As I sat in front of the mirror this morning plucking my stubborn chin hairs (thick, spiny, beastly ones that have begun sprouting every few days since turning 40 - I soon will be totally unable to keep up with this werewolf metamorphosis) something dawned upon me.
My ability to mask my autistic self, which has gone completely by the wayside lately, was fully tied up in my robust, youthful hormones. My mask was a party monster, because my hormones were like a non-stop Mardi Gras.
Now that my hormones are diminishing / over the fucking place like a tilt-a-whirl in an alternate dimension, my ability to mask - and my desire to - has also diminished.
I’ve been on one hell of a personal journey these last few years. In 2017, mysterious health issues began cropping up. By late 2020, I was crashing - hard. In 2021, I received my audhd diagnosis. By 2022, I had absolutely no energy left. I could complete one single task per day, and it could not be physically laborious. To say I was bedridden is not hyperbole. In early 2023, I was diagnosed with CFS/ME. As I sit and write this, I know that particular chronic illness diagnosis was wrong.
It was, instead, perimenopause and autistic burnout.
That is the most abbreviated version of what was the most harrowing time in my life, as I don’t wish to go into it in more full detail here (I have in previous pieces - feel free to dig if you wish). Suffice it to say, I am still processing all of it, and will be for some time to come.
A new part of my unmasking journey has burst forth in the wake of abandoning social media and my public figurehood. It has felt like a dam breaking and all sorts of rushing water and debris are now filling me up, leaving little room for much else. I was sort of anticipating this - vaguely aware that something would be awaiting me after I pulled that particular professional plug, as it kept me locked in a holding pattern - I was unable to access deeper realms of healing, deeper realms of self, whilst still engaging with a wide audience.
If unmasking is dancing with the authentic self, I’ve realized this is virtually impossible to do with one’s head fully submerged in the sea of others’ writhing consciousness, which is what the internet is.
In fact, I came across this recently after re-reading The Four Agreements, and it hit home:
In the chapter of being impeccable with your word, the mitote is mentioned. Of course, the author was not speaking of the internet and social media when he was describing the mitote - he was referring to real life interactions. But I actually felt this description is so apt to envision what social media really does to us. We become less able to decipher our own thoughts from other people’s, and therefore the mask can never really dissolve. We can’t fully access our authentic self, as we’re always sifting through the sea of voices, attempting to find our own, filtering ourselves to be palatable, and performing to some (usually profound) degree.
It’s also true that when you become less busy, you suddenly have more time for your emotions, especially ones that have been locked in a holding pattern. So over the month of October, in my very first true period of removal from the demands of entrepreneurship and large internet exposure, my mask has naturally become more undone.
And it has left me feeling more sensitive and delicate than ever before. So much so, that I took my experience to the ND facebook support groups that I’m in, and told them my story (truncated version). Here were some of the dozens of responses I received.
As I’ve often been in this ND journey, I was unsurprised to learn that I’m not alone. We autie females are so very kindred. But I will admit that I was a little shocked to realize just how impactful perimenopause is on autism and ADHD. I don’t think I wanted to consider this truth, especially since so many of us are heading into this phase of life with little to no knowledge and resources, and we’ve only just begun understanding ourselves as neurospicy. We’re now having to process it from a rather concentrated, debilitated place - one of burnout. Coming to grips with both perimenopause and AuDHD simultaneously is an exercise in endurance, to put it blandly.
So what has my experience been, exactly? (You may be wondering).
It’s been so odd, so bewildering, so unprecedented. When I experienced my first big burnout when I was 16, I was no longer able to handle going to high school. No matter how much I tried to continue masking, continue fitting in, continue juggling the social / sensory challenges, I couldn’t. I slept all day and stayed up all night, eventually meeting a boy from Victoria, BC and chatting with him over ICQ and MSN messenger. He was my first (requited) love. I’m pretty sure he is ND too, in retrospect.
