Hi, I’m Sam (she/her). A late diagnosed neurodivergent woman, a tenacious midlife struggler, and an advocate for people in autistic perimenopause here at The Autistic Perimenopause: A Temporary Regression AKA The Auti Peri.
I am delighted to be the host of The Auti Peri Q&A Series!
In this series, I host a Q&A interview with a fellow autistic person about their experience of the menopause transition.
Everyone’s experience of the autistic menopausal transition is different. I aim to elevate the voices, lived experiences and reflections of autistic people’s menopausal transition.
Autistic perimenopause is a highly individual, dynamic and sometimes prolonged life stage caused by reproductive hormonal fluctuations. As autistics can be highly sensitive to bodily and environmental, we may experience fluctuations as physical, psychological and cognitive symptoms.
Academic research into auti peri is in it’s early stages, yet it is a matter of urgency that we bust the social taboo and get used to talking about this.
Today’s guest is Hannah Anstee (She/Her).
AuDHD. Writer & Business Coach. Empty Nester.
The Unmasked Woman on Substack: Here I write about living unmasked in a patriarchal, neurotypical, capitalist world.
Hannah lives in West Yorkshire, UK.
What does “autistic perimenopause” mean to you?
I don’t think I’d ever heard the term ‘autistic perimenopause’ before I came across your work. It made me stop in my tracks because while both those words were being used by me a lot, I’d never paired them together. But it totally made sense because when we discover we’re autistic, every single area of our lives needs to be re-evaluated with this new layer of understanding.
This is what I was already doing in all other areas in my life, including the work I do with other neurodivergent women as a business coach. Ignore/abandon everything we think we think we know, have been told, etc, and instead, look with fresh eyes, considering our specific needs and sensitivities while trusting our intuition.
When did your autistic perimenopause symptoms start and what were/are they?
It started with severe middle back pain when I was 40. It was so bad that I couldn’t walk without experiencing excruciating spasms.
The CFS/ME (chronic fatigue syndrome/myalgic encephalomyelitis) started when I was 42, and I was also diagnosed with Hypothyroidism at 44. Combining these with Autistic Burnout, I had now had a trio of energetic conditions and a mind and body breakdown. I became severely disabled and lost everything—my ability to walk, cook, clean, work, socialise, and go outside.
I had to move back in with my mum so she could care for me. It was four very difficult and dark years. It took me a long time to work out what was burnout, what was thyroid, and what was CFS, because they’re all so similar. A deep depression set in, and I experienced ‘passive suicide ideation’, which is where you don’t have any plans to harm yourself, but there are feelings of not wanting to be here because the emotional pain is so unbearable. At the time, I didn’t know if these feelings were because I’d lost my quality of life alongside my identity or whether there was something else going on.
I now know there was something hormonal also happening because when I started taking HRT, my depression lifted, and my mood swings stopped. Even though I’ve been through so much physically, it’s the mood swings I’ve found the hardest to handle.
My other, more ‘traditional’ symptoms are irregular periods and hot flashes. I’m on the lowest dose of HRT because I’m sensitive to medication, but the Doctor advised I try a bit more estrogen to see if it would help with hot flashes. After only three days of taking it, my mood plummeted and l immediately stopped.Eventually, I was able to untangle my ‘trio of diagnoses’ and I’m now in great health. I've been symptom-free for over 18 months. It sounds simple and easy when I say that so quickly, but none of it was. I have so much compassion for all those who are still struggling with these energetic challenges. They are complex and difficult to understand. The doctors will tell you there’s no cure for CFS and that you’ll never recover, but this isn’t true, and I’m proof of that. It was only when I took my health into my own hands that I healed. I did this using a mind/body approach.
I also have ADHD, and these symptoms became exacerbated, but then they seemed to calm down, and I wasn’t sure why. But last year, I attended the ADHD & Women Summit in Manchester and learned about the powerful effect of estrogen (lack of it) on ADHD from Dr Anneka Tomlinson, at the University of Oxford. So it seems the HRT is regulating my ADHD symptoms, and I don’t need as many coping mechanisms in place. It’s still there, and I need to be mindful of warning signs that I’m about to spiral, but it just feels more manageable.
What happened if/when you presented with autistic perimenopause to a healthcare professional?
I’d been going to the doctors in the UK for years, trying to get answers for all of my health problems, and nobody mentioned perimenopause. It was only when I presented stating that I thought I could be perimenopausal (fatigue, mood swings, etc) that I was offered treatment. I was offered HRT immediately and without having any hormone tests. I understand I’m lucky in this regard.
What has your treatment protocol been in managing your autistic perimenopause?
