My doctor says that autism is a ‘magnifier’ — and the way I understand that is that autism can magnify ‘normal human experiences’ to an abnormal level. Perimenopause is a normal human experience. My experience of perimenopause as an autistic woman? Definitely magnified.

I’m not sure when perimenopause began for me. This is partly because I was unaware of the existence of perimenopause. I knew about menopause but in my head, it meant you stopped having periods for one year (sounds good), and you have hot flashes during that year, and maybe for a little while after that (does not sound good). I didn’t think I had to give it any consideration until my periods stopped.

And look, I am usually on top of these hormone things. When I was younger and didn’t want to take synthetic hormones anymore, I picked up a copy of Taking Charge of Your Fertility and learned so much about my reproductive-age female body. Then when I was pregnant, I read too many books to list about pregnancy and postpartum. It even became a ‘special interest’ and I became a childbirth educator for a short time. But if any of the books I had read about my body talked about perimenopause or menopause, I skipped past them because they didn’t pertain to me during my prime reproductive years.

And when I was 35, I had my second and last child. I had postpartum anxiety and depression. I was overwhelmed and busy and I figured I didn’t have to think about menopause until I was like 50. And that seemed forever away. Spoiler alert: perimenopause was not ‘forever away’. 

The beginning of ‘the change’ 

The beginning of ‘the change’ comes off the back of an ending. Prior to pregnancy my cycles were regularly around 28 days. After I had my second child, I breastfed for two years. I don’t recall exactly when my periods came back but when they did my cycles were down to 23 days. I didn’t stress about it because when I looked up short cycles, it seemed that the consensus was that 21–35 day cycles were ‘normal’. I accepted that my body had some kind of reset post-breastfeeding. I hoped it would ‘fix up’ because I did not like having a bleed every 23 days, but unfortunately this became my new normal. 

But then another new normal began to show up. Cycle length variability. Over the last ten years, the data I have from my natural cycles shows that variability in cycle length was occurring at least as far back as 2016. Now whether this variability is indicative of perimenopause, I can’t say for sure. But for me, who used to be very regular, first at 28 days and then at 23 days, it was definitely different. Here’s a little chart to give you an idea:

chart with menstrual cycle irregularities

My cycle length variability over time

Oh, so perimenopause is a thing

At this point, I still don’t know about perimenopause. But I do now, and one of the shocking things I’ve learned about perimenopause is just how long it can go on for. Depending on the source, you might see a figure such as ‘up to ten years.’ And if you include the complete menopausal transition, you may see alarming figures such as ‘up to fourteen years’.

Of course, there are different things happening in different stages. And for some women, the impacts are barely noticeable (good for you!). But for a sensitive woman such as myself… they are impactful on every aspect of my life (oh, shit!).

 

There are different stages of perimenopause

wooden figure standing on steps made of blocks

There are three stages of perimenopause

Sometimes perimenopause is broken into ‘stages. According to this article, in Stage 1 — Very Early Perimenopause, cycles are regular but may be shorter. That would mean that I was probably in this stage by the age of 37 or 38. The author notes that ‘Symptoms might be heavier periods, increased period pain, migraines, sleep disturbances.’ Yep, I ticked all those boxes.

In Stage 2 — Early Menopause Transition cycles become irregular, varying by seven or more days. Estrogen begins fluctuating and drops to lower levels than you’re used to.

For me, this may have happened in 2018, but definitely by 2019. And those were two very turbulent years of my life. My marriage suffered greatly, as did many of my family relationships, my finances, and my mental health.

The article I linked above only mentions hot flashes and night sweats as symptoms. But with the ‘autism as a magnifier’ concept, I’ve always been very hormonally sensitive, and of course this meant that perimenopause was doing a real number on me. I just didn’t realise that it was this change in hormone levels that was contributing to the many symptoms I was experiencing.

So, what was I experiencing? I had high anxiety at times. I had severe depression with suicidal ideation. My ability to focus tanked. My sleep was poor. I was snoring. I began having reflux and digestive issues. I had my first ocular migraine which scared the shit out of me, particularly because it happened while I was driving. I began to get more frequent headaches. I got tinnitus and severe vertigo.

And then things got even worse in 2020 and 2021, culminating in an autism diagnosis and the aftermath. But first, a quick peek at Stage 3 of perimenopause.

 

Strap yourself in, lady. Stage 3 of perimenopause is a wild ride

I’m now in Stage 3: Late Menopause Transition. This when you start missing cycles and having your first cycle of over 60 days seems to be an agreed-upon defining marker.

