Do #Autistic people *have* to die earlier than non-autistic folks?

New York Skyline with ice floating in riverYesterday I came across a really thought-provoking piece by Sarah Kurchak, I’m autistic. I just turned 36 — the average age when people like me die.

The stress of living with autism is exhausting.

On March 21, 2017, CNN published an article on a new study from the American Journal of Public Health that found the average life span of an autistic person is 36 years. I wasn’t shocked by this news. I know how dire things can be for so many of us on the spectrum, but that number struck me for a very specific reason. I had just turned 35 the previous month.

Since I learned this news, I’ve been anticipating the milestone of turning 36 with a mix of confusion, dread, and a host of other feelings I can’t quite articulate. I’ve had more existential episodes than usual, brooding about the meaning of life. It’s been a lot like a midlife crisis — except that (I kept thinking) my own midlife might have happened as long as half my life ago. The average age of death for autistic people who live to adulthood might be older than 36 (and as of now, there is still no age-specific data). Still, the figure from the research journal haunted me.

At some point between that moment and now, I made a pair of promises to myself:

1. I had to make it to 36.

2. Once I did, I needed to do something to mark this morbid accomplishment — perhaps writing something to help the next generation of autists approach their own birthdays just a little easier.

{Read the full article here}

And while I’m really glad that she wrote it, it signals a number of massive gaps that I really feel we need to address — and that I, as a 52-year-old Autistic woman who grew up around many, many, other Autistic people and relatives, many of whom lived to a very advanced age (try 103… my uber-Autistic college professor grandfather lived out his days with joy and purpose). And their quality of life was not shit (sorry Grandpa, I had to swear).

Frankly, it kind of depresses me that all the news coming out about us is bad. And it also depresses me to think about how many truly useful hours we spend trying to fix shit that’s just plain wrong, instead of living our lives to our best, enjoying ourselves, finding purpose and meaning, and having the kind of superlative quality we can have.

Yeah, living Autistic in today’s world is no picnic. Seriously, it’s incredibly stressful and defeating at times. The problem, from where I’m standing, is not that things in general are not to our liking, but that we expect them to be… and when they’re not, we’re caught off-guard.

This is a problem. For everyone. But mostly for us. Yes, the world is failing us. The rest of the world is neglecting to shield us from neurotypical aggression and unrealistic non-autistic expectations. People are mean-spirited and cruel. There’s a lot of pain, and too many people are more than happy to pass their pain along to others — especially if we seem weaker or more vulnerable than they.

But guess what? That’s the deal. That’s how people are. This is not news. And just as you wouldn’t necessarily light candles and hold a vigil for someone who saw all the warning signs around a tar pit, ignored the calls of others to stay out, crawled over a fence, and proceeded to wade into the muck and sink into it to their death… I’m not altogether inclined to weep bitter tears for people who are clearly able to see what’s what in the world, but keep pushing for things to be other than what they are.

Maybe I’m old and cynical, but the world can be a brutal place. So, we need to gird ourselves. And we need to spend far less time trying to change others… while we spend a whole lot more time on setting ourselves up for success. Seriously, the world is so full of amazing wonder and joy for Autistic folks — far more than for neurotypicals. We’re wired for joy, and we should bask in that as much as humanly possible

One of the most painful experiences in life is clinging to unrealistic expectations and non adjusting accordingly. I’ve done it plenty of times, myself, and yeah — it’s excruciating.

At the same time, one of the most wonderfully liberating things, is to accept things for what they are, and just get on with living your life, always working towards changing what you can — and understanding the difference between what can and cannot be changed.

To whit: My job situation.

I mean, it just sucks. It seemed like a good idea, when I first got it, and by many accounts I have done very well in it. But Autistically speaking, it’s a total setup. It’s not at all suited to my Autistic personality. It’s overwhelming, exhausting, and it requires that I be able to read other people and interact politically, communicate regularly, navigate social situations, and be on the phone with people on the other side of the world several times a day. How horrible! I haven’t bitched and complained about it as much as I could have over the past couple of years, but I’ve been suffering intensely from it.

And yet, there’s something to be gained from this. It’s been a fantastic experience, all the pain notwithstanding. And I’ve learned a lot. The biggest lesson has been that this is not the job for me over the long-term, and I have to get the hell out. I’ve “taken my medicine”, as they say, and I’m getting a lot in return. Street cred. A killer addition to my resume. Connections. And the pity of strangers, when they hear where I work 😉

Ha!

