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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In search of my flow state

stream flowing through forest with the flowing water in focusI’m in the process of resetting for the new year. Resetting my activities. Resetting my priorities. Resetting my activity levels. I typically do this earlier in the year, when I’m swept up in the New Year’s Resolution blitz.

But this year, I haven’t been feeling it. At all.

It’s not going nearly as well as I’d like. Work is weird. My life is weird. It’s all kind of… weird. I don’t feel like I’m fully inhabiting my own life, and I’ve been so busy with everything, lately, I haven’t had time to stim or reach a flow state for weeks… perhaps since the beginning of the year.

It’s maddening. Probably the worst thing about the way things have gone, for the past months, is the ever-increasing level of interruption in the course of each day. It’s absolutely maddening. As in, it makes me really, really mad. I have to be able to settle into extended periods of thought, in order to be effective, and my current job is preventing that on every level.

Distraction kills, and it’s doing a hack job on my performance at work, not to mention my job, overall.

Well, that’s the job, right? That’s “just how things are” in my current professional corner of the world, and anyone who can’t keep up is left in the dust. Personally, I’d be fine with being left behind. Just cut me a check and let me go. Let’s call it a day and say it was an interesting learning experience, shall we? And let’s all move on to other, better things.

But I don’t have a substantial back-up plan. I’ve been putting out feelers for work, but the kinds of work I’ve been applying for… well, it just hasn’t been a good fit. I got a job offer, a month ago, but I had to turn it down because the conditions were, well, crappy. A longer commute. Into the thick of the worst rush hour traffic in the area. Frenetic pace. Frenzied, from what I was told. In a building where they have chemicals that smell and bright lights that blind. An open work space plan. And not more money than I’m making now.

So… no. Not that.

I put in for some other jobs, and I heard back from what looked like a really good opportunity, but after I responded to them, they didn’t get back to me. I need to ping them again. There’s a good chance they took a look at my resume and realized — Hey, she doesn’t have a degree! — and, like many others, decided I “wasn’t a good fit”.

It’s a little depressing, actually.

But it’s got me thinking… About what is actually the best work for me to do. After being a web developer for 15 years, I gradually shifted into project and program management for the past 8 years or so, because it felt like the software engineering world was closing in on me and I was getting crowded out. I felt like I just couldn’t compete with all the lower cost talent with more updated skills… the people who “fit better” with organizations… or who had degrees. The project/program management space seems to be less amenable to people who literally teach themselves how to do things, than the development space. And while that didn’t hurt my prospects in the past handful of jobs I’ve had, it’s starting to feel like it’s closing in on me even more than development did.

bomb emoji with lit fuse looking down
This is about how my “career” is feeling, about now.

And indeed, the lack of flow is a huge issue. Somehow, I seem to have acquired work that I absolutely hate. Tracking other people’s activities. Communicating to everyone who needs to know about program and project status. Navigating political minefields. Battling for my territory. Making nice with people across the organization. Being interrupted every 20 minutes (or as soon as I get into a flow state). Conference calls. Lots of conference calls. With people who have thick accents and/or are on a poor phone connection. And more interruptions. Travel. Regular business travel, which doubles my workload and completely trashes my routine.

It just feels like a setup. I can do it for so long, then I am completely wiped out. Because nobody sees how much I struggle, and I can’t let on, because that would trash my career prospects like nothing else. And I can’t chance that.

The fact that I’m really good at it, is no consolation. At all.

I mean, seriously, I’m really good at it. I’m a fantastic meeting facilitator, I can communicate extremely well to people who need to know. I know how to work effectively with offshore folks (been doing it since 2002). And I can turn on a dime if the situation calls for it.

But man, oh, man, do I pay for it. In a very big way. Of course, nobody else sees how steep the price is, because they rely on me to keep doing what I’m doing, just the way they are accustomed to seeing me do it.

And seriously, this is no way to live.

I need my flow back. I need to settle into a chunk of code and just work my way through it. I need to cozy up with a tasty algorithm and just do my thang. Seriously, I do.

{pause to take a breath}

Okay, so where does that leave me? Or rather, where does that point me?

Realistically, away from where I am now. And back into the development world. In my former life (before I trained my replacements in 2002 and was then told to go find another job in 2005), I was one of the best of the best at my chosen line of work. Web development. Front-end web development. UI coding. Cross-browser. Cross-platform. Proficient in ‘nix flavors and the command line. Not afraid of anything code-related.

And it suited me. In a very big way. Because I could create things and make stuff work, like nobody else. I could convince browsers to do things they weren’t built to do. I was good. I was one of the best. And I was relieved of my duties by the bean-counters who had no idea what the work entailed. All they knew was that I was “too expensive” and they were convinced I could be replaced.

Hm.

Yeah, as it turns out (having managed a lot of projects involving developers who weren’t even close to as good as I was), I can’t be replaced. My skills are still needed. And my interview and subsequent job offer this past December (for a developer job) tells me that I still have a future in that realm. I tend to get pretty rigid about things and get convinced that since I’ve almost exclusively done project/program management for the past 3.5 years, so I’ve been telling myself that I have to stay in that space. But I don’t. I can shift back to development. I’m the only one who’s blocking myself, at this point.

