The Auti Peri Q&A: Sam Galloway

"We are vulnerable to medical gaslighting and medical misogyny, believing misguided doctors who tell us we are too young to be perimenopausal."

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.

💕 Thank you for reading The Autistic Perimenopause! 💕

If my work is valuable to you and you can afford to, please consider upgrading to a paid subscription.

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YAY! This is the tenth Auti Peri Q&A interview! 🎉

Thanks so much to all my awesome previous guests!

Here are their insightful Q&A interviews: Autistic Ang, Tamsin Chennell, Allegra Chapman, Julie M Green, Nicola Bal, Elly Marie, Jen deHaan and Patrice Riley.

There are lots more fantastic Q&A guests to come!

If you would like to be featured as part of this Q&A series, please message me. I’d love to share your story!

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Today I am putting myself in the hot seat and sharing my own responses to The Auti Peri Q&A - Sam Galloway - creator of The Autistic Perimenopause: A Temporary Regression.

Originally from London in the UK, I currently live on the Kāpiti Coast of Aotearoa New Zealand with my husband, our two kids and two ragdoll cats. Harry is pictured with me below, the divine feline that he is! 😻

Grab a cuppa, put your feet up and have a read. As you may expect, I have a lot to say on this subject! But I will try not to take up too much of your time… 🤞🎧

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What does “autistic perimenopause” mean to you?

In my personal experience, symptoms of the menopause transition have been very extreme. They began at an earlier age (mid 30s) for me compared to the average, which isn’t uncommon for autistic people. I don’t know why some autistic people may start perimenopause younger than non-autistics. Some autistics are hypersensitive to internal changes, including the effects of hormonal fluctuations on our body and mind. We also may be aware of their effect sooner, before they become more frequent/severe.

Changes can be unbearable and adversely affect my functioning and capacity to cope with everyday demands. Until I had a Mirena inserted, my sensory overload was increased in perimenopause with random menstrual and back pain, headaches, joint pain, skin dryness, dry eyes, spontaneous bleeding, and general unpredictability around my health, mood and wellbeing. Fortunately my experience of severely debilitating symptoms in my menopause transition is not the case for all autistics.

Up until midlife, I was mostly able to channel my energy and intellect into socially masking and compensating for my constant, numerous challenges. When autistic perimenopause started, everything fell apart.

I had masked so well and for so long that I had no idea I was even autistic before perimenopause began. I had always had a general inkling that I was different from everyone else, but for no discernible reason. The gap between my peers and I widened when life as I knew it became unbearable in the early stages of my autistic perimenopause.

I was so emotionally and sensorially dysregulated, that it became impossible - and undesirable - to continue masking.

As is the case for many late diagnosed females, seeking diagnostic assessments for our own children in this life phase is often the catalyst for self-diagnosing our own neurodivergence. I happened upon signs of female autism after researching the topic regarding my kids, and saw how it made sense of my own life until that point. So midlife is often extremely complex for neurodivergent women.

Many consider it liberating, but I am not yet at that point.

The shame and confusion caused by our unconscious and involuntary masking can present with increased meltdowns, shutdowns and regression in our communication and skills.

Imagine brain fog, but instead of wondering why you walked into the room, you may wonder why you exist in this realm, and why you have had to evade social rejection your entire life.

Imagine a hot flush, but instead of unbearable sweating and discomfort, you become hysterical and no longer want to be inside your own skin.

Imagine not knowing why you feel the way you do, but instead of seeing your own GP and starting HRT, you are referred to adult mental health and think you are losing your mind. Mental health services do not necessarily comprehend the link between neurodivergence, mental health and hormones, so many end up misdiagnosed and given psychiatric drugs and therapies that do not improve symptoms. Hormonal mood issues require hormonal treatment (HRT/MHT), as the root cause needs to be addressed before symptoms can be alleviated.

