Am I going to be able to handle this? Do I have a choice?

Minoan bull leaping - three humans jumping over a charging bull

I’m in a modified “bull-leaping” state today. I’m getting ready for an extended trip with my partner, and she’s not doing well – physically, emotionally, or cognitively. She’s intensely anxious about the trip, where she’ll be speaking at an international conference. It’s a great opportunity, but with over 5,000 people there… yeah… it’s overwhelming.

So, there’s that dread/excitement.

And then there’s her physical health, which is not good. She doesn’t exercise. She sleeps a lot. And she spends most of her waking hours in bed looking at Facebook. She’s got mobility issues from arthritis and sheer inactivity. Muscle atrophy and all that. And she’s intensely allergic to, well, just about everything.

And then there’s the emotional piece. She’s all over the map. Cognitively, she’s been declining over the past few years, and with that comes amped-up emotions. Lots of fear. Sadness. Frustration. The whole nine yards.

So, it’s become increasingly challenging to live with her, deal with her ups and downs, and also handle all of the extra work of literally taking care of her. As the years pass, she’s less and less able to take care of herself, which I haven’t exactly helped because of my own rigidity. If she does things “wrong”, I have a tendency to flip out, and that keeps her from doing what she needs to do (even if I think it’s wrong – and, for the record, it is).

Autism has not helped us, in this respect. And as time goes by, and she’s increasingly dependent on me for so much, I feel the sting of my own Autism even more. It’s impairing, at times, this way I am. And just trying to keep up with everything – including increased business trips – really strains my patience and my endurance.

I’m a workhorse, though. I put my head down and soldier through. I make it happen. Because I can’t see any other way. And I might as well get used to this, because I’ve promised her I will never, ever put her in a home. And I won’t. People tell me I’ll reconsider that, on down the line, especially since she’s considerably older than me, and just when things are starting to fall apart for her, they’re starting to come together for me, according to mainstream standards.

But I can work around this. I can work with it. I don’t have to be flying all across the country to seek my fortune, like others expect me to. I don’t even want to do it, to be honest. I’d rather just stay home and work on my own stuff and spend time with my sweet partner.

It still gets to me, though, how limited support systems are for people like me. Those of us who have a unique constellation of qualities that make living in the world-as-it-is extremely taxing, and who have specific needs that aren’t typically addressed by the usual offerings… well, we’re kind of out of luck, in many respects. If we’re “too functional”, we get accused of just wanting attention. If we’re really impaired, we get our agency taken away and we’re treated like wards of society. If we’re on-again-off-again, we can’t really ask for help, because while we may need help one day, we may not need that the next.

It’s so frustrating. It’s maddening. Sometimes I just need help, but people’s own issues get in the way of them being able to be genuinely helpful.

Either they feel all sorts of pity for me, because I’m “impaired”.

Or they feel disdain, because I can’t do for myself.

Or they take it all in, watch closely, and then go talk to other people about me. That’s not helpful at all.

Gossip. Anxiety. Fear of perceived weakness. Total inability to treat others with dignity and respect, unless they’re just like them.

It’s worst with my family. Both sides are a problem. My family is a problem, because they love to gossip and judge and they don’t get the variable abilities thing (even though they’re so Autistic, it’s scary). My partner’s side of the family is so judgmental and they don’t treat her well. They make fun of her. They act like it’s the end of the world, if she just can’t keep up with everyone. They’re so busy going a million miles an hour – to where, I don’t know, because ultimately, they just end up back on the couch watching endlessly mind-numbing television – and if you don’t keep up!!!, well, there must be something wrong with you.

It makes us not want to be around any of them. Which is why we probably won’t make the godawful marathon trip to see them over Thanksgiving and/or Christmas.

People. Hrmph.

But I digress. The first task at hand is to finish all the errands in preparation for the trip, get my partner up early enough that she has time to take care of herself, pack, and make sure we have everything we need in the van. I’ve got the battery for her power scooter charged, and that’s good to go. I really do need to develop better systems for taking care of both of us. I’ve been resisting doing that, because it feels like capitulation. But screw it. I’ve gotta come up with some reliable supports for myself and make sure I’m up to the years ahead — however many those will be.

