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.
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.
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Today’s guest is Luella Wheeler (ia/they/she).
Credit: Luella Wheeler. “I like rimurapa (kelp) as a metaphor for resilience in all tides and all weather 😄”
Ko Waitaha, ko Kāti Māmoe, ko Kāi Tahu kā iwi. Ko Kāti Pākehā te iwi hoki. He takata whaitakiwātaka, he takata whaikaha ahau. He takatāpui ahau. No Ōtepoti ahau.
My iwi are Waitaha, Kāti Māmoe and Kāi Tahu. I am Pākehā also. I am an autistic person, a disabled person and I am takatāpui – a member of the rainbow community. I live in Dunedin, Aotearoa New Zealand.
“I did not fully realise I was autistic until I was in my 40s. Finally reaching realisation and diagnostic recognition was a huge turning point in my life for the better and has allowed me to live with self-compassion. It helped make sense of a lifetime of physical and mental health challenges. I currently do advisory and advocacy work in the disability sector representing autistic needs and upholding the mana and rights of our autistic community as well as the wider disability community. Mauri ora!”
What does “autistic perimenopause” mean to you?
Perimenopause as experienced by an autistic person – which can mean some unique challenges with both symptoms and accessing support. In my case, there was a very distinct onset with clear signs.
For myself, I see it as also just part of the phase of life I am in. I have loved my 40s and what this decade has meant, with me finally coming home to myself in so many ways. That has been associated with a significant increase in wellbeing and comfort, both within myself and in my relationships. I am really looking forward to my 50s. I enjoy the self-knowledge, wisdom and liberation of this phase of life.
When did your autistic perimenopause symptoms start and what were/are they?
It noticeably started when I was age 45 with some unpredictability in my menstrual cycle, increased joint pain, and worsening asthma. The most significant symptoms, though, were changes in my mood and cognitive ability. I became very emotionally dysregulated, easily triggered, and my concentration and memory (which are normally strengths) seemed to evaporate into thin air.
At times I felt unsafe to drive and trying to keep up with work and study suddenly became very challenging. I’d find myself starting a task then immediately forgetting what I’d started doing. Once I figured out what I had intended to do, I’d be unable to focus to do it. I know that my emotional state was not a good time for my spouse or teenagers either. It was like having PMS day-after-day, week-after-week.
It is possible there were earlier signs that I didn’t notice. I have quite poor interoception, so I often don’t identify health issues until they become highly obvious. I do think I recognised my perimenopause symptoms and responded to them quite quickly though. I credit that to the autistic community and the ongoing and open discussions about menopause I’ve experienced there. I feel that in wider society it is not talked about enough.
I do think about how likely it is that I wouldn’t have recognised the signs of perimenopause had I still been facing some of the health challenges I experienced earlier in life. Particularly things like PTSD, autistic burnout, and ME/CFS, all of which I’m fortunate to now be recovered from. Had my perimenopause symptoms started when I was unwell, I may have not recognised them for what they meant within the tangle of other symptoms. Because I was well and had a good health management plan established when perimenopause arrived, it was apparent to me (and others in my life) that something new was going on.
What happened if/when you presented with autistic perimenopause to a healthcare professional?
I’ve had so many health challenges in the past so now I have zero tolerance for putting up with things.
I worked really hard to get my health back after years of chronic illness, so when I started to have new symptoms, it was highly upsetting. I only had a couple of bad months before I decided to talk to my GP. She is amazing, a good listener and strong advocate and she offered me menopausal hormone therapy (MHT) immediately. I’m grateful for that because it has helped me so much and it has definitely improved my quality of life.
I’m approaching five years since recovering from chronic illness and am very much still rehabilitating my strength and fitness, so MHT has meant I can carry on with that and keep working towards my goals.
What has your treatment protocol been in managing your autistic perimenopause?
Menopausal hormone therapy (MHT). I use oestrogen patches and take progesterone orally. I started on 25 mcg transdermal patches and, when we reviewed after a few months, I went up to 50 mcg. My symptoms resolved immediately with hormone therapy and thankfully it has worked so well for me. I’m so glad I didn’t delay seeking treatment.
I do find some variability in how I feel between different brands of patches. Fortunately, I’ve been able to access the brand that is better for me consistently for the last few months.
I already had a lot of good lifestyle habits in place that I had developed when I recovered and rehabilitated out of chronic illness, so I haven’t had much I needed to change there. To briefly summarise, that includes nutritious food, good sleep, a range of supplements, and looking after fitness and strength in ways that works well for my hypermobility.
It also includes living life with the right pace and level of demand that is sustainable for me and doesn’t burn me out. I have built a good support system around me and all those wonderful people really help.
To be really real about it too, I know I’m lucky because I live on my own terms and have a spouse with an income that covers the bills and it allows me a wider range of choices.
How has your everyday life been impacted by autistic perimenopause?
