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 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! ☕️
Today’s guest is Substack writer Kim Pitts (she/her).
“Compassionate humorist & OG star thrower. Traumasaurus rex-sized ability of turning everyday ordinary, hilarious, awful moments, or LifePitts into story. Just a glimmer hoarding, laugh line cultivating, tear stain wearing, Hopefully Lost human.
Kim lives in the Pacific Northwest, USA.
What does autistic perimenopause mean to you?
Realizing that I am autistic didn't actually change anything about me, but it did change every single thing. So when I heard about autistic perimenopause for the first time, it didn't change anything about the catastrophic experience I had with it, it changed everything.
Because I suffered from premenstrual dysphoric disorder (PMDD), perimenopausal symptom onset had a pretty disastrous impact on my life. Especially because at the time, I hadn't yet learned that I am autistic. Missing this important contextual element, added a layer of terror and shame to the burnout I suffered as a result of perimenopause symptom onset because I didn't really have any explanation for what happened.
I think Lauren Howard of LBee Health says it best when she says "[Autism] means different, not broken."
That's what I think about when I think about what autistic perimenopause means to me. The experience didn't actually break me, it helped me to discover all of the ways that I'm different. Which is why I continue to talk about the differences whenever I can, so that other women and AFAB can know that they too, are not broken.
How did your symptoms start and what were they?
My Autistic Perimenopause journey really began when my PMDD symptoms began to exacerbate because I was entering perimenopause. Except I hadn't yet been diagnosed with PMDD yet.
I remember sitting in my living room on a cold winter morning in my underwear and a tanktop with the ceiling fan blowing because I was having a hot flash. I told my doctor at the time and she said "You're too young." Except I knew it, somewhere deep inside there was a me who knew this is what was happening.
I asked my Mom and she couldn't remember anything about her perimenopausal/menopausal symptom onset. I could remember a period of time when my Mom, who has been fine since 1952 ( the year she was born), being very not fine and seeing so many doctors. She suffered from frozen shoulder (a symptom of perimenopause) trouble sleeping, concentrating and remembering things (all symptoms), she had to have a whole host of tests done and they all concluded there was in fact "nothing wrong."
Pattern detection was crucial in identifying that I was in fact perimenopausal. Knowing what I know now, that perimenopause makes ovulation sporadic and unpredictable, helped me better understand exactly where the chaos that upended my life came from.
What happened if/when you presented with autistic perimenopause to a health care professional?
Unfortunately, I never had the opportunity to present symptoms of autistic perimenopause to a health care professional. I learned I was autistic only after the complete hysterectomy procedure I underwent in an attempt to manage the onslaught of PMDD symptoms I was experiencing.
Unpredictable ovulation had left me unable to work, I had to say goodbye to an over ten year professional career. The dysphoria I was experiencing was causing suicidal ideation and I had an active safety plan in place. For almost two years I had tried so many different treatment modalities, meds, psychiatry, cycle tracking, etc. My symptoms continued to escalate.
I wasn't living , I was just alive.
The knowledge I've gained about autistic perimenopause has made me passionate about raising awareness about how devastating this experience can be so that other women and AFAB can feel seen and know that it is not all in their heads.
What has your treatment protocol been in managing your autistic perimenopause?
Ultimately, I guess you could say that treatment for my autistic perimenopause was a complete hysterectomy, even though at the time, I had no idea I was autistic. This will seem radical for some, and that's okay.
The most important thing I want women and AFAB to take away from my story is that when managing these symptoms you have to do what works best for your lived experience because although it will be similar, it will also be as unique as you are.
Post hysterectomy when my uterus was examined, it was revealed that I had endometriosis and adenomyosis. Although I had never missed an exam, I had never been told this by any medical professionals. I actually woke up post hysterectomy in less pain than I was when I went in. Until that pain was removed, I had no idea I had even been in it. That's what I think of when I think of treatment protocol in managing autistic perimenopause.
Life can feel so different. I live a completely different life now, so naturally I believe that other women and AFAB have that potential as well. Suffering could be our baseline because we don't know that there is another option.
I sincerely believe that hearing only what neurotypical symptoms of perimenopause can feel like can make the autistic perimenopause experience feel that much more shameful and isolating. Hearing other women and AFAB say it's no big deal and that it is completely manageable can be detrimental to the neurodiverse experiencing this life transition.
That said, post hysterectomy I utilize HRT, anxiety meds and ADHD meds as treatment to help manage my symptoms.
Understanding how I view that world, learning about autistic meltdown, sensory overstimulation, and the energy emotional regulation takes has played a pivotal role in this protocol.
How has your everyday life been impacted by autistic perimenopause?