When we don’t understand ourselves, and doctors don’t understand autism or menopause, we are unsupported and may feel hopeless. The risk of death by suicide is three times higher in autistic women than in non-autistic women in midlife. This should be a known crisis point.

Although we are at the very early stages of academic research into autistic perimenopause, I believe that severe menopausal depression should necessitate an autism assessment, since the link between neurodivergent suicidality and fluctuations in reproductive hormones is so strong.

It is an enormous disservice to autistic women that there are major data voids in autistic perimenopause, and also that there is not enough specialised (or any?) support for us.

Medical systems are patriarchal, misogynistic and ableist. It is frightening to be going through this transition with no emotional or practical support.

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

My first symptom was dry eyes. I had recently emigrated to Aotearoa New Zealand from the UK and was unsure whether it was hayfever from the new-to-me native Kiwi flora pollen. It didn’t feel like hayfever though; instead my eyes were burning and felt sunburnt. My two homeschooled sons were under 5 at the time, and I had to drive them to activities every day. In agony, I regularly had to pull the car over and would cry tearlessly several times a day. The optician reassured me that it was nothing sinister, but when it continued with repeated regular application of over the counter lubricating eye drops, I had a private referral to an eye specialist.

As homeschooling mothers often do, I have to take both children along with me to all my medical appointments. When I eventually saw an eye specialist she told me, “I am not calling you old, because I am the same age as you, but this is because of your age”.

This was the first occasion where perimenopause was missed, and all because I was 37 - too young to be “menopausal”, surely? I

Now I despair when I reflect back on that time. This was only around 2018, and both a medical specialist and I had no idea that perimenopause could start in our mid-late thirties. How many women my age had been referred to her and been told “it’s because of your age” without being told that it is actually a symptom of fluctuating/low oestrogen?

The most we are told about dryness as a symptom in perimenopause and menopause is about dry vaginas! Dry eyes are not an uncommon perimenopausal symptom, yet continued medical misogyny and unintentional gaslighting fails to give us the proper diagnoses in midlife, or when nearing midlife.

Women are often socialised to be so frightened to admit their age to others. Perhaps the eye specialist may have felt that she was bravely broaching the social taboo of menopause whilst sparing my feelings and pride?

When I think back to what might have been, I wish I had been empowered and informed by instead being told “this is a common symptom of perimenopause, and hormonal symptoms require hormonal treatments”.

Eye drops are great, and I have to still use them constantly, it is practically a stim these days! But what I needed was an oestrogen buffer from that point in my life onwards, as that could have been preventative of developing other uncomfortable symptoms as a result of perimenopause.

Dry eyes was a distressing and disconcerting symptom, and is one I continue to have despite HRT. It is a cause of, and can result from, chronic sensory overload. This was not helped by the life changes resulting from uprooting across the world with my husband and kids. All the societal expectations of being a woman “managing” a household whilst appearing willing and grateful were too much for me when my capacity was already so drastically reduced by fluctuating hormones, and continuing to spiral.

As my little boys were growing up, I noticed their neurodivergent traits. Whilst researching this, I happened across a YouTube video presentation by Professor Tony Attwood into the female presentation of autism, and totally related to everything. I immediately self-diagnosed.

I was privately diagnosed autistic and then ADHD before my fortieth birthday, and before either of my children had reached the top of the public mental health waiting list.

Late-diagnosed autism is increasingly common as The Lost Generation of female autistics are slowly becoming identified later in life. In midlife, our masks are impossible to maintain, our basic self-care skills may regress and we have very limited energy. This can lead to increased sensory meltdowns, emotional dysregulation and episodes of The Rage. Our regressions can be mistaken for general burnout, but autistic burnout and autistic perimenopause are wholly different beasts.

I know I repeat it a lot, but autistic women are three times more likely than non-autistics to die from suicide in our midlife years. Appropriate support and health care are essential, but services are uninformed and lacking skills in working with autistic women.

