Autism and Society: Challenges, Opportunities, and Pathways to Inclusion An Investigation into the Lived Experiences of Mothers Raising Children with Autism Spectrum Disorder

This qualitative phenomenological study provides an in-depth exploration of the lived experiences of Iranian mothers raising children with autism spectrum disorder. Through semi-structured interviews with 25 mothers in Tehran and a rigorous three-stage coding analysis (open, axial, and selective coding), the research reveals the complex multidimensional challenges these mothers face. The findings demonstrate significant difficulties at three levels: at the individual level, mothers suffer from chronic psychological distress including anxiety, depression, and feelings of isolation; at the family level, they struggle with substantial financial burdens from treatment costs and relational conflicts; and at the social level, they confront challenges such as social stigma, public misunderstanding, and lack of specialized support systems.



The study highlights the crucial mediating role of the Iranian Autism Association as an effective civil society organization in establishing parental support networks, increasing social awareness, and facilitating access to specialized services. The research strongly emphasizes the need for developing a comprehensive support framework that includes specialized psychological counseling programs, expanded insurance coverage, professional training for healthcare providers, and community integration initiatives. These measures could significantly improve the quality of life for these mothers and enhance the wellbeing of families with autistic children within Iran's unique socio-cultural context. The findings provide valuable insights for policymakers and program developers in the fields of mental health and social welfare, offering evidence-based recommendations for creating more effective support systems tailored to the specific needs of these families.