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 or urgency that we bust the social taboo and get used to talking about this.
Fun fact: The Autistic Perimenopause: A Temporary Regression runs entirely on caffeine (plus low dose SSRI, ADHD stimulants and HRT, but I don’t think it would be legal for me to ask for a contribution towards them… 🤔 💊 🩹)
Sarah is 46 and lives on the Kāpiti Coast of Aotearoa New Zealand with her 10 year old daughter, she also has an older daughter living in Wellington. She runs a peer led community creative wellbeing centre, and has a background in running disability and mental health services, with a focus on advocacy and promoting self-advocacy.
How we are uniquely affected by perimenopause as Autistic people. We will likely share many struggles and challenges with our neurotypical peers, but there are added factors as Autistic people that make the perimenopause experience unique to us.
When did your autistic perimenopause symptoms start and what were/are they?
This is hard for me to ascertain exactly as I have preexisting mental and physical health conditions, and I had been going through a lot of personal life changes and challenges over the past few years. So I feel it's been hard for me to tease out exactly what symptoms have been perimenopause, and from when.
But what I noticed mid last year was an increase in unexplained anxiety. I have always had anxiety, and being Autistic things like change to routine, uncertainty and social interactions have always been challenging. But this was different, I was experiencing symptoms of anxiety with no real "cause". Normal day to day life was difficult, carrying out routine tasks were difficult.
I had increased brain fog, lethargy and regular day to day activities I had always completed suddenly felt insurmountable.
I also noticed that my usual PMS symptoms became increasingly severe, I also had PMS symptoms around the time of ovulation, and my periods were heavier, started earlier and lasted longer. The days leading up to my period I had trouble sleeping, got very hot at night and I was stressed and struggled to cope emotionally. Therefore I was finding that out of a month, between having prolonged PMS symptoms, then longer periods I had maybe 5 - 7 days where I felt "ok".
Towards the end of last year I got the standard hot flashes and night sweats. This is when I knew I had actually hit perimenopause, I had heard about those symptoms but not many of the others.
Looking back at years prior it was likely I was experiencing symptoms but put it down to mental health and/or stressful life events.
What happened if/when you presented with autistic perimenopause to a healthcare professional?
I went to the doctor many times over the past few years with mental health concerns. This was before the hot flashes and night sweats started.
I would tell them about exhaustion, sleep disruption and various other challenges I was having. I asked twice about the chance I was perimenopausal. Two different female doctors (both older than me), asked if I had changes to my period. I said that it was becoming shorter. They were heavier, but I also have uterine fibroids so they put it down to that. They both said if no significant changes were noted in my periods then it was unlikely perimenopause. Neither asked any clarifying questions around other symptoms.
One time when I presented at my GP’s office a nervous, stressed, exhausted wreck and started telling her what I was experiencing, her abrupt response was "What do you want me to do about it?" She prescribed me anti-anxiety medication.
When I began having the night sweats and hot flashes I finally felt confident that these were "real" symptoms and made sure to book an appointment with the women's health specialist at the GP clinic. When I told her all my symptoms and she checked my age - 46- she responded with "That's likely perimenopause, and you've probably been in it for a while now".
Finally I felt validated and listened to.
She did the symptom checklist with me, and I had all of them. Some I had very obviously been struggling with for some time.
What has your treatment protocol been in managing your autistic perimenopause?
My doctor suggested an IUD for progesterone and estrogen patches to start with. These both had an immediate effect. I stopped having night sweats and hot flashes.
She increased my estrogen dose after the initial settling in period. She also prescribed Utrogestan (progesterone capsules) when I presented with depression and fatigue, however these seemed to increase my stress levels and exasperate my mental health so I stopped taking them.
How has your everyday life been impacted by autistic perimenopause?
Unfortunately the timing of this all has coincided with a period of change, poor mental health and lots of other physical and personal life factors. So I feel my "baseline" or my foundation has been rocky for quite some time. There is never a good time to go through this, but I feel had I been in a calm and settled phase of life maybe I would have coped better with all of this.
I have near constant fatigue, my already heightened senses are even more sensitive, it is difficult to function, to work and to parent without a solid foundation physically, mentally and emotionally.
