By Dr. Michelle Garnett, Professor Tony Attwood and Emma Hinze
*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 on non-autistic individuals is still emerging. Because the female presentation of autism was unknown until recently, most research was conducted with autistic males. A neglected area of research is the impact of hormonal changes on autistic females. Clinically, we have observed the psychological effects of the onset of puberty and menopause for our autistic females. In this blog, we look at the status of research on hormonal changes in autistic girls and women and the implications of this research.
Premenstrual Symptoms
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. However, a more recent study did not find that PMDD was significantly higher in autistic women compared with non-autistic women, being 14% and 9%, respectively (Greenman et al., 2022). We need further research to clarify if there is an association between Autism and PMDD.
There are differences regarding period pain. A recent thematic analysis of descriptions of dysmenorrhea (period pain) found that Autistic women have heightened interoception of their period pain experiences (Gray and Durand (2023). One of the research participants explained, “…something is happening within my body, and it sort of out of sorts. I struggle to remove my focus from it.” Another research participant said I can’t get my mind off it”. Period pain for many was acutely felt and thus consumed their thoughts and feelings, reducing work productivity and quality of life.
There was also a theme of difficulties with pain communication with comments such as “I’m not very good at describing how pain is or how any experience is when I am not right in the middle of it.” Another quote from the research is informative: “I don’t display pain like they think I should display pain. This will affect the descriptions of period pain to healthcare staff and the provision of effective pain relief.
Hormonal system
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.
That hormonal factors affect the mental health of Autistic women was also a finding in research with autistic mothers. They found that 60% suffered prenatal and/or postnatal depression (Pohl et al., 2021)
Menopause
Menopause is a normal part of ageing for individuals assigned female at birth, with 90% of women experiencing menopause by age 56. A question has arisen as to whether autistic women are more likely to experience premature or early menopause. A study of nearly 27,000 autistic women in the USA found no difference in the age of menopause (Benevides et al., 2024).
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 during menopause, 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.
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, and 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 bodies during the menopausal transition due to their overall increased sensory sensitivity and thus experience menopausal symptoms more intensely.
A more recent study by Brady and colleagues (2024) described a thematic analysis of 24 autistic women’s experience of menopause. Some described menopause as ‘tumultuous’ or ‘catastrophic’, with heightened sensory sensitivity, social withdrawal, increased depression and suicidality. There were also descriptions of increased difficulties with executive functioning and experiencing brain fog. Menopause was described as increasing the intensity of autism, ADHD and mental health issues. There was a spiral of distress and increased emotional volatility, and camouflaging autism became increasingly difficult. All these themes contributed to a greater risk of autistic burnout. There was also the issue of coping with increasingly unpredictable menstrual cycles. One of the research participants said it was like “Going through puberty all over again.” They identified a theme of healthcare professionals being unfamiliar with and lacking training in autism but also described the benefits of sharing stories with other neurodivergent women.
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, and Connor (2014) found they experienced more healthcare anxiety and greater difficulties with communication whilst under emotional distress, with high levels of 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 professionals 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 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 help people be prepared to advocate for themselves or their children during visits to the GP and medical 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 conditions, including death due to suicide. They can be aware of the communication difficulties commonly experienced by autistic women during healthcare visits and make accommodations to decrease anxiety, for example, 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 for a GP in their area who understands autism. They can educate their GP on their own specific needs as they understand them, and they can request that their GP help them discover more needs over time.
We also 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 sleep well. Hence, increasing one’s social support network, incorporating body movement, learning new coping strategies for depression, stress, and anxiety, and investing time in gaining good sleep is likely to decrease the impact of menstruation and menopause.
It is worth noting 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?
We have created two half-day courses, one for autistic girls and one for Autistic Women, that will be live webcast on Friday 6th September. We describe the strengths and abilities commonly experienced by autistic girls and women, as well as key challenges, including self-understanding, developing an authentic self, friendships, executive function, including ADHD, developing adult relationships, self-advocacy and issues of mental health, including anxiety, depression, autistic burnout and eating disorders as well as navigating school and the workplace. Our presentation is based on recent relevant research and our combined 80 years of experience in autism.
References
Benevides et al (2024) Paper presented at INSAR, Melbourne, May 2024
Brady, M. J., Jenkins, C. A., Gamble-Turner, J. M., Moseley, R. L., Janse van Rensburg, M., & Matthews, R. J. (2024). “A perfect storm”: Autistic experiences of menopause and midlife. Autism, 28(6), 1405-1418. https://doi.org/10.1177/13623613241244548
Gray, L.J., Durand, H. Experiences of dysmenorrhea and its treatment among allistic and autistic menstruators: a thematic analysis. BMC Women’s Health 23, 288 (2023). https://doi.org/10.1186/s12905-023-02370-8
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
Pohl, A.L., Crockford, S.K., Blakemore, M. et al. A comparative study of autistic and non-autistic women’s experience of motherhood. Molecular Autism 11, 3 (2020). https://doi.org/10.1186/s13229-019-0304-2
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.
