I dunno – I just don’t think there’s enough positive stuff out there about #Autism

human silhouette on beach with sunsestNot to mention success stories.

Okay, okay, I get it. We need to build support for folks who really need it. But I think at times that our Autistically rigid thinking keeps us aligned with some pretty rigid support possibilities, many of which simply aren’t available to all of us.

The needs of an Autistic kid in a city may be very different from the needs of a middle-aged Autistic woman living in the suburbs, and they may be very different from the needs of a 30-something Autistic man living in a rural area. And then we have our aging population… men and women… who have been through so much, and now face the double-whammy of becoming elderly (a challenge in society, in general) and having those sensory/social challenges which may become even more pronounced in old age.

I’m worried. Anxious. For myself and all my Autistic tribe. And I’m not alone.

The thing is, I suspect that anxiety takes the edge off my creativity. It locks me into rigid thinking. And it erodes my ability to come up with some really inventive solutions.

Personally, I think we Autistic folks are some of the most inventive people on the planet. For sure. I mean, look around — so much of what we have is the product (I believe) of an Autistic person with an intense interest in One Single Subject. That focus has produced some truly amazing things. And that same focus can help us fix our future.

So, the future… yeah. What does that hinge on?

Well, the past, for one. And also… patterns! Patterns, yes. We plot our course forward by referencing patterns — this leads to that, this causes that, if you do this, you can logically expect that. And we gain a sense of where we are in the world by watching other people and seeing how their lives have shaken out over time.

We are constantly learning from other people, “ingesting” their experiences, learning from their mistakes, and taking cues from their stories. Humans are story-loving creatures, and each of us has thousands of stories of our own that we collect over the course of our lives. They can be based on our own experiences, or they can be from our observations of others. Or we can make them up as we go along. But we have them. We use them. We rely on them to no end.

Yes… stories.

Earlier this week, I was chatting with an older Autistic man who spent time with younger Autistic people. He said he was really alarmed at how traumatized those young people were, how harrassed they were, how on-guard and roughed-up by life they were. These were young people who all had the advantage of knowing they’re Autistic, but it was such a burden for them.

😦

Major 😦

I personally don’t think we do a good enough job as a community, sharing our strengths and accomplishments… our joys and ecstasy. Autism for me is every bit as much about bliss, as it is about struggle — equal parts, I’d say. But the discussion so often centers around the struggle, perhaps because I think I’m going to get commiseration and support from others who know how I feel. Unfortunately, that’s seldom the case. If anything, it works against me. And I end up getting sucked down into the Pit of Despair, as I perseverate on the idea that somehow, somewhere, sometime, I might get some help.

I won’t… 93.72% of the time. Now and then, I will, but I spend far too much time working towards that 6.28% that’s occasional and intermittent at best.

So, where does that leave me? Sorta kinda where a lot of queer folks were left, back in the 1990s, when so many of us were coming out, but most of the media about being queer (especially movies) were so full of angst and pain and suffering. Suicide, too. Ugh. How many gay and lesbian movies (long before the concept of being queer took hold) showed us being miserable and downtrodden and better off ending our lives? To be honest, it wasn’t altogether unlike what Autism$peak$ has done. And while I’m not 100% on board with comparing Autistic folks to queer folks, all across the board, there are some pretty pronounced similarities.

  • Being different embarrasses our families.
  • They try to make us different — more like them.
  • If we’re lucky, they fail. If they succeed, we’re twisted into a version of ourselves we don’t understand.
  • Ostracism, misunderstanding, violence. Etc.

Anyway, this is a really long-winded way of saying I think the Autistic community could learn a thing or two from the LGBTQ+ community (and yes, we do overlap), especially insofar as the Pride movement is concerned. Celebrating our differences, developing our own culture and community, taking our place in the world just as we are, and having a lot of fun while doing it… There’s real power in that, I believe. And it’s where I hope we go with our Autistic community building.

I’m not gonna tell anybody what to do or how to do it, but I can do something in my little corner of the world. I can talk about my life in positive terms. I can share my triumphs and joys. I can really celebrate the successes of other Autistic folks. I can focus on the good, the strength, the fortitude, the brilliance. None of this takes away from the challenges we have — it’s merely ballast for my proverbial vessel as I sail the high seas of life.