So, yeah, I could wail and gnash my teeth about how “ableist” and “discriminatory” my employer is, by creating this kind of environment. No shit. They are. But that’s a terrible use of time, because all my marinating in that pain isn’t going to change anything, and even if it did change for the moment, it’s not going to alter over the long-term. So, I take what I can get, emphasize the positives, and keep plugging along.

And I use every . little . thing I learn along the way to create a world that works better for me. Because that actually is something I have control over. I cannot possibly expect the rest of the world (non-autistic as it is) to shape itself to my needs. The government is not my friend. Legislation comes and goes, lest we forget. My employer doesn’t want to know I’m Autistic to better help me — they want to know, to shield themselves from a lawsuit. Authority figures are not in the business of tending to my needs. Servant leadership is all very well and good, but the vast majority of people and entities are just struggling to survive, and the people with the most influence are often the ones who feel most exposed and vulnerable. (My rant about our generally childish and 2-dimensional 21st Century view of “power” will come in a later post.)

The world is chock full of opportunities to make more of myself than I am today. I’m taking those opportunities, as chock full of risk as they may be. I’ll wade into the pain. I’ll pay the steep price. Yep, being Autistic is incredibly stressful, if I only inhabit the non-autistic world and chafe under all its myriad restrictions. But when I allow myself to simply BE Autistic, I accommodate myself, I arrange my life in ways that work for me, and I take care of my own shit, things get a whole lot sweeter.

It’s a new year. 2018. Year of the Dog. Last month of the Western astrological calendar. I’m tired of the same-old-same-old from the past couple of years. Time to keep getting more real every day, prioritize myself, my joy, my life, and focus on what really works for me.

Read Sarah’s full article about how sucky it can be to be Autistic in the world here. It’s a good one 🙂

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So, What’s #Menopause and What’s #Autism?

spectrum spiralThat was the operative question for me about 10 years ago. Or rather, it should have been the operative question, but I was so overwhelmed with my life and my body’s changes, that I couldn’t think clearly about being Autistic.

I actually couldn’t think clearly about being Autistic for years prior to that, because, well, being Autistic and not having a definitive diagnosis (self-DXed or otherwise), and not having any sort of support or community to turn to, there was little to no opportunity/chance for me to cogently suss it all out in my head.

Things were just a big ol’ mess, and that was that.

My job situation was tenuous, and I was moving from position to position, from company to company, without anyone really realizing what was going on. In hindsight, I can tell you:

I was moving from job to job, because I couldn’t track what was going on around me. I was overwhelmed from the changes in my monthly cycle, which were also accompanied by dramatic changes in my hormonal levels and behavior and thinking process(es), and I was in constant dread of being found out — that someone would figure out that I was a screw-up who didn’t know what was going on, and they’d just get rid of me. I had to keep some semblance of “control” in my professional life, so that meant moving around a fair amount.

I mean, it was rough. And the thing that made it the roughest, was not having adequate cluefulness about Autism and how it affected me. I am 100% convinced that I could have managed my situation, if I’d had adequate knowledge about Autism, as well as menopause.  I am proactive. I’m a planner. I come up with structures and systems that assist me. I build tools, I leverage assistive technologies (even ones that aren’t build with that intention), and I am highly scientific about how I live my life.

So, if I’d had reliable info about A) Autism and B) Menopause, I am 100% certain I could have handled it all extremely well.

And I’m just as convinced that other women can, too.

Of course, all this is … fraught.

One of the hazards of talking frankly about (peri)menopausal Autistic women, is that to the untrained eye, it can make us look extremely debilitated. That’s no good for our careers, for our social lives, for our prospects in the mainstream — where, like it or not, a lot of us need to function. Plus, when people hear about our difficulties and how much menopause really f*cks with us, they can automatically jump to the “oh you poor dear” victim mentality, where we’re supposed to be coddled and care for and given special consideration.

Screw that. Given half a chance, I can really do an exemplary job of living well — and I do. On a regular basis. A lot of us do. So, treating me/us like poor hothouse flowers who need to be sheltered and given special dispensation just works against us.

I’m not saying we don’t need consideration. We do. But don’t turn us into helpless victims, simply because we’re going through what millions upon millions of other women (Autistic and otherwise) have successfully gone through for millennia before us.

We need to talk frankly about it. We need to discuss. I might just be that we can’t do it freely in public. Some well-meaning person may pick up on what we’re talking about and — god forbid — institute some policy around it.

Well, enough of that rant. It’s Monday, and I’m ramping up… I don’t want to get distracted. Okay, where was I?

