Understanding Delayed Autism Diagnosis in Pakistan

Abstract

Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder for which early diagnosis is critical to long-term developmental outcomes. Yet children in Pakistan frequently receive a formal diagnosis well beyond the developmental window in which intervention is most effective. This qualitative study examined the factors contributing to delayed diagnosis of ASD in Pakistan, drawing on the lived experiences of eight caregivers (parents and grandparents) recruited using purposive sampling. Data were gathered using in-depth, semi-structured interviews and analyzed using Reflexive Thematic Analysis (Braun & Clarke, 2006, 2019)—a framework with Bronfenbrenner's Ecological Systems Theory and the Health Belief Model as guides. The analysis revealed seven themes, which included: Family dynamics and denial, Healthcare System Inadequacies, Help Seeking Difficulties, Limited Resources and Accessibility, Maternal wellbeing, Parent knowledge and Awareness, and Sociocultural influences. Diagnostic delay in Pakistan was identified as a combination of family, institutional, and cultural barriers, not one particular factor, and health-care experiences that were supposed to reassure the parents sometimes actively delayed the recognition of developmental concerns. These findings suggest that addressing diagnostic delay in Pakistan requires attention to family dynamics, healthcare provider communication, and sociocultural stigma, with implications for clinical screening protocols and public health messaging.