How Autistic Menopause Is Like Autistic Puberty in Reverse
How Autistic Menopause Is Like Autistic Puberty in Reverse
And what we can learn from that analogy: neurodivergent musings on the "Bookends of Menstruation".
Autistic midlife women everywhere exist on the social periphery with inadequate support systems, experiencing extreme burnout whilst fulfilling caring duties for our ageing - undiagnosed autistic parents - and young - not yet diagnosed autistic children - neurodivergent family members.
The autistic sandwich generation, yum!
Between my excitement from the aurora and the repeated listens of Dr Gunter’s article, I believe I may have experienced what Professor Tony Attwood refers to as an “intellectual orgasm”. Actually I must confess to having had multiple intellectual orgasms over that weekend, not that I was counting. But I am quite exhausted.
In a recent and alarmingly frequent impulsive rage this week, I was telling my pubescent neurodivergent 12 year old son something - I forget what, but it must have felt significant to me at the time - probably Aurora Australis related...
Seemingly banal to him. though, probably because it wasn't on his current favourite topic of Fortnite, he retorted, “I don’t care!”
“I DON’T CARE THAT YOU DON’T CARE!” I yelled back.
I instantly wondered why had I said that? I was flooded with shock at being so out of control of my own words and emotions.
Aged 42, I outwardly groaned that we both sounded quite pubescent. Honestly, that was to be expected of him in his phase of life, and he is always telling me "IDC" - gaming kids' shortening of "I don't care".
So what was my excuse for my lapse of judgement?
Unfortunately, one of the major similarities in autistic puberty and menopause is that we often do not know what is happening to us, and we are scared. Very scared. Our minds and bodies feel different, we are rapidly changing. We have neither the language nor a frame of reference upon which to hang this new experience.
It is very significant that many women experiencing perimenopause do not even know yet that they are autistic. The stereotype of autism as a condition affecting predominantly white male children still prevails, to the detriment of the psychological wellbeing of undiagnosed and misdiagnosed autistic women everywhere. Imagine what we would already know about autistic menstruation and menopause if white autistic males had to endure it… I suspect they would be the ones doing (and funding!) all the research too.
Remembering that one euphemism for menopause is “The Change”, and bearing in mind that autistics are well known for our dislike of change, we may experience these changes completely unprepared and unaware of what lies ahead for us.
Autistic women can lack community and sisterhood in our everyday lives. Many of us have nobody to talk through life transitions with - both in puberty and in menopause. As children, often our parents have not told us to anticipate starting menstruation. For myself, born in 1981, social taboo dictated that my parents did not engage in giving me the information, tools and reassurance I was so desperately in need of. The parents of women of my generation generally would not speak to us about their menopause transitions. We had no internet at that time to turn to for answers to our questions. If it wasn’t covered by teen magazines’ agony aunt columns, it didn’t exist, as far as I was concerned.
Times have changed technologically for the better in terms of accessibility of information, yet autistic women’s health remains underfunded, under researched and there remain entire data voids around aspects of autistic menopause. Luckily there is now a lot more information available around autism and puberty, such as this guide to periods for parents of neurodivergent children, from the University of Edinburgh.
Dr Rachel Moseley and Professor Julie Gamble-Turner, research academics at Bournemouth University’s Psychology Department, have compiled this online resource pack, which links to further information for those of us desperate for information interested in autistic menopause: a metaphorical spoon-saver (‘Spoon Theory’ for autistics explained here, if you are new to this concept).
What Do We Know So Far About Autistic Puberty and Autistic Menopause?
Not a lot, unfortunately. There are enormous data gaps resulting from medical misogyny and a lack of academic research into ageing autistics. What little research that exists so far suggests that some autistic people believe their experience of menopause was unique or amplified compared with non-autistic people.
Dr Moseley and Professor Gamble-Turner have recently published a collaborative research paper entitled ‘“A Perfect Storm”: Autistic Experiences of Menopause and Midlife’ (Brady et. al., 2024), offering important insights into this topic.