Caretakers often have their lives cut shorter because of the stress of caretaking. But I can’t let that happen to me. Somehow, someway, there’s got to be a way to engineer this properly.

And so I’ll do that. Through logic. Reason. Perseverance. And all the faculties I have at my disposal, which are many and various.

Main thing is to get enough sleep. If that doesn’t happen, everything falls down.

But enough of that. It’s time to kick this machine into gear and motor into the fray.

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#Autism and #suicide – what keeps me alive

bookshelf packed with books

I’ve been thinking a lot about how I’ve lived my life, thus far. My birthday is coming up in less than a month, so my thoughts turn to retrospectives on the past year, as well as my life. I’ve only been around for ~53 years (compared to the 100+ years my elder relatives usually live to), so relatively speaking, I feel like I’m just getting started.

I know, I know, Autistic people are supposed to die something like 16 years before their neurotypical peers, and I’m sure many do. But all the Autistic folks I’ve been related to and have known, have all lived extraordinarily long lives, and they’ve been active and engaged in the world until the last few years.

So, I’m planning on being around for at least another 53 years — probably longer, since I’m in better shape than most of my peers, and I live my life intentionally, with future strength and stability in mind.

Anyway, I’ve been thinking a lot about the choices I’ve made in life, and how I haven’t really achieved everything I hoped to, over the course of the years. I’ve had so many dreams, so many plans, so many good intentions, and they all came to nothing. Because I couldn’t sustain the level of effort required to make it happen. I ran out of metaphorical steam. I got worn out. I worked to excess, then I crashed, and I never fully recovered. Basically, my life reads like one failed experiment after another.

And yet… I’m still here. And thinking about suicide and death and mental health, these days, I realize just how much of my life has been structured around keeping myself alive and mentally healthy, as everything around me has seemingly conspired to do the opposite.

I live in a profoundly hostile environment, full of social land mines and ample opportunities for faux pas that carry a heavy social toll. I’m active in my world, but I’m not at all comfortable in it. And while I do contribute, and there are a lot of people who really love and care for me, if I could leave it tomorrow for a destination that suits me and who/how I am more comfortably and healthily, I would — without a second thought.

But I can’t leave. The supports I’ve got, which I’ve worked so hard to put into place, are just now starting to “bear fruit”, as it were. After years of really scary precarious living, I’m finally in a place of stability that I can build on. And I have a household to support, including a disabled partner, so I’m not going to ditch my job anytime soon, unless something equal or better comes along.

That being said, I realize it’s been this way for my entire adult life. I’ve made my choices, and I’ve situated myself in life in the most economically advantaged position I can get, at a great cost to my mental and physical health. So, I need to go to extra lengths to keep myself viable.

That means… books! That means… taking the whole weekend off and decompressing… writing, reading, researching. That means, surrounding myself with stuff that brings me pleasure, whether it’s artwork I’ve made or pictures I’ve taken or art and photos I’ve bought from other independent artists. My home is full of many, many relatively inexpensive things that I love, which I (and my partner) just happened upon in our travels. A little figurine that cost $2. A Chinese hand fan that was given to us by friends whose wedding we DJ’ed. A giclee of a painting of a scene not far from my childhood home, by an Autistic woman I know. Pottery I threw many years ago, which I still love.

And my research… My special interests have varied and been in flux, over the past 10 years, but I still have the books. And when I dig into them again, I realize just how much they have helped me, over the years. All that reading, all that journaling, all those notes… they may never come to anything in the big, wide world, but they’ve kept me sane. They’ve kept me healthy. They’ve given me the outlet and the self-expression I needed, away from the pressures of professional performance.

And that’s a beautiful thing.

So, as my birthday approaches, and I start to slip into regret over all the things I never managed to accomplish, I have to remember — I’ve been very, very active in the field(s) of my choice over the years, and I’ve made some pretty amazing contributions to those fields within the sphere of my own personal life. It’s kept me alive, and it’s created something beautiful in my life — as well as indirectly in the lives of others who I’ve helped because my intense “special interests” made it possible for me to function.

