Is it hot in here? Raising awareness of the perimenopause-menopause transition for Autistic and ADHD women

21 Oct

Over the course of her life, a woman* can experience various hormonal changes starting from pre-adolescence through to post-menopause. For adult women presenting to therapy at our clinic, the transition phase of perimenopause - menopause and how it intersects with Autism and ADHD, is often a hot topic of discussion for the over 40s in our individual sessions and groups.

Perimenopause is the stage of life leading up to menopause, which is the day that marks 12 months since your last period. During perimenopause, the hormones estrogen and progesterone start to decline, creating a cascade of cognitive, physiological and emotional experiences that can vary in intensity. Think hot flashes, nights sweats, feeling itchy from the inside out that no amount of scratching will relieve, brain fog, increased irritability and moodiness, early morning waking or other sleep disturbance, changes in weight gain or distribution, just to name a few (we have seen lists of over 100 symptoms associated with this transition!). Women are also at risk of exacerbation or onset of mental health conditions such as anxiety and depression due to the impact of declining estrogen on serotonin release.

On average, the perimenopausal period is four years but can range from 1 – 10 years. That’s a long time! Especially when you may also be juggling work, parenting, being a partner, supporting aging family members, and trying to make time for your own basic health and wellbeing needs.

Given that hormones can impact upon our brain chemistry, what happens when you have a different neurotype compared to the general population? Despite this transition impacting on approximately half of the general population, historically there has been very little research in this area. Women have reported feeling unseen in the medical space and were not even included in medical research until the 1990’s and are still underrepresented (Balch, 2024). This is even more so for women who are Autistic and/or ADHD in the context of missed or late diagnosis, lack of understanding of more nuanced and internalised presentations, and, until around 10 years ago, we had to differentiate between Autism and ADHD in the diagnostic process. Here’s some of what we know so far from the literature, health professional advocacy, lived experience accounts, and clinical experience.

ADHD

Estrogen is understood to affect the release of neurotransmitters including dopamine. Given that dopamine is related to ADHD symptoms, declining estrogen levels can exacerbate executive functioning and attentional differences (e.g., increased difficulties with focusing and concentration). A reader survey sponsored by ADDitude Magazine and conducted by Wasserstein et al. (2023) revealed that 85% of the 2653 respondents aged 46 or older identified as ADHD. Respondents indicated that the most pronounced symptoms or impacts related to cognitive process including an increased sense of overwhelm, brain fog and memory issues, procrastination, poor time-management, inattention/distractibility and disorganization.

Due to hormonal fluctuation during perimenopause and eventual estrogen depletion during menopause, some women may receive an initial diagnosis of ADHD in adulthood. In the Wasserstein et al. (2023) survey, most ADHDers had received their diagnosis in adulthood (e.g., 43% were diagnosed between 41 and 50 years), often during the perimenopausal years (e.g., 61% reported that ADHD had the greatest impact on their daily lives between 40 and 59 years of age). Dorani et al. (2021) found that peri- and postmenopausal participants reported more symptoms associated with declining estrogen levels (e.g., hot flashes, excessive sweating, sleep disturbance, mood changes) than the general population.

While we don’t yet know the prevalence of hormone-related mood disorders and related difficulties due to the lack of studies focusing on women with ADHD, clinical experience and emerging literature in this area suggest that they are at risk for more severe mood changes during episodes of hormonal fluctuations. In the Wasserstein et al. (2023) survey, anxiety and depression were the most common co-occurring conditions, which is consistent with the broader research on ADHD and mental health.

There appears to be some light at the end of the tunnel with a lessoning of complaints reported in those aged 60 and over, which could be due to a lessoning of or adaptation to symptoms as they moved out of the transition years (Wasserstein et al., 2023).

Autism

For Autistic women, there can be some unique challenges and experiences related to both autistic traits and the hormonal changes that occur during this period.

