Facing Puberty: Understanding the Onset and Experience of Menses for Females with Autism Spectrum Disorder

Background: Living with an Autism Spectrum Disorder (ASD) presents challenges across the lifespan. Puberty may pose unique difficulties for females with ASD with the onset of menses. Only a handful of studies have addressed onset and presentation of menses in females with ASD, yet the experience of puberty for these young women is currently absent from the literature. Findings suggest menarche may be incongruent to Neurotypical (NT) peers and menstrual symptoms may be more severe (Knickmeyer et al., 2006; Ingudomnukul et al., 2007, Burke et al., 2010, Whitehouse et al., 2011, Hamilton, Marshall & Murray, 2011, Pohl et al., 2014, Hergüner & Hergüner, 2016). As age at menarche (AAM) is associated with increased risk of serious health concerns across the lifespan, including obesity, adolescent depression and social anxiety (Freedman et al., 2003; Joinson et al., 2011; Blumenthal et al., 2009), these findings recommend further exploration into the timing and experience of puberty in females with ASD.

Objectives: (1) Describe the onset and symptoms of menses for females with ASD compared to NT, controlling for factors associated with menses, (2) compare reporting of menses between daughters and parents, and (3) explore the experience of puberty for females with ASD and their families.

Methods:  Mixed-method study combining self- and parent-report on web-based questionnaires with semi-structured interviews of parent-daughter dyads. Participants were females under 18 years with (ASD Group) and without (NT Group) a diagnosis of ASD who had at least one menstrual cycle in the previous six months, and one parent.

Results: A multiple regression model was significant (F(11, 54) = 2.19, p = 0.03), with diagnoses of ASD in the daughter or a sibling representing significant predictors for early AAM (β = -0.38, p > 0.01; β = -0.39, p > 0.01). Parents of both ASD and NT participants reported similar AAM as their daughters. No differences were observed in characteristics of the menstrual cycle or symptoms across groups. Neurotypical parents underreported the severity and occurrence of their daughter’s menstrual symptoms across all reported areas. ASD parents underreported level of menstrual pain, physical and behavioral symptoms, while reporting more pre-menstrual, emotional and dysmenorrhea symptoms. Participants discussed several themes, including (1) preparation for puberty, (2) the physical experience of menses, (3) speed bumps on the road through puberty, (4) managing the everyday, (5) looking to the future, and (6) reflective advice.

Conclusions: Controlling for known covariates, we observed a significant decrease in AAM for those reporting a diagnosis of ASD in the daughter or a sibling, suggesting the possibility of an underlying developmental mechanism common to both ASD and AAM. The participants underscored the unique and varied experiences of puberty for females with ASD, which highlights the importance of qualitative research for a holistic understanding of adolescence in females with ASD. These findings raise concerns for the health of women with ASD across the lifespan. It is critical that practitioners serving this population appropriately screen for associated health outcomes, as well as work towards establishing evidence-based education and resources for these families.