The first is the HRT, and I use the Evorel Sequi patches. The other main protocol that I’ve been engaging with for the last year is following a ketogenic diet alongside a fasting lifestyle via Dr Mindy Pelz’s work, which is based on the menstrual cycle, including perimenopause and menopause.
This has had phenomenally positive effects on my energy levels and on my cognition. It’s not an easy protocol to follow, and it won’t suit a lot of women. My kids have left home, so I only cook for myself, plus I work from home and therefore have control over my environment and routines, so it’s manageable for me. My autistic brain enjoys the rigidity and control of following such a strict eating plan.
I’ve always wanted to do weight training as I’m aware of the research on the benefits for perimenopausal women, but I’ve tried it many times and my body is just too weak. I don’t know if it’s because I spent so many years in bed or something else, but I’ll try it again soon.
How has your everyday life been impacted by autistic perimenopause (your caring/employment responsibilities, hobbies, relationships etc.)?
My life has changed in every single possible way, and the changes are mammoth. I’m just not the same woman - in a good way. A death and rebirth have happened, which I think happens to many when they experience a life-changing illness.
I give less of a fuck about most things. Things that used to rile me up or make me feel insecure, I just no longer care about. I’m no longer interested in being a good girl, playing a role, engaging in small talk, or going to events I’m ‘supposed’ to go to.
If people misunderstand me or misinterpret my words or actions (as is so often the case with autistic communication), then so be it, I’ll get over it. This liberation has a huge impact on my daily life because I no longer stop to talk to people I don’t like, sometimes I go out wearing my pajamas with haystack hair. I don’t bend over backwards to do stuff for people so they’ll like me. It’s a sense of freedom I’ve never enjoyed before.
Life is much slower now, especially at work. I start when I’m ready, I take very long lunch breaks, and finish when I want. I take a lot of time away from work in general which is hard for me because I love it. When my neural pathways are firing, I want to race somewhere but I’m learning to just chill the fuck out.
I’ve always been self-employed and entrepreneuralism is one of my special interests, so working has always felt pleasurable. But work is work, and understanding this and putting strong boundaries in place is key to my maintaining good energy levels.
I was health-conscious before, but my health is now my number one priority, and I incorporate wellness protocols into all of my routines. Every day I’ll do some kind of bodywork, whether that’s yoga, pilates, trauma-release, a self-massage, or even just a roll around on the floor. I also exercise regularly, usually hiking, but can be cycling or dancing. I also like doing energy work, which can be using tuning forks or meditation. All of this is a chore and can take hours a day, but if I don’t tend to my body and mind in this way, my body starts to hurt and my mental health suffers.
Are there things that make or have made your menopause transition especially difficult for you as an autistic person? If so, what kinds of things?
I’m not sure if this is an autistic thing, but I know that it affects all autistic women I know, and it’s the increased sensitivity and fluctuating energy levels we experience, even when in good health. It sounds like such a ‘nothing’, but it impacts me greatly because I never know how I’ll feel at a particular time or day, so it makes it difficult to commit and plan things. My keto diet has helped me immensely in terms of stabilising my energy, but it’s not a ‘done deal’, I still struggle sometimes, and I always struggle with my sensitivity, which prevents me from moving about in the world in the way that I’d like.
Are there things that could make or could have made your menopause transition easier for you as an autistic person? If so, what kinds of things?
The collapse of patriarchal, neurotypical capitalism?
What supports, resources and services are available to people experiencing autistic perimenopause where you live?
None that I know of.
What kinds of services, resources or supports would you find most helpful?
My favourite way of feeling supported is to read about other women’s experiences and that’s why I’m very grateful for the work you do here Sam.
What is the easiest way for you to access information about autistic menopause?
There is no way that I know of, besides your work, to access information about autistic menopause.
What would you wish for all people to know about autistic perimenopause?
Just how difficult it is. I’m doing well now but I haven’t actually hit menopause yetand probably won’t for some time so I’m always aware things could change. I have many friends who are struggling in so many ways, usually with burnout and/or chronic health complaints and they are getting very little support.
My opinion is that many of these co-occurring conditions are complex enough on their own, and when they’re combined, there’s a lack of knowledge, even within the mainstream medical system, about how they interact. For example, my dear friend who has AuDHD, Rheumatoid Arthritis, Fibromyalgia, AND fluctuating hormones which don’t respond well to HRT just hasn’t been able to get the support she needs for treatment here in the UK and has had to find a private specialist in the States.
We are the mothers, grandmothers, or carers of the world, and if we’re not okay, nobody’s going to be okay. So, investment and research into these complex co-occurring health issues need to happen quickly.
I hope you have enjoyed this Q&A. If you would like to be featured as part of this series, please message me. I’d love to share your story!
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