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 of urgency that we bust the social taboo and get used to talking about this.
“50-something, INFJ, late diagnosed AuDHD disabled trauma survivor who sees our world a little differently. Offering another perspective on us, our world and how to fix both.”
Location: Sierra Vista, Arizona. 4600ft above sea level, high desert rural AF border hell.
What does “autistic perimenopause” mean to you?
I don't know. I try not to look at my experience in terms of adding "autism" to it. I mean, sure my brain is different (supposedly, for all we know which is not much due to humans only "seeing" 0.01% of EVERYTHING VISIBLE!) but it is still a human brain. Sigh.
I didn't know "perimenopause" existed; am still unconvinced it isn't just a BS health industry trope. All it means to me is that I have NO IDEA when the END of my female torture will finally arrive. I have bled and raged about it since age 11. I am 54.
ENOUGH ALREADY!
When did your autistic perimenopause symptoms start and what are they?
No idea, honestly. In 2022 I had a couple of periods about 13 days apart (it was something like 6 of them) and went to the doctor and their solution was to try to regulate my hormones...with birth control pills...because my "hormone levels were normal". Lies. And further BS treatment by medical assholes.
I am way beyond childbearing age, struggling after a lifetime of awful periods and dysphoria...but they can't offer a simple, (isn't it in-office now?), procedure to end my suffering. What, they didn't want to be responsible for hormone treatments long term? Leave an ovary!
I cannot understand it, as me repeatedly going to the doctor and gyno and having labs and tests and scans and images for years...all of that has to be more costly than a hysterectomy.
Even if I required hormone replacement therapy (HRT), I would just tell them give me T (testosterone). Nah, I am kidding.
Discovering your clit elongates...which is HIGHLY unpleasantly uncomfortable...I have a first hand account from a friend who endured...decided me that I would only ever get top surgery if it was a possibility (it is not and cannot due to my muscle and nerve issues).
I am currently in the midst of "waiting for godot", having just had a period a week early after a year of regularity. I might be going on 28 days again at this point. All I want is the blessed skipped period.
Then another right after and on for a year then forever more.
What happened if/when you presented with autistic perimenopause to a healthcare professional?
My doctor doesn't treat me as an autistic person. Nobody will due to my fucking high level uppity way of speaking... which is not being presented here. Why should I mask now?
And since I know at least 10x more than any one of my doctors, it is never a fun time or productive.
They have all opted to treat me as an hysterical old woman, so last year I stepped off of every single pharmaceutical they had me on and am blissfully free of their poisons for a year now. I sleep better overall. My pain etc. are exactly the same.
When I supplement with iron, I do not suffer the painful muscle spasms and consequent nerve flares.
What has your treatment protocol been in managing your autistic perimenopause?
I track my cycles and any notable symptoms. About 2 years ago, I switched to using silicone period cups and that was a game changer. It doesn't cause the same level of dysphoria I was experiencing - I could only use pads, having had toxic shock syndrome (TSS) shortly after my first pregnancy. Any time after I tried a tampon (even organic, etc.) I got a fever and bone deep pain within 30 minutes of insertion. Weird and oddly specific, like most of my physical suffering! LOL
I want to use more raspberry leaf teas, and other feminine supporting herbs but live in the desert and can barely keep 2 of the 7 weed plants I germinated from seeds we collected over the years alive. They're so tiny, omgosh.
How has your everyday life been impacted by autistic perimenopause (your caring/employment responsibilities, hobbies, relationships etc.)?
I have little to no control over my mood or when I may fly off the handle. This has become its own alert symptom though, and I try to do whatever needed to calm down. Being in meno is just hard for me generally because the symptoms are ones I have endured my entire life.
I was born with Chiari Malformation (where the lower part of the brain pushes down into the spinal canal; diagnosed age 43), scoliosis (where the spine curves to the side often resembling an S or C shape; found out age 35) and AuDHD (diagnosed age 50).
I have had a host of gastrointestinal (GI) and other neuro-based symptoms and have had pain all of my life. Everything just got DEFCON 11 after a car accident in 2014. 2 spine fusions. A mystery viral infection. Ending me up at fibromyalgia, 100% neuropathy (small nerve), restless legs syndrome that was unbearable, and all the mental and emotional crap from my then-undiagnosed AuDHD.
I do struggle more, I feel. But is that peri? Or is it being off meds (def had more brain fog on them)? Is it AuDHD? Is it my brainstem being pushed into my spinal canal? I feel like the answer is YES to all of that. That it all is the same because it is all echoes of each other.
I don’t know if that makes sense, but like: INFJ (introverted, intuitive, feeling and judging), and Meyers-Briggs, those types of things. ALL psychology...all of this was men not comprehending that what they were mostly observing were neurodivergent people with no desire to engage in this neurotypical created world.
