Silent Struggles: Parental Beliefs and Cultural Barriers to Autism and Developmental Disabilities Understanding in Pakistan

Abstract

The purpose of this qualitative research was to examine parents’ beliefs and cultural perceptions about Autism Spectrum Disorder (ASD) and Developmental Disabilities (DD) in Pakistani families within the sociocultural setting of Gujrat, Punjab. It is evident in Pakistan that perceptions of mental and developmental disabilities are often influenced by cultural, religious, and social beliefs, which are usually explained from a spiritual, supernatural, or biomedical perspective. This research was based on a phenomenological research approach, which aimed to explore parents’ experiences of having children with ASD and DD. A purposive sample of 15 parents, both mothers and fathers, was selected from different settings. The research findings revealed parents’ perceptions of having children with DD, explained from a religious perspective of divine will, fate, or spiritual interventions, and their lack of awareness about scientific explanations. Other themes that were identified include stigma, which was depicted in “Log Kya Kahenge?”; social isolation; gender roles in caregiving, which showed that the mothers were the ones doing the caregiving, while the fathers were only involved in decision-making; financial issues, which were a barrier in the caregiving process; and the use of medical as well as spiritual forms of treatment. Despite all the challenges that the parents faced, they showed some level of strength through religious coping and having hope for the improvement of their children’s conditions. This shows that there is a need for awareness, healthcare services, and the use of biomedical and sociocultural approaches.