In those rough couple of months before starting MHT the symptoms were making every part of my life very difficult. Because that didn’t go on too long, I think I probably dodged some bigger impacts. But I hate to think what may have happened had I not accessed treatment so promptly. I am pretty sure my mental health would have been badly affected.
Because my hormones have been well managed, I’ve stayed well, my relationships weren’t too badly impacted, I can keep up with work and study and feel good within myself. I find it quite heart-breaking to hear when people go to doctors and are denied support.
I have heard some really bad stories, including one woman being told by her doctor that perimenopause doesn’t exist!! People deserve better.
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?
I feel really fortunate that when perimenopause started I had already realised I was autistic and had some good understanding of my experience and needs and had developed a lot of self-compassion. I also feel fortunate that my health and energy had been good and stable for quite a while. Otherwise, I know it would have been complex and challenging to navigate.
Like a lot of us, I’m hypermobile and that means I’m prone to muscle and joint pain. That was one symptom that was quite intense for me with hormone shifts. The emotional dysregulation that I experienced may have been worse because I have had PTSD, but it’s hard to know or imagine myself other than I am. Some of my friends have described their transition through menopause as barely noticeable – that has definitely not been my experience!
Historically, I’ve found navigating healthcare very challenging. Organising and attending appointments is not easy or fun. In the past I was often not recognised for the level of pain and distress I was in because of the ways I experience and present symptoms as a patient.
I’ve learned how to self-advocate effectively. Importantly, I have learned not to waste time with professionals who are not responsive or who don’t listen. I also have good support in place now, so if my self-advocacy skills are not accessible because of stress or fatigue, I have others who will advocate for me.
I had some scary experiences in the past with neglect in healthcare, so I’ve worked hard to reduce the chances of anything like that happening again.
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?
Throughout my adult life I had a growing awareness that I didn’t really know much about menopause at all. Apart from a few older women in my life sometimes joking about hot flashes, I really hadn’t learned much about it.
I had believed that at some point before I started experiencing symptoms myself, someone would loop me in and tell me about it. But that didn’t happen.
I find some people have out-of-date ideas too. I really like to have good information and understanding of anything I’m having to navigate. I sought information from online support groups, books, and research.
The information that was specifically about autistic experiences was the most helpful and relevant to me and I love our autistic community and the way we share information – openly, clearly, and generously.
What supports, resources and services are available to people experiencing autistic perimenopause where you live?
I’m not really sure, I haven’t explored these much.
Here are some links with information I’ve found interesting though:
What kinds of services, resources or supports would you find most helpful?
I really appreciate online community for sharing information. For so many aspects of life and wellbeing I’ve found those communities so supportive and helpful. They often fill the gaps that are in health services.
I haven’t found as much information and support as I’d like about going through menopause as Māori, or as takatāpui (a member of the Rainbow community). Often websites and information only refer to cis women and are not inclusive. That can feel quite alienating and unwelcoming, like that information and space is not really for me.
What is the easiest way for you to access information about autistic menopause?
Reading information online is my go-to. In general, I wish menopause was spoken about more openly. I am quite open, and I find that when I am, that others who have experiences are enthusiastic about the chance to talk about them. Those are always interesting conversations too.
What would you wish for all people to know about autistic perimenopause?
I’d like people to know that experiences can be wide ranging. For some it is a positive transition, but for others it can be incredibly challenging and present a significant risk of harm to their wellbeing, with big impacts on quality of life. I would like people to be much more aware of the barriers autistic people face when accessing healthcare, and for professionals and services to do more about that.
I always wonder about our peers with intellectual disability or who are non-speaking and if they receive the care they need around perimenopause, or if their symptoms are ever misattributed to mental health, other health conditions, or labelled as “challenging behaviour”.
While it’s only the early days of research being done about autistic menopause experiences, that research tells a compelling story and I would like more people to know those stories.
Is there anything else you’d like to share regarding your autistic experiences of menopause?
It took me a long time in life to become comfortable with my menstrual cycle and accept it.
For many years I really resented it. That was some combination of not having been given enough information, sensory discomfort, executive function, and gender identity. I have PCOS so it was very unpredictable and infrequent before I went through pregnancy, and I never really got the hang of it. My discomfort also came from holding Pākehā (non-Māori, European descendants in Aotearoa New Zealand) perspectives of periods.
I have made peace with my cycle in recent years and a large part of that has been personal decolonisation and starting to appreciate my waiwhero or ikura (menstrual cycle and periods).
In later life it became regular and started to follow the cycles of the moon. Noticing that gave me a strong sense of connection. I also switched to sustainable and reusable pads and cups which I find much more comfortable and feel happier about using.
With enjoying this feeling of peace and naturalness, I had started to think that when perimenopause arrived I would let it progress naturally too. However, given how distinct and difficult the symptoms were, how awful I felt, and the fact that driving was sometimes dangerous, I quickly adopted a pragmatic approach and decided to at least try hormone therapy. When it made me feel better, I decided it was the best option for me, at least for now.
After all the years in my life ignoring my own needs, I try now to always be guided by pragmatism and self-compassion.
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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