Facing puberty: Exploring the onset, symptoms and experience of menses in females with Autism Spectrum Disorder

Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder resulting in language and social communication impairments, restricted interests, and repetitive behaviors. Previous research has focused on the cause, onset, and early years of the disorder, leaving the life course trajectory unknown. For females in particular, who comprise approximately 20% of individuals with ASD, a dearth of knowledge surrounding adolescence and puberty may pose challenges as the social, cognitive, and developmental growth inherent to puberty overlaps the social, developmental, and behavioral impairments of ASD. Few studies have addressed puberty in females with ASD and have reported mixed findings regarding its onset and presentation. In this study, puberty is represented by menses. The purpose of this mixed-methods study was to explore the onset, symptoms, and experience menses in females with ASD compared to Neurotypical peers through self- and parent-report on web-based questionnaires and semi-structured interviews with ASD parent-participant dyads. Analysis revealed a significant effect of ASD diagnosis in the participant or a sibling of the participant on age at menarche (AAM), with ASD females from multiplex families (families with two or more children diagnosed with ASD) reporting significantly earlier AAM (11.01 ± 1.10 years) than Neurotypical females with no family history of ASD (12.86 ± 0.94 years; p \u3c 0.05). Females with ASD were less likely to report pre-menstrual symptoms than Neurotypical females, yet reported dysmenorrheal, physical, behavioral, and emotional menstrual symptoms at similar rates. Females with ASD who reported menstrual symptoms indicated experiencing greater burden of behavioral and emotional symptoms than Neurotypical females. Parents were accurate reporters of their daughters’ AAM, but not menstrual symptom presentation. Interviews with ASD parent-participant dyads revealed six themes: preparations for puberty, the physical experience of menses, speed bumps on the road through puberty, managing the everyday, looking to the future, and reflective advice. Together, these findings highlight the complex presentation of puberty in females with ASD, underscoring the need for disorder-specific education, healthcare, and interventions that promote the well-being of young women throughout adolescence and adulthood