Or, I could just do what I’ve always wanted to do

open book with fairy dust on a messy backgroundAs it turns out, it really doesn’t make sense for me to go back to school, at this point. I looked at the numbers for how much it’s going to cost me, and I checked around to see what other people’s experience has been like with the program I chose. Reports are mixed. Some people love it, some hate it. Being totally realistic, when I think about my time commitments, my money situation, and the general trajectory of my life, if this is gonna be expensive and time-consuming, going back to school is definitely not at the top of the list.

I tend to think about restructuring my life on a semi-regular basis, especially when I am tired and overworked. I end up charting a whole new big course for my life, forgetting about the things I already have happening. And I lose the plot of my life. I’ve been feeling like that’s been happening a lot, lately. Losing the plot, forgetting what my priorities really are, overlooking the things that I love and that mean so much to me, and just getting caught up in distractions.

So, while I like the idea of having a degree, finally, unless it is absolutely, positively critical for me, and it’s fast-tracked and not expensive, it doesn’t make sense for me to sink the time, energy, and money into that whole endeavor.

So, back to my original programming. Focus on my writing, focus on my day-to-day life, my responsibilities, my obligations, and do my best by them, instead of getting wrapped up in a change that I’m somehow convinced is going to dramatically alter the course of my life.

I really have to stay fluid with this. Everything feels like it’s shifting and changing around me, and I need to not lose the plot on my writing. I’ve become increasingly concerned with the end-game I’m caught up in right now. Getting a degree for the sake of professional advancement doesn’t necessarily make sense, if I’m going to age out of the 9-to-5 workforce in 10-20 years. My age is a factor where I work, and people my age are usually shown the door before too long. Early retirement… I’ll be eligible in less than 5 years, which seems just so bizarre to me. If that happens – and I sincerely hope it will – that means I’ll get severance pay, and that’ll be a bit of a buffer to float me. It probably won’t cover me for long, but it will be something. And that is what I am holding out for.

So, yeah… end-game. Not in terms of the end of my life, but in terms of the end of my standard-issue mainstreamed life. I own a house with a mortgage that will be paid off in less than 12 years. After that, my need to make boucoup bucks will decrease dramatically. I’m also setting myself up for greater self-sufficiency — getting a plot in a community garden, setting up my own home for greater energy efficiency, streamlining just about everything I can manage, buying big-ticket items now, while I can still afford them, and generally cutting down on my dependency on whatever I can — especially the expensive shit.

As for income, ideally, I’ll be self-supporting via my writing, in another 12 years. It may sound like a stretch, but I need to get my act together with this, do the work I need to do in order to write the best work I can and really contribute. For all my complaining about the need to promote myself, that’s just a part of the whole for anyone who wants to be self-sustaining. I just need to find the proper tools to get myself some exposure and connect with people who actually want to read my work.

Get my Patreon refined. Actually make that a thing.

And put my energy into that, rather than getting a degree which I may or may not need, in the grand scheme of things.

If I need it, and it’s easy and doesn’t wreck my life, I’ll go for that degree. But quite frankly, I’ve been dancing around getting my writing out there for quite some time. Fits and starts. Fits and starts. And it’s getting a little old.

So, time to turn my prodigious focus to the task of figuring out this writing business, figuring out how I can get some income coming in about it. There are a lot of micropayment options out there, and if I build up enough of a following, that could sustain me, most likely. It’s just a matter of connecting with people who can and will contribute — complete the circle of creation, to keep it going.

Well, we’ll see how it turns out. Always an adventure.

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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.

Raised #Autistic – Lessons Learned

books hanging from bookstrapAll the talk about how Autism diagnoses have skyrocketed in the last 30 years, overlooks one key factor:

Once upon a time, the Autism Spectrum wasn’t pathologized. It was developed.

It was very much a part of life, and there were institutions and mitigators in place to help weave that neurotype into the overall fabric of life.

I was raised in an area that’s chock-full of Autistic folks. Is this abnormal? Not on your life. In fact, it’s the norm. And every aspect of growing up is/was geared towards training individuals how to be responsible members of the community. It helps that it’s a rural area, where everybody has to pitch in, no matter what, so nobody gets a pass to completely drop out of society because of any difficulties they may have. Society needs them, it’s made clear. And whatever they can do — in whatever measure — is not only needed, but required.

