At what cost?: Qualitative accounts of parents of young Autistic people navigating the transition to adulthood in Aotearoa

Abstract

Neurodevelopmental disorders are paradoxically over diagnosed and underdiagnosed, with autism being one of the most underdiagnosed disorders under the neurodivergence umbrella. Autism spectrum disorder is a neurodevelopmental disorder impacting functioning in social, cognitive, and physical domains. Research suggests that Autistic people experience poorer health and quality of life outcomes, lower academic attainment, higher unemployment, and particularly struggle during the transition from secondary education to adulthood (Shochet et al., 2022). Although an established knowledge base exists in this area, research seldom observes this transition in Autistic people in Aotearoa. Two focus groups were conducted with five mothers of Autistic children (ages 17 to 30). Participants identified key changes to support successful transitions, including greater involvement of people with lived experience in autism services, improved societal education about autism, enhanced diagnostic accuracy, and increased access to ongoing, targeted support. Thematic analysis identified five themes (At what cost, the shortcomings of systemic education, the bio-psycho-social-systemic view of Autistic youth, the transition to adulthood, and the mental health system). The analysis examined predisposing and precipitating factors contributing to adult transition-related obstacles across social, systemic, economic, and family domains. Results from the current study illuminate how Aotearoa-specific factors are impacting Autistic people today. Examining these factors may support the navigation of diagnosis, contribute to ongoing support, and the wellbeing of Autistic young people transitioning into adulthood.