"I am still in the process of unravelling myself and what has happened throughout my life, but can see now how vulnerable and naïve I am, and how my life has been impacted because of it."
Hi, I’m Sam (she/her). A late diagnosed neurodivergent woman, tenacious midlife struggler, and 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.
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 of urgency that we bust the social taboo and get used to talking about this.
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Today’s guest is Megan Hansen-Knarhoi (she/her, they/them).
“My name is Megan. I’m 50. AuDHD sole parent to an AuDHD 8-year-old. I live in Turanganui-a-Kiwa, Gisborne in Aotearoa New Zealand. It has been home for the last 10 years. I have no family support; I am parenting all alone.”
Ko Tenemāka, Ingarangi, Kōtirana, Airihi, me Tiorangi, te whakapaparanga mai. I tipu ake au ki a Papakura, ara i Tāmaki Makaurau.
E noho ana au i raro i te manaakitanga o ngā iwi o Te Tairāwhiti.
Kei te noho au i raro i te maru o Tītīrangi. He takiwātanga me aroreretini au. Ko Megan Ruth Hansen-Knarhoi taku ingoa. Kotahi tamaiti anake. He takiwātanga me aroreretini ia hoki.
I am a non-Māori person who acknowledges and is committed to the principles of The Treaty of Waitangi. I have ancestors from Denmark, England, Scotland, Ireland, and Iceland. I grew up in Papakura, Auckland. Now I live under the hospitality and generosity of the many Iwi of Tairāwhiti, and under the shelter of the mountain Tītīrangi. I am autistic and ADHD and have one child who is also Autistic and ADHD.
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What does “autistic perimenopause” mean to you?
That's a tricky question to answer, because in retrospect perimenopause probably started somewhere in 2020, before I was diagnosed. I was diagnosed ADHD in 2023, and just this year as Autistic. So retrospectively, it was full of extreme emotions. It has been torturous. Heightened sensations, restricted functioning, and lots of physical pain. I'm still in perimenopause I think, and feel like I'm regressing further emotionally to some very early childhood behaviours, especially of avoiding social interaction. This week I have only left the house to walk kiddy to school.
I also think it means that I am hyper-connected to and super-sensitive to the environment, to flora and fauna, land, and people. It's like my brain operates more at an instinct level, so all the social and cultural nuances get jumbled and confused along the way. Like a person can be saying something to me, but what I feel from them can be very different. It gets really confusing. My brain works in a special way. I think it's all quite overwhelming, which is why I hide away so much.
Especially since perimenopause started and the borders between nature and nurture and society and culture, even though they are to some extent inextricable, have fuzzed more. And I don't know if that makes any sense.
I feel slightly reticent and hesitant about sharing my experiences, as I am by no means sorted. In retrospect I’ve lived my whole life this way. There are just times when I’m managing things better, and times when I’m not managing at all.
Most of the time I feel like a scruffy, chaotic, unsuccessful, invisible person. The person who is too much and not enough. The person who doesn’t fit in.
Online friendships leave me feeling emptier and lonelier than just being friendless in my ordinary life, so I find it difficult to keep in touch with friends who live in other places (which is my current reality since my bestie moved to a different country over a year ago).
Politically I would love to identify as non-binary, as I don’t feel like a woman, nor a man, but I have enough to deal with without having to explain that I’m a “they” or “them” to everyone. There are only so many things I can do. Thus, my pronouns are she/her, but I also like they/them.
I’ve only just started coming out to people that I’m Autistic and ADHD, and the typical response is “oh, I think everyone’s a little bit Autistic/ADHD these days”, which is so invalidating when my life has been so extremely difficult!
When did your autistic perimenopause symptoms start and what are they?
During the first ever Covid lockdown in 2020 I had a frozen shoulder (I didn't know it at the time, but have since learnt bursitis is very common in people entering perimenopause). My shoulder caused me constant severe pain, and I was looking after my very difficult child (undiagnosed at that stage), and trying to work part-time from home.
I couldn’t see a doctor due to all the lockdown restrictions, and every time I had a phone consultation, I was prescribed another painkiller to try. They either made me extremely nauseous (I have auto-immune compromises, including a bowel disease, Microscopic Colitis) or would impair my cognitive function. So, I had to endure the pain.
On top of that I was having extreme mood swings, giant rages, periods every three weeks, and soaring temperatures just before falling asleep at bed time which would leave me wide awake, then, when I did sleep, I'd wake up cold due to being drenched in sweat.