Plus, I can do my own “thang” in the process. Build tools. For mobile. Just build things that show people what I do — like Temple Grandin recommends. I’ve actually got a pretty impressive portfolio, and it’s not even complete. I need to get focused on completing it, and lift myself up out of this increasingly wretched state I’ve been in, for the past year and a half, when it first started to dawn on me that this was probably not the best job choice for me.

There’s a lot I can do about my situation, right now. I can build my own apps. I can build my own websites. I can do a lot that shows how I work. And I can put the finishing touches on some projects I started over the past years but lost the energy to do them – because I was too wiped out from my day job to keep up with it all.

So, there is hope.

But for now, it’s time to go move some snow. We got a bunch of it overnight, and I need to shovel it before the temperatures start to rise. Heavy snow is no fun.

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).

Time for my first-day-of-the-month routine

2018 Calendar

Its time for my monthly routine — walking around the house, turning all of the calendars to the next month.

When we change our clocks, I adjust all the clocks in the house, first thing, before I do anything else. Same with calendars.

Every now and then, I’ll forget to turn a calendar over. Some rooms I forget about for months.  Then I walk into the room in November, and the calendar says it’s still July. That’s such a strange feeling, especially when the picture on the calendar is a completely different season than what I can see through the window.

It’s a nice way to start the day / month. A quiet kind of welcome in a quiet house, before everything gets “exciting”.

And now… off I go to get my daily dose of excitement at the office. It’s not so bad. But I’d rather have the quiet.

Tomorrow… tomorrow will be like that.

Gives me something to look forward to.  🙂

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.

Sunday – reading day

flower growing out of a book
So, I’ve been going-going-going for months and months on a number of writing projects. There’s been a ton of logistics to figure out, and it’s been fun in its own way. Additionally, I’ve been really busy with my day-job, to the point of exhaustion, which has its aspects of twisted pleasure — mmmmm! stress!!! Tasty…

In all honesty, there’s a certain sweetness to the steady pump of stress hormones in my system. They focus me. They make things seem much simpler than they actually are. They wake me up and provide energy, motivation, a sense of purpose.

But I’m feeling wrung out, these days. I’m feeling a bit… “thinned”. I need to feed myself, build myself up in ways that really work for me, so I can continue at the pace I need to keep, these days. Life won’t slow down for me, that’s for certain. I need to keep up. So, that means I need to do a bit more for myself. I need to be my own best friend.

So… Sundays. Yeah, Sundays. I’ve structured my life such that I don’t have anything happening on that last/first day of the week, and I need to put some more thought into how I use that time. I haven’t been reading like I should. I’ve been skimming and browsing and surfing, following links off Twitter and so forth. But I haven’t sat down with a book and worked my way through it from start to finish, in quite some time. I’ve started books, yes. Finished? Very seldom, in the past couple of years.

bookshelf packed with booksI really want to change that. So, I shall. I’ve got a study full of books that I haven’t read — I tend to “bookpile”, acquiring all kinds of books that I would love to read (and want to read at the time I buy them), but then don’t get around to reading. I can’t even count how many of these kinds of books I have in my collection. And yet, my first impulse is to get more books — often at the library — when I feel like reading something.

I’m a little tired of having to make runs to the library, though. I don’t have easy access to one, anymore. It’s a “long way around” trip to the nearest one in my library system, and I’ve become really possessive of my time. Plus, it takes planning to request a book, pick it up, and then return it at the right time, and with everything that’s been going on, I have less time and energy to spare for that executive function extravaganza. I’d rather not have to plan.

So, I have a way around that. And it fits really well into my plans. With all the really good books I have, I can keep myself well occupied for the foreseeable future. A lot of them are books I would have checked out of the library, anyway. And they’re (mostly) classics of their fields — texts which are often cited by others. So, I’m going to be getting enduring value from them.

Of course, there’s always the sensed “danger” of missing out on what’s going on in the world around me. What cutting-edge research am I overlooking? What new developments am I not paying attention to? But honestly, so much research (especially autism research) is based on flawed assumptions and arrogant presumptions, that it makes more sense for me to settle into the embrace of timeless wisdom and make myself comfortable there.

The research will be there, when I resurface… if I ever do.

Hm…

This line of thinking actually speaks to a larger theme in my life, these days — the need for substance, which I seem to be missing a lot, lately. I’ve got a lot of ideas running through my head, but I don’t seem to be finding a lot of… parity… in my world. There’s a lot of outrage, a lot of getting worked-up going on around me, but there’s not a lot of objective reasoning about things that have lasting value. Sure, there’s lots of chatter about present-day politics and office dynamics and what’s going to become of us all, but those seem to be couched in ephemera, centering around the here-and-now, not looking into the distant past, or imagining a whole new future.

Or maybe it’s just me. I’m tired, after all. And when I’m tired, my mind starts to do interesting things that lead to stories which don’t always correlate with the truth of the matter. I still have a lot to do, today — run a bunch of errands, then go to a friend’s birthday party (god help me), where I have to be social. Sure, I care about the people there. Yep, I enjoy their company. But after a long week of business travel, being all amped-up and tweaking my sensory issues to extremes? Yeah, the proverbial milk of human kindness isn’t exactly coursing through my veins, right now.

Well, so it goes. I’ll do what I have to do, then I have the day OFF tomorrow. It’s something to look forward to, something to work towards.

Reading. Just reading. And sleeping. And reading some more.

Sweet, sweet relief.