Ah, yes — figuring out whether the drama in your life is Autism or Menopause…

As I discussed earlier (#Autism and #Menopause… Like we don’t have enough problems already!) , we’ve got a bunch of overlaps between the two situations — one of them permanent, one of them temporary:

hypersensitivity (including achy joints and sensitivity to noise, temperature and pain), muscle aches, foggy thinking, forgetfulness and other executive function challenges, trouble sleeping, difficulty with temperature regulation, seizures, migraines, irritability, depression, anxiety

Additionally, we can have additional health issues, like EDS and fibromyalgia and epilepsy, mental health issues, and injuries that can make our lives that much more… interesting and eventful. And then there’s life. Menopause comes along at a time in our lives when we’ve got increased responsibilities: our professional lives can be packed full of responsibility, our personal lives can be in upheaval, we can have a bunch of dependents to provide for (growing kids and aging parents at the same time), and much of what we handle, we have to handle alone, because other people say we’re so good at it, so that qualifies us to be the subject matter experts and take full control/responsibility for those things.

It seems pretty much like a setup to me.

And when you add Autism to the mix, oh yeah — that’s even better. Because we’re already hypersensitive as Autistic women (or men who are have menopausal women in their lives). We’re already achey and sleep-deprived and anxious and everything else listed above (and more). But then life comes along and tosses the menopausal firecracker into our well-ordered lives, and kaflooey! Instant drama.

I’m not one to dwell on constant problems. If I were, I would have ended my life long ago (it’s true). I’m all for solutions — and the one solution I found is really the most basic one of all: education and proactive management of my situation. Using tools. Writing things down. Keeping close tabs on the ways that my life is screwy (and yes, it is in many ways) and doing something to unscrew it. Focusing on the places where things fall apart for me, and coming up with ways to keep them together, in spite of forces beyond my control.

I’ve gotten lectures from other people about how I shouldn’t use a “disability model” when I think about being Autistic. I should focus on differences and reframe my limitations as just variations in the human theme. Philosophically, I totally agree. But logistically, that just doesn’t work for me. I really do have problems associated with Autism, and to tell the truth, the very thing that saves my a** in all of it, is “getting ahead of it” and coming up with ways to address or augment my issues — because I durned well know I’m gonna have those issues… or I already have them, and they’re making my life extremely difficult.

I’ve got to get read for work, now, but I’m going to share some of my most helpful tips, tricks, and techniques on this blog. Seriously, people, menopause happens to so all of us — both directly and indirectly. And it’s especially impactful for Autistic folks. Forewarned is forearmed, so we need to gird ourselves and get properly equipped to deal with it.

That means… information. Facts. Scientific research. Just knowing what’s going on with us, and what we can expect. Without that knowledge, we’re sunk.

And we also need tools.

So, I’ll leave you for now and come back around later when I’ve got more to share. I’m ambivalent about this Monday. No, scratch that, I really don’t want to “do” this Monday. At all. I have a long list of pain in the ass people I have to deal with… But I’m delaying the inevitable. Off I go… wading into the fray.

More to come later. Much more.

It’s easier if people aren’t nice to me

Man Thinking, Looking Out Over Foggy Harbor - Photo by Phoebe Dill on Unsplash
Photo by Phoebe Dill on Unsplash

This is going to sound strange, but it’s actually easier for me, when people aren’t nice to me.

When they don’t say and do nice things for me, befriending me, and so forth.

I find it confusing. And the reciprocity thing makes my head feel like it’s spinning.

And I’m going to get it wrong.

Either I’ll get too close, too fast, or I’ll keep my distance when I’m not supposed to.

They’ll expect me to hug them. And that’s no good. I’m a terrible hugger, objectively speaking. I don’t know how to get the right pressure, and I always seem to dig my chin into the other person’s shoulder, which is a weirdly intimate thing to do, when I think about it.

They will say things and expect me to respond in kind. But my brain doesn’t work at their same speed, so I’ll end up saying something stupid or coarse or reflexive that’s unconsciously meant to push them away.

It’s better, if people aren’t nice to me.

That’s not to say I don’t like people. I do! I really enjoy their company, and I like to spend time chatting about things that interest us. Even the dreaded small-talk is fun for me, at times. Banter. Witty banter. Laughs. Ha-ha-ha. 😀

But other than superficial fun times, I prefer that people are objective and a little cold towards me. Matter-of-fact. Because facts really matter a lot to me, and it’s more important for me to handle things in the correct manner, than it is for me to “exchange energies” with potentially needy others.