This year, so far, I have had just three cycles: 78 days, 25 days and 43 days and counting. The symptoms listed in the article are minimal, but if you check out this menopause wiki you’ll see that there are lots of symptoms. And I am experiencing so many of them. But, as my menopause doctor told me, I’m ‘complicated’ due to my mental health history and neurodivergent brain. I do realise that the struggle to find help for perimenopausal and menopausal symptoms is a struggle that most women face, but for many neurodivergent women that struggle is magnified. 

Late-life autism diagnosis in women and the link to perimenopause

In 2021 I pursued an autism diagnosis. I wrote about it more extensively on my blog, but long story short, I had wondered if I was autistic since about 2016 when I was 40. But getting a diagnosis wasn’t a priority until 2021 when I got too overwhelmed, my mental health tanked, and I and lost my ability to ‘hold it all together.’ I was evaluated by a trusted doctor and diagnosed in June 2021. 

All the while, perimenopausal hormone changes were occurring — and due to past hormonal imbalances, I recognised that something was ‘off’. And in my research, I stumbled upon the term perimenopause. This time I paid attention. I mentioned to my naturopath that I thought some of my digestive, sleep and anxiety issues might be related to perimenopause, and she agreed and recommended eating foods with phytoestrogens. But I was dealing with a myriad of other pressing things — including a massive mental breakdown. 

The anxiety I was experiencing was well and truly breaking me. I was unable to eat most foods and I was having non-stop panic attacks and suicidal ideation. I was at a real low. Thankfully I had good supports in place. I sought help from my doctor and part of my treatment included medication for anxiety. 

When I reflect on that time, I now see that many of the things that led to me pursuing an autism diagnosis were related to what I was experiencing during this perimenopausal transition. I have since learned about so many other women who’ve had a late life autism and/or ADHD diagnosis because they could no longer ‘hold it all together’ once their progesterone and estrogen began the perimenopausal fluctuations. 

This is not a story unique to me. Not by a long shot. But who is paying attention? Many of us do share our experiences in neurodivergent spaces and receive support and validation there — which is awesome. But we often hit dead ends when we seek medical or mental health support. We are more likely to be misdiagnosed or to have our concerns minimised partly because the connection to our hormones is overshadowed by our neurodivergence. 

Researching the neurodivergent experience of perimenopause

autism and perimenopause intersecting on letter tiles

When autism and perimenopause intersect you find yourself on shaky ground

Overall, menopause is criminally under-researched. It gets a tiny sliver of medical research funding. And menopause in autistic women takes a miniscule crumb from that tiny sliver. In fact, a 2020 qualitative study called ‘When my autism broke’ states ‘…we are unaware of a single study to date that has explored how autistic people cope with the menopausal transition.’

What they did find out from the participants in their study is that ‘…menopause might magnify and even generate new difficulties with sensory sensitivities, communication, emotion regulation and everyday living.’ Aha! There’s that term magnify. 

I do feel more validated by the focus given to the impact of ‘sensory heightening and executive decline’ themes discussed in the study. But the conclusion also touches on what a vulnerable time this is for autistic women. And they’re not alone. Though the research is sparse, the themes of menopause being particularly challenging for autistic women is seen in other studies as well. For instance, a 2020 study concluded ‘These findings implicate the potential for menopause to severely compromise health and well-being of autistic people and indicate an area of underserved support needs.’

In 2022, another research study on autism and menopause concluded ‘Those with autism spectrum conditions did experience increased menopausal complaints. These menopausal complaints were associated with higher levels of depression and autistic traits.’

And this study’s abstract begins with ‘Physical and psychological changes during menopause can be especially tumultuous for autistic people: difficulties with sensory sensitivity and daily functioning may be exacerbated.’

My autism broke during perimenopause too

The ‘When my autism broke study contains many participant quotes about stress, depression, anxiety, panic attacks, self-injury, and suicidal ideation. One of the participants even says ‘…the extra stress all the above brings can result in feeling too tired and overwhelmed to carry on… It’s like, your everyday life, just to appear ‘normal’ is bad enough, but when M [Menopause] happens, it all gets too much… I wonder if the low life expectancy for autistic women is linked to menopause because it all gets too much.’

All throughout my life, my mental health has been ‘vulnerable’. And during the menopausal transition, mental health impacts have been severe. Along with my late life diagnoses of autism and ADHD, I have experienced a massive uptick in mental health issues. I’ve had bouts of severe anxiety, panic attacks, OCD, depression and suicidal ideation. I’ve had a lot of food related problems such as ARFID and/or cibophobia (a fear of food) at times and at other times binge eating and food addiction.

