The Auti Peri Q&A: Elly Marie

"It may seem like autistic perimenopause is going on for a long time, but eventually our symptoms will pass and a whole new stage of our life will begin."

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 environemntal, 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 or urgency that we bust the social taboo and get used to talking about this.

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Today’s guest is Elly Marie (she/her), creator of Nearly Me on Substack: “I am a personal essayist, bringing in my experience as a long-time practising Buddhist, ex-management consultant and trainee psychotherapist; alongside being part of the LGBTQIA+ and polyamorous communities.”

Elly Marie lives in Birmingham, UK.

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Elly Marie is now working on setting up a new business called Neuro Nirvana Collective which she can run from home at a much gentler pace here on Substack.

This is specifically aimed at helping neurodivergent and chronically ill people manage their conditions through mindfulness courses, ND friendly networking and body doubling opportunities.

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What does “autistic perimenopause” mean to you?

Because I found out about my AuADHD after my menopause happened, I guess for me it’s all about stripping away the masks, the pretences that I’ve had all my life.

I feel like a new person and I often say I really don’t know who I am anymore and I definitely don’t know who I am becoming. So I guess it means quite a lot to me really now I think about it.

When did your autistic perimenopause symptoms start and what were/are they?

In April 2023 I went in for a hysterectomy. I nearly died that day thanks to an anaphylactic reaction to the anaesthetic. I spent until February 2024 bedbound recovering from that.

I was absolutely terrified when I managed to get my hysterectomy rescheduled for the end of March 2024, but it actually went okay and I was out of hospital within a few days.

A few weeks later the menopause hit me big time like a truck!

An Apology to my Body

What happened if/when you presented with autistic perimenopause to a healthcare professional?

I mean, I never used the term autistic perimenopause before my actual menopause.  Looking back, now knowing all the symptoms, I probably was in perimenopause but I was just not aware of it and neither were the doctors.

Main issues were rage, crippling pain throuout my body, high temperature suddenly for no reason and fatigue beyond anything I had felt before. 

It would’ve been great if the doctors actually had any useful advice. They don’t get trained much here in the UK on the menopause though which seems ridiculous. Half the population go through menopause.

Why is not more time and effort put into it from a research point of view, and training medical staff?

What has your treatment protocol been in managing your autistic menopause (medical, lifestyle, alternative therapies etc.)?

I have been put onto HRT patches as without it I was suffering something called menopausal rage. I was literally raging angry from the moment I woke up to the moment I went to sleep.

I have never known such anger in my life.

I am a Buddhist and usually calm so it came as quite a shock to me!

HRT stopped that from happening so I would advise anybody at whatever stage of the menopause if the anger gets too much and seems completely out of alignment with who you are. It really is worth looking into HRT.

Now, I’m quite complicated (as I am sure many of us are) because I have just been diagnosed with fibromyalgia and I’m on the waiting list to find out if I have ME/CFS. So I already need to do a lot in order to survive.

I have to pace my energies. I can’t run around like I did in my pre-menopause times.

I have gone to acupuncture, in order to try and help my fatigue and painful body, which has helped temporarily.

I already practice meditation and mindfulness, both of which have helped me cope with the emotional dysregulation that has overwhelmed me.

How has your everyday life been impacted by autistic menopause (your caring/employment responsibilities, hobbies, relationships etc.)?

Thanks to the stripping back of everything, I have found that I can no longer be a self employed management consultant. I simply do not have the energy to be running around the country anymore.

I also don’t have the emotional regulation that I did to deal with boardrooms and business life in general. I gave up my business in 2023 as a result. 

I am now working on setting up a new business called Neuro Nirvana Collective which I can run from home at a much gentler pace here on Substack. This is specifically aimed at helping neurodivergent and chronically ill people manage their conditions through mindfulness courses, ND friendly networking and body doubling opportunities. 

At home my relationship with my husband and my partner have both changed incredibly (we are all polyamorous). Our dynamics have changed and that’s not necessarily a bad thing. We have explored issues that came up and had to really up our communication levels to new heights which has strengthened all relationships.

Couples counselling, alongside practicing  patience and loving kindness helped enormously. Having practised mindfulness and meditation techniques for 25 years has been invaluable in maintaining my relationships during the menopause. 

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?

One of the things I have realised is that I am incredibly sensitive to my environment and that includes my clothes. I have had made sure I only wear clothes that feel good for my body. For instance, I no longer wear jeans because they feel restrictive and the denim is too heavy against my skin.

I no longer feel bad for needing to wear a fleece and a head scarf every day because I find those items soothing.

I also have a huge list of food based sensitivities which I am now embracing and not shying away from letting others know my needs. 

Due to the chronic fatigue and the heightened sensitivities, I find that I no longer go out as much as I used to. I am very sensitive to sound and light.

I have ‘Looms’ ear plugs which help dull down any background noise and enable me to chat to people when in a restaurant etc.

I often wear sunglasses as well and have transition lenses as sunlight is often too bright for me as are fluorescent lights. 

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?

Doctors actually listening and believing me would have been great. Being consistently dismissed made menopause harder as they did not seem to believe me and advice such as “go lie in the sun, love“ were misogynistic and had me in tears, quite frankly.

On a practical note, my house is now filled with fidget widgets. They make life, meetings and social interactions so much easier to deal with.  I never leave the house without them. 

What supports, resources and services are available to people experiencing autistic perimenopause where you live?

Luckily we have access to the Internet we can explore and there are famous people like Davina McCall who have written books about the perimenopause and menopause now.

At the same time it is really hard to know what information you are getting is reliable as there are so many scammers out there. 

What kinds of services, resources or supports would you find most helpful?

Here in the UK we are lucky to get 10 minute appointments with our GP and we are only supposed to bring one issue at a time.

I feel that when you are faced with something as potentially complicated and multifaceted like the menopause, and add into that Neurodivergence and chronic illness, we need more than 10 minutes to discuss everything that’s going on and to actually put a plan in action that doesn’t just rely on a patch or a pill. 

What is the easiest way for you to access information about autistic menopause?

I have been lucky enough to have a lot of friends who have gone through menopause, so talking to my community has been essential to successfully managing my way through this life stage.

What would you wish for all people to know about autistic perimenopause?

You are really not alone.

It may seem like it especially when emotional dysregulation takes over. That can make it seem like no one cares and no one understands.

Reach out to family, friends and your community. 

Here on Substack there are so many writers who specialise in talking about women’s health and share their experiences. There is a wealth of information out there and how that looks to you will be different to how it looked to me but do go out and explore.

Don’t suffer in silence alone. 

Is there anything else you’d like to share regarding your autistic experiences of menopause?

It sucks but it will pass.

One of the things that mindfulness and meditation over the years has taught me is that everything in this life is temporary.

Nothing is permanent.

It may seem like it is going on for a long time, but eventually our symptoms will pass and a whole new stage of our life will begin. 

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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!

Fun fact: The Autistic Perimenopause: A Temporary Regression is fuelled by caffeine. If you would like to buy me a coffee, the button above will take you to my page. Thank you! ☕️

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