I probably need to get some medical help, but will it even matter? Should I even bother?

Run away! Run away!

Trigger Warning: I will seriously question the wisdom of sticking around in this world in the following post. You’ve been warned.

Oh great. Here we go. I’ve been feeling “off” for quite some time, now. Probably close to a year. My job was insanely busy, for about a year running. I was triple- and quadruple-booked in meetings, day after day after endless day, for months and months at a time, with a very rare 30-minute break every now and then.

My schedule was unreal. But that was the job. My boss’es schedule was like that. My coworkers’ schedules were like that. Everybody’s days were like that, on my team. At least we had jobs, right? And I was driving through on pure adrenaline and determination, the whole time. Just plain grit. Just buckling down and doing the job,  because we were so short-staffed and I was committed to holding up my end of things.

In all honesty, I really wasn’t holding up my end of things. I was attending a lot of meetings. Constant meetings. On the phone, mind you, not in person. That was one blessing. At the same time – and all you Autistic folks out there can relate – it was on the phone, and that was about the nearest thing to hell that I could ask for.

It’s bad enough being Autistic and having to be on the phone, but I also have auditory processing issues. I’ve never been diagnosed with any condition. All the tests come back saying my ears can hear just fine. But I’ve rarely been able to hear things clearly, the first time they’re said. Someone says one word, and I hear another. And then I have to ask for clarification. I ask them to repeat themselves. It’s like standard for me. I always have to ask people to repeat themselves. I can’t imagine how annoying it is for other people to have to say shit over and over with me, till I actually get it.

So, in addition to the non-stop work and thinking and processing and dealing with neurotypicals who care only about their own position (it’s never about the job) and being denied what I consider my basic human right to reach a flow state at least once a week (is it so much to ask?), I had to do it all on the phone.

Lovely.

And it was brutal. I was constantly pumping myself up to get going. Constantly staying on point. Constantly being on alert. And at the same time, my partner has been declining, physically and cognitively. So usually while I’ve been on the phone arguing with offshore managers about whether a job their team screwed up was due to a change in requirements or simply a lack of understanding of the basic requirements, I’ve been taking care of my partner, who is essentially bed-ridden (she can still go to the bathroom herself and feed herself, which is a major plus). And she’s often confused, frustrated, and angry. So, I’ve been juggling Hard Conversations at work with making meals and shuttling needed items to and from the upstairs from downstairs. 

Things have loosened up a bit, over the past months, since we got more help on the team, and I was able to offload a ton of meetings and tasks to another (hapless) coworker. But then we started remodeling our house, and the COVID-19 business kicked in. So, that was fun. We relocated to another place for a few months, while the house was worked on, which has been beautiful – such a lovely place to live for the time being. But managing the contractors, having a tree fall near the house (barely missed it – lucky for us), running interference with vendors who weren’t playing nice with our contractor, and making all these decisions about what needs to be put in place — and picking out stuff online and trying to get it shipped, when hardware and appliances that are supposed to show up on Monday so it can all be installed on Wednesday, suddenly won’t be delivered for another 6 weeks… well, that’s been fun.

And yeah. Running on adrenaline. While my partner calls to me from upstairs about how she needs her breakfast now, or she’s having a health crisis. Or she’s having a panic attack. Or she wants to just talk to me (why would anybody need to “just talk”? that’s puzzling). And I’m getting texted by someone about how something needs to be done, but it didn’t get done right. And oh, by the way, did you send out the check in the mail?

Pushing and pushing and just making it happen… that’s what I do. And I’ve been doing it. With surprisingly few meltdowns, I have to say.

But yeah, it wears thin.

And so have I, it seems. I’ve been feeling very lightheaded for weeks and months, now. My heart activity has been … interesting. Palpitations. Tightness. Feeling sick to my stomach and faint. Irregular heartbeat. I seldom go to sleep without my heart racing. I have to consciously slow it all down, which I can do.

And when I check my blood pressure, it’s usually low – the other day, it was 67/46. I know how to bring my BP up, so I’ve been doing my exercises to do that, but having a consistently low blood pressure (88/54 is another reading and I’m often around 95/65) gives me pause. It’s been even lower than usual. I have an enlarged heart, or so I’ve been told, so I wonder if that’s playing a role.

Okay, this is where the “female stuff” gets mentioned, so if you’re uncomfortable with it, you can scroll past the next few paragraphs. It’s not awful, but some people get squeamish, so you’ve been warned.

# Start of Female Stuff 

In addition, I’ve been having some spotting and cramping, despite being post-menopausal for nearly 10 years. The spotting only happened twice over the past month. I noticed a little bit of cramping, but I didn’t think much of it. Then I noticed the spotting. Not a lot, just a little. But still. That’s not supposed to happen. And the cramps are certainly not supposed to happen. But they’ve been there. I was thinking maybe they were constipation or related to my lower back pain, but these are definitely menstrual-like cramps. I had them intensely enough and long enough, that I know what they feel like. And that’s what menstrual cramps feel like.

Now, I started menopause about 10 years “ahead of schedule”, and they love to tell you that you run a greater risk of cancer or early death, if you are menopausal earlier than what’s usual. There’s precedent for early menopause in my family, so I never worried about it that much. But of course, now I’m flashing back on those conversations with “healthcare workers”, and it’s irritating.

Also, I’ve had a cervical polyp in the past, and I believe that caused me some cramping and spotting. It was benign. Sometimes women get these little “tags” of growth on their female plumbing, and it’s a simple thing to just reach up there and snip it out. Not painful at all, and the cramping and spotting stopped, right after I had that done.

So, this could be a polyp. No big deal. Or it could be something else. I’ve just been feeling so off, for months now… I honestly can’t tell what the hell is going on with me.

