In this blog, Dr Deborah Leveroy explores the impact reproductive milestones such as menopause can have on an autistic woman’s life.
Autistic women’s lived experience has been historically neglected in the research arena.
Even less research exists concerning the experiences of autistic women during the peri and menopausal phases of life. However, a recent study found that autistic menopausal women experience more menopausal complaints than non-autistic women. The complaints included psychological aspects (such as depression), and somatic ones (headaches, joint and muscle aches). The autistic women stated that the higher the menopausal symptoms, the increased frequency and challenges related to their autism.[i]
Other studies suggest that the increase in menopausal complaints in autistic women is caused by a difference in hormonal balance for autistic women. [ii] Another explanation is that overall high levels of sensory sensitivity mean that women are more sensitive to bodily changes and sensations during the perimenopause and menopause stages. [iii]
But what does all this mean for the individual?
What is the actual impact of the (peri)menopause on one autistic woman’s day-to-day life?
“Since childhood, I’ve felt a need to be in control and understand what’s happening next.
As a kid, I would drive my mum mad asking ‘What are we doing today/this afternoon/tonight/ tomorrow?
As a teen and young adult, this developed into a highly organised dairy system (complete with post-it notes, and a color-coded diary) and a highly structured and predictable working week. (I found university unbearable – 10 hours of lectures – what should I do with the rest of the week?!)
One of the biggest challenges I face today, as I experience perimenopause, is change. Gone are the days of regular predictable periods, of being able to plan and anticipate was coming around the corner.
Suddenly, I don’t recognize my body, it’s not playing by the ‘rules’.
It’s become unpredictable, and unrecognisable. One week I will be fine, the next I will have a whole week of 4 a.m. night sweats coupled with palpitations.
Other weeks I will feel completely drained by our regular team meeting at work. I’ve noticed that my new unpredictable life, has heightened negative pre-existing anxiety, and I now have greater difficulty regulating these emotions.
I’m told by my GP that the drop in progesterone during perimenopause can lead to heightened stress and anxiety.
One of my unhealthy ‘coping mechanisms’ is food. I’ve always been a ‘foodie’ but since these changes began, I’ve started eating more for comfort, rather than for pleasure or necessity. Eating for comfort soothes me in the short term, and I guess it is a form of stimming or self-soothing. But the resulting weight gain and sluggish feelings make me feel even more out of step with my body.
I’ve recently begun working with a strategy coach, to develop healthy coping strategies to explore the impact of perimenopause on my autism.
We’ve put in small routines into my day, to break things down and make things more manageable.
We’ve worked on breathing and mindful strategies to counter some of the physical and psychological challenges.
We’re looking at ways to manage my energy levels and strategies to improve my thinking skills and memory.Part of the work is recognising that I’m going through a transitory stage in life, that I can’t predict or control, and that that is ok. However, I’m starting to feel that I’m developing some valuable new tools to help me navigate these new experiences and hopefully come out of it with increased self-awareness and resilience”.
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References:
[i] 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
[ii] Gasser B. A., Kurz J., Dick B., Mohaupt M. G. (2020). Are steroid hormones dysregulated in autistic girls? Diseases, 8(1), Article 6. https://doi.org/10.3390/diseases8010006
Pohl A., Cassidy S., Auyeung B., Baron-Cohen S. (2014). Uncovering steroidopathy in women with autism: A latent class analysis. Molecular Autism, 5, Article 27. https://doi.org/10.1186/2040-2392-5-27
Ingudomnukul E., Baron-Cohen S., Wheelwright S., Knickmeyer R. (2007). Elevated rates of testosterone-related disorders in women with autism spectrum conditions. Hormones and Behavior, 51(5), 597–604. https://doi.org/10.1016/j.yhbeh.2007.02.001
Acevedo B., Aron E., Pospos S., Jessen D. (2018). The functional highly sensitive brain: A review of the brain circuits underlying sensory processing sensitivity and seemingly related disorders. Philosophical Transactions of the Royal Society B: Biological Sciences, 373(1744), Article 20170161. https://doi.org/10.1098/rstb.2017.0161
Schauder K. B., Bennetto L. (2016). Toward an interdisciplinary understanding of sensory dysfunction in autism spectrum disorder: An integration of the neural and symptom literatures. Frontiers in Neuroscience, 10, Article 268. https://doi.org/10.3389/fnins.2016.00268
Dr. Deborah Leveroy is Neurodiversity and Inclusion Lead at neurobox. She works with organisations to advance neuro-inclusion strategy and practice. Deborah has a PhD in Dyslexia, inclusion and performer training from the University of Kent.
Her research is published by Routledge in peer-reviewed journals and edited collections. Current research interests include Neuroinclusive return to work practices and remote working. Previous roles include Disability Advisor for Remploy’s BBC workplace adjustment contract, Strategy Coach and Workplace Needs Assessor for PAM occupational health and Study Skills Tutor for several DSA providers.
