"When I turn towards and get curious about my experience, I often hear what I need, and the overall situation softens. Fighting perimenopause only brings more turmoil."
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.
I’m so glad you are here. If you feel seen and heard by my writing, please consider upgrading to a paid subscription. Paid subscribers support continuous publishing of lived experiences of autistic perimenopause here at The Autistic Perimenopause: A Temporary Regression 💕
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 environemntal, 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.
Today’s guest is Patrice Riley (she/her). Patrice is an accountant and Internal Family Systems (IFS) – informed practitioner living in California.
Patrice hosts a monthly Free Discussion Group on Zoom for autistic women who menstruate or have menstruated called Autism and the Menstrual Cycle.
Because autistic perimenopause has been intertwined with recovery from autistic burnout, I sometimes struggle to parse out what is what. But if I could distill it down, I’d summarize perimenopause as an experience of heightened sensitivity to my environment that has led to:
· A reckoning with my limitations
· An invitation to surrender into what is now possible within those limitations
When did your autistic perimenopause symptoms start and what were/are they?
After I turned 40 (I’m 42 and a half now) my traditional 9-5 workplace began to feel increasingly unbearable in its demands, especially in the week before I menstruated, and during menstruation. I worked as an accountant in a corporation where the first five days of each calendar month were a busy time of analyzing the business activity from the prior month. No matter where my body was in its cycle during those first five days, I needed to produce a large amount of work quickly and accurately for the sake of the business cycle.
If this busy period overlapped with my premenstrual or menstrual phases, I’d feel absolutely run into the ground by the end of it. But beyond a normal weekend, there was no time or space to recover; I was constantly colliding with the next work week and its demands, needing my time and attention.
Over time, I spent my evenings and weekends increasingly on the coach. I pulled away from nearly everyone in my life because I couldn’t handle anyone telling me anything at all; there was no room inside me to hold it. I neglected necessary errands like going to the grocery store because I couldn’t manage the lights and the people.
When I was 41, I quit that job. Fortunately, I qualified for short term disability insurance, and didn’t work for a full year.
My main symptoms:
· Heightened sensory sensitivity and therefore, due to more frequent overstimulation, increased agitation and fatigue.
· Migraines before, during, and/or after bleeding, and/or when ovulating.
· Shorter bleeds; often I only bleed for 48 hours now, when I used to bleed for five days, though I experience spotting and noticeable anxiety for a full seven days.
· More challenges around the transitions from one phase to the next, especially from menstruation to the follicular phase. Whatever’s happening hormonally around the seventh and eighth day of my cycle feels like it’s costing me so much energy, it’s like coming back from the dead; it’s when I get the most severe migraines.
· An inability to overexert myself in social or professional situations. Where once I could push through, now I simply cannot. It’s like I internally combust when I’ve hit my limit, and I must leave the situation and go decompress somewhere, quietly and alone.
What happened if/when you presented with autistic perimenopause to a healthcare professional?
I asked my primary care doctor about HRT (hormone replacement therapy) which I’d been hearing about in books and podcasts, but she said she only prescribes HRT for women after menopause, not before. She offered me the birth control pill, which I declined.
What has your treatment protocol been in managing your autistic perimenopause?
I’ve worked with an Internal Family Systems (IFS) therapist for over two years, and I’m now trained as an IFS-informed practitioner. My daily IFS practice has included turning toward the parts of me who feel despair about autism, autistic burnout, perimenopause, and about being a woman in a world that’s hostile to women.
As I’ve learned to hold my parts that feel despair and underneath the despair, a lot of fear, these parts have started feeling less alone, less scared, and less upset. Where before they’ve carried beliefs like “This is all too much,” the time I’ve spent listening and being present with their anguish has allowed them to relieve some of their burdens. They know I’m here now, caring for them.
IFS has also helped me love and care for the autistic parts of me that I’ve been criticized for: my quietness, my seriousness, my sensitivity, my intensity, my need for predictability and consistency.
Because I’ve been able to rest more while not working, I take a nap every afternoon. I’d like to credit Tricia Hersey here, who wrote the book Rest Is Resistance, for inspiring me to do this. She talks about the spiritual power of naps, and I agree: napping brings me both relaxation and guidance.
Around lunchtime each day, I set a timer on my phone for 30 minutes, play some relaxing music on my noise-cancelling headphones (lately it’s a hand pan playlist on Spotify), cover my eyes with an eye mask, and lie down on my bed under several blankets, one of which is weighted. I feel like a vampire going into my coffin. Without fail, I feel a bit better when I do this. Most days I don’t fall asleep, but often in the hypnagogic state that ensues (the state between waking and dreaming) I’ll experience a flash of clarity or a small, quiet inner voice prompting me about a next right step.