That should count for something, to me. And it does. Just because nobody else knows about it, doesn’t mean it didn’t happen.

If a tree falls in the forest, and I’m the only one who hears it, yes… it does make a sound.

A very loud sound, indeed.

#Autism and #suicide / suicidal ideation… for starters

Trigger Warning

For the record, I’m not sure where this blog post is going to go, so if you get triggered by talk about Autism and suicide, it’s probably best not to read this. There are so many other really great things written on the blogosphere. I encourage you to seek them out instead of losing time here.

Camouflaging may be an autism specific marker for suicidality.
Camouflaging may be an autism specific marker for suicidality. Pretending to be neurotypical may literally be killing us. Wow. #INSAR2018  From Sara Luterman  ‏@slooterman

So, Autism and suicide. Apparently it got a lot of attention at the latest INSAR conference in Rotterdam, last week. And a lot of people on Twitter have been talking about it, since.

I have mixed feelings about suicide. I’ve dealt with suicidal ideation since I was a teenager. I can’t recall having that issue when I was younger — I think I was way too overloaded all the time to spare much thought about anything being different for me (i.e., not having to endure a miserable life). Then again, as challenging as my childhood was, there were ample opportunities for me to decompress and experience the ecstasy of special interests — and, well, just be and autistic little kid.

My mother actually loves to talk about what a little scientist I was, when I was younger. She thinks it’s hilarious and fascinating (not pathological) that I dismantled “girl toys” that were given to me, to see how they worked and use them for different uses, rather than playing with them as they were originally designed. All the stuff that would have qualified me for a DSM-V autism diagnosis and pathologized me within an inch of my life… well, those were all just quirks I had. They were the things that made me… me. And both my parents really loved and enjoyed that.

Of course, home was one thing. School was another. I was bullied intensely all during 5th and 7th grades, and I really struggled in many ways. But I ever thought about ending it all. When I got into high school, that changed. And I have to say, looking back on my four years there, I did engage in self-injury… but in the form of cross-country running. I ran myself ragged. Wore myself down to a rail, with my intense workouts. But I was fit, and I was winning, so it didn’t stand out at all.

I also started drinking in high school, and that took the edge off my intense discomfort. But it took me down some very dark roads, and when I re-emerged from my drunken haze(s), things were even worse than when I’d picked up a drink the night (or afternoon or morning) before. Drinking, ironically, may have saved my life at the start, because it helped me take the edge off the intense discomfort and mis-match between what I wanted for myself and what the world was imposing. Even if it was temporary, even if it did screw me up, it was still a pressure valve I could use at will. But it became a case of diminishing returns, and drinking in fact pushed me towards killing myself a number of times, until I quit for good, 29 years ago.

Thoughts of ending it all (let’s call it “SI” for “Suicidal Ideation”, a term I hate, but which serves its purpose) started in earnest when I was drinking, now that I think about it. I was so, so miserable. So queer. So autistic. So confused. So set-upon by everything. People expected a tremendous amount from me — and they weren’t wrong to do so. But they never provided me the kind of conditions I needed to truly excel. They just expected me, like some automaton, to produce excellence on a regular basis. They expected religion to meet my spiritual needs. They expected conformity to provide all I could ask for. They expected me to crank out superior “results”, time after time after time, with no break, no respite. And I expected that of myself, as well.

Because that’s what was done. That’s how things worked. And if I couldn’t do that, then I was clearly broken.

I spent a lot of time believing I was broken. Even before high school and college… back to the early days of not “getting it right”. Broken. I was broken.

And as adulthood encroached, with its requirements and expectations, and practically nothing on the horizon that appealed to queer little, autistic little, decided non-feminine little me… what was the point of going on? Seriously. What was the fucking point?