I don’t mind the chill. I prefer it, in fact.

Just don’t be rude.

Rudeness I cannot countenance. Standoffishness, yes. But rudeness, no.

And that’s what I have to say about that tonight.

#Autism and #Menopause… Like we don’t have enough problems already!

railroad track leading into the distanceOver at Auptima Press, we’re talking about Autistic women and menopause

While research about aging and autism is lacking, what we do know is that during perimenopause women on the spectrum can see an increase in:

  • hypersensitivity (including achy joints and sensitivity to noise, temperature and pain)
  • muscle aches
  • foggy thinking, forgetfulness and other executive function challenges
  • trouble sleeping
  • difficulty with temperature regulation
  • seizures
  • migraines
  • decreased libido and vaginal dryness
  • weight gain
  • food cravings or pica (craving inedible items such as chalk, paper or dirt)
  • nausea during menstruation
  • cramping
  • irregular periods
  • irritability
  • depression
  • anxiety
  • thinning hair in some areas, and thicker hair growth in others

Great! (Sarcasm) Just what we need. We already have a bunch of these issues with Autism, to start with — hypersensitivity (including achy joints and sensitivity to noise, temperature and pain), muscle aches, foggy thinking, forgetfulness and other executive function challenges, trouble sleeping, difficulty with temperature regulation, seizures, migraines, irritability, depression, anxiety — and then “Mother Nature” throws us another curve ball that can make everything spike even more.

Actually, the fact that there’s some overlap might work in our favor. If, that is, we’ve developed coping strategies to deal with these things. When you’ve already been dealing with hypersensitivity, muscle aches, foggy thinking, forgetfulness, irritability, depression, and anxiety, you have some tools you can use when menopause amps up the experience.

On the other hand, it can be incredibly disorienting, because — if you’re like me — you have  your supports in place, you have your tips and tricks in place, and you come to rely on them to be, well, reliable.

But then, suddenly, they aren’t. And everything can get plunged into chaos — or at least, it feels that way.  All the old expected results that you’ve come to rely on, as a result of doing things a certain way, are no longer predictable. And that’s about the worst thing you can do to an Autistic person — take away the predictability that they’ve invested countless hours in developing.

Same thing holds true for husbands/partners of Autistic women going through menopause — after so many years of acclimating and finding a balance, suddenly — wham! — everything gets up-ended, and the woman you knew and loved has morphed into something/someone … unexpected.

For anyone, it’s a challenging turn of events, but for Autistic folks and/or their partners, it’s a whole other flavor of woo-hoo.

woo . effing . hoo .

So, I’m gonna take my woo-hoo self off to bed. I had to work today (Saturday) when I should have been resting / reading / sleeping / hiking in the woods. I resent that. But at least I’m through menopause.

On my worst days, I give thanks for that.

Stay safe, everyone. It’s a jungle out there (and in here).

It’s a Process…

woman with painted faceThe Meh-nopausal action continues… And while it might not seem all that exciting, just you wait… 😉

Over at Auptima Press, we’re talking about the whole process, especially starting with perimenopause (peri- means before… menopause means the ending of menses, the monthly hormonal and tissue recycling that so many of us know and — cough, cough — {don’t} love).

Perimenopause is the natural transition that your body goes through before reaching “official” menopause (which is defined as 12 consecutive months without having a menstrual period). During this process, your hormones begin to fluctuate, and these changes can play a major role in how you function and feel.

So, take note, all you women and men who are affected by women’s cycling… oh, wait, that would be all of us. Perimenopause is a natural transition, meaning it’s what happens as part of the natural course of women’s lives. Certainly, there are many women who have different experiences — some have hysterectomies, some may have been born with a different configuration of organs, some may have medical conditions which cause the change(s) to happen in a variety of ways that stray from the path laid out by OB-Gyn textbooks. But by and large, perimenopause is the rule, rather than the exception for women who live long enough for it to happen.

When I was growing up, precious little was openly discussed about menopause. It was “the change”… something to be whispered about in women-only circles. And the whole perimenopause thing wasn’t talked about at all. In fact, the word “menopause” (and all permutations thereof) was cringeworthy… shrouded in confusion and misinformation and the conviction that it was the last stage before mental and physical decline. Once menopause showed up, your life as a woman was over — according to how I was raised. Once you couldn’t have any more children, your usefulness as a woman was severely diminished, and you stopped being interesting to the rest of the world.

