Making visible the lived experience of Autistic children and their parents attending emergency departments in Australia: A Qualitative study

• Parents have a pivotal role during ED presentations however, their voices remain underrepresented in research. • Parents reported anticipatory anxiety, institutional barriers, and repeated traumatic encounters, often compounded by stigma and inadequate support structures. • Identifies five themes shaped by systemic and relational healthcare factors using Bronfenbrenner’s model. • Early support and embedding family centred care is recommended to reduce trauma. • Stresses that findings are interrelated and require collective implementation. Background: Autistic children present frequently to emergency departments (ED) but often encounter distressing and exclusionary environments. Parents play a pivotal role during these encounters, yet their voices remain underrepresented in research. Aim: To explore the lived experiences of parents with Autistic children attending the emergency departments in Australia. Methods: A hermeneutic phenomenological approach guided the study. Fourteen parents of Autistic children (under 18 years) participated in semi-structured interviews, analysed thematically using Bronfenbrenner’s Bioecological Model. Findings: Five key themes were identified across ecological systems: (1) parents as experts and navigators of care; (2) parental and child interactions with health staff; (3) systems that undermine safety; (4) stigma and disclosure about perceptions of autism; and (5) time, trauma, and long-term effects. Parents reported anticipatory anxiety, institutional barriers, and repeated traumatic encounters, often compounded by stigma and inadequate support structures. Conclusion: Autistic children and families face substantial challenges in ED, highlighting the urgent need for trauma informed, autism specific, and family centered practices, guided by a holistic ecological framework to drive system wide change.