It was at the time of my neurodivergent uncovering that I needed a periodontal gum graft, which was a harrowing experience given my extreme and pre-medicated anxiety at that time, with a long recovery. My periods soon began to get closer together, spontaneous and heavy. They quickly became one long permanent bleed, which caused immense sensory overload and daily distress.

This chronic bleed was accompanied by constant lower back pain and cramping, as well as low iron levels and absolute exhaustion. Eventually I ended up having a Mirena inserted when having a check up with a gynaecologist. This was fantastic and my bleeding immediately stopped, and with it went my pain and constant sensory overwhelm. I am quite worried about pain that will accompany the removal of the Mirena in the future, but perhaps I will end up having a hysterectomy to put an end to all of this in the meantime. (Update: Mirena removed, and I remain on the public gynaecology list to discuss the prospect of a hysterectomy…)

I have had countless multiple system symptom clusters throughout my perimenopause to date: all over body rashes, hairline recession and thinning, increased facial hair, bladder stress incontinence, exhaustion, anxiety and panic, hot flushes, extreme bloating and constant eating, too fatigued to exercise, lack of libido, constant sweating and body odour, palpitations, tinnitus, muscle and joint pain, frequent injuries, intrusive thoughts and suicidal ideation.

My functioning regressed to a very debilitating extreme, where I was immobilised by fatigue and complete lack of motivation or initiative. Brain fog and word finding problems made my autistic communication issues even harder, so asking for help was challenged. It seemed the more help I needed, the more unobtainable it was.

I have also discussed my symptom progression in this podcast episode.

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

My GP is great - he job shares with his wife and so I have the option of seeing a male or female GP. I usually see him because he has experience working in psychiatry which is invaluable in supporting me to manage and titrate my ADHD stimulant medication. Not to mention empathising professionally with my lifelong anxiety. I had spoken to both the GPs briefly about my perimenopause symptoms but they did not have experience in this. I had had a recent ultrasound scan to follow up on my bleeding issues and the female doctor said, “No, you can’t be (peri)menopausal because I can see from your scan that you had just ovulated”.

By this point, I had read up extensively on perimenopause to the detailed extent, as only a hyper focused neurodivergent woman can! Having had to self-advocate for myself and advocate for my neurodivergent children by educating doctors on the female and more subtle presentations of autism and ADHD, I had no energy nor motivation left to educate them on perimenopause.

It was essential for my regressing capacity that I see a specialist as soon as possible, and one with a neuro-affirming approach to working with autistic patients with a complex background and presenting with severe perimenopausal symptoms.

Finding such a doctor continued to be prolonged due to New Zealand health system waiting lists, and needing to fund a private consultation and ongoing reviews. All the while I was regressing further and losing skills to care for myself, channeling my energy into looking after my children and maintaining a crumbling facade that I was coping.

Seeking medical support was met with repeated refrains of: “You are too young to be perimenopausal”, “You don’t need HRT”.

I had to go private to be taken seriously. It was extremely validating to finally meet a doctor who trusted that I knew my body well enough to know that something was changing.

What has your treatment protocol been in managing your autistic perimenopause?

My hypersensitivities and sensory processing differences are accommodated using a range of therapies, in order to support my emotional regulation as much as possible. I also need to use autism specific techniques such as energy accounting, pacing, spoon theory, scheduling rest, personal training, using visual timers, having a cleaner and support worker.

I have had to learn about and embrace chronic illness support strategies, since my perimenopausal capacity/mood fluctuations and treatments have at times caused immobilisation and/or total shutdown. My Dad has recently died and the grief has exacerbated all my symptoms too, and it is impossible to unpick which issue is causing which symptoms and treating them in different ways.

At this stage I have HRT doctor with an interest in neurodivergent perimenopause. She has diagnosed premenstrual dysphoria disorder (PMDD) retrospectively, therefore hormonal fluctuations are potentially volatile times.