The closest I ever came to killing myself was at the end of my drinking, when I was scoping out the best place to end it all. I was working at a business 5 minutes from my home (for a sexual predator who literally salivated over “sexy” Black women who walked past his office windows)… and I would drive home for lunch most days. Because I could. There was a bend in the road that everybody went around too fast, and I was pretty sure that if I drifted into the oncoming lane during certain times of the day, I’d be killed on impact. Those were the days before airbags in cars, or regular seatbelt use. Oddly, I never thought about the other person I’d be hitting head-on. I didn’t care. I just wanted to end it all. To be done with everything. To stop the pain I was causing myself and others.

Because I believed it was all my fault. I was broken. There was no way out. So, I was going to do the world a favor and get myself out of the picture.

Fortunately, I quit drinking before I could see that through, and I got a lot of support from a 12-step group that focused my attention on my sobriety and getting my life together.

I wish I could say that I never thought about suicide again, but for 20+ years, it continued to be an issue with me. Until I hit menopause, SI was a regular occurrence, and it usually happened when I was in hormonal distress — just before starting my monthly cycle, when my body was completely out of whack and felt entirely at war with itself. As it turns out, one my ovaries was probably malformed and malfunctioning, which could have been why every other month, my life descended into a living hell for no discernable reason.

My SI also tended to coincide with the holidays, when I was in overload, anyway, what with the seasonal changes, the disruption to my regular routines, all the bright, flashing lights, the increased social demands, and extended visits to family — replete with opportunities to open up all those old seeping emotional wounds. Combine a holiday family visit with PMS (that sounds so inoculous, doesn’t it?), and you’d better believe I wanted to kill myself. Just end it. Put a cork back in the bottle and keep the evil genie from ever coming back out again.

I can’t even count the hours I spent howling in despair and anguish I experienced simply living life. I scared the shit out of my partner, that’s for sure. And it happened a number of times a year — usually around the holidays.

Looking back now, I have perspective. And I have understanding about why SI was such an issue for me. I understand the despair that drove me to want it all to End Right Now as a failure of pattern detection. I couldn’t see beyond my immediate excruciating pain, and I certainly couldn’t detect any possible alternatives to what I was experiencing on a regular basis:

  • Pressure to Perform
  • Recurrent failure to perform
  • Isolation
  • Feeling broken, rejected, useless
  • Not being able to do what I truly loved often enough to make life worth living
  • Impossible expectations to conform and live up to society’s expectation of how and what and who I “should” be
  • Exhaustion — bone-crushing exhaustion that never quit
  • Chronic pain that would subside but never went away 100%
  • Brain fog, confusion, etc. from my impacted and constantly beset state

There just didn’t seem to be any alternative. There was no way out. Nobody was giving me a break. Nobody was just letting me be. It was just one incessant series of demands after another, and I wasn’t keeping up. I wasn’t keeping pace. I was drowning in all the things I was doing wrong, and there was little to no relief in sight.

When I hear people talking about how extraordinary it is, that so many Autistic people take an early route out of life, I have to wonder why. Do they not get how hostile the world is to us? Do they not see how futile it all looks to so many of us? Do they not know how impossible it all is for some of us to sustain and maintain the semblances of “normalcy” that are required, these days? What’s so wonderful about this world, so filled with anger and hatred and hostility and — worst of all — lack of logic and reason, that’s so determined to crush us under its boot heel, that we’d go to great lengths to stick around?

Seriously, who thinks the standard-issue world is such a great place? Yes, there are some really wonderful things about this planet, but the way things are set up, all of it is slated for complete and total destruction, while the vast majority of people just sit around and wait for it to happen — or buy popcorn and find a seat to watch the show. It’s an embarrassment, that so many people think this human-created world is the pinnacle of human achievement, and most days I know for sure that I really don’t belong here.

So, what keeps me around? The fact that I can make my own life exactly the way I want it to be. I’ve worked overtime for years, to get to a position where I can have a life that makes room for me. I’ve had to funnel a vast amount of energy into it, and it takes time and great spirit to defend it and keep it going. But doing that gives me a focus for all the anguish and sadness that’s a constant undercurrent in my life. It fuels me and motivates me to do more, to be more, to create more — and to do that in the ways I see fit, regardless of what anybody else thinks.

