THE ROLE OF PERCEIVED SOCIETAL PRESSURE IN DELAYED HELP-SEEKING AND POST-DIAGNOSIS DENIAL AMONG PARENTS OF CHILDREN WITH AUTISM SPECTRUM DISORDER (ASD)

Abstract

Autism Spectrum Disorder (ASD) was neurodevelopmental disorder which required early diagnosis and early intervention. Nonetheless, the perceived societal pressure, which is common in a collectivist culture such as in Pakistan, also tends to cause delays during help-seeking by parents and exacerbates post-diagnosis denial. The present qualitative research highlighted issues in the lived experiences of parents of children diagnosed with ASD in Lahore, Pakistan, in terms of how familial and social judgment, cultural expectations, and social stigma influenced their behavioral and psychological responses. Semi-structured interviews of N= 18 parents who were recruited in different autism centres and support groups were structured with the help of reflexive thematic analysis. Thematic analysis was inclusive of six phases according to Braun and Clarke. The results indicated four major themes, including: (1) Early Realization and Delay in Help-Seeking, (2) Post-Diagnosis Denial and Emotional Processing, (3) Perceived Societal and Familial Pressure, and (4) Support and Awareness. The research presented a circular tie between social pressure, emotional denial and extensive delays in relating to seek professional assistance. Particularly, the mothers complained about the internalized stigma and shame and the pressure of the cultural norms that caused social isolation and reluctance to receive services. The insights highlighted the necessity of culturally-sensitive awareness-building, parent-focused programs, and a policy change to enhance the autism literacy, early diagnosis tracks in low to middle-income countries (LMICs). The work was also significant because it is one of the few studies that contributed to Pakistani literature supporting the need for more sensitive ways of understanding ASD outside of biased approaches to humanistic and inclusive care models.