And in looking back, some of the other times I was particularly vulnerable to mental illness were hormone-intensive times. Puberty. Pregnancy and post-partum. When my babies decided to stop breastfeeding. So of course, in hindsight it makes perfect sense that perimenopause would be kicking my ass.

Hyperfixation and perimenopause

person standing in a tunnel

Autism can cause me to become hyperfixated

Hyperfixation is one of those traits associated with autism that I find to be on a spectrum of its own. Hyperfixation can be great at times. It can bring me much joy to be lost in the monotropic world of my choosing. But the problem is that it’s not always of my choosing — and it’s not always joyful. Sometimes it causes my mental health more harm than good.

Just last night, I had made the realisation that the menopause transition was becoming a hyperfixation for me. And if you’ve read any of my other blogs, particularly this one, you might get the sense that fixating on ‘figuring myself out’ can become an unhealthy obsession for me. But hopefully there was some wisdom in that realisation because I started to contemplate my relationship with perimenopause. Here’s some questions that popped up for me:

  • Am I spending too much time and energy focused on the impacts of perimenopause on my mind, brain, and body?
  • What am I trying to achieve by learning all of this stuff?
  • Am I paying too much attention to all of the negatives?
  • Is there anything positive about perimenopause I could focus on instead?
  • Am I trying to ‘fix’ or ‘eradicate’ all the things that are difficult about perimenopause and ageing? If so, is this even realistic? What would be realistic? What would be useful?

It’s a tough line to straddle for me — between appropriate self-care and the propensity to hyperfixate on negative aspects of my physical and mental health. Since I have a history of medical anxiety, it can become downright debilitating if I don’t notice that I’ve crossed the line and have become unhealthily obsessive. If I’m being honest with myself, even though I haven’t had full blown instances of my usual presentation of medical anxiety, the anxious thoughts have been on the uptick. And I did have a panic attack earlier in the week after having a spell of light-headedness.

This morning, as I read the ‘When my autism broke’ study, I saw a quote from one of the participants who said, ‘Single-minded focus on physical changes may make someone ruminate and fixate on them…’ Oh, did I feel called out. Time for more contemplation.

Is there a way to ‘do something’ with this hyperfixation that’s healthy? Even helpful. According to this research from April 2024, ‘…hearing about the experiences of others may provide reassurance to autistic people who struggle with menopause and let them know they are not alone.’

So yes, I am sure there are positive things that I could do with this hyperfixation. I suppose that’s partly why I’m writing again. Because if I don’t ‘get it out’ it will just be me researching every symptom online, and internally fixating on every sensation in my body.

I need to know that I’m not alone — Maybe you do too

a group of middle aged women

I know we aren’t going to hang out like these women — but I wanted to add this photo because this is highly representative of ridiculous stock images I found searching the term ‘perimenopause’. Nobody really does this, right?

I started the Autism at Midlife blog in February 2022 in part because I wanted to talk about the experiences of being a woman processing a late-life autism diagnosis. I wrote frequently for about a year, and most of that time was spent looking at my life under the new-to-me filter of autism. 

I don’t believe that I integrated enough of the perimenopause piece because I was more focused on the autism aspect of things — and frankly, I didn’t really attribute a lot of what I was going through to perimenopause itself. 

For a little while, I was more mentally stable. I wanted my writing focus time to go to my poetry for a while. And then a lot of turbulent things happened in my life, including a car accident and a sudden move to a new home. I hit a fucking wall with overwhelm and burnout and stopped writing for the most part. I was back in survival mode. 

And as I learned more about perimenopause and experienced more of the impacts of these hormonal shifts, I would think about writing. But I just didn’t have the energy to do it. I would say to myself with some bitterness ‘This is why there’s nobody writing about perimenopause in autistic women — because we are too fucking overwhelmed to do it.’ Side note: I am sure other people are writing about this but I tend to make these kinds of statements in my head when I am emotional. That said I do see a lot more articles, podcasts, etc. about ADHD and perimenopause than I see with autism. 

And so, I’ve found myself going many months without writing. But I have a lot to share about my experience, so I will write. And I expect to be inconsistent in writing because if there’s one thing that’s supposed to be a positive about ageing, it’s wisdom. And wisdom tells me that I am going to get too fucking overwhelmed to do it sometimes. 

But that’s okay. I don’t have to do this alone. I want to hear your stories. I want to help you share them. I want Autism at Midlife to be about more than one voice. If you’re interested in being interviewed about your experiences with autism during your menopausal transition please get in touch with me at admin@autismatmidlife.com and I will send you a list of questions that you can answer in your own way and in your own time. 

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