But most of all, the thing that keeps me from ending it all is curiosity. I’m too inquisitive and imaginative, to believe that Things As They Are is how Things Will Always Be. That’s highly unlikely. And I’m curious to find out what will happen, and what I can take from it.

Also, I know how fickle I am.

Seriously, if I were to throw myself off a bridge, there’s a 98.7452% chance I’d change my mind on the way down and kill myself against my actual will. I came close to doing that, about 5 years ago — I had the spot picked out and I was getting ready to get in the car and drive out to a bridge in western Massachusetts and jump. But then I thought about what would probably happen. I’d make the hour-long drive, and I’d get up on the cement span, and as I fell, I’d remember something that made my life worth living, but by then it would be too late to do anything about it, and I’d miss out on the rest of the experiences I could have had.

So, I didn’t get in the car and drive out to the bridge. I stayed at home and wished I were dead, instead.

I’m still here, as you can tell.

And I have more to say about this. But right now, I need to go to work and find out what’s going to happen now in that swirling mess of neurotypical mediocrity.

Stoic on the Spectrum: Consider how quickly all things are dissolved and resolved

arrows in all directionsToday’s brief note comes from from Marcus Aurelius’ Meditations

IX. Consider how quickly all things are dissolved and resolved

… the bodies and substances themselves, into the matter and substance of the world: and their memories into the general age and time of the world. Consider the nature of all worldly sensible things; of those especially, which either ensnare by pleasure, or for their irksomeness are dreadful, or for their outward lustre and show are in great esteem and request, how vile and contemptible, how base and corruptible, how destitute of all true life and being they are.

So, things come and go. Pain comes and goes. Energy and vigor come and go.

One day, I’m fine. The next, I’m pretty much disabled. That, too, comes and goes. And there’s really no way to predict how things will be. I’ve tried. Oh, how I’ve tried. Doesn’t work. Best thing is to just stay loose and roll with it, so to speak.

“Consider the nature of all worldly sensible things…” All of them are ultimately resolved. They, too, shall pass. And if I wait for that to happen before I go on with my life, I’ll never get anything done. I won’t have a life worth living.

So, today, as my bones ache and I have less feeling and coordination in my arms than usual, I’m easing into my day… Doing my exercises that ease the pain and increase movement, so I can at least do the bare minimum… drinking plenty of water… getting some good food in me… doing less of a workout, this morning, but a workout nonetheless. And reading.

Reading things I love, that lift me up and brighten my day.

That’s certainly something.

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.

Here #IFixedIt – Ian McClure’s truly bizarre riff about #Autism

bored emoticon mehIt’s been a strange day. Apparently, an eminent psychologist went on about Autism in some pretty bizarre ways — all the more bizarre, because apparently he helps determine direction for agencies(?)

He repeatedly talks about “autism” like this — see the transcript here. And I couldn’t just sit back and not say anything. Seriously, conflating “autism” with environmental or sensory distress experienced by Autistic people is very mid-20th century. And it’s got to stop.

I’m on a “tear” about how we need to stop referring to environmental/sensory distress experienced by Autistic people as “Autism”. It’s not Autism. It’s the result of external circumstances hobbling us as Autistics.

Take a look at what he says below, and note just how nonsensical his ideas sound, when we consider them in the true light of the Autistic experience. Italic emphasis  is mine. For effect.

 

Ian McClure (IM): The question I am trying to ask here is does it help us when we are trying to work with autistic people in environmental or sensory distress to actually say maybe this person is emotionally stuck at the level of a two year old, just hold that (inaudible) in your head for a bit