The last time I menstruated I took two of these naps on the second, heaviest day of bleeding. I didn’t need to take my migraine medication during that cycle, which was a first in about a year. More rest seems to ease my other symptoms.
For a while I drank Floradix, which seemed to help with energy levels, but needing to remember to drink it 30 minutes before eating required too much planning, so I stopped.
Taking a calcium magnesium supplement each day has been a game changer for my noise sensitivity. Before I took it, I was highly reactive to noises like dogs barking, babies crying, kids screaming, and leaf blowers in the neighborhood. These noises would put me into immediate fight or flight dysregulation. I couldn’t get my noise cancelling headphones on fast enough to block out the sounds with the Noise Blocker podcast on Spotify. But since taking calcium magnesium, this dynamic just doesn’t happen. Sometimes I’ll even be sitting on my couch and hear the kids outside and then neutrally think, “Oh, good for them.”
I’m astonished that what was once a source of extreme panic is now not really bothering me.
How has your everyday life been impacted by autistic perimenopause (your caring/employment responsibilities, hobbies, relationships etc.)?
If we think about the social model of disability, during menstruation I feel doubly disabled by society: as an autistic person, and as a woman. The world just feels too overwhelming. Because my sensitivities are heightened during the premenstrual and menstrual phases, my fatigue and overwhelm are heightened as well.
As I’m rebuilding my work life, I’m coming up against the reality that many traditional jobs seem too harsh for my system. The lights are too bright, the hours are too long, the lack of understanding or care for women and autistics is too glaring. I’m working with a therapist and coach to discern what part time or hybrid positions will allow me to get back to more accounting work without pushing me back into autistic burnout.
For these reasons I also trained as an Internal Family Systems (IFS) – informed practitioner. Now I’m able to work with clients from home and have more control over the hours and setting.
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?
Our capitalist society expects us to be productive all the time, and dictates that growth is always supposed to happen, if you picture a graph, up and to the right. But these aims are at odds with the needs of my body and its cycles, which require shifting from periods of contraction and expansion, rest and productivity, death and rebirth.
As an autistic woman who feels things deeply, my needs for rest, downtime, and low sensory environments require more tending to than for those who are not autistic, at least in my observation. There’s less buffer for me, than for someone who isn’t autistic.
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 cultural move towards revering the cycle, rather than vilifying it, and honoring women as they age, rather than exiling them. I realize I can’t change society, but I aim every day to unburden my internalized misogyny, by befriending my cycle and befriending the parts of me who have adopted society’s beliefs that aging is something to fear and avoid.
My spiritual practice involves connecting to the wise grandmothers in my lineage. When I pray and meditate in the evenings I focus on photos of my grandmother and other older women to build a bridge in myself to honoring women at all ages and all phases.
As more of us befriend our cycles, we can support each other in this perimenopausal and menopausal process.
An activity like this email series is a great opportunity to ease the transition; thank you Sam for this crowdsourced bank of knowledge and experience to help us better understand this process and to see ourselves better in each other.
What supports, resources and services are available to people experiencing autistic perimenopause where you live?
None, that I know of, and that’s why I started a monthly Free Discussion Group for autistic women called Autism and the Menstrual Cycle. We’ve been meeting on Zoom where we read portions of Wild Power by Alexandra Pope and Sjanie Hugo Wurlitzer and then discuss the intersection of autism and our cycles.
I started the group because I sensed that if I was struggling as much as I have, other women must be struggling too. I’ve really enjoyed getting to know the women who come to the group and share their experiences as we learn more about how to work with our cycles.
What kinds of services, resources or supports would you find most helpful?
I’m imagining some kind of local mutual-aid networks for autistic women who are experiencing perimenopause and menopause, where you could sign up in a spreadsheet for what you might need while you’re menstruating and then perhaps a woman who’s in her ovulatory phase and in the summer-y height of her energy might volunteer to bring you a burger or whatever.
I’d love to meet with perimenopausal and menopausal women in a wild place, like by a creek or a river, and sit in circle for an hour and share experiences. Being autistic, sensory sensitivity really works to my advantage in a wild place. In the forest or at the ocean, I feel myself coming alive as I take in the nourishing rush of water, birdsong, and fresh air.
What is the easiest way for you to access information about autistic menopause?
Online through Substacks and emails, and through books and podcasts.
What would you wish for all people to know about autistic perimenopause?
When I turn towards and get curious about my experience, I often hear what I need, and the overall situation softens. Fighting perimenopause only brings more turmoil. And connecting with other women who are going through these experiences is deeply healing and affirming.
Is there anything else you’d like to share regarding your autistic experiences of menopause?
Parts of me are really excited about the opportunity to grow and mature as a woman. Our society is in desperate need of wise elders, and I see the experiences of perimenopause and menopause as an initiation into wise elderhood, if we are able to meet our needs the best we can, and willing to surrender to what’s asked of us.
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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