Navigating challenges and emotional responses: a qualitative study of Iranian parents’ experiences in the Autism Diagnosis process and beyond

Background Autism spectrum disorder (ASD) is a complex neurodevelopmental condition posing significant emotional and practical challenges for families, particularly during the diagnostic process. Limited research has explored how parents in non-Western contexts interpret and emotionally navigate this experience. This study investigated Iranian parents’ beliefs, meaning-making processes, and emotional trajectories during and after the ASD diagnostic journey, aiming to identify culturally shaped patterns and implications for family-centered care. Methods In 2024, a qualitative study was conducted in Yazd, Iran, using conventional content analysis guided by Graneheim and Lundman’s framework. Twelve parents of children with ASD (aged ≤ 6 years) were recruited via purposive sampling with maximum variation from “Tolou-e-Mehr” and “Baqa” Autism Centers, the only Welfare Organization-supervised diagnostic and rehabilitation centers in Yazd at the time. In-depth, semi-structured, face-to-face interviews with individual participants were conducted until data saturation was reached. Data were analyzed using MAXQDA version 18, and rigor was ensured through Lincoln and Guba’s trustworthiness criteria. The findings were reported in accordance with the 32-item COREQ checklist. Results Three categories and one overarching theme emerged from the analysis. The overarching theme, “The Parental Journey Through Autism Diagnosis Amid Uncertainty and Progressive Adaptation , ” captures parents’ evolving experiences across the diagnostic pathway. The three categories included: (1) Diagnostic Process Challenges; (2) Emotional Trajectory of Parents During Diagnosis; and (3) The phases of Parental Response, from initial symptom recognition through post-diagnostic adaptation. A key contribution of this study is the identification of a culturally grounded predominant trajectory encompassing seven key phases of Parental Responses across and beyond the autism diagnostic journey: symptom recognition, denial and shock, anger and frustration, bargaining and resistance to medical advice and treatment, emotional distress/depression, social isolation, and acceptance/adaptation. Granular participant-level analysis revealed that while parents demonstrated an overarching chronological progression toward adaptation without backwards regression, individual trajectories were dynamic and flexible, with parents selectively navigating or bypassing intermediate phases. This trajectory incorporates culturally specific elements, including resistance to medical recommendations through religious practices and stigma-related isolation that extends to broader family networks. Parents also reported diagnostic delays, inconsistent assessments, and fragmented service pathways that intensified emotional burden. Conclusions It seems this study provides novel insight into the culturally shaped emotional processes Iranian parents undergo during ASD diagnosis and beyond, highlighting how systemic challenges intersect with personal coping responses. Findings underscore the need for timely diagnosis, coordinated family-centered services, and culturally sensitive psychosocial support to help parents navigate their dynamic diagnostic pathways. Trial registration Not applicable.