#End of Female Stuff

When I say off, I mean I’ve been feeling woozy and wiped out and feeling like I’m about to fall over, day after day. Exhaustion? Maybe. I mean, life is exhausting enough for me, without all this extra stuff, and there’s been a lot of extra stuff, lately. I know how to push through. I know how to keep going. I know how to prop myself up, so I don’t fall over. I know how to do a great impression of a highly functional individual who’s got it covered.

No need to worry about me! #IGotThis

That’s how we’re supposed to be, right? In America, you’re supposed to be positive and proactive and confident and bold. You can’t have misgivings. You have to always be ON, always be Convinced That We Will Prevail, No Matter What. It’s a sin, in this country, to have reservations, to doubt, to question, to not have faith. It’s anti-American blasphemy, and you’re sternly punished, anytime you show weakness or misgiving. So, despite having a distinct lack of all of the requisite attitudes, I’ve learned how to simulate all of that. Because it keeps people off my back, and I can just go about my business and do what needs to be done.

But feeling like shit, every waking moment of the day… well, that gets old, after a while. It’s kind of my default state, and I’m used to it. But this level of shitting-feeling has been noticeably higher over the past months. And now I have spotting and cramps on top of it.

So, what do I do?

I’m insatiable, when it comes to information, so I guess I’ll reach out and talk to someone. I’ll get on the phone with a TelaDoc later this week, when I’m away from my partner — we’re moving back to our house in a week, and I’m going back for a few days to get the house ready, before we completely move back in. Then I’ll be able to speak freely without worrying that she’s listening and I’ll then need to assauge an endless, relentless borderline-panic-attack that she can’t manage herself (story of my life). 

Based on that information, I’ll decide what to do from there.

But I have to admit I’m really torn about what I’ll do. The healthcare system and I are not on good terms. I’m a woman over 50, so I fit the profile of their standard-issue concept of a woman who’s just looking for attention. I’ve gotten that, tons of times, over very real concerns I had about health issues I was having – but nobody took very seriously, nobody explained well, and everyone just dismissed. They didn’t get it at all that I am both highly sensitive in some ways and not sensitive in others, so I have to have a professional opinion to help me make sense of what’s going on, so I don’t inadvertently die. I’ve been on the verge of pneumonia, as well as having an eardrum burst, because I couldn’t tell what was going on in my body, so there’s precedent.

In much larger ways, I’ve been so close to losing everything – and I mean everything – because of health issues that needed to be managed, that nobody took seriously. At all. I had to fight, tooth and nail, to find someone to help me, and then insurance wouldn’t cover it, but I didn’t care, so I nearly bankrupted myself getting help. Same story as a lot of people. And yet, here we are in 21st Century America… Why am I surprised? 

But I digress.

Anyway, I’m thinking through my algorithmic process for how I’ll handle things. Of course, without the correct information, I can’t make a firm decision, but I’m doing heuristic analysis at a high level, just considering my options. I have to think it all through carefully, because I’m the sole caregiver for my partner, and she is Extremely High Risk for COVID-19, so I have to add in an extra layer of caution in Everything I Do.

How will I handle getting tests done, if they’re needed? How will I get to the hospital? How will I tell my partner?

How will I deal with the results? If they’re fine, do I just stop thinking about it, and pretend it’s not an issue? If they’re not good, do I go with invasive procedures, or do I just settle into making the most of whatever time I have left?

That whole question of whether to pursue extreme measures or not is a big concern for me. I’m not sure how worth it, it would be. For others, sure! They love me and depend on me! No shit. I’m a fucking asset to the world – no joke. I’ve turned becoming indispensable into an art and a science, and there are so many people who love me. But what’s in it for me? Everyone asks way more from me than they give back. And I seem to be surrounded by people who are ninja-level Takers, but haven’t the faintest idea how to give unconditionally with an open heart. And anyway, they’re not interested.

Nobody is.

All anybody cares about is themself and their own corner of the world. There are some who think they care about others, and maybe they do on some level, but ultimately, everybody’s just trying to stay alive, while the world burns down around us and we do less than nothing to stop it.

All of our “leaders” are killing us. They just are. The companies that crank out all that trash of “packaging” that is now settling to the bottom of the ocean… the manufacturers who over-produce all kinds of shit we will never need and rarely use, just because they can, and because it will line their pockets… the community and government managers (I won’t say “leaders”) who refuse to put any regulations in place to protect us from those predatory manufacturers and marketers because it might impact the economy… the people in charge of police forces who just carry on as they always have, no surprises there… and the people telling the rest of us that the police forces can or will ever change, which I have no confidence can or will happen.

We have been well and truly betrayed by everyone who holds any form of power, and they show absolutely no sign of acting in the best interests of us or our planet. They are legitimately deficient in logic, reason, compassion, and conscience, and they have no accountability to anything or anyone. We wouldn’t be in this situation, if that weren’t the case. If any of them cared enough to actually act – if they cared more about principles and the survival of others – they’d take action. But they don’t. So they won’t. And here we are.

So, if I get bad news, why would I stick around? Why would I bother making myself even sicker, in hopes of prolonging the agony of being in the world that neurotypical and autistic assholes have created. Whatever your neurodiverse location on the grand spectrum, assholes are assholes, and their numbers are legion.

Why would I subject myself to the violation of the American healthcare system, which has rarely done me much good, anyway, and has ridiculed and dismissed me and my pain and discomfort time after time after time? Why would I fucking bother? If I have to leave, I might as well do it with my dignity intact, you know?

Plus, prolonging the agony of being around all this… I just don’t know. It’s too much. All of it. It’s relentless. It never stops. People are assholes.  Uncompassionate, self-centered, planet-killing assholes. If they really cared at all, and they had any intention of doing what’s really right for the planet, they would walk way from all the plastic-using, manufacturing-produced, poison-infused shit that props up our modern life, and live off the land, off the grid, with zero impact. Quit driving the fucking Priuses and cars in general. Quit buying shit on Amazon that’s so wasteful and exploitive of fucking everything you can think of.