Every day is different, some are more of a challenge than others. But my general feeling is I am now less "me", like something has taken control of my body, mind and emotions and I'm just along for the (bumpy, tumultuous) ride.
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 think the transition was difficult because I didn’t know that I was transitioning into perimenopause! I didn’t even know I was Autistic until the start of last year. So it’s hard to track my symptoms and as I’ve become aware of my sensory/energy level/hormonal challenges I have also been grappling with the diagnosis.
It has made all my Autism traits harder to mask. Because everything is more pronounced but also masking requires energy that I just don’t have anymore.
It was definitely made more challenging by the fact that I was dismissed by GPs multiple times when I tried to access health care for my symptoms.
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?
Having doctors trained to recognise, treat and validate people's experiences would be a great start. Feeling understood and believed, and not being written off as simply "mentally unwell" would have been good.
I was mentally unwell, but it could have been treated correctly instead of being dismissed as "normal" given my history.
Greater access to support, knowledge and advocacy.
Having someone to ask about symptoms, experiences and challenges earlier on would have been great. I was at the mercy of the medical system. They said I wasn't perimenopausal, I wasn't educated or knowledgeable enough in the subject to advocate for myself.
I had no control over the management of my symptoms because I was told they weren't there.
What supports, resources and services are available to people experiencing autistic perimenopause where you live?
There are no specific supports available in my area as far that I’m aware of. I have been lucky to have access to the GP that I do. She runs her own Women’s Health clinic with a focus on perimenopause, however as I said she’s not specialised in Autistic perimenopause. I’m lucky I have friends going through this and we support each other.
What kinds of services, resources or supports would you find most helpful?
Sam Galloway is great! I have learned more from her than anyone.
My new GP is wonderful, and understands perimenopause so well and has a lot of knowledge and is very compassionate and validating. However she has little knowledge on Autistic perimenopause specifically.
It would have been wonderful to have access to information right at the start, however as I was essentially medically gaslit I didn't think/believe I was going through perimenopause, because I kept getting told I wasn't.
Having a service, or support system back then I could refer to would have been great.
What is the easiest way for you to access information about autistic menopause?
Online is great, in easy to read and understand formats as my executive/cognitive function is so low. I can't take in lots of information at one time anymore. I can only read shorter pieces.
Videos are great, and for some reason it is easier for me to take in audio/visual information together as opposed to just listening to a podcast.
What would you wish for all people to know about autistic perimenopause?
I think there is this belief around perimenopause in general that it's just an unavoidable part of life for women/afab people therefore it is not a big deal. It's similar to PMS and having periods. These are just normal, regular parts of life for us so there's no point complaining or making a big deal out of it. These things are often written off and normalised and diminished in our society, as if we shouldn't complain about something so "trivial/normal". I think this needs to change.
We need to be taken seriously, listened to and validated.
Autistic perimenopause really does stop you in your tracks, or actually derail you altogether. At least that is what I have seen with the people around me. It's not just a passing phase, something to "get over" or an easy fix. For years we will battle against our own bodies and minds for control, and often lose.
I think Autistic perimenopause for many of us means that we have little choice but to drop the mask. It is harder to work, live, and exist at full capacity. It's harder for us to pretend everything is ok. It is a very real and very raw phase of life.
Is there anything else you’d like to share regarding your autistic experiences of menopause?
Knowing Sam has made a big difference. She's a wonderful advocate for Autistic perimenopausal people.
As much as a lot of what I have written has felt like "doom and gloom" I do think that there is light out there. It's found in community, in knowing you're not alone, in being able to share experiences and in having your experiences validated.
There are good days too, where sometimes I feel like everything will be ok, and I take those small wins.
As I have struggled with my mental health for many decades I am able to apply what I have learned through this to the perimenopausal experiences - everything is temporary, this will not last forever.
When we are in the middle of distress and everything feels dark and hopeless, keeping in mind that this will pass is crucial for me. I know this because I have lived through it many times.
I also feel at this stage of life I'm taking stock of how I have lived my life so far, my experiences, and facing trauma head on. In a way the heightened emotions are showing me what I need to heal, and I'm not repressing these any more.
Perimenopause is helping me to see where I need to make changes. It has also forced me to slow down and focus on what is really important to me.
I will remain eternally grateful to Sam for creating this space for us all and for being a light in the darkness.
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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