In order to flatline my natural hormone production, I am now in a chemical menopause. Using a drug called Zoladex, I have regular implants injected into my subcutaneous belly fat of GnRH-analogue. This has suppressed all ovulation and zeroed my hormone levels so that the fluctuations can no longer occur, thus no longer causing my mood and capacity to soar, plummet and spiral in such an unpredictable way. Add-back hormones are titrated using HRT and I use oestrogen patches, oestrogen gel, testosterone gel, a Mirena IUD and Utrogestan pills (used vaginally at night) for Progesterone, Ovestin for topical oestrogen cream. This is currently working well and I have a familiar regimen. The chemical menopause is temporary and reversible, although I have no desire to have another period ever again.

This is not standard practice in working with perimenopausal patients and, as far as I am aware, Zoladex is primarily used to suppress hormones when treating breast and prostate cancer patients, as well as for some gynaecological conditions including PMDD and endometriosis. Not all women will be comfortable with this treatment plan, but I was desperate as I was experiencing suicidal ideation when my hormone levels plummeted, and had no consistency in functioning and capacity as a parent.

My grief for my Dad was crippling, adjusting my anti-anxiety/anti-depressant medication dose made it worse. My usual ADHD stimulant medication was causing an extreme daily medication rebound, plunging me into a depressive state. ADHDers are at increased risk of suicidality, because we have lagging emotional regulation, and we are spontaneous without thinking through the consequences.

I was in a constant state of apathy and unable to engage with people, so it was critical that my treatment plan take my hypersensitivity to medication, HRT, my own hormonal fluctuations and demands placed on my energy at that time, in line with my autism and ADHD diagnoses.

Since there is so little academic research into the menopausal transition as experienced by autistic people, we either receive no appropriate treatment, do not respond to typical treatment, or we are required to be trailblazing guinea pigs. I have taken the latter option, since I have researched the topic in depth and have a HRT doctor who is willing to support me in trying different treatment options. Although there is very little research so far, she can identify patterns in her patients who present similarly to me and other case studies she is aware of.

My HRT doctor is a fellow visual thinker, and she produces her own graphics and information sheets for her patients, as well as for free via social media. These are useful accommodations especially to neurodivergent people, as we deserve equitable access to health data and medical knowledge in a range of presentations. Due to our executive functioning challenges and communication differences, we have unique struggles in accessing adequate healthcare in midlife.

Autistics often have co-occuring conditions such as ADHD, anxiety, chronic illnesses, hyper mobility conditions etc., which are also sensitive to hormonal fluctuations. We may find ourselves constantly trying to balance our hormones and trying to create holistic equilibrium, rather than ever truly distilling peace in our homes or seeking a “cure”.

We don’t want to be pathologised our cured, but we deserve to live with a quality of life that minimises our challenges, boosts our strengths, and not having to mask our differences in order to make other people feel more comfortable. Having additional support needs ought to make us in greater need of adequate perimenopausal healthcare, yet disabilities often present extra barriers in accessing the right services.

Sometimes we are too complex and/or too far outside the norm to be properly understood and supported, which is incredibly ableist and medical gaslighting is rife for our community.

Telehealth is an excellent leveller where available, as it removes access barriers, reduces the postcode lottery effect, limits the impact of executive functioning challenges that prevent us having to be somewhere at a certain time and having to rely on childcare, which is scant for many neurodivergent families.

Zoom and video calls make it easier for vulnerable patients to safely access medical care, with less re-traumatising if they have previous medical trauma. Text reminders of appointments are invaluable to people like myself who do not feel the typical passing of time, and have a limited working memory (which is close to nonexistent in perimenopause).

Having paperless appointments and medical admin is really efficient too because then we can’t lose prescriptions, misplace medical letters nor need to be responsible for rebooking follow up appointments etc. Digitising these steps improves accessibility for everyone, and I especially appreciate my doctors sending my prescriptions directly to the local pharmacy with three months worth of repeats, so that all I need to do is turn up to collect my medications. Assuming they are not in short supply as oestrogen patches were earlier this year.