But nobody wants to do that. It wouldn’t be comfortable. It would be inconvenient. And we need our retail therapy. We need our … stuff. Yeah, you can have it all. But you have to do it differently. Very, very differently. And unless you’re 100% not impacting the planet — or other people — negatively, you’re still a problem. You’re a liability and a threat. It’s pretty binary, actually. Either you’re a problem for the planet, or you’re not. I don’t know of anyone who’s NOT. Including me.

Hell, just by typing this on my ancient laptop that’s sucking electricity, I’m a problem. I now sit at a table that was made from artificial materials and wood from some hapless tree… with a lamp that’s also sucking electricity… in a house that’s built out of all kinds of shit that’s either toxic itself or was manufactured with highly toxic processes…  I’m a problem. I know that. And all my online venting is just adding to the burden I’m placing on the planet. Yay, me…

So, why stick around in this failed experiment? If I’m going to go, I might as well do it on my terms. Why deal with the medical establishment that practices medicine (and has yet to master it) and uses us all as test cases? I know, I know… they can deal with extreme cases, sometimes. And their extreme measures can sometimes be successful (I’ve seen the promotional ads with smiling survivors). But I’m feeling a bit like Planet Earth — all used up, abused, neglected, taken advantage of by uncaring and unfeeling narcissists. And since I can’t do the wildfire, earthquake or tsunami thing, all I can really do is determine my own fate. Kind of.

All that being said, I do think there are many other things I can do for myself to help my situation. Really take care of myself and what my body and mind need. Quit worrying about shit. Get more exercise. Eat right. Focus on what’s right in front of me. Mind my own business. Get on with it. And see what other options I have that don’t involve anything that doesn’t have anything to do with what I love and value in the world.

I don’t know exactly what’s going on with my health, and I can’t draw any conclusions till I get some more info – if I ever do.

In the meantime, I’ll just focus on what’s in front of me. I feel like crap, so what else is new?

When have I ever not felt like crap?

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

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.

When it all comes together… eventually

Well, that only took 15 years…

I’ve been working on a set of ideas — all related, each with great potential — for over 15 years.

And finally it’s all coming together.

That’s one of the reasons I haven’t been blogging on here a whole lot. Finally… finally… things have gelled with me enough to actually take shape in a form that actually works.

I know I’m being cryptic (and I have to be, because I’m in “stealth mode” with this project), but basically, I’ve written and conceptualized a whole lot of stuff over the past 15 years that I can now actually put into action.

The ideas all work together. And they’re useful to a whole lot of people. And I have access to the technology and skill (and customers) to make this fly.

And that’s how it goes with us Autistic folks, sometimes. We’ll have all these great ideas… very detailed, thorough, grounded, practical, transcendental… and it can take us years and years to finally fit them all together into a way of being, working, thinking, living, that’s superlative. Super fantastic. Transcendental.

But it takes time with us. And we have to have the right conditions to work under. If we don’t have the time and proper conditions, it can kill off our ideas, our drive, our ability to think. Sometimes it kills us, period. However, if we’re given the right support and the right environment… well, the sky’s the limit.

Yeah… I’m not sure “support” is the word I’m looking for. It makes us sound dependent. Needy. Like we can’t do it on our own.

Look, we Autistic folks can do a vast amount of things on our own. If the world isn’t constantly trying to kill us. If it’s not dead-set on destroying us, because we’re different.

I was fortunate to grow up in an Autistic household, surrounded by Autistic friends and neighbors. It wasn’t “weird”. It was how we were. And neurotypical people were the “weird” ones. I’m lucky that way. I grew up knowing how to love my differences and let my freak flag wave wild and high. I also didn’t give a good goddamn what anybody else thought about me, my ideas, or what I did with my life. So I had that going for me, as well.

But I know an awful lot of Autistic folks get stuck growing up in the mainstream, surrounded by people who are bound and determined to make them pay dearly for being different. That’s pretty sucktastic. And as soon as I got away from my family and the area where I grew up, I ended up in that world, too. It can be awful. So, when I talk about things being sucktastic, I know whereof I speak.

Anyway, I have to get back to working on my Grand Plan (I love planning!), so I’ll cut this short.

Bottom line is, with Autistic folks, it can take us a long time to develop… ourselves, our skills, our knowledge, our expertise, our understanding of the world. But when we do… Look out. We are a force to be reckoned with.

Okay, that’s enough for today. Now, go out there and do some good in the world for yourself and others.

The beginning of suffering is the giving of f*cks

What a horrible summer it’s been. I don’t know what’s worse: the heat, the long daylight hours, the humidity, the constant rain, my lack of exercise, my lack of interest in doing much of anything other than my own thing, the hyper-political pointlessness at work, or my general despair about anything ever getting better.

Good gawd. I’ve been in a terrible place, on and off, for months, now. I’m surprised I’ve gotten anything done.

And yet… I have. And for good reason. I can turn my laser focus to the positives and block out all the negatives, and I can continue apace, “killing it” in a manner of speaking, although everything around me is going to shit, and nobody seems capable of stopping the downward slide.

I was just thinking about this yesterday… how just about every job I’ve ever had has sucked in a very big way. I mean, just sucked. People undermining me. Bosses working against me. Power struggles. Office politics biting me in the ass (there’s an image for you – you’re welcome).  Terrible working conditions (too much ambient noise / light / distraction). Being passed over for promotions. Being shut out of important conversations. Being shut out, period, by politically connected people who have used me as a bridge to overcome their own differences (I work it out between them, and then they buddy-up and push me out of the way).

It’s all happening again. So, fine. Screw it.

The chief problem in all of this, is that I give a damn. I give a f*ck. I really do. I care about other people and how I relate to them. I try my best. But they can’t be bothered to reciprocate. Or they take advantage, because they’re weak and manipulative. And so I end up getting the proverbial short end of the stick.

I care. I get involved. I give a f*ck.

Note to self – stop doing that.