Take my aunt, for example. She just passed away last year, and she was probably one of the most “obviously” Autistic persons I’ve ever met. All the classic behaviors, all the classic traits… that was Aunt M. She definitely did not have an easy life, but she lived by a code that placed others first at all times. She had a quote on her dresser that effectively said, “Whatever sufferings I may have, others have it even worse. And in the end, the question is not how much I’ve gotten out of life, but what I’ve given to those who are struggling more than I.

That’s the ethos I was raised with overall, and I can tell you that Aunt M personified that, each and every day. She had her challenges, of course. My mom had to constantly watch out for her, from the time they were both young girls, till the day she died. She was bullied, she was threatened, she was abandoned. And she had intense issues with anxiety and social interactions.

But she lived her life. She lived by principles. And in the end, he had such an important place in life, her funeral was attended by close to 100 people, many of whom relied on her for many things throughout the course of her life.

I was raised in the same way — principles. Be a responsible member of society. Put others first. Realize that others have troubles, too, and rather than thinking about what I need to get out of the social equation, I need to put myself out there and be as helpful to others as I can. It’s not about me. Yes, I have intense suffering and challenges at times. Yes, my life is a non-stop parade of pains and joys — often so intermingled, it’s hard to tell which is which. But in the end, what I contribute to the world is far more important than what accommodations I get to secure my own happiness.

Now, you might dismiss this as being some lofty approach by someone who’s not impacted all that heavily by Autism. But you’d be wrong about that. Everything I have, everything I can do, it’s all been hard-won and paid-for at a steep price. And I’ve been around long enough to realize what a toll it’s taken on me, over the years.

Does that toll matter? Nope. The bottom line, for me, is what I add to the overall human equation. I’m responsible for my corner of the universe. I have to keep it clean and orderly and do my best to not be a liability towards others. I have to keep my own suffering out of view, because what I have to give is far more important than anything I feel I need to take.

All those years, when I was in excruciating chronic pain and some days couldn’t get out of the bed… the short time I was homeless… the times when I’ve had to quit jobs and move on, because the environment was so painful I couldn’t tolerate it anymore… Through all the meltdowns, the shutdowns, the touch-is-pain moments… The one thing that kept me going was that it wasn’t only about me. I had to get up and go to work to support my household. And if I couldn’t manage a full-time job, then I had to find a regular source of income that let me work part-time and still make enough to pay my rent.

The thing that carried me through all those years of intensity and hardship, was my upbringing by parents, grandparents, and a wider community who were all Autistic. Who knew what it meant to struggle, and who still pressed on and pushed me to deal. They didn’t let me off the hook. They kept at me, and kept reminding me of what was Right, what was Wrong, and urged me to do the Right thing. Even when it was impossible, they still demanded that I do my best. No excuses. Just get on with it. Yes, life is painful and awkward, but that’s what teaching and training were all about. I had to learn. I had to be taught. I had to be raised.

There was never the assumption that kids already inherently knew the right thing to do. There was the assumption that adult life is challenging and requires skill, and like any skilled endeavor, that takes training and practice and continuous discipline. The skills I have now, which have allowed me to live a really full life and experience so much that many people only dream about, they didn’t magically emerge from my pristine primal state. They were abilities that were identified, prioritized, and emphasized as the sort of thing that all adults do.

And there was no argument.

Yes, it was tough. Yes, it was challenging. Yes, I still have leftover “stuff” from all those years of training. I was enculturated into an Autistic society, and there were Rules and Regulations for everything. It was rough, at the time, but all the hard lessons have made it possible for me to live my life… regardless.

The skills I developed at just getting on with things, for putting others first, for making the effort to be a contributing member of society — even when I was disabled — made all the difference in the world. Society has a way of looking out for those who support it and contribute, and that’s always been my “safety net”, if I even have one. I make myself useful to others. I contribute. I’m not perfect, I’m pretty weird at times, I’m Autistic, I can be pretty off-putting at times. But in the end, my goal is to make myself an asset to the world around me, not only devote myself to getting my needs accommodated.

That’s all because I was raised by Autistic folks. Those were the Rules.

’nuff said.

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.

“Say what?”

hand near ear with vibration

Well, this is interesting… I’m realizing more and more, just how much my hearing difficulties have affected my day-to-day life, interactions with people, my willingness to engage with others, socialize, try things, and get an education.