I was also extremely sensitive emotionally, more so than usual, and suffering Winter-long depression (I have since realised I suffer from SAD Seasonal Affective Disorder).
What happened when you presented with autistic perimenopause to a healthcare professional?
I didn't.
In January 2023 my life fell apart. I had a breakdown (I have had many breakdowns throughout my life). I had to resign from my job. I went to my GP and cried solidly for an hour.
After tripping and stumbling through various public and private health services over the last 30 years (various GPs, Counsellors, Social Workers, Psychotherapists, and diagnoses and medications for Anxiety and Clinical Depression, and a continual misdiagnosis of Borderline Personality Disorder have not been at all helpful either), I eventually started seeing a Psychologist in May 2023. A couple of months later I was diagnosed ADHD. Two years after that, I was finally diagnosed Autistic by a Psychiatrist on Friday 21st March 2025.
The only way I’ve ended up being diagnosed AuDHD is because all my undiagnosed neurodivergent related symptoms were heightened with the onset of perimenopause. And luckily but unluckily, I was able to seek help (with public funding) because of C-PTSD (complex post traumatic stress disorder), which I first sought help for in 2003. It took another 20 years to finally start to get to the root of my difficulties.
I am still in the process of unravelling myself and what has happened throughout my life, but can see now how vulnerable and naïve I am (amongst other things), and how my life has been impacted because of it.
What has your treatment protocol been in managing your autistic perimenopause?
My GP is very supportive, but has no expertise in Autistic Perimenopause. I currently take 200mg Progesterone orally and 100mg Estradiol transdermally.
My GP made a referral for me to see a Gynaecologist, because when I have penetrative vaginal intercourse, I bleed for a week. However, the referral was declined because my case was not severe enough.
In desperation I went to see a Menopause specialist privately. I got some good advice, but the issue has not been resolved. Now, as well as being socially avoidant, I am now intimacy avoidant, because no sex is worth bleeding a week for. It is excruciatingly frustrating.
I have been alone for so long and crave intimacy and desire a relationship, but it feels like my body is in complete rebellion and counterproductive to my needs and desires. I am demisexual, but it's very difficult to meet anyone to develop a bond with.
I walk my kid to and from school. I volunteer at a native tree trust once a fortnight. I go op-shopping and grocery shopping once a week. The rest of the time I garden or crochet or read.
I still feel like I need a lot of help, but do not know where to turn. I am limited by a very low income. I do not have, nor can I afford Medical Insurance.
How has your everyday life been impacted by autistic perimenopause (your caring/employment responsibilities, hobbies, relationships etc.)?
Above and beyond caring for my special needs AuDHD child (he is incredibly clever and goes to school, but struggles) there is not a lot I feel able to do. I am very lonely and isolated.
I struggle to make friends and am hyper-aware and hypersensitive. I overshare. My binary thinking and monotropism can be quite debilitating. I can only talk to one person at a time, and I've only recently realised that because of this I unintentionally block other people out, which I can only imagine must seem incredibly rude. It's not intentional! I can only do one thing at a time.
I do a lot of gardening, crochet, and try to sell thrifted clothes as well as the clothes I have collected over the years but never wear because I never go anywhere or do anything. My working memory is poor, and I have executive dysfunction, and PDA (the pathological demand avoidance/pervasive drive for autonomy profile of Autism), so organising information and performing uninteresting tasks is particularly challenging (like editing this post, it's taken me ages to get to it... sorry Sam!). I find if I don’t do something straight away, it is nigh impossible for me to do it.
I can do the laundry regularly, but running the household is very difficult. I can do the dishes once a week. Vacuum every other week. I clean the toilet and bathroom when I see they are dirty. I started repainting the exterior of my house, but have got a quarter of the way through and can’t do any more. So, the outside of the house is a mess too. I can’t afford to pay anyone to do it for me.
It is extremely difficult to have visitors to our home. My son can become dysregulated very quickly when another child enters his space, and any visit can end up being a disaster. I don’t really have the social skills to cope with it, so I don’t invite people over much, it’s too hard. Plus the house is usually a complete mess.
I’ve tried to find a place for us in Gisborne, but it’s tough as we don’t seem to quite fit anywhere. We’ve been to an event with Takiwātanga Tairāwhiti, but we didn’t fit in. He's hyperverbal whereas a lot of the tamariki (children) at the event were non-verbal with much higher needs. I feel guilty because I don’t take my son to any extra-curricular activities, because just doing the basics is exhausting and I don’t have any more energy to manage extra things.
