The Auti Peri Q&A: Tamsin Chennell

"There is light at the end of the tunnel."

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 Tamsin, “AuDHD, enby, old, odd, weird, quirky. Writing about chronic illness (ME/CFS), Autism, and life. I bring you poetry, prose, photography, knitting, and anything else I fancy. Compressed stardust, existing vicariously beautifully.” Tamsin lives in Yorkshire, UK and writes 3 Red Cabbage Heads - poetry, knitting, and essays on life on Substack.

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I’m me, Tamsin (she/her/they), oddly weird, weirdly odd, and quirky. Apparently these are things you shouldn’t say when asked to describe yourself in a job interview. Things like hard working, a team player, punctual are what they are looking for. Boring!

I am an older woman who remains youthful at heart. Scribblings, rantings and musings pepper this blog. Aged 6 I wanted to write stories, many decades later I still want to write stories. Sometimes the words are good to me, more often than not they refuse to be used.

I love it when the sun shines and the world glows. I love spinning at the top of the moors when all I can hear is the birds and the wind (preferably a gentle breeze not a gale). Errant thoughts often make me smile. I also have a very cynical side, often warranted.

I have ME/CFS (a systematic debelitating systemic lack of energy), am self diagnosed AuDHD, and considered decidedly quirky. As such my blog may indeed be quirky. Here I will post poems, prose, chat, ramblings, photographs, as and when I am able. That may mean lots in a small period or none for ages.

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What does “autistic perimenopause” mean to you?

To be honest I hadn’t heard of this until very recently, I’m now 58 and post menopause. And only just officially diagnosed autistic at 57 though I always knew I was weird and different. I’m glad it is now getting press as it could help people a lot to understand how it can impact.

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

So I didn’t get lots of symptoms that I knew of. I was struggling with various health conditions that were eventually diagnosed as MECFS and I tried all sorts of stuff for general perimenopause (none of which worked).

All the symptoms are muddled up in each other and difficult to differentiate what condition is causing what. I had incredible fatigue, I was so frustrated, I struggled to think, to organise, and I hurt.

I tried all sorts of supplements that promised relief and didn’t. The doctors just brushed me off, bog standard blood tests showed nothing wrong, though I have never had my hormones tested.

Perimenopause was never mentioned.

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

Nothing. Told nothing was wrong, but hormone levels were never tested. And to this day have never been tested.

I didn’t get any help even for menopause symptoms until I’d had horrendous nightly hot sweats, up to 10 a night where I needed to change clothing and bedding, and was sleeping on towels. Eventually after more than two years of complaining and when I was at the end of my tether from not sleeping for all that time I was prescribed HRT.

I was very lucky in some respects as that was my main symptom. I think. Everything else I could put down to the MECFS.

What was your treatment protocol for managing your autistic perimenopause? (Medical/lifestyle/alternative therapies etc.)

I had nothing official. I tried natural oestrogen cream, all sorts of supplements etc. nothing seemed to work so I assumed the symptoms I had were not perimenopause but the MECFS.

How was your everyday life impacted by autistic perimenopause (your caring/employment responsibilities, hobbies, mental health, relationships etc.)?

It wasn’t really. I pushed through perimenopause fairly easily, and by the time I was fully menopausal I was no longer working due to the MECFS, my kids were older too.

Were there things that made your menopause transition especially difficult for you as an autistic person? If so, what kinds of things?

I can’t answer this really, as I don’t really know.

Were there things that could have made your menopause transition easier for you as an autistic person? If so, what kinds of things?

As any kind of person it would have been nice to just have people listen to me and believe me, and to have GPs that understand menopause and perimenopause rather than having to rely on the internet.

Male GPs were the worst but even some females were dismissive. It took a locum and the pure desperation I exhibited (2 years of no sleep where I was ready to never wake again) to get prescribed HRT.

I do have a complication of a blood condition but the locum was actually the first person to even bother mentioning it, and I still had to explain the NICE guidelines to her in order to get her to prescribe. She was worried I’d get a blood clot, even though there is zero evidence, and my answer to her was, “What if you get a blood clot in 2 weeks/6 months? I’ll have had 2 weeks/6 months of sleep, it is worth it.”

I’ve been on HRT for nearly 4 years now, not had a blood clot yet.

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

None

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

Any kind of peri or menopause clinic with experts, rather than relying on out of date or misogynistic GPs.

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

Now it would be the internet, back then a few leaflets would have helped in conjunction, not everything was easy to find on the internet

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

There is light at the end of the tunnel.

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

Not everyone gets multiple horrendous symptoms, and what are there can be controlled with careful medication (I’m not a doctor"; it’s my personal opinion).

If you have co-morbidities it can be difficult to differentiate what is causing what. But some of us can come out the other side fairly unscathed.

I fully hope that with increased knowledge everyone can one out unscathed.

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I hope you 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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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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