That should tell you a lot about the world I was raised in. And thank heavens things have changed, since then. I mean, just getting the word “perimenopause” out there is a step in the right direction, IMHO. It increases the occurence of “menopause” in popular vocabulary, and it also widens our understanding of the process — because that’s what it is. A process.

And gentlemen, that includes you, too. When I was a kid, men just rolled their eyes and made themselves scarce till “the Change” was over. But you can’t do that anymore. Women are much more integrated into society and the workplace than before, and there’s a lot more distribution of labor on both sides of the gender divide. So, when women cycle around to a state of hormonal WooHoo!-ness, the guys get drawn into it, as well.

Rest assured, as it’s a process, it has a beginning, a middle, and an end. Sadly — especially for Autistic folks — it’s incredibly difficult to predict with 100% accuracy. One day you’re fine… the next, you’re not. One moment, everything’s cool… the next, you’re mulling over whether to flirt with a 25-to-life felony against your fellow humans. (Note: I know it’s tricky to mention Autism and violent crime in the same paragraph, but talk confidentially to any post-menopausal woman on or off the Spectrum, and you’ll find that our ideation can indeed go to some scary places — which is why it’s so lucky that this happens when we’re old enough to keep ourselves in check and realize that Thoughts Are Not Things.)

But I’ve digressed. This whole female “Change of Life” business is a process. Our hormones fluctuate. There’s no avoiding it. Our moods, behaviors, thinking, bodies… they get churned up on a sort of spin cycle, and it can be quite the roller coaster ride, for as long as it lasts.

So, if you’re headed in that direction, brace yourself. And get educated. Because the combination of (peri)menopause and Autism can be a potent combination that spells distress and anguish for many of us. I know it did for me. But understanding what’s happening (which I didn’t, because nobody explained it to me clearly) can help immensely — if only by dispelling the distress that comes from getting blindsided by your body’s natural changes. And for you guys out there, it can also be comforting to know that the abrupt and jarring changes to women’s demeanor are part of a larger pattern that’s been happening for aeons.

And yet, we’ve survived.

Yep, we’ve survived. Millions of women have gone through this before us. We’re not the first, and we certainly won’t be the last.

So, take heart. If you’re (peri)menopausal, you’re in good company.

#AutisticWomen and #Menopause – it’s about more than “reproductive health”

grain seed closeupIf there’s one thing that frays my last nerve, it’s talking about women’s health solely in terms of reproduction. Not all of us choose to have kids, and even the ones who do, are more than the sum of their offspring. Classifying our hormonal and female-specific well-being under “reproduction”, to my mind, reduces us to vessels for the emergence of the future human race.

Which is overly simplistic in ways that short-change both women and the healthcare providers who view us through that lens.

Sigh.

I mean, don’t get me wrong – I’m not kinderfeindlich, with an aversion to kids. But talking and thinking about women as only child-bearers and child-rearers is a huge problem — from the very moment we enter into the world in our female bodies. As babies we’re treated differently, as little girls, we’re handled a certain way, as prepubescents, we’re seen as not-yet-human creatures which have just a few years to go before our bodies start serving a “useful” purpose. Throw Autism into the “mix”, and you’ve got yourself a recipe for… a very interesting life.

And then into puberty, young adulthood, “childbearing (aaauuuuggghhhhh!) years”, and on to perimenopause, menopause, and post-menopause (which I am fondly referring to as “Meh-nopause”, since the hormones which cause me to give a shit about everyone and everything outside of me have bottomed out and left me with a more than welcome sense of not really giving a f*ck about all the stuff that got me torqued up, all those years ago. Again, add Autism, and there’s your cocktail for major disruption, inside and out.

Logistically, it can be one hot mess. And conceptually, even moreso. While reproductive classification might be fine for non-autistic folks (who seem to have a general predelection for coupling — sorry for overgeneralizing, but you probably know what I mean), I think casting us as mainly reproductive agents really has serious drawbacks for Autistic women and girls. Why? Because we tend to have a whole lot more going on with us, than non-autistic females. We’ve got all these sensory issues, not to mention a whole slew of passionate areas of driven specialized focus (the fascinations formerly known as “special interests”), and a whole lot of us don’t even relate to the whole “boy thing”, the “mating games”, and so forth, as we grow up. We may be fascinated by dolls and boys, but we may not. And even if we are, that fascination can be drowned out at any moment by a sensory onslaught.

