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.
In this series, I host a Q&A interview with a fellow autistic person about their experience of the menopause transition.
Everyone’s experience of the autistic menopausal transition is different. I aim to elevate the voices, lived experiences and reflections of autistic people’s menopausal transition.
Autistic perimenopause is a highly individual, dynamic and sometimes prolonged life stage caused by reproductive hormonal fluctuations. As autistics can be highly sensitive to bodily and environmental, we may experience fluctuations as physical, psychological and cognitive symptoms.
Academic research into auti peri is in it’s early stages, yet it is a matter or urgency that we bust the social taboo and get used to talking about this.
Fun fact: The Autistic Perimenopause: A Temporary Regression is fuelled by caffeine. If you would like to buy me a coffee, the button above will take you to my page. Thank you! ☕️
50+ AuDHD digital marketer, personal trainer, business owner and vocalist/musician.
“I love information and learning and I’m passionate about design and also about fitness but in a fitness for all kind of way. I run a digital marketing business and a small personal training studio which has been set up for low sensory training. I have three sons who are AuDHD and an AuDHD husband.”
Nikki lives in the Wairarapa, Aotearoa New Zealand
What does “autistic perimenopause” mean to you?
I’m now on the other side of perimenopause and thank goodness for that. Perimenopause was a hard time, I probably didn’t realise I was into it until I started to get hot sweats and heavy periods.
I also only self diagnosed a year or so ahead of my cycles stopping, so up until this point I had no idea I was autistic, although. I always knew I was different.
I can’t really talk about menopause without reflecting on my adolescence. I really struggled with this time in my life and in hindsight I realise it was because of autism and ADHD. I really had no conception of my gender really until this time. Yes I knew I was a girl, my mum placed me in dresses and girly things but I never really identified with other girls, so growing breasts was traumatic and starting my periods, alongside the other stuff like hormones.
I became very isolated in my teens and didn’t want to go to school after being an exceptional student up to this point. I hated being in school, girls were hard work, boys were hard work, teachers were hard work and just being out of the home was hard work. Perimenopause felt the same way.
So I think I’d say autistic perimenopause is another time where we have to come to terms with our identity, and gender and changes in routine and life - plus the overarching hormonal problems that come along with it. I’m glad I’m out of the other side.
When did your autistic perimenopause symptoms start and what were they?
Looking back, I’d say they started when I was around 40, I started to feel emotional and depressed. I had night sweats, I was overweight, I had mood swings and I would lose control really easily.
Gradually over the period of 10 years things grew worse. I had super heavy periods that I really couldn’t deal with at all. I’ve always hated my cycle.
I got more headaches, I got sensory overload. Some of the things I attribute to my neurodivergence are suicidal ideation, sensory overload, heightened RSD (rejection sensitivity disorder), brain freeze and increased meltdowns.
What happened if/when you presented with autistic perimenopause to a healthcare professional?
I hate medical professionals, so I have to be feeling really bad to present anywhere. I always felt like they didn’t take me seriously.
I only requested help with HRT (hormone replacement therapy) at the time my periods were about to stop. At this time I was also waiting to be seen by a psychiatrist for an ADHD diagnosis. I attribute most of the problems I was having with hormones at this time to ADHD. My brain was literally frozen. I started to worry that I had dementia of some kind.
My husband couldn’t understand why I couldn’t open my emails. I’m a freelance digital marketer and website designer, working with complex tech, I usually can do this stuff but I just could not manage my workload, my RSD was super high and all I could manage to do was go to the gym which kept me sane.
Anyway, I got to the doctor and he gave me the combined pill which was the treatment for people who are still having periods (this is what he said) and this in my case was a terrible idea.
I was a competing CrossFit athlete who had given up drinking, so my body was pretty clean of anything at this time. The combined pill made me feel flat and lethargic and suddenly all of my joints became super flexible like when I was pregnant, my deadlift dropped from 110ish kg right down to 70kg and all the work I’d put in became worthless.
I was getting painfully injured more often, it was the gym that was keeping me sane and this really affected me. I decided to look up if there was a link between progesterone and loose joints in neurodivergent as I already have hyper flexible joints - and I found a link in a reputable science document. I stopped taking the pill to sort out my joints and my cycle never came back when I stopped.
What has your treatment protocol been in managing your autistic perimenopause?
At 47, I found the gym. I’d written off being athletic and this was something new. I’d piled on a lot of weight and was weighing around 132kg at this time. Gym gave me something to feel good about. I enjoyed moving and I think it was the fact that I chose CrossFit which was varied every day and challenging (and of course geeky) that made me stick with it.
I lost a lot of weight 68kg, which actually killed the hot sweats and made me feel good about my body again.
I gave up drinking at this time (I’m still sober). I used to use drinking to switch off my brain at night, I used to drink a lot.
I think without the gym I would have definitely been in worse shape. I had many intrusive suicidal thoughts, my brain would race and I’d want to stop all those thoughts.