Perhaps my memory has simply faded, but I don’t recall feeling particularly sensitive during this time - just incapable of continuing on as I was. That burnout felt existential as much as it was hitting a wall of exhaustion. I realized I was totally at odds with my peers. They cared about boys and dates and grades and he social hierarchy. I had masked so heavily throughout elementary and high school that I thought I cared about that stuff too, but deep down something much larger was gnawing at me all the fucking time. A greater sense of what was important in life - perhaps you could call it a burgeoning spirituality. I didn’t see how the realm of high school fit into that. It felt so pointless to me, and hard in ways that it wasn’t for seemingly everyone else. No matter how much I tried, I never belonged anywhere.
But again, I don’t recall increased sensitivity. It’s easy to see now that this was because my mask was still all-systems-go, and I didn’t even know I was masking to begin with - so it was completely subconscious. When we mask, we’re not just doing so socially - we’re masking our sensitivities in sensory and cognitive ways, too.
But this time around, this burnout - my sensitivity to quite literally everything has increased exponentially.
In order to self-regulate, I used to listen to loud, angry music in my headphones nearly every day. I’d dance and thrash around and pretend I was in one of those bands, fully immersed in that world. It was one of my stims. In fact, listening to Tool, Mastodon and Gojira (and the like) on repeat was how I made all of my tarot decks. I loved it beyond measure. I currently cannot do this. In fact, I cannot listen to most music - unless it is, bless her, Joni Mitchell - at the current juncture. I also cannot enjoy movies and TV shows that are too triggering or upsetting. Ditto for seeing unexpected, upsetting things on social media. Ditto for friends dumping emotionally on me without consent. Ditto for any level of interpersonal conflict.
When I think back on it, my mask began receding as early as 2015 - six years prior to my AuDHD diagnosis - when I was no longer able to travel without anxiety. Two years later, in 2017, perimenopause began making changes to my body and the process went on in an unbridled fashion without me knowing what was going on. I didn’t understand why things were getting harder and my abilities to endure and be resilient were deteriorating. I just thought I was becoming more broken.
(A short note on resiliency: my partner recently asked me what my definition of resiliency was for most of my life. I said, “Pushing through the hard stuff.” How very masked is that? He said his definition is, “Knowing - and respecting - your limits so that you don’t overdo it in any one category of life, thereby diminishing your ability to show up to all parts of life.” I liked that).
Estrogen (and progesterone) have roles in each and every bodily system. When you’re pre-menopausal (aka from your first period to perimenopause) your levels are robust and wondrous. Of course, we don’t always think so at the time and having entered the Oz of peri, I can say with absolute certainty that we under-appreciate what we’ve got, and take it for granted. As discombobulated as I was after my first major burnout at age 16, my young adult life had one physical fortification: regulated hormones and a beautifully bang-on 28 day cycle. Ol’ reliable - that is, until it just wasn’t.
Our ability to mask is absolutely tied up in our lack of awareness of it - when it is subconscious and automatic, we just do it without thinking. So certainly, there is an element that awareness brings to our masking, in both our capabilities with it, and our desire to do it. In other words, once we know we’re masking, we sometimes become less able to do it - both because it becomes an existential dilemma (hey, this isn’t my authentic self!) and because when we’re unmasking, we tend to lose skills that we built up while masking. It has been well-studied that skills we learn in certain states of mind and body must be re-learned in other states. The brain follows established pathways and when those are disrupted or changed, there is no memory there to rely upon. New ones must be built.
In Lindsey Mackereth’s piece on skills regression, she uses the word “strategy” to replace “skill” and I think this is apt. She says, "Skill regression may be permanent due to the ever-present "Metamorphosis of the Self" in neurocomplex beings, composting past versions into new, more Self-adapted iterations. This metamorphosis is often nonlinear and complex, involving a journey of often uncomfortable self-exploration and development out of old, outdated internal structures and strategies. For the neurocomplex, many of these old strategies, or “skills” were subconsciously implemented to protect us from social exclusion due to our neuro-differences by shrinking down and masking our divergences to fit into Neurotypically-dominated spaces.
As we develop, we may hit a point in which the Self is ready to no longer be hidden and so it may begin to rebel against these “skills” [aka acting neurotypical], making them less accessible.”