There are so many wonderful, positive things about Autism that get lost in the crisis, anxiety, difficulty, drama, and shame of growing up Autistic. They get lost to parents, they get lost to us. They get lost to society, in general, obscured behind the ignorance and judgment. We go into hiding. Because it’s safe there.

And then, when we grow up, we can be so alienated, so accustomed to hiding, that our actual development isn’t recognized. Or people are so used to looking at us as they remember us, once upon a time, that they don’t give us the chance to shine.

I think that needs to change.

I can’t speak for anyone else, but I plan to change it on my side… do my best to unleash a torrent of writing about how absolutely excellent it can be to be Autistic. It might piss a lot of people off, because it may undermine their message about how we need help and support. But I’m not going to lose the good parts of my life, while I wait around for the government or some organization to meet my needs.

Certainly, it would help… but I think we can do more than that.

Well, I can, anyway.

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Rebuilding my life with #AutismAwareness

school building in snow

It’s #AutismAwarenessMonth, and I’m already tired. Ha! Of course I am. Sheesh, the ongoing … onslaught… of misinformation, disinformation, and all these otherwise unaffected-by-Autism people weighing in with their observations… it all gets to be too much.

And yet, I can’t seem to look away. It’s like a train wreck. All month long. And it’s only the 4th of April. Good grief.

One of the really depleting things about this month, is that I become all the more aware of how much more difficult my life has been, because I had no idea about how being Autistic was affecting me, or what to do about it. I spent so, so many years struggling, not knowing what the deal was with me, not understanding that there was literally something distinctly different about me that put me at a disadvantage in some ways (and at an advantage in others). It wasn’t luck or happenstance. It was a structural difference in my makeup that set me apart and introduced specific challenges to me.

I had no idea. I had no awareness. So, I couldn’t manage my situation. I couldn’t adjust. I couldn’t find any patterns, because my mind was so turned around by everything that I didn’t know what patterns to look for. I couldn’t tease out the differences from one day to the next, and did that ever have an impact.

Well, that being said, now I know better. And now I can do better. True, I did not manage to finish college (despite earning 90 credits). Too much going on. Too much to overcome. Too little information on one and, and too much on the other. It’s rarely actually been a huge problem. With a few exceptions, where my advancement opportunities were limited because I didn’t have a degree, I’ve always managed to find good-paying work that let me make the most of my abilities. I have a “nose” for opportunity, and I’m really proactive and a dedicated team player, so I’ve always had that to fall back on.

But now I’m getting older, employers are relying on web-based resume intake systems, and without a degree, I can’t even get pasts the “electronic gatekeepers” to make my case for getting the job. Plus, if I want to change careers, which I’m thinking about doing, after 25+ years in high tech, I need a degree. Because taking credit for building out key features of a leading financial services website and optimizing technology just doesn’t have the same cachet outside this gilded cage of high tech.

I need something else to fall back on.

I’ve been looking for degree completion programs for years, but none of them were accessible for me. Either they were too expensive, or they were too time-consuming and the pace was dictated by the institution. I was expected to carry a consistent courseload for two years straight, which — if you’re me — is a clear warning shot across the proverbial bow. There’s no way I can commit to that workload with absolute certainty.

Can we say meltdown? ‘Cause that’s where I’d be — probably frequently — while scrambling to keep up / catch up. Call it Executive Function issues. Call it inconsistency. Call it what you will. It’d wreck me, for sure, what with my full-time job, caring for my dependent partner, serving on town boards, keeping my own interests alive, and keeping myself healthy and fit… on top of a degree completion program.

But I believe I’ve found a solution. I found a program that’s self-paced, that gives me credit for what I’ve done, and it lets me earn a degree in what I’ve been doing for the past 25 years. And it costs a fraction of what a traditional degree completion program would cost.

I’m a grown-up, with adult responsibilities and a full life. And I’m Autistic. So, I need to choose and act accordingly. I need to be constantly aware of my strengths and my limitations, to accommodate myself and not take things for granted. I took so much for granted, when I was younger, thinking that if I just kept pressing on in the same ways, I’d be able to eventually succeed. But I was doing things the way I saw all the neurotypical people in the world doing it. I tried to mimic what they did, and how they did it, assuming that I could just power through.

Untrue. I burned myself out, over and over. I overloaded myself, pushed myself to one meltdown after another, drank too much, got pulled into the wrong crowds, took the wrong jobs, stuck with the wrong schedule, and I got hurt. I crushed myself. And that was no good.

