Living with the delusion of autism recovery: A grounded theory study on the experiences of mothers

Abstract

Purpose

This study employs Charmaz's (2014) constructivist Grounded Theory (GT) approach to explore and construct a theory about the experiences of mothers raising children diagnosed with autism spectrum disorder (ASD).

Methods

Data were collected over 1.5 years from online forum posts written by 10 mothers and in-depth qualitative interviews conducted with nine mothers. During the theoretical sampling phase, an additional four mothers were interviewed face-to-face. The analysis adhered to Charmaz's constructivist GT methodology, encompassing initial coding, focused coding, and theoretical coding.

Results

The study introduces the grounded theory, “Living with the Delusion of Autism Recovery,” which encapsulates mothers' oscillation between hope and despair as they navigate their children's developmental journeys. This longitudinal analysis traces mothers' experiences from the pre-diagnosis phase through special education, addressing a significant gap in the literature by examining the progression of experiences rather than isolated moments.

Conclusions

The findings underscore the urgent need for timely interventions and robust support systems. Delays in diagnosis, driven by healthcare professionals' reluctance to diagnose early and the lack of a formal early intervention system, exacerbate developmental challenges. This research provides a unique contribution to the literature by centering on the experiences of Turkish mothers, shedding light on cultural nuances and the dynamic nature of parenting a child with ASD in Türkiye. It is notable as the first study of its kind in Türkiye, offering invaluable insights into the evolving experiences of these mothers.