Facing Puberty: Menses in Females with Autism Spectrum Disorder

Background: As children with Autism Spectrum Disorder (ASD) age, challenges posed by their diagnosis are supplemented with the common challenges of growing up (Fong, Wilgosh, & Sobsey, 1993; Seltzer et al., 2003). Puberty may pose unique challenges for females with ASD, who face the additional challenges with the onset of menses. Age at menarche and menstrual symptom presentation are known risk factors for significant mental and physical health concerns across the lifespan, including breast cancer, coronary heart disease, adolescent depression and social anxiety (Stoll, Vatten, & Kvinnsland, 1994; Lakshman et al., 2009; Blumenthal et al., 2009; Kaltiala-Heino et al., 2003). Recent findings suggest that females with ASD may experience menarche incongruent to and have more severe menstrual symptoms than their peers (Burke et al., 2010; Hamilton, Marshal, & Murray, 2011; Hamilton et al., 2012; Ingudomnukul et al., 2007; Knickmeyer et al., 2006; Pohl et al., 2014; Whitehouse et al., 2011). These findings strongly recommend a more in-depth and detailed exploration into puberty and its manifestation in females with ASD.

Objectives: (1) Characterize the onset and presentation of menses for females with ASD, (2) illustrate potential differences in onset and presentation of menses between females with ASD and their typically developing (TD) peers, and (3) compare reporting of menstrual symptoms between daughters and their parents.

Methods: Web-based surveys on age at menarche and menstrual symptoms using both self- and parent-report on the daughter. Autism networks, including research communities, electronic newsletters and community events, are used to identify parents of and females with and without ASD under the age of 18, who have experienced menarche, and have had at least one cycle in the previous six months.

Results: Preliminary Analyses (n = 9, anticipated n = 200): Participants were predominately non-Hispanic White (77.8%); daughters were aged 14-16 years and all parents participating were mothers. Females with ASD reported earlier age at menarche (M = 12.63 ± 1.24 years) compared to their TD peers (M = 14.25 ± 1.06 years); ASD Parents reported slightly later age at menarche (M = 12.96 ± 1.71 years), whereas TD Parents reported slightly earlier age at menarche than their daughters (M = 13.81 ± 1.16 years). Notably, females with ASD reported greater levels of pain related to their cycle (M = 7.5 ± 0.71: 1-10 Scale) than their peers (M = 6.50 ± 2.12) and both ASD and TD parents reported much lower levels of menstrual-related pain for their daughters (ASD: M = 2.5 ± 0.71; TD: M = 4.67 ± 4.62). Further, females with ASD endorsed more words to describe menstrual pain, such as stabbing, cramping and aching, and reported more emotional symptoms related to their cycle, such as feeling teary, withdrawn, and overwhelmed. 

Conclusions: Females with ASD may experience menarche earlier and may have more physical, behavioral and emotional symptoms related to their cycle than their typically developing peers. Both ASD and TD parents tended to under-estimate key menstrual variables, suggesting that parent-report of menses and menstrual symptoms in these populations should be carefully interpreted.