“What My Son Needs Is Me. What I Need Is... Guidance”: Caregiver Perspectives About Early Autism Supports Amid Changing Attitudes and Policies

The effectiveness of early supports for Autistic children has predominantly been measured in terms of changes in their development, such as language, cognition or adaptive behaviour. The benefits of early supports to children include, and are moderated by, effects on caregivers and families. We sought to understand perspectives of primary caregivers of children who, whether or not formally diagnosed, they believed to be Autistic, about the value of different aspects of early supports. We interviewed 19 caregivers, selected from a larger survey sample (n = 95) to cover a range of backgrounds and experiences accessing supports. We conducted reflexive thematic analysis to identify themes. We identified four themes through reflexive thematic analysis. Themes reflected common aspirations to optimise their children's future wellbeing. Despite public funding for early supports, families' other resources (especially time and mental load) were under pressure, impacting other activities such as employment and family relationships. Participants preferred supports that were adaptable to their changing needs, neuroaffirming and practical; they particularly valued authentic emotional support from therapists and sought providers they could trust. Our analysis suggests that family experiences of accessing supports might be just as important as the intended outcomes.