NEGOTIATING SHAME: THE LIVED EXPERIENCES OF PAKISTANI MOTHERS HIDING AUTISM

Abstract

In Pakistan, autism is often constructed through cultural circumstances of family honour (izzat), and this shape how mothers interpret and manage the diagnosis of their child. Despite this, the lived experiences of mothers who often conceal autism remain underexplored. This study explores the experiences of Pakistani mothers who withhold autism diagnosis of their child from social networks. It attempts to examine how shame, stigma, and gendered expectations affect their coping practices. For this purpose, a qualitative phenomenological design was employed. The study employed semi-structured interviews with ten mothers. Recruitment occurred through community networks and autism-related support groups. Data were analysed using thematic analysis informed by Interpretative Phenomenological Analysis (IPA). This enable us to make an in-depth exploration of participants’ subjective meaning-making. In this study, five interrelated themes emerged: the pervasive weight of social judgment and shame; strategic practices of disclosure and concealment; the gendered concentration of caregiving responsibilities; reliance on faith and informal support systems; and systemic failures in healthcare, education, and state provision systems. The findings of this study demonstrate that shame is not only internally generated but also socially produced and sustained through everyday interactions. It compels mothers to engage in continuous emotional and informational labour with an aim to protect their family standing. There is a disproportionate burden on mothers, and it will not lesson in the absence of institutional support with practical changes. They have to manage their child and the stigma, often in social isolation. This study concludes that cultural norms, gendered obligations, and structural neglect are shaping lived experiences of Pakistani mothers for their child with autism in Pakistan. Pakistan needs socially responsive initiatives. It must regulate and subsidize therapies of these children. It also requires inclusive educational policies. Such policies that would challenge entrenched stigma and redistribute caregiving responsibility.