I am dependent on a high dose of HRT to optimise my functioning capacity and stabilise my mood, so I was required to call all the local pharmacies and in other regions around Aotearoa New Zealand, and get my patches mailed out to me. It is a cruel irony that the more support you need, the louder you have to shout for it. Oestrogen gel has become a great alternative and has a secure supply chain currently.

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

The lives of autistic midlife women often feel like we are constantly firefighting, battling one family crisis after another. Our constant state of hypervigilence exacerbates our anxiety, making symptoms worse. Many of us are simultaneously raising autistic children, whilst supporting (undiagnosed) autistic parents, and running on empty.

During perimenopause, our increased sensory and emotional dysregulation can make it much harder to parent. It is awful that the timing of this clashes with our children’s puberty, and I for one have many a pointless argument with my kids for no apparent reason other than we are just all completely strung out. If I didn’t know I was autistic and perimenopausal, the chronic guilt, shame and embarrassment would completely overwhelm me. Without HRT and anti-anxiety medications, I would be an inconsolable raging mess.

Neurodivergent parents tend to have neurodivergent children who require more/different care, attention, energy, motivation, focus and so on from us than neurotypical children do of their neurotypical parents. Our children require 24/7 co-regulation, are often inconsistent sleepers, need reasonable accommodations around their education. Many parents are either constantly trying to engage with schools to have their children’s support needs met, or homeschooling them.

It is ironic that the more support needs a child has, the less capacity their perimenopausal parent often has to offer them. (Or is that just me..?)

There are no external support services available that ensure parents get adequate respite where I live. What few public services that do exist are over-subscribed, under-staffed, under-funded, and their philosophies may not align with the emotional safety of neuro-affirming practices. Often our children are also anxious and depressed due to their neurology, but even neurodivergent children experiencing suicidal ideation from a young age will often not be deemed at risk enough to reach the threshold for child and adolescent mental health services (CAMHS). So we watch our children struggling, and devote all our energy into their needs, whilst our own needs go unmet.

My household management demands are greater than those of the average too, with everyone in my house only eating a limited range of “safe foods”. These options often change with no prior notice and I can end up with a freezer full of foods that one child would only eat one week, then refuses to ever touch again (I’m looking at you, frozen pizzas).

At a time in my midlife when I should be modelling a healthy diet, preparing nutritious meals and enjoying family dinners every night, by dinner time I am often on the sofa in a total shutdown.

I co-sleep with my ten year old as he would otherwise wander around the house at night hysterically looking for me. This is totally the norm in many neurodivergent families and there is no great rush to change this, but it is not ideal when I am already fairly insomniac, waking up at night with a bulging bladder, and can not moderate my own body temperature.

I spend al lot of my time advocating for my kids with the health service, to receive appropriate care and support. It is an enormous burden during autistic perimenopause, but it is the only way to cope in this world which has not been set up for autistics.

This “work” is of course all voluntary, unpaid labour, requires hours of research into the best support for neurodivergence, all whilst facing criticism and blame for parenting the way I do and my children behaving as they do. It is all thankless, exhausting and demoralising.

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?

All of the above, it has just been awful! It is getting better in my chemical temporary menopausal state, but having a permanent conclusion from a surgical menopause (hysterectomy and oopherectomy) with carefully titrated addback hormones is my treatment plan. Not knowing if or when this may occur is frustrating and keeps me on edge all the time. So I guess the constant uncertainty layered with years of random unexpected symptoms is especially difficult for me. I hope to/anticipate feeling more settled physically, emotionally, sensorially, cognitively and psychologically once I am post-menopausal.

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?

• Being assessed simultaneously as autistic, ADHD and perimenopausal, with an appropriate care plan immediately put in place.