Truth to tell, most of what goes on in the day-to-day has absolutely nothing to do with me or the things that matter most to me. And I’m tired of playing along.  I’m tired of the games. The bullying. The posturing. The going behind my back to maneuver around me. Yah, I’m done with that.

Everybody else who wants to squander their life force on that… be my guest. But I won’t be joining you.

Of course, that’s easy for me to say from the comfort and safety of my own home. When I’m in the thick of it, with my hyper-empathic self, it’s a whole lot more difficult to block it all out. And honestly, I worry about it all hurting my ability to do my job and keep the money coming in. I need a paycheck. I have a household to support. Yeah, The Man has me over a barrel, that’s for sure.

But I probably make it worse for myself than need be. I’m way too hard on myself. Much, much harder on myself than anybody else is. Heck, everybody else seems to think I’m close to perfect (ha ha ha, how hilarious). At least, that’s what they tell me. How little they know… Oh, how little they know…

Well, anyway, it’s Sunday. I have stuff I want to do, including driving out to the country to look at the fall colors. My partner and I are headed west with her new scooter, so she can join me on walks and sightseeing. We actually went shopping together for the first time in a long time on Friday night. She on her scooter, I walking at an actually comfortable pace. Pretty magical.

Eh, there’s to much to say to fit in one blog post. I need a walk. Need to air myself out. Time to don some outside clothes and head for the back roads.

Later, all…

When being #Autistic was a very, very good thing

I wasn’t alone in my wonder at the wonder of it all

It’s been an incredibly busy past 4 weeks… or has it been 6? Business travel, deadlines at work, projects not turning out the way they should, people making excuses, left and right, and the very people who are making a mess of things taking control of all the projects.

Ah, me… I’m at a loss, as are many of my co-workers. It’s incredibly dispiriting. But at least I’m not alone in my despair. I have plenty of company (fortunately or unfortunately).

One of the benefits of being too busy to think about much, is that I find out what matters most to me. Because that’s the stuff that bubbles to the top of my thought process. That’s the stuff that works it way out, like rocks emerging from the soil in the New England spring. All the rest of the stuff I’ve been thinking about is apparently compost… it will go through its decomposition and melt back into the background of my life. But some things have “sticking power” and won’t go away.

It’s those things that I’ve been thinking about.

So, of course I’ve been thinking a lot about my childhood and how it set me apart. When I was younger, I was tempted to believe that my lot was terrible, painful, horrible. That it was too punishing for words, and oh, how I suffered. It’s true. I did suffer. But that’s just what happens, sometimes, and I’m through with thinking that suffering is a sign of aberration, of something being amiss. Nope, sometimes that’s just how things go. And the magical part of it is, I get through it. All of it. Just because it’s uncomfortable, even painful, doesn’t mean it’s necessarily a bad thing. Because, after more than half a century on the earth, I now realize that pain is very much a part of life — but suffering is something I make worse, myself. By judging and resisting that pain.

It’s much more productive to take a Meh attitude — a Meh-titude, if you will — and get on with it. Get my mind off the anguish (much of which I’m causing myself) and just get on with living.

My childhood, in retrospect, really worked in my favor. It prepared me for the world as an adult. It made me into the person I was. And it was full of wonder… precisely because I grew up in an autistic household which absolutely, positively accepted my Autistic traits for what they were and revelled in them, rather than pathologizing them.

Don’t get me wrong. It wasn’t all delight and bliss. My childhood was, in fact, extremely difficult, both inside and outside the home. My family got a lot of things really wrong. But the parts that my family got right, they got really right. And I’m a better person for it. So many of the “disordered” behaviors — repetitive motions, echolalia, alternative play styles, talking a “blue streak” about passions, having passionately focused interests at all, even my frantic energy — they were all recognized and welcomed as the things that made me what I was.

My Mom, in fact, loves to talk with exuberance about so many of my behaviors that qualify me as Autistic. Singing a song to myself over and over and over for days at a time. Dismantling a toy vacuum cleaner that was given to me, so I could play with it my own way. Immersing myself in Native American studies, learning about trees, animal tracks, animal scat. Talking, talking, talking some more about the things I cared so deeply about. And running wild, all over the place, making my Mom nervous, but never actually getting hurt.

My parents remember those things as wonderful. Because they were me. They could also relate. And for all the things I did wrong and was punished for, at least — at the core — they recognized and loved me for who I was. Because that was me. And they’d both been punished enough as kids for their own Autistic traits, that they never wanted to do that to their own kids.

That’s one thing they certainly got right.

And I’m glad I can see it now. Because for years, I got so hung up on the things they got wrong, for their shortcomings, their failings, their neglect and abuse, that I missed the ways they were so good for me, so healthy, so helpful and supportive. And although I’m still at odds with the community of my upbringing (they still seem a bit cultish to me, to be honest), I can still see there was a lot of good in it for me, that helped make me who and how I am.

It helped make me healthily Autistic, in so many ways. So much so, that I have to just look at people (or shake my head when I’m online) when they talk about Autism only being a problem. Or only a disorder. It can be problematic. It can be disordering, even disabling. But in and of itself, Autism is not the enemy. And it’s not only one thing.

It’s not only one thing at all.

It’s many things. And we can choose for ourselves what we’ll do with the full spectrum of experiences. That much is very clear to me.

With that being said, it’s a gorgeous day. I have an all-day conference call I need to attend — and no, I’m not looking forward to it. It’s part of the job. It doesn’t happen every day. I’ll survive. Plus, I get to work from home while I’m doing it, and I can sit out on my deck and enjoy the breeze and sunshine, which is wonderful and delicious today. There are worse ways to make a living, that’s for sure.

So, off I go…

Something to show for it all

I’ve been thinking a lot about my situation, lately, and the thoughts haven’t all been very encouraging. Basically, I feel as though I’ve spent 25 years building up my skills, gathering experience, learning some really tough lessons along the way… only to be pushed out of the way for political reasons, or by people who want what I have, but haven’t actually earned it.

