By Dr Michelle Garnett and Prof Tony Attwood
*The terms female, girl, and woman when used in this article refer to individuals assigned female at birth.
Our current understanding of how hormonal changes impact autistic individuals, and whether this differs from the impact for non-autistic individuals is still emerging. Because the female presentation of autism was unknown until recently, most research was conducted with autistic males. Thus, a particularly neglected area of research is the impact of hormonal transition on autistic females. Clinically, we have observed the devastation of the onset of puberty and menopause for our autistic females. In this blog we look at the current status of research on hormonal changes in autistic girls and women, and the implications of this research.
Current research on hormonal change and autism for females
Moseley and colleagues (2020) explored the experience of seven autistic individuals aged 49 to 63 years and found that the menopausal transition was associated with several difficulties. The three emerging themes from this research were: (1) a lack of knowledge and understanding amongst professionals; (2) increased autistic features, including high levels of anxiety, greater difficulties with social communication and relationships, executive functioning difficulties, and difficulties with sleep and self-care; and (3) difficulties finding help and support.
Two studies have found increased premenstrual symptoms for autistic women. Lever and Gertz (2016) reported that 21% of autistic women, compared with 3% of non-autistic women suffered from premenstrual dysphoric disorder (PMDD). Obaydi and Puri (2008) found that 92% of autistic women with learning disabilities experienced PMDD compared with 11% of non-autistic women with learning disabilities.
Groenman and colleagues (2022) found that neurodivergent (autistic, ADHD or both) women experienced increased menopausal symptoms, including hot flushes, poor sleep, increased anxiety, poor concentration, memory lapses. Menopausal symptoms are known to be caused by fluctuations in oestrogen production. Experiencing more symptoms may mean that hormonal balance is different in neurodiverse women. Another possible explanation is that neurodiverse women may be more sensitive to their body during menopausal transition due to their overall increased sensory sensitivity, and thus experience menopausal symptoms more intensely.
We know that psychological ill-health, including increased levels of depression and anxiety, increases each of the diagnostic criteria of autism, specifically social communication difficulty, rigidity, difficulty tolerating change and transitions, different sensory processing systems, and theory of mind difficulties. Since menopause tends to decrease psychological health, it is likely that increased autistic features will occur. It is also the case that enjoying a better sleep quality is associated with less impact of menopause (Duffy et al, 2013), and many autistic adults suffer poorer sleep quality and quantity.
Simantov and colleagues (2022) provide one of the largest studies to date in this area, involving 361 autistic women in a larger pool of 1230 women, some of whom had autistic characteristics, but were undiagnosed. They found that conditions related to sex hormones, such as testosterone and estrogen, were associated with both being autistic and having autistic traits, including higher rates of reproductive system diagnoses, prediabetic symptoms, irregular puberty onset and menstrual length. The authors interpreted these findings to suggest that autistic women have a greater risk of endocrine health issues and that these issues are suggestive of an indirect neuroendocrine underpinning to autistic characteristics.
Difficulties with Communication for Autistic Women in a Healthcare Setting
Although physical and mental health issues occur more often for autistic women compared to non-autistic women, they experience more difficulties in communicating with healthcare practitioners. For example, Lum, Garnett & Connor (2014) found they experienced more healthcare anxiety, greater difficulties with communication whilst under emotional distress, anxiety related to the presence of other patients in the waiting room, more challenges accessing support during pregnancy, and more difficulty communicating their pain and needs during childbirth. Perhaps not surprisingly, only 75% of the autistic women disclosed that they were autistic to their health professional due to concerns about stigma.
What are the Implications of Research to Date on Hormones and Autistic Girls & Women?
- Autistic women and mothers of autistic girls need to be aware that conditions linked to the sex hormones, such as menstrual cycle and menopausal issues, but also polycystic ovarian syndrome (PCOS) and other reproductive health issues, and prediabetic symptoms such as frequent urination and excessive thirst, are more common for autistic females.
Increased awareness will assist in being prepared to advocate for themselves or their children during visits to the GP and specialists.
- Healthcare practitioners, including those concerned with mental health, need to be aware of the greater risk of the impact of hormonal changes and the increased risk of both physical and mental health conditions for autistic girls and women. The mortality rates for autistic people indicate that they are three times more likely to die early from both, including death due to suicidality. They can be aware of the communication difficulties commonly experienced by autistic women during healthcare visits and make accommodations to decrease anxiety, for e.g. by offering a quieter waiting room space, asking if the room is comfortable in terms of sensory experiences, and using visual aides to assist in describing pain and emotions.
- Autistic women can search to find a GP in their area who understands autism and can educate their GP on their own specific needs, as they understand them, and they can request that their GP help them to discover more needs over time.
- For autistic women we know that the impact of menopause is less for those who receive stronger social support, have greater physical fitness, have developed good coping strategies and who sleep well. Hence, increasing one’s social support network, incorporating body movement, learning new coping strategies for depression and stress and anxiety, and investing time in gaining good sleep are each likely to decrease the impact of menstruation and menopause.
- For autistic women It is worrying that during peri-menopause and menopause some autistic women experience significant decreases in their functional capacity, leading to less capacity for self-care and childcare. This difficulty needs to be recognised by funding bodies such as the NDIS, where the level of autism may become more severe during times of significant hormonal change.
Where to From Here?
If you are interested in learning more about autism and its impacts for autistic women, our online courses may be of interest:
References
Duffy O. K., Iversen L., Aucott L., Hannaford P. C. (2013). Factors associated with resilience or vulnerability to hot flushes and night sweats during the menopausal transition. Menopause, 20(4), 383–392. https://doi.org/10.1097/gme.0b013e31827655cf
Groenman, A. P., Torenvliet, C., Radhoe, T. A., Agelink van Rentergem, J. A., & Geurts, H. M. (2022). Menstruation and menopause in autistic adults: Periods of importance? Autism, 26(6), 1563–1572. https://doi.org/10.1177/13623613211059721
Lever A. G., Geurts H. M. (2016). Psychiatric co-occurring symptoms and disorders in young, middle-aged, and older adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 46, 1916–1930. https://doi.org/10.1007/s10803-016-2722-8
Lum, M., Garnett, M., & O’Connor, E. (2014). Health communication: A pilot study comparing perceptions of women with and without high functioning autism spectrum disorder, Research in Autism Spectrum Disorders, Volume 8, Issue 12, Pages 1713-1721, ISSN 1750-9467, https://doi.org/10.1016/j.rasd.2014.09.009.
Moseley RL, Druce T, Turner-Cobb JM. ‘When my autism broke’: A qualitative study spotlighting autistic voices on menopause. Autism. 2020 Aug;24(6):1423-1437. doi: 10.1177/1362361319901184. Epub 2020 Jan 31. PMID: 32003226; PMCID: PMC7376624.
Obaydi H., Puri B. K. (2008). Prevalence of premenstrual syndrome in autism: A Prospective Observer-Rated Study. Journal of International Medical Research, 36(2), 268–272. https://doi.org/10.1177/147323000803600208
Simantov T, Pohl A, Tsompanidis A, Weir E, Lombardo MV, Ruigrok A, Smith P, Allison C, Baron-Cohen S, Uzefovsky F. Medical symptoms and conditions in autistic women. Autism. 2022 Feb;26(2):373-388. doi: 10.1177/13623613211022091. Epub 2021 Jun 29. PMID: 34184558; PMCID: PMC8814970.