Brady et al. report that some participants experienced tumultuous episodes during hormonal life events, including puberty, pregnancy, childbirth and the menopause transition. Several agreed that “menopause was like going through puberty all over again”. This suggests that looking at menopause as a reversal of puberty is a useful analogy, but I believe we must look at autistic perimenopause through a neurodivergent lens.
Many of us are too tired from a lifetime of camouflaging our autism and perimenopause is often a tipping point. Participants in Brady et al’s study expressed this sentiment in similar ways:
“…couldn’t cope anymore.”
“outsider”
“pushed me over the edge”
“It was quite catastrophic”
“It’s like my mind is different now”
Brady et al. highlight that: “Unexpected physiological, psychological and social changes had a profound effect… having inadequate information and support, or no support at all, and entering into a spiral of difficulty and distress in which they felt they could no longer cope. Several faced anguish, suicidality, loneliness and isolation compounding in menopause after experiencing a lifetime of struggles”.
Bleak, isn’t it?
Depression and anxiety can be part of the lifelong presentation of autistic women. The Meno-D menopausal depression scale is an excellent self-assessment tool that can be completed at home. Although it is intended for a neurotypical or general presentation of menopausal depression, it shows that irritability, rage, lack of libido, insomnia and so on. The Australasian Menopause Society is a great resource, and has further information about Mood and the Menopause here.
Autistics are more susceptible to suicidality than the general midlife population: chronically sensorily overwhelmed and pushed way beyond our fluctuating capacity.
In my personal experience, this is driving my temporary regressions that I endure. It is bound with shame, guilt and a rapidly decreasing ability to mask autistic traits, resulting in increased meltdowns, hopelessness and social isolation.
In addition, due to systemic misogynistic ableism having limited the academic research base, autistic menopausal women are burdened with the need to fill data gaps with our own anecdotal evidence, trying to make sense of this absolute shitshow. This is why I have been working on this piece all week in between medical appointments, homeschool classes, occupational therapy sessions - all the while having one hand in a thumb stabilising splint due to a post-aurora DIY injury that I would rather not mention here.
These gaps in research data are reflected in the gaps of knowledge around both autism and menopause of the doctors who are looking at us through a neuronormative lens. The dissemination of information regarding “autism” and “menopause” is not reaching our GPs and family doctors, psychiatrists, and other important members of our healthcare teams.
We already know about the double empathy problem faced by autistics who are able to communicate clearly within our neurodivergent groups, but face endless misunderstandings in making our meaning understood to neurotypicals. An added layer to this utter shitcake is the triple empathy problem, where these miscommunications occur in medical settings.
The fourth layer in the quadruple empathy problem, so named by Brady et al. (2024), is the final dimension of medical misogyny - namely that these communication challenges may be exacerbated by the autistic menopausal transition, and resulting in not being believed, understood, validated, diagnosed, monitored and treated as needed.
During a period (pun intended, sorry not sorry) when we are already facing burnout from a lifetime of masking autism, caring duties, physical, emotional, psychological, sensory issues around menopause, we are required to also learn for ourselves what is going on, and self-advocate for our own appropriate healthcare. We are forced into educating medical practitioners, who may not listen to us, believe us nor validate us.
It is ironic then that autistics spend our lives with people exasperatedly asking us, “What is wrong with you?”, feeling different from everyone else, only in midlife to desperately and inconsolably go to our doctors asking them for diagnostic support, only for them to tell us there is nothing wrong with us. Medical gaslighting at its finest.
Gaslighting of autistic women occurs unseen and unreported on an epic scale - from familial interactions (“It’s not that loud” and “I can’t smell anything”), to medical gaslighting and misogyny (“You give eye contact so you can’t be autistic” and “You are too young to be in perimenopause”).
This vital self-advocacy work is all being done unseen, unheard and unpaid.
While we are feeling at our very lowest point physically and psychologically, we are forced to push our hardest ever to obtain information, medication, validation, menopausal hormonal treatment, and more that we won’t have yet discovered that we need.