I know, I’m being incredibly unrealistic in this respect, wanting to see some sort of payoff for all the years of investment and dedication. That’s not how the world works, I hear you say? Yeah, well, in some parts of the world it is.

And I’m not currently situated in that part of the world.

I suppose this is just what happens, when you’ve been around for a while. Eventually, people who understand what you do and get it, “age out” and move on. I’m really noticing that, these days, because the people who really understand me and realize what it is that I do are 10-15 years older than me. And they’re ramping up their exits from the world I inhabit. Retiring. Or dying. Disappearing, in one way or another. So, my allies and advocates are getting fewer and farther between. Which leaves me standing alone in the midst of the crowd, wondering if everybody realizes just how mediocre everything has become…

I can’t shake this horrible feeling of having wasted so many of my years. After all the work, after all the dedication, after all the determination, what do I have to show for it? I can’t go back to school, because while I have the money, I don’t have the time or the bandwidth. I’ve tried it. I can’t manage an academic course load of any size while I’m working full-time. My partner’s health is declining, and it just feels like I’m biding my time till she worsens and passes away — which is a terrible way to feel, when it’s the love of your life. I don’t know what’s happening with work, or what I even want to happen. I would sorely love to get out of technology, but they money’s too good, and I’ve sunk too many years into that activity to move into another space. I have some ideas about how to move forward, but nothing is very clear, right now.

Well, anyway, the world is full of opportunities, and if I don’t see them, that’s on me. I just get a little tired of doing so much work and not having much to show for it. Or maybe I’m just looking for the wrong payoffs. Maybe I’m casting too wide a net and expecting too much from my efforts. I tend to do that. I have plenty of ideas in my mind about how things should be and what should come of them, but I’m not always tapped in to the reality of how things truly work.

And maybe I’ve been seeing payoffs all along, I just haven’t realized it, because I’m so focused on doing and doing and doing… always moving, always making, always creating… the point is the journey, not the destination, with me. But every now and then, I stop and look around and wonder what in heaven’s name I’m actually working towards.

I’m in a transition phase, that’s for sure. I work with people who actively try to thwart what I’m doing, who hide their agendas from me, and who take credit for my work. They don’t know what they’re doing, actually, and they don’t listen to my guidance. They’re too busy finding out for themselves. I’m superfluous. Especially since they believe that nothing now is the same as it was 25 years ago. I’m not going to change them, so I need to amend my own point of view and/or my own situation.

That being said, I need to go out for a walk. I made a point of bringing walking clothes with me, so I can stretch my legs. It’s 3 hours ahead of my usual time, and I have a few hours before I have to start my official day. I’ve got lots of room to roam, which is good. And I can think about how I’ll spend my afternoon on Friday, since I’ll have a lot of time to spend after the conference is over. It’ll be Friday afternoon, back East. Nobody will be working or emailing me. I’ll be able to explore and take in some museums, I think. There are lots of museums nearby.

Anyway, enough typing. Enough stewing. I’m in limbo, not sure where I belong, not sure where I’m going. Just floating, trying to keep myself upright in the roiling sea. Unmoored. I’m unmoored. But I can’t think about that now. I need a walk.

About that Walk…

I was supposed to walk, this past weekend. Every single day of my three-day weekend. It was supposed to be glorious. Delightful. Indulgent. Quelle luxe! And inevitable.

That’s what I do on long weekends, when everybody’s off work on a Monday, and things are quiet around town. Families head north to the lakes and mountains for the federal holiday. Those who stay behind either head out to Lowes and Home Depot to pick up supplies for their gardening and home improvement projects, or they throw the kayaks on the roof racks of their SUVs and head to the nearest rivers. They run. Cycle. Hop on their Harleys and roar down the open roads. People scatter on those weekends, and that keeps me close to home.

I have my walking routine down, based on years of experience. Preparation is simple, straightforward. Practical. I change into my favorite walking clothes: a pair of baggy, ripped-up cargo shorts with enough pockets to comfortably hold keys and phone and tissues and earbuds and bug netting and a few pieces of candy… with a soft blue-green t-shirt worn over an even softer white undershirt… all of this over a comfortable sports bra and underwear that won’t chafe or bind. I hang a medical alert tag around my neck to make sure folks know whom to call if they find me collapsed by the side of the road, and there’s my trusty baseball cap pulled snugly on my head. And — at last — my sandals. It’s now warm enough to trade socks and lace-up walking shoes for those sturdy vibram soles strapped to my bare feet with velcro, leather, and some sort of finely netted fabric. I always know that summer is here when I can pull on my sandals. And I rejoice. I grab an apple from the fruit bowl, wash and wipe it dry, grab my small set of keys and maybe a piece of candy or gum for later, and head for the back roads.

I had my routes all mapped out, for the three days. Nothing fancy. Just the usual. With extra time to do the full circuit. I’d head down the road for a mile, past the “McMansions” built on the high hill facing a breathtaking view to the west… careful round the bend at the convergence of three roads where people always take the turn too quickly… walk another two miles under thickening forest… turn left again and walk a quarter mile past the mix of old and new houses, farms and single-family dwellings with their neatly trimmed lawns… up a slight incline, across the secondary road that’s full of motorcycles and bicyclists when the weather is nice… trudge past the town line sign… and disappear down the horse-farm-lined road, where people are too busy working on their gardens or cars or property to notice me passing by. At the stop sign where the road “T”ed into another, I’d about-face and head home. Or I’d get adventurous, take a right and keep going, till so much time had passed that I had to turn around to get home before dark.

At last, after weeks of overwork hunched over a laptop for 10 hours at a stretch, I had enough time of my own to extend my route into an extended adventure — to find out what’s around the corner that’s normally my turnaround point. Enough time to keep going. Keep walking. Sunglasses would block the sun. A baseball cap would shade my eyes and keep the bugs off. And if the bugs got to be too much, I’d have my netting to pull on over my cap and at least keep them off my face and out of my nose and ears. I had three days off work. Time to rest. Time to relax. Time to walk.