• A disability doula AKA “Crip doula” which is a fellow disabled (or in this case autistic/neurodivergent) person who offers a cross between peer support and dedicated practical care, given to a newly diagnosed disabled person. If someone could have taken my hand and led me through the assessment/self-identification process, explained and supported me with disability funding and carer support based life admin, encouraged me to unmask safely, create a neurodivergent-friendly home space where I could learn who I am and what I need. Instead, I am still having to figure this out for myself as I go along…

• A network/community of neurodivergent people who readily accept newcomers and show us the ropes, so to speak. A place to feel whole and validated at my most vulnerable. What really happened for me instead was that I completely cracked to pieces, having to rebuild and assimilate my life around autistic perimenopause. I still feel fractured even though I have formed a great network alongside like minded, late diagnosed, new found friends. It shouldn’t have to be this hard.

• People talking about “autistic perimenopause” so we know what to expect. If only it were a term that we already had in our everyday lexicon, but we are all working on that now together. Instead of that, we are lucky to approach perimenopause already knowing about it, and recognising autism in ourselves.

• Meno-D being part of the screening process for people experiencing mood changes in perimenopause to assess risk of menopausal depression.

• A whole family screening process for neurodivergence and co-occuring mental health conditions. If a child or parent is being assessed for autism, ADHD or similar, surely the immediate family should be assessed. As they say, the apple never falls far from the tree. It would save people so much money, grief and stress if we could all just be identified at once and get on with our lives. Instead of that, we spend years of asking ourselves “Am I? Aren’t I?” and “Are they? Aren’t they?”. We retell our traumatic family stories to every professional we engage with over and over again, retraumatising ourselves by no fault of our own. It is unnecessarily harmful. If we were to able to opt in to family assessments, we could put an end to the intergenerational trauma of all going through life undiagnosed until we hit a crisis point.

• Not having to explain everything to other people who didn’t believe nor validate me

• Reassurance that auti peri can be entirely different from regular perimenopause, and that it is a vulnerable and complex yet inevitable life transition

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

None specifically, and perimenopause is a relatively newly known issue here in Aotearoa New Zealand. The Davina McCall documentary was definitely an eye opener here for lots of women. I am from London, so I can’t comment on what menopause knowledge there has been prior to this in Aotearoa New Zealand. Currently there are many doctors who are interested in learning about treating perimenopausal women, but I don’t think it’s the norm yet in the public health service or in primary care.

There are a couple of high profile female doctors who do a lot of brilliant work on social media, educating other GPs and lobbying the government around getting more HRT options available here. The oestrogen patch shortage was a pretty critical issue as the supply was worryingly low at one point. I have had to make many calls to pharmacies and chase up my prescriptions so that I didn’t run out and experience suicidal ideation again. The doctors often work independently of each other though rather than collaboratively.

New Zealand is part of The Australasian Menopause Society (AMS) which has an excellent website with loads of information sheets, plus a database with AMS Members who are doctors with a special interest in women’s midlife and menopause health. Many of the AMS Members listed are GPs who run private clinics alongside their general (public) clinics. This results in midlife women having to pay a lot of money to get ongoing healthcare that the patriarchal misogynistic public medical system can not provide. This leads to inequity in access to adequate menopausal care based on financial constraints and racial discrimination in a bicultural country (Māori indigenous people and Pākēhā European-descent NZers).

As it requires the individual GP to have an interest in menopause and women’s midlife health to educate themselves, there are enormous inconsistencies around whether or not you will have someone to see at your local GP medical centre. Some doctors are aware of the symptoms, are confident at treating/exploring menopause and prescribing HRT, and others are not.

New Zealand has a laidback culture where people do not like to be seen to complain, and they just get on with things. This is pretty undermining for women who need additional support in midlife, but might be afraid to let others know, or not know who can help them.

There are some great books on perimenopause by New Zealand based authors: ‘Don’t Sweat It’ by Nicky Pellegrino, ‘This Changes Everything’ by Niki Bezzant, and ‘Hormone Repair Manual’ by Lara Briden. It is definitely a topic midlife Kiwis are getting more familiar with.

