate on financial provision. Therefore, mothers experience a lot of challenges and stigma from some partners, family members, and the society. This qualitative phenomenological research examined the experiences of 15 mothers regarding the stigma associated with their children autism in Jeddah, Saudi Arabia. The research examined mothers' beliefs about the positive and negative roles that culture, education, and health institutions play in this regard. Five broad themes emerged from the analysis: mothers' concerns; reactions to the child's diagnosis; difficulties obtaining an ASD diagnosis; difficulty accessing resources; and cultural stigma (people's reactions). The researcher explored the themes and challenges of ASD through literature review and field Research (interviews). Findings showed the need to change structural and societal approaches toward ASD to share the burden among all stakeholders alleviating pressure on mothers. Keywords: children with ASD, cultural stigma, mothers’ stigmatization, mothers experience, society positive roles, society negative roles