IM: and ok so we are coming back in hopefully, we are coming back to this thing about egocentricity, now what I, I have been wondering about is, if we did think about autistic people in environmental or sensory distress as egocentric in the sense of a toddler and if we do remember this whole phenomenon of regression, emotional regression. That suggests that maybe there would be a process for a n autistic person in environmental or sensory distress, right at the beginning of their life, which was very stressful. Ok so I want you to just sort of entertain that idea in your head. We’ve got somebody that right at the beginning of their life, that something really stressful happened to them that means that they cannot move forwards from that emotional regression stage, from that egocentric phase, and so the question is what could that be? What I am wondering about is, is it possible, that autistic people who end up in environmental or sensory distress, in that first year of life, they are not much different to everybody else? Is that possible? And that what we have got is a situation where something happens in that first year of life which does then change the way that that infant is developing. Maybe environmental or sensory distress in a way is a social coordination disorder there’s something about the way that we coordinate ourselves socially, the cerebellum is doing that. We know that autistic people in environmental or sensory distress often have difficulties with these systems but we don’t really know why. Maybe it goes back again to something to do with maybe two different human species came together and what you’ve got is a genetic mess that isn’t quite right, that something is not quite right.

IM: So I am wondering about whether we should think about the idea of what I call a kind of internal exponential trauma caused by the sensory and the neurological challenges in the brain of the autistic person in environmental or sensory distress one of the reason I am so keen on this idea is, this idea which I think a lot of us have who work with autistic people in environmental or sensory distress, is that somewhere inside that person is a, dare I say it, normal person and this is the experience of parents, the desperation (inaudible) is I know there’s somebody in there if I could only just get at them and reach them. Now I know that that has been dissed a lot and people say oh you’ve got to move on from that, that’s just emotional, you know, it’s just the emotional (inaudible)

….

IM: Maybe we need to go right back to what people like Freud and Bleuler and Kraepelin and have a look again at what they were thinking because what happened in the 1950s was that whole thing got chucked out and DSM and so on and all these other things are just not interested in it. And the way it is going forward now is that the research that is being done by psychiatrists by academic psychiatirsts in places like London and America and stuff like that is very focused on looking for drugs. They are looking for drugs to answer these behavioural differences, and that is what they are doing they’ve got this magic bullet idea, if we can get a drug for that just think how much money we can make. And that’s a big motivator. And I know I am sounding very cynical but I’m afraid, you know, that’s going on.

IM: Ok so I am just going to summarise, In environmental or sensory distress my experiences as a clinician has been that the thing that is really challenging is this own agenda behaviour, that’s not in anyway minimising all the other stuff, but what it boils down to is time after time you know in the clinic this person is causing havoc because they won’t give up on their agenda. So then I started to think, could that be about egocentricity? And then I started to think, hmm, what about, what about something has gone wrong that has meant that that person has got stuck in the egocentric phase. Does that help us, think about it? what could that be? What could that be? If that was true, what could it be? We’ve got clues, we know that autistic people in environmental or sensory distress are in some way experiencing the world differently and that can be incredibly distressing for them. We don’t know a lot about it but we’ve got some clues and could that be enough as an internal stressor and are we having possibly a traumatic encounter there which is exponential because of the massive development that is taking place in the first year of life.

Anon (Name to be added if they give permission): My name is (deleted), I am a clinical psychologist and Ive spent most of my working life asking autistic people in environmental or sensory distress what they think and feel, I’m also neurodevelopmentally challenged myself and I really found thinking of myself as a different species and a genetic mess, I’m also a mother of a son who is a genetic mess, if we don’t have autistic people in environmental or sensory distress and people with dyspraxia and dyslexia and adhd in our society then it would be much less rich. The reason that those things were thrown out many many years ago is that they were wring. And to start to move back to things like refrigerator mother and prevention of environmental or sensory distress, I think is not appropriate.

(Lots of applause)

IM: Shall I respond?

IM: I never said anything about refrigerator mothers and I acknowledge that that was a dangerous area that went, you know, clearly wrong but I think it is great that I have had this response actually, because I think it is important to get a reaction like that and I’m pleased that you have reacted like that. All I am doing here is asking questions, I don’t know the answers to these questions. What I am trying to do is I am trying to make sure that we don’t get stuck in a silo mentality, I want us to keep our eyes open about environmental or sensory distress and I do not mean to cause any offence by saying the things I have said but it’s a free country, last time I checked it’s a free country and we are allowed to say what we think and I am basing this on my experience with my patients over twenty years so you know that is just my experience. I am worried that these people are being traumatised by something that is going on in side their minds, that’s all I’m trying to say to you, so thanks a lot (applause)

So, yeah… If you look at Autism just as something that occurs in the brain, you get these kinds of ideas.