Ultimately knowing what I know now, autistic perimenopause caused complete autistic burnout. With that does come some level of regression. It has been helpful for me to think of this as a measure of self-protection.
My autistic self recognizes the patterns which led to that burnout and does begin to alert me when they begin to re-emerge. As a result I did a complete one eighty on careers, left human and social services and entered the world of production manufacturing.
The routine, start and end times for my shift, and the ability to work and come home and not bring work home with me mentally or emotionally has been crucial to managing, rather than recovering from, autistic burnout. I'm not sure I believe in burnout recovery, it feels a lot more like suffering a devastating sports injury or other bodily trauma.
I need to use care around it, and be extremely cautious to not reinjure or complicate the condition of it. I believe my system will always be on the lookout for the potential of reinjury.
Recently I talked with a friend about a traumatic fall she had while hiking. Even returning to an area somewhat close to where she fell almost a year later, but still a distance away from the exact place she took the fall, her system began alerting her to the danger of getting close to the edge. That's what burnout feels like for me, like even two years later, I have to acknowledge where my edges are.
This means I regularly have to prioritize sleep and food intake and rest. My household, relationships and friendships are managed very differently than before as a result. I will leave dishes in the sink and go to sleep. Order grocery delivery instead of maxing myself out at the grocery store etc.
It's a day to day acknowledgement that I do have edges and can't walk as close to them as I once did.
Are there things that make or have made your menopause transition especially difficult for you as an autistic person?
Yes. Not knowing I was in fact an autistic person. I can't say with absolute certainty not knowing I'm autistic made it especially more difficult or not because I've not been through perimenopause knowing that I am autistic. I've nothing to compare it with.
I do know how especially difficult it was though, and I know how impactful just learning and knowing what I know now about estrogen, dopamine, PMDD/ADHD/Autism, meltdowns, burnout all of it has been for me.
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?
It's difficult to look back and identify what would have made it easier because I didn't know what I was experiencing in the first place. That's why I would say knowing I'm an autistic person. Truly.
I can't even begin to emphasize how much healing having this awareness has brought me. It's difficult to even capture in words honestly. Which makes me all the more impassioned about letting other women and AFAB know about it as well.
It could be healing and transformational for them too.
What supports, resources and services are available to people experiencing autistic perimenopause where you live?
Honestly locally there isn't really anything. I know because I have inquired knowing what I know now so that I might be able to direct people to them.
LBee Health also offers Zoom groups for a variety of things, some only twenty dollars to attend. In addition they offer comprehensive autism evaluations which may provide the kind of healing clarity this life transition can cause a woman or AFAB to desperately pursue.
What kinds of services, resources or supports would you find most helpful?
Definitely knowing about autistic perimenopause at all would be helpful for anyone I think. Also talking about how different auti peri is from the neurotypical experience, because I think women and AFAB have just been conditioned to endure suffering. And to such a degree that we don't even recognize when it is outside the typical experience, and we certainly aren't going to talk about it, because we will just be told that it's not really that bad.
What is the easiest way for you to access information about autistic menopause?
Online. Hands down. The online community is the most robust resource for stories about autistic menopause. The community you can find here is invaluable.
What would you wish for all people to know about autistic perimenopause?
That it exists and it can be vastly different than the neurotypical experience. When I share on social media platforms about my experience with autistic perimenopause and the struggles that exist, there will undoubtedly be someone who comments that this perspective is doom and gloom.
It's so important to know that if you don't have a difficult perimenopause that is only one possibility, one lived experience, and that others exist and deserve to be acknowledged.
Not only should we simply not assume that our experience with perimenopause will be the same as everyone else's, I would argue that knowing what we know about estrogen fluctuations impacting dopamine, and autism and ADHD being impacted by dopamine as well, that it is actually pretty ableist.
It's dangerous and irresponsible to continue to perpetuate the belief that perimenopause or menopause are these beautiful times of metamorphosis. That is only one possibility.
We know with certainty so many women and AFAB are significantly struggling alone, and ashamed and embarrassed to talk with anyone because there is this implication of weakness or over exaggeration of symptoms.
We know better, we have to do better.
Is there anything else you'd like to share regarding your autistic experiences of menopause?
We can validate the variance of symptoms experienced in autistic perimenopause, without invalidating any one person's experience.
Every week it is my goal to post about autistic perimenopause. As a result I have had hundreds of conversations with women and AFAB all over the world about this journey.
Because symptom management will be as unique and variable as we all are, it's so important to share these things as an answer and not the answer.
My complete hysterectomy was an answer for me to manage my PMDD/Autistic Perimenopause symptoms, but I know that it is not the answer for everyone. It was my answer though, and that is also valid.
Remembering this going forward will be, I believe, imperative in raising the kind of awareness that can literally save lives.
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!