There are private GP clinics, public GP clinics, public and private gynaecologists, and patients are definitely subject to a postcode lottery. Also, word of mouth is an important element of anything here in New Zealand, people like getting recommendations. This is helpful for perimenopausal women who don’t have the energy to spare seeing different doctors hoping they might be able to help.

We have experienced a shortage of HRT patches this year, and frequently have pharmaceutical supply issues affecting female patients. We have fewer approved pharmaceutical medication/HRT options here than in other parts of the world too, which is frustrating. Oestrogen gel has only just been approved for funding by the public health system, and women often have to pay a premium to have their menopausal symptoms medically managed. Many HRT items are cost-prohibitive to many women.

In order to receive adequate menopause treatment in Aotearoa New Zealand, a woman needs money, tenacity, energy, education, knowledge, connections, confidence, initiative, and the executive functioning skills to follow through on daily HRT regimens.

It is medically misogynistic that we are needing to work so hard for the right treatment, to enable us to continue working so hard in our undervalued, overworked and thankless tasks.

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

• Websites, webinars, podcasts, online group coaching (I can find one-to-one coaching really intense)

• Leaflets - I love a leaflet, but haven’t seen any about autistic perimenopause…

• Community groups - in real life and online. Homeschooling groups are great for this! There is nothing unique about my story - lots of former teachers opt to homeschool, and many of us realise our neurodivergence in midlife as our kids are getting assessed. There is a wealth of untapped potential community support and networking within this demographic.

• Disability doula - this would be the dream for anyone needing intensive support following a new diagnosis of neurodivergence. I don’t know of any doulas specialising in neurodivergence though.

I have compiled a roundup of resources on autistic perimenopause here.

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

Visually: online, posters, academic research articles, TV.

Auditory: Podcasts and audiobooks

I struggle to read books these days, but I do love an ebook with the accessibility feature on my phone enabled to read aloud to me.

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

That autistic women are at three times higher risk of dying from suicide in midlife than non-autistic women. We are an extremely vulnerable population yet many autistic women continue to go undiagnosed and unidentified as such due to medical misogyny and the stereotype of autism being a white young boy lining up his toy trains. This does an enormous disservice to us all.

For those of us with co-occuring ADHD, it is important to be aware that 1 in 4 ADHD women have attempted suicide.

Women are often misdiagnosed several times over by the time they reach midlife with anxiety/panic/personality disorders, when it had been autism all along, with patterns of dysregulation/depression in line with their hormonal fluctuations.

Yet these patterns are often only spotted retrospectively, by which point women have been blamed for their differences as labelled as difficult, lazy, over dramatic, over sensitive, insensitive etc.

We are always labelled by others, but I for one was delighted to trade in all those societally-labelled moral character flaws for the correct labels of autism, anxiety and ADHD. With those misguided labels comes decades of shame, guilt, regret, self-loathing and so on. This all continues to affect us well into midlife, with our symptoms becoming so extreme in midlife that, if we don’t know we are autistic and perimenopausal, we may assume we are losing our minds and are a burden to everyone.

Our autistic communication differences make it more challenging for us to communicate effectively with doctors and healthcare practitioners, which is a risk factor in getting the support needed to improve quality of life.

HRT is definitely a life-preserving treatment for me; without it, I would have taken my own life. Many women are unable to access information to educate themselves. We may lack the self-advocacy skills to voice our feelings. We are vulnerable to medical gaslighting and medical misogyny, believing misguided doctors who tell us we are too young to be perimenopausal.

There are structural barriers to accessing medical facilities for many autistics with mobility limitations resulting from chronic illness or other conditions or disabilities.

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

I have rambled long enough, so I am going to stop now!

Thanks for reading my Q&A, and here is a medal for you if you made it this far! 🥇

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