“I was so Desperate”: Australasian Parents’ Expectations and Understandings of Stem Cell Therapy for Autism
TL;DR
The need for clearer clinical guidance, improved risk communication, and stronger governance of unproven stem cell interventions to support families navigating ethically complex decisions is highlighted.
Abstract
This study explores how parents seeking information about stem cell therapies (SCT) for autism spectrum disorder (ASD) understand and navigate a complex landscape of scientific uncertainty, commercial claims, and clinical advice. We conducted a quantitative content analysis of 54 enquiries submitted to the Stem Cells Australia website (2018–2023), alongside semi-structured interviews with 12 parents. Parents were highly engaged information-seekers, drawing on online sources, social media, other parents, and health professionals. However, they encountered inconsistent and often ambiguous guidance, particularly from clinicians, and reported difficulty assessing the credibility of competing claims. While many parents expressed scepticism about the efficacy of SCT, hope for improvement, fear of missing a critical intervention window, and positive accounts from other parents contributed to their ongoing interest. Risk perceptions were variable and often incomplete, particularly regarding procedural risks and long-term harms. Most participants had not pursued SCT, citing cost, uncertainty, and safety concerns. These findings highlight the need for clearer clinical guidance, improved risk communication, and stronger governance of unproven stem cell interventions to support families navigating ethically complex decisions.