I figured it out, having been diagnosed like this: depression, anxiety, ADHD (after my daughter was), borderline personality disorder (BPD), complex post-traumatic stress disorder (C-PTSD), a child of narcissists and a BPD mother, Chiari Malformation (40% of Chiari born are autistic), autism, INFJ. ALL of those ideas and personality things are attempts at understanding neurodivergence.
I guess my point is I cannot really know what causes me to suffer in my case, as all of my conditions enjoy symptom overlap.
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 understanding my autism yet. REALLY not understanding menopause. Just, STOP the bleeding already!
I am also unpacking a lifetime of trauma, bad therapy and worse medical care at a speed that is often overwhelming. I just needed the door opened for the flood to commence, which maybe peri was.
I guess it might be nice having a doctor that I could sit in their office and rage about bleeding. Just, unmasked and honestly.
Of course, it usually involves growling and screaming so maybe not.
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 wish I had something for you. Honest answer is nothing is making this easier. Short of it all ending, I don't know anything could.
What supports, resources and services are available to people experiencing autistic perimenopause where you live?
Nothing. There is nothing for autistic adults in my community or for 2 hours one way highway drive. I have no access to therapy, even. The one I did have had zero training for autism. I got her for Eye Movement Desensitization and Reprocessing (EMDR) therapy for my PTSD responses (OOOOH does that help!!!!!)
I couldn't even get my old white gynaecologist to comprehend that he should take a series of hormone level tests in order to have an accurate picture. His opinion was if it's normal EVER, it’s normal always. What can you do against that? Murder is illegal, even if warranted.
What kinds of services, resources or supports would you find most helpful?
I would enjoy access to therapy for autistic women, hopefully older ones. I would enjoy speaking to someone that has gone through this already. Maybe, you know, they could write a little something (I don’t mean actual contact, unless written).
A doctor... no, a female gyno over the age of 35... who accepts what women say about their experiences.
What is the easiest way for you to access information about autistic menopause?
I am on YouTube and Substack mostly.
What would you wish for all people to know about autistic perimenopause?
For the love of all that is holy, LISTEN TO WHAT WE CLAIM we are suffering, experiencing. It's bad enough everyone instantly infantilizes autistic women...can we STOP policing their experiences?!?!?!
Is there anything else you’d like to share regarding your autistic experiences of menopause?
I do not personally identify as female, I use the term solely because those are my biological parts and I have (unfortunately for them) reproduced. I am both and neither, but not asexual. My experience of anything exclusively "female" is always a shitshow because I spend it dysphoric and miserable about this stupid meat suit I was WRONGLY assigned at birth.
Not euphemistically, my mother carried as if I was a boy up to the day of my birth. They had my name picked out... Michael... and I believe were arguing the middle name, which grandpa should it be. So, a huge disappointment. I was a backseat whoopsie, and being born a boy could have eased that somewhat. Sadly, I do disappoint.
I never wanted breasts or periods. I never understood my body and was always better at handling everyone else's. Yes, I am pan. I do not care a whit about gender and often quip any sentient being that CAN and can consent and can make it worth my while - would be considered. OBVIOUSLY I mean like, aliens. Monsters. Maybe demons. Humanoid preferred, no earth animals. What a weird thing to have to clarify.
Another thing, and IDK where it fits. March 3, 2022 (a month before my 51st bday) I overdosed and woke on March 6 in the ICU choking on intubation. I had been struggling emotionally for months, having been through the unexpected ending of my 23 year relationship, relocating thousands of miles away from my only friend (I have no family contact) only to be kicked out for homeless by my son so his in-laws could move in (they had retirement money and she cleans their house).
I found somewhere to live but it was a drug and human trafficking neighborhood and I was a woman alone. With a shitty landlord. Who turned out to not be the landlord and was a criminal himself. I got onto Fetlife and had a ton of encounters from Dec 2021-March 2022. Like, men came to my home. Had a bunch of sex. Yes, reckless, impulsive - all the things, and I am on the other side and okay. I learned a lot. I learned how I see myself.
But I was struggling and my therapist was not trained so I descended until my suicidal ideation won. Weird, as there were so many worse times that it would have made more sense to suicide.
I met someone during my harlot phase. He is still here. It has been rocky and almost impossible, but somehow here we still are. We are poor AF, he does have a job (I do not. There is no one willing to hire me due to needing a couple accommodations).
My goal is to get moved back to Ohio, where my best friend and her husband live on 76 acres (14 belongs to him) and I want to build myself a witch's hovel, an outdoor kitchen. I will forage and we will garden. Live free. Truly free.
Anyway. It takes money to move. We barely pay our living expenses. DIGRESSIONS. TMI.
Such a heart tugging read, so many moments of understanding and completely relatable too.