Disappearing that way on weekends is one of the things that makes my weeks tolerable. It dissolves the work-week like nothing else. Walking. Just walking. Doing nothing “productive”. Not talking to anyone on my phone, not listening to music, not planning or executing or planning to execute. Not even dictating ideas that came to me along the way for use later on. Barely interacting with people as I passed. Socially isolated from passers-by in my apparent mission to Get Somewhere Soon.

My own little 21st Century heresy. Delicious.

I had it all planned.

And I almost made it.

Except, I didn’t.

Saturday morning found me gardening. The weather was perfect: cool and clear, with a breeze to keep the mosquitoes at bay. Originally, I thought I’d just stop by my community garden for a solitary, contemplative hour. I’d make sure the peas and beans were up, weed a little around the peppers and tomatoes, water the celery, then head home for a shower and a walk. I could do my errands later, after I got back from the road.

As it turned out, other gardeners were tending their plots at the shared space. So, of course we had to talk. Or rather, they had to talk, and I decided to oblige them. That was fine. They all seemed nice enough, and they needed to get to know me. It always surprises me when other people want that. Isn’t it obvious, I’m a wonderful, conscientious person who’s comfortable letting other people be who they are? Is it so hard to tell that I’m generous of spirit and non-judgmental, and people can relax around me, even if they’re not on their best behavior?

Apparently not. And it exhausts me, all these prerequisites for social interaction, as though any of us has the right to condemn another person for a quirk we don’t understand. To my Autistic mind, we should all simply let each other be, give each other space to be who and what we are, provided that we’re not harming anyone else. I don’t need other people’s approval, but others clearly need mine, and it’s so tiring, to convince them that either they already have it, or they really don’t need it from me, to begin with.

What is up with that? It makes no sense.

Figuring people out is an experience in extremes for me. Either I fail fantastically or get it right without even trying. The times when I fail, I am completely clueless about facial expressions, voice inflection, hints and mentions. I don’t pick up on conversational prompts, where I’m supposed to follow a statement with a question. If someone makes a statement, say, “It’s a beautiful day!”, then they make a statement. If it’s true, then no further discussion is needed. We’ve established it’s a beautiful day. And we can move on. To things like practical tips for keeping moths and slugs off my new plantings.

For that matter, I often don’t understand why people even bother stating the obvious. It’s confusing for me. Of course it’s a beautiful day! Water is wet. Wind blows. The earth spins. Big deal. Why in heaven’s name are they so excited about announcing the obvious? Then I have to remind myself that they’re probably socially insecure and they’re searching desperately for a topic of conversation that’s neutral, safe, non-controversial. So they can talk. So their voice vibrates their vocal chords, which stimulates their vagus nerve and soothes their fight-flight response. Some people have to talk, or they quiver with fear. I understand what it’s like to be constantly shaken, so I accommodate their need. And I convince myself to respond “Oh, yes! Just lovely! We’re so fortunate!” so we can have a few minutes of neutral sharing of something positive… and get on with our gardening.

Then again, I can sometimes pick up on other people’s natures right off, with that Autistic “sixth sense” that some of us have. I notice so much, at times, I don’t need to talk myself through the rationale of responding to inane observations. I don’t need to be psychic. Body language, pacing of words, shifting of weight, loudness of voice, personal space, facial expressions, eye contact, topics of conversation… it tells me more about them, than they probably want me to know. It comes in handy — and it sure would have helped, 40-some years ago when I was still learning.

They say Autistic people can’t “read” others. We have communication issues which are the most defining feature of Autism, they claim. Plain and simple.

I say, social interaction is never plain and simple. It’s an overwhelming embarrassment of riches for people like me — there’s so much personal / impersonal data to parse, and there are so many disconnects between what I observe and what people say it means about them, who can make sense of it all? If people simply acted and didn’t provide a running commentary about how they want to be perceived, it would be so much simpler.

So much simpler.

But nah – that wasn’t happening last Saturday morning. And four hours after I arrived, I was exhausted. I’d gotten to know seven of my co-gardeners, heard all about a dispute with the head gardener that one gentleman still resented, and I’d gotten a thorough introduction to the insecure overcompensation of the wife of the family who had the plot beside mine. All while, I did my best neurotypical impression — pro-active, friendly, outgoing, secure, experienced, invested in the community. Gung ho. I know how to do that. I was raised with community and gardening. I do an excellent impression of a seasoned, connected, all-organic caretaker of the earth.

And no one can hear me scream.

Sigh.

So much for my morning.

I walked out of the garden in a kind of stagger. It caught me as soon as I was past the garden gate and was able to drop the making act. The sun was hot. The mosquitoes were swarming. My head was swimming with all the interaction, along with a nagging sense that I’d said a few things wrong to people. Their intermittent sidelong looks told me I was veering off course, but damned if I could tell what I’d said or done that warranted the stink-eye. My mouth just kept going. Whatever you do, I tell myself often. Just stay in character. Carry on as though it’s all completely normal, and they’ll follow your lead. Just keep on keeping on. And I did. Like I usually do. Until I can’t.

Fortunately, I cleared the garden gate before I imploded. Lucky. Practiced. Shaking.

I drove home slowly, my head spinning, hands shaking, taking the long way back to avoid having to turn across dangerous lanes of oncoming traffic. No way could I go for my long road trek in this condition. Not on the back roads that are full of cyclists and power-walkers and drivers taking their classic convertibles for a spin while the weather is perfect. I’d have to have my wits about me, to get far enough down the road to disappear. And that wasn’t happening.

Not yet.

Run the errands. Eat lunch. Nap. I’ll walk later. That’s what I promised myself. And that’s what I did. Mostly. Mailed the package at the post office. Took the trash to the dump. Picked up some food at the farm stand down the road. Put stuff away around the house. Ate my lunch. Took my shower, then my nap.