Now, I actually have a chance to turn this around, and that’s what I’m doing. I started the exploration process a couple of weeks ago, and I started the application process last week. I’ll work on my application some more today, since I have some time. And I’ll gear up for this process, the start of this new journey, with my limits clearly in mind.

It’s not that I’m going to let my limitations define me. Far from it. I’m just going to factor them in and manage them accordingly. If I know about my limits, and I know how they block me, it’s up to me to figure out how to either adapt or avoid them. If I’m in a position to actually do something about my situation (and I am), it’s up to me to handle things properly.

If my energy levels are dropping, I need to step away and recharge — and then bring myself back on point in the future.

If I’m getting overwhelmed, I need to step away and take steps to get myself un-maxed-out again… then resume what I was doing before.

If I’m able to work faster than the “norm”, then I need to kick it into high gear, because at some point, I may need to slow down. So, I have to plan and act accordingly, so I can keep ahead of things and make the most of my up-times to offset my down-times.

And so, I shall. With Autism in mind. Awareness. Acceptance. And action.

This next step (going back to school) has been a long time coming. I’m gonna make the most of it.

How much has #television contributed to the #Autism panic?

television

I’ve been thinking a lot, lately, about how … abruptly Autism has seemed to have emerged on the public scene. So many people getting diagnosed, supposedly in “epidemic” proportions. “Autism wasn’t a problem when I was growing up,” people say… “It must be something new — vaccinations, environmental toxins, gut health, gluten, and more.”

I’m not going down those particular ratholes, because I think there’s another factor that’s really contributing, not only to the number of people who are getting diagnosed, but in the distress that we’re experiencing because we’re Autistic.

I think it has a little bit to do with the surge in pathologization (if that’s a word) of behaviors that have been around since the beginning of time. There have always been folks like is in the general population. But society’s acceptance of our traits has dramatically decreased, over the past 40 years. And that, I believe, contributes far more to the issues and challenges we experience, than any of the commonly blamed “causes”.

Society has never been super-accepting of outliers. My ancestors fled their homes many times over many generations, as a result of local people not wanting them there. For over 1000 years, they routinely had to move along to some other locale, because people didn’t like their language, their culture, their religion, their ways. Back and forth across Europe they went, chased from one country to another, because they just didn’t fit.

So, the human race has never been strong on the whole acceptance bit.

But now… I’ve noticed a massive shift in people’s acceptance levels of traits that I grew up with, which were never seen as liabilities in the place/family of my origin, which were simply seen as differences that gave you certain strengths, where others were weak — and vice versa. It’s not just Autism traits, either — flapping, talking fast and long about fascinating subjects, being sensitive to foods, needing to stim — it’s everywhere.

When I got into high tech, 25 years ago, I was an outlier. There weren’t many women on the technical side of the house, but people made room for me. I earned my place, weirdo that I was (and yes, I am a weirdo, and proud of it!). And there wasn’t the raging sexism that I see in high tech, now.

And I think television has had a hugely influential role in all of this. Because we’ve been inundated with all the messages, for countless hours, on countless channels, about how men and women are supposed to look and behave… for how “normal” people are supposed to look and behave. Television has provided a bland, one-dimensional template for everyone to abide by, creating emotional bonds between audiences and invented characters which are the product of a media industry that’s almost mind-bogglingly homogenous. Writers of color, Autistic writers, disabled creators, people who don’t fit in the mainstream, don’t have great representation there.

And it shows.

Personally, I have to wonder how much television people who freak out over the “Autism epidemic” actually watch. The folks who “light it up blue” and support A$… how many hours have they spent in front of the glowing box (or eyes glued to a device), internalizing all the subtle, one-dimensional messages about what it means to be a human being, and how we should behave? People who cringe at the different ways people present and identify, gender-wise… who squirm at speech patterns and behaviors that don’t match what they think are right… how many of them have had their social expectations set by all the t.v. characters they connect with each day and each night?

I have to wonder.

And I have to admit, I really despair, when I see what kinds of characters are on t.v., as well as in movies. For the sake of drama and an unfolding story, embarrassingly immature people are trotted out for our “entertainment”, their foolishness normalized, their vacuity standardized, their shallowness presented regularly as “how people really are”. It’s depressing. And when you toss in the music and laugh tracks and subtle ways creators and producers use to entice viewers and hold their attention… Ugh… even more depressing.

