Autism and Puberty: A Mixed Methods Systematic Review

Background Puberty is a time of profound change for all. Autistic children may find pubertal changes harder to navigate, due to sensitives surrounding sensory experiences, and difficulty with change. Our prospectively registered mixed methods systematic review (Registration: PROSPERO2023 CRD42023446750) aimed to synthesise research on Autism and puberty. Methods Included studies focused on puberty in Autistic people (including self-identifying) and those supporting them. Searches were limited to English language sources from 2013 - July 2023. We searched: Medline, APA PsycINFO, and CINAHL (all via EBSCOhost), and Web of Science (via Clarivate). Studies were subjected to Convergent Integrated synthesis (Joanna Briggs Institute). Quality assessments were undertaken using Joanna Briggs Institute tools. Results 3,546 unique records were identified, and 61 items were included in the review. Most papers were high quality. We identified five themes. First, many studies compared Autistic and non-Autistic people, but few differences were identified, with puberty characterised as a universal experience. Second, parents felt unprepared for their child’s puberty, and uncertain of their future. Third, additional education in areas of puberty and sex were identified as needed for Autistic people, and those caring for them. Fourth, breaking norms was explored at length; with many parents worrying their child was not normal in behaviour and development. Finally described were physical changes of puberty and challenges these bring, specifically difficulties around menarche and menstruation. Limitations of studies included a lack of diversity (ethnicity; few fathers) and restricted consideration of confounding factors and author impact on research. Discussion Co-developed interventions are required, to facilitate understanding consent, navigating pubertal changes, and learning skills. The synthesised research did not focus on comfort and wellbeing, but more so on normality, or perceived lack of, of Autistic young people. Future research should prioritise topics of importance to Autistic people, and should seek consent from Autistic participants.