During these diabolically challenging times, we are also pushing against these medical and mental health services, that were ironically not set up for us to survive or thrive, to get our neurodivergence seen and heard. All the while our family members may be telling us we are wrong, paranoid, overthinking, overprotective and oversensitive.
Further irony in these all too common situations is that we - late diagnosed or not-yet-identified - autistic women are also working to overcome intergenerational trauma resulting from these very ideas that to chronically struggle in our families is our norm - so if they struggled without complaining, who the hell do we think we are to be creating such a fuss? There is nothing wrong with us. Gaslighting at home and out there in the world - is it any wonder we are feeling so ashamed, confused and isolated? Are we safe anywhere?
Does The Analogy Fit the Autistic Experience of Puberty and Menopause?
I have heard non-autistic menopause being likened to experiencing a “second puberty”, which is a concept I can certainly relate to. A “reverse puberty” feels an even better fit, as it explains why the autistic menopausal transition feels akin to a regressive state for some. Albeit temporarily, thankfully.
Enduring simultaneous first (his) and second/reverse puberty (mine) alongside my son certainly has its challenges. He has no idea how lucky he is, as he will only experience puberty once, and he doesn’t need to anticipate its analogous reversal in decades to come…
Research has shown that some autistic people experience struggles through the menopause transition including “heightened sensory sensitivities, difficulty coping, reduced social contact, suicidality and challenges with adaptive functioning and cognitive changes” (Moseley et al., 2020, 2021; Brady et al., 2024).
Add to these the likely physical symptoms of puberty and menopause listed by Dr Gunter in her recent essay (heavy periods, acne, menstrual cramps, menstrual diarrhoea (oh wait, that’s what I have had all these decades?!), PMS/PMDD, iron deficiency/anaemia, endometriosis, menstrual migraines and polycystic ovaries.
Forget the awe and wonder surrounding auroras. It is a natural wonder that any of us are functioning at all in adulthood, regardless of our neurotype! (I am definitely not going to mention the emotional labour and unfair, unpaid share of the childcare and household management placed on the majority of females here because it’s not relevant, okay?)
I know I am definitely not the only late diagnosed autistic woman sitting here suffering, and sharing her hard-earned knowledge and anecdotal evidence trying to save others from repeating this cruel cycle. Nor am I the only one doing so during stolen minutes in between medical appointments (where she is advocating for herself and her children) ensuring her children will grow up more feeling more informed and with an awareness of what to expect to buffer the agony for themselves and others of enduring such significant hormonal life transitions.
Many autistic menopausal women are feeling exhausted, beaten, broken and devastated by the impact of their symptoms. They are being denied the identities, diagnoses, information, treatment and care that they deserve. When you consider the shame felt from trying to act “normal” whilst feeling like outsiders, is it so surprising that suicide can feel like the last option available?
I share the same experience documented by Brady et al.: “the adaptability of some participants (e.g. accessing private healthcare, self-identifying autism and menopause and educating medical professionals) was often the result of desperation rather than adequate systemic support” (Brady et al., 2024).
My own autism diagnosis came at the end of my thirties, following self-diagnosis then made official by a formal private assessment, confirming why my lifelong “normal” had been so unlike everyone else’s. Had I known I was autistic during onset of my menstruation, pregnancies (two babies, three losses), childbirth and so on, I could have planned my life appropriately around my sensory needs. Rather, I had countless meltdowns, breakdowns and shutdowns, and suffered decades of undiagnosed chronic anxiety and depression, exacerbated by constant hormonal fluctuations.
Suicidal thoughts have been a part of my ongoing autistic menopause.
Like many autistic women, I also have late diagnosed ADHD, which is characterised by emotional dysregulation and impulsivity: acting out first, not taking time to think through consequences, as our neurology makes us spontaneous. Fun but lethal!
So how many of the undiagnosed neurodivergent midlife women taking their own lives (not to mention undiagnosed teens in puberty) are experiencing hormonal depression, and immediately acting on their suicidal thoughts?