Plus, there’s the social disconnect thing. When you’re not that adept at social interaction, you can find yourself pretty much out of the whole standard-issue selection-pairing-mating reproductive loop. You don’t necessarily get socialized the way non-autistic girls and young women do, learning the rules for interacting with the opposite sex. On top of that, since the mainstream healthcare system is so geared towards “treating” us and our health along stereotypical lines, which assume a certain developmental trajectory, there’s a massive conceptual disconnect between “reproductive health” and Autistic women’s health. We may be way ahead of the curve, or we may be behind. But rarely are we treated just as who we are, how we are, because… we are.

At least, that’s my perception of it.

The other issue I have with the whole “reproductive health” focus on women, is that our monthly cycles serve a variety of purposes, not just conception, but they’re typically treated as just another way to get pregnant. Our monthly cycles affect how we heal, how we think, how we function, how extreme our sensory issues are, how we experience every aspect of our lives. But does the mainstream healthcare establishment get that? Nope. They’re so locked on the target of making sure women are able to have healthy children (which is certainly a good and needed goal), that the rest of our complex makeup gets lost in the process.

This frustrates me to no end. Not only because it treats the most significant aspects of me like side-issues (I’ve chosen to not have children, because those other parts of my life are so all-consuming, it wouldn’t be fair to anyone, to bring kids into the equation)… but also because it misleads and dismisses countless other Autistic women and girls who may have a wide variety of issues and a whole bunch of concerns which are directly related to their female physiology, but are just lumped into the conceptual holding bin of “reproductive health”.

Make no mistake — our monthly cycles are good for a lot of things. The hormonal changes we go through both give us access to different ways of knowing and seeing and sensing, and also heighten and lessen our experiences of live. And for Autistic women, this is highly, highly impactful.

For example: Back when I was still having a monthly cycle, I would have the most intense sensory experiences pretty much every month, many times leading to meltdowns. For about a week before my cycle started (and my cycles were like clockwork – 32 days apart, every single month), my  hormone levels would drop, get suppressed, and really drag me down into a pit of despair. When I think about all the times I wanted to just die… when I wished I’d never been born… when I just wanted the pain to stop… If I hadn’t been keenly aware of how fickle I am — and how I was likely to change my mind within a few days — I definitely would have committed suicide. But I knew from watching myself, that those feelings passed. And in a few days, I wouldn’t feel anything like that. I’d be pretty darned glad I didn’t end my life.

Those crashes were brutal. They took a lot out of me, and the meltdowns set me back in so many ways. They eroded my relationship with my partner, they kicked the crap out of me emotionally and physically. Meltdowns on top of hormone blockage… not much fun.

But there was another side to it all that you probably won’t read about in a gynecological textbook — the incredible flashes of insight that only came after all the suppressed hormones rushed back in. Some of those “crashes” also led to some of the most brilliant connections of ideas I’d been working on in the weeks and months prior. Some of the insights were truly transformational and laid the groundwork for a philosophy and approach to life that has literally super-powered my life in important ways.

Those ups and downs correlated closely with the hormonal fluctuations of my monthly cycle, and now that I look back, had I actually realized this — and realized just how much it would affect me — I would have handled myself and managed my life very differently.

It wasn’t until I was well into the perimenopausal process that I got a clue about managing my life to match my hormonal ups and downs, but by that time, things were so irregular and even more extreme, that it cancelled out a lot of the benefit I could have gotten from being more proactive about managing my life.

And I’m sure I’m not alone.

I mean, it just burns me up, when I think about how many Autistic women and girls are struggling with not only gender issues, but also the healthcare system that sees them only as delivery agents for the next generation. Again, no judgment towards mothers. Absolutely, positively not. We need you. Where would we be without you? Nowhere. But when it comes to our hormonal health, reproduction is just one of many considerations. And the repercussions of our fluctuations and our cycles affects far more than our ability to conceive and bear children.

All this being said, I’d love it if we could deepen the discussion of Autistic women (and girls) and our health as women and girls. I want to stop using the word “reproductive” as the main point in the discussion and find other ways to talk about the cycles that make us. My hope is also that researchers and healthcare providers will “get hip” to this discussion and widen their thinking about how Autistic women and girls experience lives from with the cycling bodies we have.

Oh, and also, over at Auptima Press, we’ve got more info and resources on women experiencing the (peri)menopausal process. Check out our article Perimenopause? The Transition Stage Before Menopause, to see where we’re going with this. It’s really the start of a whole conversation we need to have within our own Autistic community — and frankly, it could be helpful for Autistic men who are wondering what menopause did with their wives/partners, and when will they return them to their once-stable state (and yes, I can joke about this, because I’ve been through it myself, as well as stuck with my partner while she was going through menopause 10 years before me – believe me, I wondered what had become of her, and if she was ever going to return).

