By Dr Michelle Garnett and Professor Tony Attwood
What do we know about the interplay between hormonal changes and autism for females*?
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. Many autistic girls typically start to have friendship difficulties and more anxious meltdowns after they turn 9 years old, which is around the time that the social world becomes more difficult to navigate, but it is also a time of the beginning of hormone change. Globally, the median age of the recognition of autism for females coincides with the beginning of puberty, around 12 years old. We know that the onset of puberty is associated with, amongst other changes, a surge in anxious and depressive symptoms, as well as increased reactions to stress. It is unknown whether the hormonal changes are increasing the signs and features of autism, leading to a referral for a diagnostic assessment.
In our clinical practice, we commonly hear autistic women refer to the intense difficulties of menopause, another time of increased hormonal change and fluctuations. A recent qualitative study (Moseley et al, 2020) explored the experience of seven autistic individuals aged 49 to 63 years and found that the menopausal transition was associated with a number of 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.
Current research on hormonal change and autism for females
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.
In a study this year, Groenman and colleagues (2022) did not find that PMDD was significantly higher in autistic women compared with non-autistic women (14.3% and 9.5% respectively) but did find that autistic women experienced increased menopausal symptoms. Interestingly, increased menopausal symptoms, such as hot flushes, poor sleep, increased anxiety, poor concentration, memory lapses (not uro-genital, eg vaginal dryness) were also found in non-autistic women who had ADHD compared to neurotypical women. 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, however this has not been researched to date. 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.
There may well be an interplay between hormonal levels, neurodiversity, poor psychological health, poor sleep, and sensory sensitivity that increase menopausal symptoms for neurodiverse women.
Where to from here?
More research is needed to further delineate the relationship between hormonal transitions and autism, particularly for autistic females. The emerging picture is that hormonal action that increases anxiety and depression, and interferes with a good sleep, will likely increase features of autism, leading to difficult menstruation periods, perimenopause and menopause.
First-line professionals including GPs and mental health professionals need to be aware of the potential negative impact of hormonal change and fluctuations on autistic women, to be able to provide appropriate understanding and supports.
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.
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.
If you are interested in learning more about autism and its impacts for autistic women, we are hosting a full day webcast for autistic women themselves, and the family members in professionals who support them. We hope to see you there!
We are becoming increasingly aware of the various impacts of periods of hormonal transition for autistic women. With greater awareness through education for autistic girls and women, and their family members and the professionals who support them, there will be more support and understanding for our autistic women, and better outcomes, such as quality of life and well-being.
*The terms female, girl and woman when used in this article refer to individuals assigned female at birth.
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
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