I mean, yeah, my overall sensory issues have had a really … dampening… effect on me. Experiencing light touch as pain can be a source of constant distress. Balance issues put me in a constant state of hypervigilance, when I’m “off”. Light and sounds can be painful, too. There’s a reason I go food shopping every day — so I only have to be in the store for 10 minutes at a time (and yes, it works!). All of that can add up over time to a pretty significant trauma load. Even the little traumas, if they aren’t cleared out of my overtaxed system, build up to something bigger and badder than the individual elements, themselves.

And then there’s my hearing. Such as it is. Most of what I hear, if I’m not listening intentionally, is a muffled mmmmmfffftgrrrrlllllnnnnb. And yes, it is maddening for people who deal with me to have to repeat . themselves . every  . single . time . they . say . something . to . me . unannounced. I really feel for them. Because sometimes you just want to feel like you’re being heard, without having to repeat yourself every . single . time.

But what can I do? Unless I’m paying attention to what someone is saying to me, I don’t pick it up. I just don’t.

And it’s getting to be more and more of a pain in the neck. As time has passed and the high tech industry has evolved, I’m finding myself in more and more “leadership” positions, where I’m directing a bunch of lower-paid folks (often on the other side of the world). I’m also responsible for communicating progress to higher-ups. And yes, this is a massive pain in my hind-parts, because those are the least-capable parts of me — phone calls with people who have thick accents over bad internet connections… distilling all the details of the past week in can-do Powerpoints that press all the right “comfort buttons” in hyper-controlling people at a higher pay grade than myself… Keeping lines of communication open with people of all types…

What did I do in a past life to earn this steady stream of demoralization and practically built-in failure?!

I ask you…

It really is kind of funny, if you think about it. Either that, or cruel. Good thing I’m post-menopausal and no longer hormonally inclined to fret about not getting everything right. Good thing I care a lot less about what other people think, and I’ve lived in my body/brain long enough to know not to trust all the terrible things I say about/to myself. They haven’t fired me yet, so I guess I’m doing okay. Plus, I’m ahead of the game, because even at my worst, I do a better job than a lot of non-Autistic folks do when at their best.

So, I’ve got that going for me.

The only problem is… I can’t hear for shit, sometimes. Seriously, I can’t. I don’t think it’s gotten worse for me than it was when I was younger. It’s just that now I have to talk to people a lot more. For something like 15 years, I was a developer, so I could just communicate with my computer and code. Not worry about the people stuff. And I wasn’t saying “How’s that? Can you repeat please?” every 1o minutes.

Ha! I should count how often I do that, these days. Might be eye (and ear) opening.

Anyway, I realize more and more, these days, just how much my hearing difficulties have affected my life. I avoid all kids of stuff because I might not hear properly, and I might A) make a fool of myself, B) get into trouble, or C) actually be in danger.  I can’t do work that involves other people and power equipment, because I might not hear a warning, and I might lose a finger… or an arm. That’s a bigger loss than I like to admit, because I love manual labor. And I would love to be able to support myself while working with power equipment. But at this point, I don’t think that’d be safe.

I also don’t go out much, because I might have to interact with people, and the only thing more lonely than being around people who aren’t trying to connect, is being around people who are trying to connect, but I have no idea what’s going on, because I can’t hear them properly. Sure, I can cue the canned greetings and response, but I’d really like to be able to do more than that. But people just don’t have the time. And when I keep asking them to repeat themselves, they seem to get tired of dealing with me.

I’ve been thinking about talking to my doctor about this. I probably should, because maybe there’s something to be done. I really worry about interactions with the police and other first responders, not to mention other authority figures. Having trouble hearing is a great way to get shot by the police, based on recent history, so yeah — in the interest of living a full life, I should probably look into this.

I just have to prepare properly. I think I’ll write up a description of my symptoms for my doctor, describe my difficulties, and ask her if there’s anything to be done. It might be nice to have some sort of assistive device that could block out all the ambient noise, so I can concentrate on what’s being said to me. The idea of wearing a hearing aid worries me, first because of the distracting feel, second because it can call me out as vulnerable and people might try to take advantage of me, thirdly because I really don’t want people to pity me and treat me differently.

But other people deal with that all the time, so maybe I should quit being so squeamish.

Anyway, that’s my latest “thing”. The hearing situation. Or inconsistent lack thereof. I’m going to learn a little bit of ASL, I think, because I’ve been wanting to do that for some time, now. It’s something to add to my overall skillset. I need skills. And I also need to widen my world a bit.

It’s all an adventure, isn’t it?

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 🙂

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. 🙂