This whole topic has been near and dear to my heart for many years, especially over the past 10 years of going through the menopausal and coming out on the other side in much better shape than when I went in. I’ve learned a whole lot about the process, what’s happening, what to expect. And now with my more intent focus on Autism, I’m putting all the pieces together to understand — and share — how women’s cycles impact (and are impacted by) Autism.

Because, I swear to gawd, the two factors are so central to our being and experience, that you cannot consider one without the other. Literally… doing so, shortchanges the whole inquiry and renders null and void any one-dimensional pronouncements about what makes us the way we are, and what makes us experience the things we do.

It’s important.

And for the sake of our health, safety, and sanity, we need to start connecting these dots. Too many of us have suffered for no good reason.

And that needs to change. So, I’m going to change it. 🙂

Sharing from ‘Autism’: A new era for autism research, and for our journal

No more puzzle piece used on the cover of the journal 'Autism'

Big news – The journal Autism will no longer be using the puzzle piece on their cover.

Plus, they’re shifting their approach to research:

… Precisely because it is a common endeavour, autism research requires the participation of that broad community on fair terms. It is not right that one group holds all of the influence and power. If any group, or collection of groups is unattended or their opinions discounted, then they are being treated unfairly and in a way that does damage to autism research itself. The core ethos of this journal must include ensuring that everyone who participates in autism research has their views taken into account.

This, in my view, is huge.

And it’s a welcome change. I encourage you to read the whole announcement. It’s not long, but it’s chock-full of encouraging signs.

Read it by clicking here.

So good to be home again

House outline with a door, two windows, pitched roof, chimney
Well, that’s done. I got my business trip handled, and I got home about 1 a.m. this morning. Wouldn’t you know, I had an early conference call I had to participate in, and it wasn’t one of those “Uh-huh, yeah, uh-huh” kind of participations where I could be half-asleep. I had to do a demo of a contentious piece of software I “own” and am rolling out across the whole company). Fun! People either love it or hate it, and they have all kinds of questions and complaints I have to work pretty hard to not take personally.

I’ve been working on that… And I’m much better at it now, than I was when I started this job 2.5 years ago.

So, that’s positive. And as long as I can keep myself grounded and using my common sense, I’m fine.

I’m just incredibly tired, right now. Gawd, am I tired.

Overall, I think it was a good trip. That’s my version of the story, anyway — from a business standpoint. When people ask me how it was, I don’t dare say, “Oh, it was a grueling gauntlet of inane conversations, vacuous activities, and tiresome office politics. I never want to do it again. Ever.” That would be the truth, but that will never “fly” in the business environment.

Oh, my God… the more I think about it, the more I realize the most annoying thing about where I work now, is how positivity is compulsory. It’s not optional. Nobody — but NOBODY — is allowed to be critical or “negative” out loud. You’re not allowed to have any misgivings, you’re not allowed to have any reservations. You’re not allowed to be cautiously optimistic. Everybody’s GOT to “be on board” and working pro-actively towards a positive future.

You can get honest behind closed doors, but out in public, you have to be all gung-ho and go-team-go. That’s about as UNlike me, as you can get.

And that’s probably the most tiring thing of all. Just keeping up that level of forced enthusiasm, having a firm handshake and making confident eye contact. OMG, I just feel like a caricature of some frat-house “good buddy” when I do that.

But everyone around me loves it.

So, yeah, it’s good to be home. Where I can drop the whole go-team-go act and just be my version of normal. Not “negative”, not “positive”, just me. Neutral as neutral can be. Which is how I like my emotional states.

Okay, one more meeting, then I get to lie down and take a nap.

I’m due…

Because this #postmenopausal #ActuallyAutistic #woman knows better

sun shining through tree branches
If there’s one thing this trip is teaching me, it’s that I know better than I’ve been giving myself credit for. I know more. I am more capable. I am better equipped. I am better prepared. I haven’t been expecting much of myself, but I realize now that I can expect much, much more than I’ve been allowing for.

And it occurs to me that, once again, alexithymia is getting the better of me. It’s just too bizarre, how it happens… and how convinced I am that I am beyond hope, beyond hopeless… absolutely positive that I can’t deal with sh*t… when all that’s really going on, is that I have no internal sense of confidence, no internal sense of capability, no internal sense of mastery. It’s just not there. Like all the times I have no internal sense of being happy, sad, upset, mourning, elated, frustrated… pick an emotion of your choice. So, so many times, I just can’t feel it.

At all.