Over the past years, I’ve been watching less and less television. I watch a few shows regularly, but mostly I watch movies (which are slightly better, but also have their shortcomings). And the more time I spend away from it, the more tolerant I find I am. That includes tolerance for myself. I’m not as intensely sensitized to the ways I differ from others (of course, menopause helps, because I’m no longer hormonally inclined to give a damn what others think). I’m more tolerant of others, as well. Differences don’t bother me, the way they used to — and the way they bother others.

Because my templates for acceptable human behavior haven’t been defined by a handful of white, middle-class collaborators who live in their own little bubble and work behind closed doors.

And I have to wonder, if more people just didn’t watch t.v. and let it tell them what it means to be human, how much more human could we actually become — and allow others to be?

If I’d only known about #Autism, Things could have been *very* different for me during #Menopause

roller coasterI’m sitting here feeling sorry for myself again. I’ve been reflecting on my life a lot, lately, thinking about how my life has gone… thinking about how it could have gone differently… thinking about what could have been done, if I’d just known about being Autistic.

Or rather, if I’d just gotten professional confirmation of what I’d suspected since 1998. What I’d confirmed by reading and thinking and reflecting and reading some more, along with taking various tests and quizzes and putting myself through my paces, time and time again.

I think the time in my life that was the most critical, was when I was going through menopause, 15 years ago. It was incredibly rough, and it really took its toll. And if I had understood more about how Autism affected me, not to mention how menopause affected me, and how the two intersected, I really believe my life would have gone differently.

Sure, there would have been upheaval. Yes, there would have been uncertainty. But I could have factored in the elements of my Autistic self, and figured out how my changing chemistry was interacting with it. I needn’t have been so concerned that I was losing my mind. Because some basic calculations and some simple tools could have helped me keep myself on track.

But no. The awareness wasn’t there. I didn’t “get” that all the hormonal changes would plunge me into chaos far greater than anything I experienced in childhood — because I wasn’t “supposed” to have that level of chaos, being an adult and all. I didn’t fully appreciate that my situation could be tracked and managed, both from an Autistic side and a menopausal side, and I could have gotten to know my full self better, as a result. Nor did I have the realization that fully understanding both Autism and menopause could actually ensure (not guarantee, but give me a fighting chance) that I’d be able to navigate the ever-changing world with objectivity and self-assurance, instead of a constantly increasing sense of dread and panic.

Yeah, things could have been very different for me. I’m sure of it. But there was too much I didn’t know. And I didn’t realize how important it was for me to go looking around for answers.

‘Cause I was in constant sensory distress. Overwhelm. Confusion. And I didn’t have a lot of bandwidth left for research.

Well, I came through it. And I know now how to address my situation both from an Autistic and a basic everyday physiology point of view. I’m doing it today, as I’m dealing with some nagging pain and fatigue, while keeping to a somewhat regular work schedule. I’m looking up answers to my situation, at the same time that I’m taking it easy on myself and cutting myself a break in important ways.

I can’t get those years back, that I suffered more than I could have. But I can certainly do something for myself now.

Something must be up in the world… but I wouldn’t know.

man in a boat on a lake with mountains in the backgroundWow – people are on a tear tonight.

All kinds of feisty, racing around, slamming into each other… the cops are out en force, and I’ve seen plenty of people pulled over, sometimes with lots of extra emergency vehicles around them.

Traffic on the way home was crazy tonight, with people flying all up in each others’ tail-lights, beeping, roaring… you name it. And this is even more than usual.

Something must be up in the world.

But you know what? It’s been 2 days since I looked at the news, and I have no idea what bees might be in their bonnets. Nor do I care. I mean, I care, but not so much that I’m willing to sacrifice my own well-being for others.

And I realize, that’s what I’ve been doing, lo, these many years that I’ve been paying attention to what other people do in the public arena. What a poor use of time. It’s useful to keep in touch with who votes in my favor, and it’s a good idea to participate in positive change. But all this other… crap that’s all over the news… yeah, it just doesn’t make sense to follow any of it.

Especially when nothing really seems to change much, even after all the upheaval and drama. There are so many other more constructive uses for my time and energy, than “following” the antics of people who are all into the drama for drama’s sake.

Me? I want to actually accomplish something.

So, I do. I’ve been reading a lot, lately. Spending far less time online. Chillin’. And it’s good.

Have a lovely evening — or day, if you’re reading this in the morning.

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.

#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. 🙂

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…