But if you understand Autism as something that shapes your every experience in a physical, mental, emotional, and spiritual way (with an emphasis on the physical which can lead to a ton of distress), that changes it, doesn’t it?

It changes everything.

Which is where I’m hoping the Autism research community goes. Away from the “egocentricity” idea. Away from the “own agenda” concept. Away from the belief that meltdowns are “tantrums” which we choose to leverage to get our own way. “Creating havoc” and all that.

The good part is that people are speaking up about this.

The bad part, is that we have to.

 

Sickness and lameness and hindrance, oh my…

grid of four people rolling stones up hills
Just keep going. Just keep working.

My stoic meditation of the day comes from The Enchiridion By Epictetus

9. Sickness is a hindrance to the body, but not to your ability to choose, unless that is your choice. Lameness is a hindrance to the leg, but not to your ability to choose. Say this to yourself with regard to everything that happens, then you will see such obstacles as hindrances to something else, but not to yourself.

10. With every accident, ask yourself what abilities you have for making a proper use of it. If you see an attractive person, you will find that self-restraint is the ability you have against your desire. If you are in pain, you will find fortitude. If you hear unpleasant language, you will find patience. And thus habituated, the appearances of things will not hurry you away along with them.

Indeed. I tend to lose sight of the fact that all my sensitivities don’t prevent me from choosing what to do with my life, and finding ways to deal with them. The simple fact of my life, which is my guiding principle, is that if I can identify that something is a problem for me, and I know what alternative I want in its place, then it’s incumbent upon me to do something about it.

I’m pretty resourceful, when it comes down to it, so I can’t very well make excuses for my life going the way it has, when I’m actually capable of A) seeing when I’m going off the rails, and B) coming up with alternatives.

Now, certainly, it’s no fun to have to constantly navigate a world that’s designed for people completely unlike me. But one of the reasons I left my parents’ house and took off on my own, was precisely because I knew that out there in the world, I could fashion my own environment that suited me. I know what bothers me, I know what makes my life difficult. And with that knowledge, I can design a life that works for me.

Of course, not everything is going to be suited to my liking all the time. But so what? The times when things are extremely challenging, are the times when I build up strength. Provided I give myself time and space to recover and assimilate all the lessons, the challenges just make me stronger. More resourceful. More determined. Maybe it’s just my character. Or maybe it’s because of how I was raised. Whatever the reason, when I look back at the worst times I went through, those were the most valuable lessons.

In some cases, you get what you pay for. And I’ve paid dearly, I can tell you that.

It’s all been worth it. Some of my experiences have felt like they tore me to shreds, but you know what? I’m still here.

So there.

And I’m going to stick around. There is no way I’m going to succumb to the dire predictions that I’ll die 20 years earlier than my non-autistic peers. That’s just ridiculous. We get to choose what we do with ourselves, what choices we make, what direction we take. And if I choose to do things that I know are not good for me — like avoiding certain foods because of the textures, but not supplementing my diet in other ways, or like avoiding exercise because I don’t have the energy — I have only myself to thank for vitamin deficiencies or poor physical condition.

Some magical being in the ethers isn’t going to descend to earth and save me from myself. If there are things I have to do, because the laws of physics and human anatomy require them, then one way or another, I’ll do them. It’s my choice. And I have the capacity for reason, discernment, to find alternatives, if one way doesn’t work for me.

So, with that said, it’s time to get on with my day. I find out what the deal is with my job — new paths are being charted for us at work, and the direction we’re taking actually makes a whole lot of sense for me.

Maybe I don’t have to leave my job, after all… Even so, I have a video interview for another position on Monday. It’s all a dynamic process.

Of course it is.

It’s life.

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.