Employment-wise I found my niche in the Arts and Culture sector and spent most of my life working in Art Galleries and, for the past ten years, Museums. The sector is notoriously low paid, so I learnt to be frugal early on in my career. Before the birth of my son, I had an established practice as an exhibiting artist for a good ten years, which took me as far afield as Portugal.
I am extremely good at repetitive tasks, love researching and writing about topics that interest me, love a variety of sedentary and physical tasks, and have excellent attention to detail, all assets for my role as a museum Collection Technician. My skills and experience evolved, but my job title didn’t. I was never able to secure a higher level job in the next tier or pay level despite my efforts and overachieving at every task at any of the institutions in which I worked, no matter how many jobs I applied and interviewed for.
I’ve been a project manager for a finite project, and I curated the inaugural PRIDE exhibition at the museum I worked at, of which I am incredibly proud (I only received my regular Collection Technician wages and did not receive any additional remuneration for the work I did above and beyond my job description). As someone who seeks equity and fairness, I feel like I was treated poorly by my employer. I did not address any of the unfairness I felt because I didn't know how to, but also knew it wouldn't make any difference.
I’ve never been able to prepare for job interviews, so they usually go pretty badly. But there’s also something about me, that I still don’t understand, that is undesirable, and think it must have something to do with me being odd. I applied for the same position three times at my previous employer, and was rejected three times. It still humiliates me, even though rationally I know there were parts of the job I would find impossible, like organising large amounts of information, and dealing with people, which I find exhausting, and I think I unintentionally offend people too (but don’t know how or why). But as someone with rejection sensitivity dysphoria (RSD), my goodness, years later I still feel the job rejection.
I’d love to do more curating, but know my people skills are lacking, and that there is always someone better than me who can do the job better. I am excellent at seeing things from a completely different view-point and perspective, and am very creative, but I never seem good enough.
The one thing I’d dearly love in my life is a relationship. Companionship and intimacy with a safe, kind, caring, patient, understanding, empathetic, interesting, fun, silly, smart human being. This is something I have never had and am slowly accepting that I may never have.
My outlook for the future is bleak. There is some history of age related brain decline in the family. My catastrophising brain has decided I will continue to live in poverty and will probably begin to lose my mind. My biggest fear is for my son. Who will look after him when I can’t remember who I am?
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?
Not knowing I was ADHD or Autistic, but, contrarily, now that I know, the transition, in retrospect, makes more sense and gives me a little solace. I was recently trialing a medication for ADHD for the first time in my life, which was amazing. It lifted my mood, the constant ruminations and second-guessing and ear worms ceased, and I felt calm, but it made me chronically dizzy. I have had to stop taking it. It seems I am incredibly sensitive and have severe side-effects to most pharmaceuticals. I would love to try micro dosing with Psilocybin or Ketamine, but those only seem to be available to the lucky few (or those with deep pockets (full of cash)) and I'm not prepared to do it alone.
When I was medicated and had a sense of relative calm in my body and mind, I realised I have lived most of my life in a state of extreme anxiety, which I liken to paranoia. When the anxiety is relieved, I can be more accepting of myself (the internal negative chat reduces) and unmask a little. I am more able to live one day at a time, rather than catastrophise and live in chaos and dread.
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?
A change in culture where the menstrual cycle, hormonal fluctuations, and menopause are talked about openly and as much as the weather, as well as a greater awareness, understanding and acceptance of neurodivergence.
When I was a young teenager I heard my mum mention menopause, but she suffered through it in silence. I didn’t know what it was, except for it being “the change of life”, and that periods stopped. I thought it was like turning a page in a book. I didn’t know it would be hell, I didn’t know what the onset would be like, or what symptoms to be aware of. “Women’s problems” were not spoken of in my family, including menstruation.
I learnt about periods at Primary School, where I watched a woman insert a tampon into the vagina of plastic cross-section of an anatomical female, and we got given a free package of sanitary products. I remember I loved the feel, look, and sounds of the packaging. That was about the sum of my "women's health" education.
At fourteen when we moved cities and I started a new High School. I cried for about six months. No one helped me. “What’s WRONG with you?” seemed the constant refrain of my life. "Psycho", "crazy", and "too sensitive" were also words people used to describe me. The school counsellor asked me if my father was molesting me (he was not).