And that throws me off. Very much so.

But what does this have to do with menopause? Ha! Everything.

Because the lower hormonal levels in my system seem to heighten my lack of feeling for… stuff. It’s harder for me to detect what I’m feeling, these days, than when I was 10 years younger and I was feeling every damn’ thing so intensely. Going through menopause both dialed up my experience of physical and emotional sensations — way up — to where they kind of spiked… only to be followed by a veritable trough of emotion in the years after…. an extended experience of meh-ness that dulled and confused my emotional detection even more.

And ironically, even when I’m in a really good place — a place of mastery, a place of expertise — I can’t sense it, so it doesn’t feel real. It doesn’t feel genuine. And that messes with my head. ‘Cause obvious things like knowing what you’re talking about is supposed to give you a palpable feeling of rightness… right?

Alas and alack, it doesn’t work that way with me. And that messes with my head.

So, I have to fall back on logic. And remind myself factually of the details of my expertise — that I’ve been doing what I do for decades. That I’ve paid my dues. That I’m a trusted subject matter expert. That I have good “street cred” with the right people at work. And so on.

I have to rely on logic. Because my meh-nopausal system can’t be bothered to work up the energy to sense all those things and sort through them.

Fortunately, I have logic. It’s logically impossible that I would do as much as I’ve done in my life, and still have no clue about anything. Even though it feels that way — or at least, very much like a void — even though I can’t detect any sensation of expertise… I know objectively it must be there. And I also have friends and colleagues who can (and do) offer feedback that I cue in on and then process. They’re much nicer to me, than I am to myself, so I take their word for it, when they tell me I’m smart, or they tell me how much they value my opinion.

So, I override my sense of doom and unremitting failure, and just get on with my life. I really wish it weren’t this way, but is… so there we are.

An actual spoon – how awesome is that!

cup of tea with a spoon
It’s been a long day. I got to sleep about 1:45 a.m., then I had to get up at 6:00 to iron my clothes and get ready to meet my boss and other colleague down in the hotel lobby at 7:00. We grabbed some quick breakfast, then headed out around 7:20. Got to the office by 7:40, found where we needed to be, and then spent the next 9 hours in meetings.

Ugh. Well, at least I go my second wind around 2 p.m., which was about 6 hours too late. But at least I hit my proverbial stride. And now I’m having a nice cup of hot water with honey while I blog my way back to sanity.

The hotel I’m staying in is one of those residence type places, where the rooms have a kitchenette and a sitting area, desk, and full bath. It’s pretty nice. The hotel is relatively new — less than a year old — so it hasn’t had time to get all broken down (yet). And they have actual silverware — or rather, silver-colored metal tableware — and real dishes, glasses, mugs, and a real sink and a 2-burner cooktop for a more civilized experience. Plus, there are a bunch of nice restaurants across the way within walking distance, so I don’t have to drive.

I think they know I’m a bit fried from the past 24 hours. So, why drive, right?

Well, anyway, it’s good to get settled here. I’d still rather be at home, but this’ll do for the time being. At least it’s in the 60s, versus the 30s, which is nice. And people are being decent, too (for the time being), which is good.

Lord, I’m tired. But I’ve got to go off to dinner in a little bit, where I’ll hob-nob with my colleagues and find out the background “dirt” on what’s going on. Those guys are such little gossips, but it really comes in handy, at times.

As for sensory overload, I’ve been in a state of it all day. And I’m a little numb from it all. It’s bound to be that way tonight, too, because my boss loves going out to eat in loud, busy restaurants. He’s one of those hypo-sensitive Aspies, for sure. He’s so autistic at times, it’s hilarious in that way where I recognize a member of my tribe and it just make me laugh with quirky familiarity. Of course, we never discuss the whole “Autism thing”, because… why?

Long story short, I’m starting to have fun. Who knows what tomorrow will bring, but for today, it was a good day.

My partner is making peace with me traveling out here a handful of times each year, and she’s just glad that I’m not job-hopping like I used to constantly do. I’m staying put, and that makes her happy.

But What does this have to do with menopause?  Ha! Everything. Because unlike years gone by when I would freak out and stay freaked out, my hormonal profile no longer compels me to lose my shit over everything and shatter. Once I get past the initial drama of anxiety, I settle in, rely on my past experience, and do what I need to do. It gets done. And because I’ve been practicing so long, it gets done right.

So, here I am, watching the sun sink in the west, as another day draws to a close. I’ll go have some dinner, then walk home, take a long, hot shower, and go early to bed.

Sounds like a plan.