But when I woke up, I was still shaky, and I just didn’t feel like going out on the roads. Not so late in the afternoon, when all the bugs were starting to come out en force. Bicyclists. Walkers. Joggers — sorry, runners. Drivers. And bugs.

No thank you. Tomorrow. I’d do it tomorrow, I promised myself.

And that’s what I’ve promised myself for weeks and months, now. I’ll take my walk after I get everything else done that needs doing. I’ll get out on the roads for a leisurely roam, once things are put in order at home. I want to. I really, really want to. With all my heart.

But it never seems to happen. At least, not the way I want, or even plan. The rest of my life demands my attention. Things have to get done, and if I don’t do them, no one else will. I don’t have the energy to explain to people how to do them properly — shopping and cooking and cleaning and gardening and making repairs around the house — and cleaning up after them is more tiring than doing those things myself. I’m tired, so tired, from the week’s work that’s so social, so “engaging”. I’m tired from keeping up, from working at not lagging, from all the role-playing and forced positivity that others reward so well. It’s the price I pay for inclusion. I pay the price directly, while it costs others indirectly, with my reduced ability to pretty much deal with anything. Anything at all.

Walking far enough to disappear… well, that’s become a luxury that my stingy, obligatory life doesn’t want to make room for, these days. Every now and then, I manage it… just a quick 20-minute walk in the morning, or a 10-minute stroll around the parking lot at work. But those long, meandering saunters… who knows when I’ll be able to do them next?

Something else will have to give, and that something shouldn’t necessarily be me. I’ll figure something out, of course. I always do.

If I can pass as neurotypical, I can do just about anything.

Sharing: Why IQ scores are erroneous for autistic people

Sharing from Redefining Normal: A Young Women’s Journey with Autsm

When it comes to measuring the capabilities and challenges of autistic children and adults, IQ is one of the main measures that is employed.  However, there are some reasons why traditional IQ tests are not the most accurate ways in understanding the full scope of individuals on the spectrum.  For label-obsessed neurotypicals, these tests can provide explanation in a simplistic matter in understanding the capabilities and challenges for those on the spectrum.  However for the autistic community, these tests can be a disservice especially when it comes to educational placement and provision of services. It is with this post, I will discuss some of the flaws or shortcomings of traditional IQ tests.

Read the rest here: Redefining Normal: A Young Women’s Journey with Autism

Six reasons I frequently end up in bad relationships

I just read a great post about Gut Instincts and Autistics getting bullied or taken advantage of by people. This post is an expansion on what I commented there.

I’ve been in bad relationships (either intimate ones or friendships or working relationships) that really took a toll on my standing in life. At times, they were emotionally abusive and set me back that way, but more often, they reflected poorly on me in the eyes of others, and that undermined my reputation with other people. They took me for a fool and dismissed me in untold ways.

That can be an even bigger problem than self-esteem or self-perception issues. You can always fake your way through crappy self-esteem. But if you’re not esteemed by others, then the problems are even worse.

Anyway, I’ve thought a lot about this over the course of the past years of coming to terms with being Autistic. And I’ve realized there are some really compelling reasons I find myself in (or actively seek out) bad / abusive / challenging relationships. Some other reasons I’ve done that over the years are:

1. Alexithymia – I can’t tell how I feel about a situation. I literally can’t tell how I feel about a person and how they’re treating me. If I don’t know they’re being mean to me, how can I address it? How can I learn to recognize their behavior as abusive or negative? How can I ever hope to defend myself? Fortunately, being clueless about the harm actually protects me from it. For example, if someone insults me in a language I don’t know, I’m not going to be hurt. At all. I don’t know they were being nasty, so … meh.

2. Slow processing speed – I’m often too busy parsing the environmental cues to realize someone’s yelling at me all the time. This is a real thing with me. People, I literally don’t have the bandwidth to manage all the sensory input — the lights overhead, the feel of a breeze on my arm, the scratchy seams in my shirt, the background noise of people talking or moving stuff around or making the floor vibrate when they walk by — to “get” that people are making fun of me or getting short with me. I’m usually just barely keeping up, so by the time it sinks in that someone’s being mean to me, the conversation / situation has moved on. La la.

3. Auditory processing issues – I often can’t tell right away that someone is being mean to me, because I can’t actually hear everything they’re saying to me. Again, it’s like someone swearing at me and calling me terrible names in another language, when every other word drops out of their sentence. I sorta-kinda get that they’re upset, but I can’t tell what they’re going on about. So, I generally ignore that sort of thing. It’s like when a friend of mine (who’s deaf in one ear) decides she’s had enough of people and she lies down on the side of her “good ear” (as she calls it). She effectively blocks out the rest of the world, and she can rest.

4. Memory issues – This is a huge factor. I don’t have great short-term working memory (I’ve been tested, and it sucks), so a lot of stuff just gets forgotten… sometimes before it can even register. My slow processing speed makes things register later, while my auditory processing issues only allows some stuff to get through. And then, either the situation evolves to something completely different, or I forget the details of what was said or done, and life goes on as it has been. On good days, I’m blissfully unaware that people are acting terribly towards me. On bad days, I’m like, “What just happened?” When my memory is particularly bad (when I’m tired or agitated or overwhelmed by everything else), I’m lucky if I can remember that something actually did happen. It’s not nearly as awful as it sounds. Believe me, much of what happens in my relating with other people isn’t worth remembering.

5. Being yelled at and treated badly wakes me up – I often feel sluggish and brain-foggy, and that makes me feel terrible about myself. But when someone is being mean to me, it makes me more alert. Even if the circumstances are hurtful, at least I feel like I’m awake and I feel like “myself”. So, it doesn’t seem so awful. It actually feels engaging. Of course, the standard-issue position on being yelled at is, It’s Terrible And Should Never Happen – If It’s Happening, Make It Stop. But in my case, being yelled at doesn’t always actually hurt me. Sometimes it wakes me up in important ways.