I didn’t get my period until I was sixteen, and with it I experienced extreme pre-menstrual depression. I would become catatonic, and my periods were painful and very heavy. But I had no one to talk to, so I stumbled along and suffered in silence. I remember going to see a doctor about my periods. I was crying and depressed and found it extremely difficult to talk. But she ignored my tears and behaviour and prescribed me an over the counter medication for period pain.
I remember weeping through an appointment at an orthodontist, who was so uncomfortable with my tears they cut the appointment short. All my teachers witnessed me crying. I felt like I leaked tears everywhere, but no one was willing to see me or help me.
I feel as though all the adults in my life who could have cared for me failed me so badly. Had I received help when I was a child, I may have had a diagnosis 30 years earlier and not lived through such a shit storm of tumultuous emotions and difficultly with friendships and awful relationships.
As I got older, I fell more and more behind the “normal life goals” my peers were achieving. Academically I did very well at University, but it took me a lot longer to achieve my degrees. All my problems intensified. I was so depressed and lonely. I struggled with binge drinking and drugs and pretty awful relationships.
Now, every time I bump in to someone I know, I overshare about Menopause, the symptoms, and getting on to a GP ASAP to get medicated. I grew up in a household where my physical needs were met, great food and good clothing in a warm house, but I needed so much more.
What I needed most was emotional support, and in that area was a void. The neglect hurts to this day.
Now I have a child of my own, if anything I overcompensate for what I lacked. I try so hard to meet his needs and advocate for him, because my lived experience of being invisible was absolute hell. I am very proud to say we have a strong and healthy attachment. He is my joy.
What supports, resources and services are available to people experiencing autistic perimenopause where you live?
What kinds of services, resources or supports would you find most helpful?
A small face-to-face in-person group meeting of neurodivergent perimenopausal people with a facilitator, so we could talk about our lives, and perhaps cover a different topic each week. Kind of like group therapy. But with coffee and snacks and laughter and safety.
What is the easiest way for you to access information about autistic menopause?
I have a short attention span for topics that do not spark my hyper-interest. Perimenopause is not a hyper-interest. So, most of my education has come from reading memes on Instagram accounts I follow. Or speaking to people in person. I am easily overwhelmed by too much information, so a meme is perfect amount of information. However in saying that, I have found the Auti Peri posts and guest posts educational.
Video calls and phone calls do not meet my human need for social interaction.
What would you wish for all people to know about autistic perimenopause?
Empathy is the best response, rather than uninvited advice.
Is there anything else you’d like to share regarding your autistic experiences of menopause?
I’m still trying to unravel my autistic perimenopause experience, and it is still unravelling. I am becoming more and more reclusive. I hope by writing about it someone may be able to relate.
What I struggle with the most are the things I don’t have answers for. I don’t know why I bleed from penetrative sex, but I understand that it somehow triggers my body to have a menstrual cycle (at least that is what it feels like). I don’t know where to seek help.
I don’t understand the pain I get, like there are hot drills being driven in to all my joints, especially in my hips, which usually wake me up in the mornings with terrible pain. It’s like all my nerves are on fire. Even my teeth hurt.
I don’t understand why I experience dizziness at the onset of Autumn, when, upon turning my head quickly, looking up, or getting up off the floor causes light-headedness, similar to the sensation of falling (this sensation increased on the ADHD medication so that I also had an electronic type of dizziness pretty much every time I moved my head).
My Psychiatrist suggested I may have Ehlers-Danlos Syndrome, but that doesn’t really fit with my symptoms. Do I have Ménière's disease? I don’t know, I don’t know, I don’t know. I figure they’re a part of my auto-immune problems.
I still need help!
Disclaimer: I do have happy times in my life and I love my cat and super love my super kiddy. I am a fun, funny, smart, empathetic, kind, creative and passionate person. My only addiction these days is to coffee and chocolate (not ingested at the same time). Something I've started to practice which I've noticed is beneficial for my brain is saying something I'm grateful for when I'm doing the bedtime ritual with my kiddy. Sometimes it's being grateful for the sun shining. It helps. My second-guessing myself brain is telling me my post seems super negative and that I come across as super boring and serious, so I'm yelling at the top of my lungs I'M SUPER COOL AND FUN TOO!!!
I hope you have enjoyed this Q&A. If you would like to be featured as part of this series, please contact me. I’d love to share your story!
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Perimenopausal hyper interested AuDHD’r and love to see we aren’t alone on so much. That there are others like me, feeling it all, in hyper drive!