There is something to be said about aging and our desire to ‘give a fuck’ about social and societal norms. But en masse, what seems to be happening for many middle-aged, neurospicy women (or anyone who has a menstrual cycle) is that our vital hormones decrease and we are left without the strong magnetic pull that estrogen and progesterone provide. Estrogen tells us to be outgoing, friendly, personable, productive, powerful. Progesterone tells us to focus on the homestead, cozy up, be domestic, nest. These compasses can seem disparate but are not, they are a pendulum that swings in a perfect circle of how the female body interacts with life. We are engaged to this cycle seemingly endlessly, and from that more or less certain fortitude the rest of our life springs: including, for NDs, masking. As soon as the hormonal well begins drying up, ‘skills’ such as this, or strategies, become much harder to manage because all of the management goes inward.
During perimenopause there are so many internal changes happening that the body / mind is doing all it can to re-establish balance. It is, at times, a monumental effort. I’m part of a perimenopause group on facebook for NDs and NTs alike. Even women in ‘high-powered’ corporate positions, who thrived under immense pressure for decades, have divulged to the group that they’ve suddenly find themselves unmoored and ‘too sensitive’ for such things. So for us NDs who are prone towards burnout, this tends to be the time it comes rushing in for us. Autistic burnout can be loosely defined as having needs that go unmet for too long a time, resulting in physical and mental exhaustion. But it isn’t simply 'tiredness’ we deal with, it is dysregulation - our systems are fraught and attempting to balance themselves. If we do not listen to our needs, this imbalance perpetuates indefinitely.
So of course - when peri hits, when burnout hits, we are often no longer able to manage masking and all that comes with it. Again, our management goes inward into trying to help the body/mind balance itself - which it is having a hard time doing on its own. Each and every time I think about my poor body trying to stay afloat in this stormy sea of peri, I want to cry tears of gratitude. Thank you, thank you sweet body - for trying so hard. Our deepest human instinct is to know this and to and help. And since we only have so much capacity as humans at any given time - exhausting strategies like masking go by the wayside. They are deemed less important by HR. The hammer comes down.
Think about it: if there’s a storm, you ‘batten down the hatches’ - you don’t head out for a party. Skills regression seems to be a vital part of the perimenopausal neurodivergent woman’s journey - and this is exactly why, and how, so many middle-aged women discover their ND at this stage in their journey. We go inward, reflect upon what’s important.
This isn’t to say it’s not uncomfortable or scary. For me, this last month in particular has been uncomfortable as I am realizing that my internalized ableism is very, very strong and has deeply coupled my desire and ability to mask (and therefore say ‘yes’ to a lot of things) with my success and lovability as a person. To be in this peri-fuelled burnout is to say ‘no’ more often, and I’m having to consciously - and gently - correct this ableist framework each and every time my body and mind come up against a new, or growing, no. I’m having to acquiesce to my sensory needs more than ever, giving myself space to be very, very quiet and not regulate in the ways I grew accustomed to.
They don’t call this The Change for nothing - and for many of us, it is like layers of an onion being peeled back indefinitely to reveal who is truly there. It is strange that the absence of hormones will do that to a gal. But really, what do I know about life? I’m just here, living it.
Until next time, love and wolves.
D xx
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I am still a few years out of reaching perimenopause (unless I'm early which has been suggested to me lol). But I relate to so much of this. <3 <3 Part of my burn out beginning last fall was intersecting with really bad hormonal issues that I had to get in check over the past year. Now that they are, I do see some improvements in my skill regression. Hormones are no joke for autistics. on the me/cfs misdiagnosis... It's interesting because I was loosely diagnosed with CFS when I was younger (like a teenager) and no one could find what was wrong so they were like maybe it's this, when I had my first autistic burn out. Looking back now, it's clear it was autistic burn out. Now in this burn out, I sometimes (er constantly) wonder if I have ME/CFS or not, because so much of the symptoms are similar. The only difference is that if I actually do sleep, I wake up feeling refreshed, so it makes me think it's probably not ME since that's such a main feature. Of course, I do have sleep dysfunction though and am not well when I do not sleep. But if I sleep like a normal night, I wake up feeling generally well and have a sensation of being refreshed (even if I get tired later on in the day), which is not the case for ME. However, I do have POTS and all the other characteristics and do sometimes get PEM so it's like, omg?! Man, the cluster fuck of neurological diagnosis are real and it's hard to know what to do sometimes or how to help yourself. Thanks for writing this, loved it, as usual.
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