Exploring Maternal Perspectives on Autism Spectrum Disorder in Pakistan: Communication, Stigma, and Intervention

Abstract

Autism spectrum disorder (ASD) is a neurodevelopmental condition characterized by challenges in social communication, accompanied by the existence of limited interests and repetitive actions. The global occurrence of ASD in children is estimated to be around 1–2%, with projected rates of 1% in wealthier nations and 1.4% in South Asia. The objective of this study was to explore how mothers perceive pragmatic communication and their intervention experience for their children with ASD in the context of Pakistan? Data was collected using in-depth interviews and analyses were performed using applied thematic analysis. Results revealed the lack of understanding of pragmatic communication in parents and severe social stigma towards the parents and their child with ASD in society. Results also revealed several treatment issues that parents of children with ASD face while seeking treatment for ASD. These include failure of specialized center-based approach, accessibility, lack of understanding among treatment professionals and financial constraints. Parents have multiple strengths that help them in their journey, and they have certain future goals for their children as well. The diversity of parents’ goals suggested the need for a more individualized approach to ASD intervention. Financial constraints along with other treatment issues justified the use of more cost-effective parent-mediated Interventions for training parents of children with ASD and involving community.