6. Logic, logic, logic – I tend to click into logical mode, in challenging situations, so I don’t really feel emotionally impacted, every single time. Sometimes I am, but not always. Sometimes it’s just an objective thing that happens, and I don’t get emotional about it. Of course, other times I do. It’s variable. But when I am really hurt by something that’s said to me, logic comes to the rescue again. Objectively speaking, I’m a wonderful person with so much to offer. I’ve been told that often enough by people I trust, that I’m inclined to believe it. My sample size is big enough to be statistically viable. So there. If someone is being mean to me, I can be objectively certain that it’s about them, not about me. And I can move on without taking it personally.

On the whole, I think the mental health / relationship standards that apply to the general population don’t necessarily apply to me. Stuff that impacts others, doesn’t impact me the same way. Sure, it would be great to not be abused by the people I consider friends, but people are people, and frankly, I often can’t tell if people are actually being mean to me, or not. If I can’t detect it, it doesn’t affect me, so it’s far less of a tragedy for me than it is for others who are deeply impacted.

Maybe I’m sounding all denial-y, but that’s how I see it. That’s my experience. I’m still here, I have a really positive self-image, I’m able to care for and protect myself, and I’m living a far better life (for myself) than I ever dreamed possible. I’ve somewhat figured out — from experience — how to spot “problem people” and avoid them. But mostly, I avoid people when I can, because it’s so exhausting to have to figure everyone out, always on the lookout for danger signs, and constantly weighing all the variables and considerations. Sheesh, who has the time and energy for that? Certainly, not I.

So, I spend a lot of time alone.  And that is wonderful and delightful. The most interaction I have on a regular basis is social media. At least I can walk away from that (literally) anytime I’m feeling overwhelmed, and it’s not going to jeopardize my life, like walking out of my job or home would.

In the end, we all have to figure out what works for us and what doesn’t, and take steps to make the most of what works, while trying our best to keep what doesn’t work from ruining our lives. It’s an art. It’s a science. Life goes on.

#Autism and its $TAKE-HO£D€Rs

Earlier this month, there was a conference on Autism research in Rotterdam, and out of that came some discussion of how to fundamentally change how we talk about Autism, as well as how we identify who’s playing what role in the discussion. There’s Autism Community (those of us on the Autism Spectrum), and there are Autism Stakeholders — researchers and clinicians who build their careers around studying us.

Cos (@autismage) on Twitter proposed

I’d call any #autism researcher or clinician a ‘stakeholder’, unless they’re #ActuallyAutistic. have an #autistic relative/partner, or do participatory work with #autistic pple. Those exceptions are ‘community’. Therapists (with same exceptions) are ‘stakeholders’. Very simple

And that got me thinking…
Of course it did.

At first, it seemed to me that anyone who’s Autistic would be a “stakeholder”, because we have a “stake” in the discussions, the research, the ongoing developments, and so forth. We’re directly impacted by them, and we stand to gain or lose, depending on how those develop.

I use the term “stakeholder” all the time at work when I talk about projects, and the meaning we have for it, is someone who is directly impacted by the outcomes of those projects. They’re invested. They’re affected. They have a lot to gain or lose from the results. Just like Autistic people who are deeply affected by all the developments in research and policy and public discourse.

We’re stakeholders, right?

Well, maybe…

Taking a closer look at the etymology of the word, it struck me that the original meaning of the word was the exact opposite of how I was hearing it used.

Folks on Wikipedia say:

Per Webster’s 3rd New International Dictionary 1: a person entrusted with the stakes of two or more persons betting against one another and charged with the duty of delivering the stakes to the winner 2: a person entrusted with the custody of property or money that is the subject of litigation or of contention between rival claimants in which the holder claims no right or property interest

So, the idea of a stakeholder has nothing (originally) to do with the actual stakes themselves. They’re basically an “escrow agent” of sorts, with no personal investment in what’s going on.

And then there’s the popular conception of stakeholder as “someone who holds a stake in the ground to claim territory”. That’s something I’ve heard a number of times in the course of meetings at work, and the spirit of it carries through, as though we were in the Wild West (per the NY Times🙂

… when Western land was made available to those who would work and live on it, a stake became a section of land marked off by stakes and claimed by the farmer. By extension, a grub stake was money advanced for food, or grub, as an investment or loan.

And here’s where it gets interesting to me, and it becomes more apparent to me that we really should differentiate between the Autism Community and Autism Stakeholders.

First, the idea that stakeholders don’t actually hold a direct interest in the Autism Community. True enough, I believe. They’re interested in us, and they make a career off us, earning a living thanks to our “puzzling” existence (sarcasm). They’re stake-holders, not invested parties with personal issues at stake.

And then there’s the second “Wild West” definition of stakeholders — which seems even more apropos to me, considering the colonialism at its core. The West was “opened” by displacing Indigenous peoples from their ancestral lands, and if you could get your hands on a stake, you could get a piece of the action. The DSM-V and other diagnostic tools pathologize and marginalize us, and they’re used to clear us out of the territory of our own lives in a very real way.  And then the “settlers” — people who have taken courses, completed degrees, and gotten certifications — have moved in to profit from our marginalization.

Just as Nestle moves into an area and commandeers all the potable water, then sells it back to the rightful inhabitants, so have the “Autism professionals” moved in on our lives, declared us “unfit”, and then devised all sorts of for-profit paths to “rehabilitate” us in the image they desire — as often as not using violence in its many forms to achieve the goal of “normalcy”.

If that’s not colonialism, I don’t know what is.

And in a very real sense, the people who are profiting from explaining our existence to the world — after they’ve completely confused everyone, to begin with — are stakeholders. In the financial sense. In the territorial sense.

So, yes, Cos — we should differentiate between the Autism Community and Autism stakeholders. That distinction is more than semantic. For some of us, it’s life and death.