Well we know that autistic women experience suicidality at three times the rate higher than non-autistic women. I strongly suspect that the numbers of female adult suicide underrepresent the true impact of this devastation.
What about all the undiagnosed and misdiagnosed neurodivergent people who are too scared, too shamed, too confused and just want to make it stop?
Autistic women have spent decades masking their differences, placing trust in doctors when those notice differences in themselves and request medical advice. Often this results in medical gaslighting - not being believed or listened to.
“First, do no harm” is one of the promises of the Hippocratic oath taken before becoming a medical doctor.
So are doctors fulfilling their duty of care to autistic menopausal women?
Many doctors are unknowingly contributing to the medical harm caused to autistic women when our autism goes unseen for decades, and our perimenopause symptoms are not adequately treated and supported.
What Is Needed to Survive and Thrive in the Autistic Menopausal Transition?
Key takeaways in the study by Brady et al. are the importance of the following points to healthcare professionals:
person-centred, autism-informed healthcare
consider intersectionality and accessibility needs
recognise autistic communication styles
recognise the various symptoms of menopause, including those that are less widely discussed
be receptive to the fact that menopause may start earlier than is commonly expected.
In addition, we need to communicate with each other about how we are feeling, what we are going through, share our burdens, offload and process our challenges and know that our normal in autistic menopause may encompass regressions in our functioning, but that this is temporary.
You are not going mad.
You are not alone.
You deserve to share your story.
My advice to healthcare providers is to turn off your gaslight, and to see autistic menopausal women through a neurodivergent lens.
It made me also think of how much autistic and neurodivergent people are analogous to Auroras:
To the naked, untrained eye, those of us with hidden disabilities appear just like everyone else. And so we go unnoticed in this busy bustling life masking our unseen differences.
But with enough time, patience, compassion and commitment to see us through a different lens, you can really see us for our true colours…
GIVEN THE RIGHT CONDITIONS, TIME AND PLACE IN SPACE,
WE CAN REALLY SET THE SKY ALIGHT.
<div class="substack-post-embed"><p lang="en">Are you sick of aurora photos yet? I hope not, because I have an autism aurora analogy for you!
🌟🧠♾️💪💕
In the right conditions, time and place, we can really set the sky alight.
⭐️ 💕 ⭐️ 🧠 ⭐️ 💕 ⭐️
I took these photos by my house and stayed outside in the cold NZ winter night until my phone battery died. (iPhone 12, and two hours.) I took a lot of blurry photos until I was well practised at preventing camera shake during the ten second exposure.
Our collective smartphone photography skills have improved worldwide literally overnight! 📷
It was quite the experience seeing the vivid colours only through the camera lens, almost imperceptible to the naked eye, like an optical illusion or a camera trick.
I love that seeing the Aurora feels like a communal event, for those of us fortunate enough to have experienced seeing the auroras this weekend.
My UK family shared photos of the Aurora Borealis with me, and in return I sent them my Aurora Australis photos. Same but different. 🙃
We didn’t have to all pay a premium to go on an overseas excursion to witness this phenomenon, which is just what we all need in this global cost of living crisis! We also kept our carbon footprint in check too 👣
It made me also think of how much autistic and neurodivergent people are analogous to Auroras:
To the naked, untrained eye, those of us with hidden disabilities appear just like everyone else. And so we go unnoticed in this busy bustling life masking our unseen differences.
But with enough time, patience, compassion and commitment to see us through a different lens, you can really see us for our true colours…
GIVEN THE RIGHT CONDITIONS, TIME AND PLACE IN SPACE,
WE CAN REALLY SET THE SKY ALIGHT.
</p><p> - Sam Galloway</p><a data-comment-link href="https://substack.com/@samgallowaynz/note/c-56165120">Read on Substack</a></div><script async src="https://substack.com/embedjs/embed.js" charset="utf-8"></script>
As an autistic woman of a certain age raising an autistic child of a certain age, I relate all too well. It's a cruel trick of nature to time my menopause to coincide with my kid's puberty. A hot "shitcake"... I feel so seen.