At the worst, just before my diagnosis and medication, I would have three dialogues, a sound track, be doing what I was doing and trying to have a conversation in my head - that was just far too much. Exercise - particularly running, was like an active meditation for me. ADHD meds made a huge difference.
How has your everyday life been impacted by autistic perimenopause (your caring/employment responsibilities, hobbies, relationships etc.)?
I feel like there was a decline in cognitive function over the perimenopause period. I moved to New Zealand just before I was 40 and during the period of 40-50 I was declining or it felt that way.
I did start a business in this time after I bummed out of a teaching degree course. I had a lot of things collide alongside the practicum. The practicum scared the shit out of me. I can now see that even though I can get on stage and sing my heart out, judgement on my skills really kicks off my RSD alongside the fact that I was in a strange school for it and having to meet new people - plus this was heightened at this time. I bailed on the course rather than put myself through it.
As perimenopause went on - I got really really burned out to the point where - at 50 I couldn’t bear to open my email inbox.
Thank goodness for the gym, I put my heart into that because I felt like I had some control over my fitness. However I became super obsessed with the gym beyond what I should have been. I really struggled to get my PT (personal training) qualifications due to brain freeze but I pushed through and did it. My emotions were a mess, I struggled to connect with my husband.
There was COVID and then I was trying to get my middle son through his diagnosis. I didn’t really understand what was going on as I wasn’t diagnosed. Thank goodness for my son’s diagnosis as this is when I realised that this was what was wrong.
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?
In a stressful or embarrassing situation I lose the ability to communicate, I get words but they get muddled up. This was worse during peri menopause and if my husband couldn’t understand me he got cross and then I got annoyed and really angry.
My emotions were all over the place and I felt really on the edge of meltdown all the time.
I hated period products, they would overload me in a sensory way. When my periods were heavy this was worse.
The heightened hormones would make me feel like I was going into some kind of psychosis. I’m not sure if it was the ADHD though, the noise at this time was super loud and I’d have about 5 things going on in my head at once.
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?
I think more support from my partner. I have no supports in NZ. I’m estranged from my mother, and so his lack of knowledge or understanding of how bad it was for me was very upsetting.
The medical profession is a kind of alien place for me, I think they’ve always misunderstood me. I think not only is autism misunderstood but so is menopause so there’s not a lot of sympathy around.
I found brain freeze particularly scary. I knew I had to bring in money as we were extremely strapped for cash but I just couldn’t bring my brain to work at this time. I had a couple of projects and the clients I was working with were super understanding but I wish that I could have just taken some time off.
What supports, resources and services are available to people experiencing autistic perimenopause where you live?
I don’t think there are many. I was lucky in the fact that Autism Wairarapa had a decent co-ordinator at that time - she’s since left. She started a group called The Lost Generation that was for late diagnosed adults.
Also at the same time I started a project for a non profit called Mahi Tahi Tatou in Wairarapa who provide advocacy and job opportunities for disabled people. I met a lovely lady called Rebecca who gave me a shoulder to cry on. I’m now board chair of this organisation and we are hoping to provide adult support services.
What kinds of services, resources or supports would you find most helpful?
I think it’s good to sit with a group of people who are feeling like you are. I know that sounds funny from an autistic person, but autistic to autistic or ADHD to ADHD is easier than sitting in a neurotypical space.
I tried to get support from FOCUS as my son has that, but because my diagnosis was done online I am not entitled to it. MSD (Ministry of Social Development) do not recognise online diagnosis at this time.
What is the easiest way for you to access information about autistic menopause?
I am a digital person, I Google and AI the shit out of everything. I love information so I research a lot of things.
However finding people to help with things like forms and supports - would be good as they have information you can’t find online - those people know the systems.
What would you wish for all people to know about autistic perimenopause?
You are not alone. It is scary and sometimes you might feel like you are on your own. I had suicidal thoughts and they were scary. I had times when I wanted to explode everything in my life.
For the first time in my life I felt powerless. I think you need to find some connection when you feel like that.
Is there anything else you’d like to share regarding your autistic experiences of menopause?
Quite a lot of women only find out they have autism/ADHD at the perimenopausal stage of life. This is because our hormones play with the delicate chemistry in our lives.
I think there’s probably a lot of women who don’t know and probably take their own lives. Not only do autistic individuals have a high suicide rate but that rate goes up also for perimenopausal women.
Do not be afraid to talk to someone. Try and find an autistic/ADHD group that will support you. You are not alone.
I hope you have enjoyed this Q&A. If you would like to be featured as part of this series, please message me. I’d love to share your story!
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Loving this series. The gym! So important and relatable. Great to hear that you made a sensory sensitive space. I almost opted out when our gym played only techno (I wear headphones now).
Loving this series. The gym! So important and relatable. Great to hear that you made a sensory sensitive space. I almost opted out when our gym played only techno (I wear headphones now).