Some of the areas that may present challenges include:

Heightened Sensory Sensitivity - Autistic women often have heightened sensory sensitivities, and perimenopause can exacerbate these sensitivities, like finding noise and lighting levels even more intolerable. Changes in temperature regulation, for example, can make hot flashes particularly uncomfortable, and increased sensitivity to pain or discomfort can make other symptoms more challenging.
Changes in Executive Functioning - Perimenopause can impact cognitive functioning, including memory, concentration, and executive function. Autistic women may already experience challenges in these areas, and the hormonal fluctuations of perimenopause can worsen these difficulties, leading to increased struggles with organisation, planning, and multitasking.
Emotional Regulation - Mood swings, irritability, and anxiety are common symptoms of perimenopause. For Autistic women, who may already have difficulties with emotional regulation, these symptoms can be particularly intense. This can lead to increased meltdowns, shutdowns, or difficulty managing social interactions.
Communication and Social Interactions - The hormonal changes during perimenopause can affect social communication, potentially making it harder for autistic women to navigate social situations. This might result in increased social withdrawal, misunderstandings, or a greater need for alone time.
Sensory Changes and Physical Symptoms - Autistic women might experience changes in their sensory processing, making the physical symptoms of perimenopause, like joint pain, fatigue, and headaches, more difficult to cope with. They may also find it challenging to communicate these experiences to healthcare providers, leading to underreporting or mismanagement of symptoms.
Menstrual Changes - Changes in menstrual patterns, such as heavier or more irregular periods, can be distressing for Autistic women, particularly if they have difficulty coping with changes in routine or sensory experiences related to menstruation.
Increased Anxiety or Depression - Hormonal fluctuations can exacerbate pre-existing mental health conditions, such as anxiety or depression. Autistic women, who may already be more prone to these conditions, could find that their symptoms worsen during perimenopause.
Need for Routine and Predictability - The unpredictability of perimenopausal symptoms can be challenging for autistic women who rely on routine and predictability. Sudden changes in mood, energy levels, or physical well-being can disrupt their daily lives and lead to increased stress or anxiety.
Difficulty in Accessing Appropriate Healthcare - Autistic women may face challenges in accessing appropriate healthcare during perimenopause, particularly if they struggle with communicating their symptoms or if healthcare providers are not knowledgeable about how autism affects the experience of perimenopause. This can lead to underdiagnosis, misdiagnosis, or inadequate treatment.
Social and Support Needs - Many Autistic women may have smaller social networks or may not feel comfortable discussing personal health issues with others. This can result in feelings of isolation during perimenopause, particularly if they don't have access to supportive communities or resources that understand their unique needs.

Some Autistic people report that menopause played a role in discovering that they are Autistic, as their Autistic characteristics became more apparent during menopause or perimenopause (Moseley et al., 2020). Some Autistic people with ADHD may also report that their ADHD traits became more prominent.

Each person’s experience of the transition from peri- to post-menopause will be unique. By increasing our general understanding of how this differs for members of the Autistic and/or ADHD community we can continue to shape perceptions and develop supports and strategies that are more closely aligned with their needs. As we sit down to prepare this blog, it is both World Menopause Month and ADHD Awareness Month. What better time to highlight the importance of continuing these conversations to increase awareness, to validate and normalise individual experiences, and to help people prepare for and navigate this transition.

*This blog uses gendered language to reference women experiencing menopause. We acknowledge that people of various genders experience menstruation and menopause, and the complexities that gender and hormones can add to this experience.

References

ADDitude. (2024). “ADHD impairment Peaks in Menopause, According to ADDitude Reader Survey”. https://www.additudemag.com/menopause-symptoms-adhd-survey/

Antoniou, E., Rigas, N., Orovou, E., Papatrechas, A., Sarella, A. (2012). ADHD Symptoms in Females of Childhood, Adolescent, Reproductive and Menopause Period. Materia Socio-Medica, 33(2),114-118. doi: 10.5455/msm.2021.33.114-118

Balch, B. (2024). “Why we know so little about women’s health”. https://www.aamc.org/news/why-we-know-so-little-about-women-s-health

Dorani, F., Bijlenga, D., Beekman, A.T.F., van Someren, E.J.W., Kooij, J.J.S. (2021). Prevalence of hormone-related mood disorder symptoms in women with ADHD. Journal of Psychiatric Research,133,10-15. doi: 10.1016/j.jpsychires.2020.12.005

HealthDirect.gov.au (2024) https://www.healthdirect.gov.au/perimenopause

Jack, C. (2024). “Why Autistic Women’s Experience of Menopause is Different”. https://www.psychologytoday.com/au/blog/women-with-autism-spectrum-disorder/202403

Moseley, R, L., Druce, T., & Turner-Cobb, J, M. (2020). ‘When my autism broke’: A qualitative study spotlighting autistic voices on menopause. Autism, 24(6), 1423-1437.

Wasserstein, J., Stefanatos, G. A., & Solanto, M. V. (2023). 2 perimenopause, menopause and ADHD. Journal of the International Neuropsychological Society: JINS, 29, 881. doi: https://doi.org/10.1017/S1355617723010846