Mothers of children with autism: current challenges and intricate dynamics influencing the quality of life and mental health of mothers caring for children with autism

Abstract

This study investigates the social, personal and institutional challenges faced by mothers of children with Autism Spectrum Disorder (ASD) from their perspectives, aiming to understand these challenges, their strategies for negotiating these challenges and the impact on their mental health and quality of life. Employing a qualitative approach, the study utilizes Interpretative Phenomenological Analysis (IPA) and Young's (1999) framework on social inclusion and exclusion to contextualize societal attitudes towards autism over time. The analysis revealed four main themes: high caregiver burden, stress from the emotional toll of advocating for their child, difficulties in accessing resources, and a lack of coping strategies for dealing with the diagnosis. Despite increased awareness and advocacy for autism, mothers still experience significant stress and life disruptions due to societal acceptance issues and resource limitations. The findings highlight the need for a deeper understanding of caregivers' daily struggles to inform more effective support strategies and emphasize the necessity for tailored support systems to address these unique challenges.