Navigating Caregiving Challenges and Societal Barriers: Lived Experiences of Mothers Raising Children with Autism Spectrum Disorder in Peshawar, Pakistan

Abstract

Raising a child with Autism Spectrum Disorder (ASD) can present significant emotional, social, financial, and practical challenges for parents and families, particularly in low-resource contexts such as Pakistan. These challenges highlight the importance of accessible services, family support, and greater understanding and acceptance within society. This qualitative study explores the challenges experienced by mothers of children with ASD, focusing on their emotional experiences, everyday caregiving responsibilities, family relationships, and interactions with the wider social environment. The study also unfolds parenting practices in responding to societal and cultural barriers. Drawing upon Vygotsky’s sociocultural and Piaget’s stage theories of cognitive development, 15 mothers were selected purposefully whose children were enrolled in the Centre of Excellence for Special Children with Autism (COESCA), Peshawar. The data were collected through semi structured interviews and analyzed through thematic analysis. The findings revealed that mothers experienced emotional shock and self-blame at diagnosis, communication difficulties, public breakdowns, and financial strain, including job loss. They also encountered social stigma, blame from family and community members, and attributions of autism to spiritual causes. Repeated rejection by mainstream schools further restricted their children’s educational opportunities and contributed to families’ withdrawal from social life. Although withdrawal offered short-term protection from negative social reactions, it also narrowed children’s social experiences. The findings highlight the need for affordable therapeutic services, early psychological support, parent training, and community awareness programs.