Preformed Performing

Fantastic post. And Melanie Yergeau’s paper is excellent, too.

Mamautistic

Reflections on my life and activism after re-reading “Clinically Significant Disturbance: On Theorists Who Theorize Theory of Mind” and being so tired & wordless lately.

I have been a painfully honest person performing a preformed lie. Obsessed with accuracy in every other area of life, I still found myself trying to blend in. Trying to be as accurately inaccurate to who I am as is Autistically possible.

I am tired, wearying more. The purposeful breaking of character (that character whom I spent my entire life trying to be) grows ever more essential to my wellness and ability to survive, let alone thrive.

I cannot keep up the façade, however carefully constructed and curated after years of trial and error.

I do exist beneath that outer surface. There is a person in here, an Autistic person who doesn’t want to constantly try and perfect what will get the least amount…

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Thank heavens. In 48 minutes, it begins again – my regular #autistic routine

shovel standing in a turned-over garden
This is part of my new garden. It’s 8′ x 10′, and it took me 90 minutes to turn over with a shovel. Yeah, I’m a bad-ass 😉

I had such great plans for this past long weekend. But, of course, things turned out very differently than my designs. No surprises there. And yet, I am perpetually surprised when things don’t live up to my engineered ideals.

You’d think I’d learn.

But nah.

I had been hoping / planning / intending to spend my time intentionally. I was in serious need of some relaxing and recuperating after the prior week. I wanted to catch up on my reading, do some gardening, relax, nap, eat interesting food which I’d prepare at a leisurely pace, and have a generally restorative time. Maybe make hamburgers on Memorial Day. Watch a movie on Sunday afternoon. Call my parents.

Instead, I had a busy Saturday morning, got all “socialled-out” by interactions at the community garden, including some faux pas along with some connections. I met some of my co-gardeners in the space we share. We all have at least one 8-foot x 10-foot plot. Some of us have two plots. We’re a diverse group – an elderly Chinese man who only speaks Mandarin, an elderly white hippie-ish couple, a Black woman whose mother helps her out, an Asian-Caucasian bi-racial couple with two girls, and the older white guy who runs the place.

The elderly Chinese man communicates with us by dictating to Google Translate and showing us the text translations. At first, he was showing me Chinese-Russian translations, and I couldn’t explain that I couldn’t read them. Then I got my phone in the action, and after I explained to him that he wasn’t translating to English, he changed his settings, and all was right with the world. I also showed it to the other gardeners, who thought they needed an app to do it. But no – Google will translate text, and you can dictate the text for it to translate, so we were all fully enabled and empowered within a few hours’ time..

The day was bright. I had a lot to do. I was tired from the week. Everybody wanted to talk. Ugh. I mean, yeah – they’re lovely people, and there are worse groups to be around – but after a few hours, I started to wear thin. Especially as people continued to engage with me and discuss their plans. I found myself getting snarky and bitchier than I normally am. Fatigue. Bright sunlight. F*cking mosquitos. Anxiety over my beans, which are being chewed on by something, not to mention the constant threat of rabbits. Fencing. I need additional fencing around my plot, because the overall fence isn’t holding up. Hm. It keeps the deer out, but not the rabbits.

We’ll have to do something about that.

I’d really rather not have to deal with people, when I’m gardening, but I asked for it. I joined a community garden, so that’s what I get. Community. Good lord, what was I thinking, spending 4 hours on a viciously bright Saturday morning, when I was still hungover from all the adrenaline rushes from the week before?

I know what I was doing: trying to Live My Best Life, that’s what.

Well, I gave it my best shot, and I’m sure not everyone will remember me as the snarky, bitchy new kid who gets prickly over the garden politics of who gets what plot (just give the old Chinese man the plot next to him – nobody’s using it, anyway! – why can’t everyone just handle things logically, instead of jockeying for position?)

After my time there, chatting about this and that, I ended up feeling pretty deflated. Everybody wanted to discuss their domestic situation… as if it matters to the seedlings in your garden, whether you have kids or living parents or nieces and nephews, or you love your job. I hate those kinds of discussions. They feel intrusive. And no, I don’t want to announce to the gardening community that I’m a big ole dyke with a disabled spouse who works too-long hours in the employ of the Masters of the Universe. What difference does it make to the health of my peppers and tomatoes? Will that information make my carrot seeds actually sprout? Nope. So, why dwell on it.

I like my conversations topical. I hate schmoozing and connecting over personal details.

Hate it, I tell you.

After I extracted myself from that awkwardness (which I’m sure seemed perfectly lovely to everyone else), I rallied and got my Saturday errands done in pretty decent order. Ran to the post office and mailed out the package my partner left on the counter. Took the trash to the dump. Went food shopping. Did some cleanup around the house. Had some lunch. Took a shower. Got a nap.

The nap helped a little, but more than anything, it reminded me how exhausted I was. What was I thinking, doing all that activity first thing on a long weekend? It wasn’t like I had an overabundance of energy, to begin with. But my Saturdays are often like that. I’m coming off an exhausting week (typically), and I have just a day to get all my most unpleasant errands done… which I do. And then I crash on Saturday afternoon (if I’m lucky). I can usually rally, but last week was pretty grueling.

Well, anyway, my plans for a lot of reading and relaxing didn’t exactly materialize. Sunday and Monday were rainy, which was fine. That’s normally a relief for me. But I was thrown off by the long weekend, for some reason. My pacing was off. And I was really tired and irritable with my partner, resulting in too much friction, too much arguing, a little yelling, a bunch of tears. I really hate when that happens, especially when it’s pretty much centered around my meltdowns. It’s like my meltdowns are whirlpools in the rapids of my life, and as I sail downstream, paddling wildly, I keep getting sucked into them… pulled down into the roiling darkness, as I’m flailing madly, trying to keep upright, trying to keep from tipping over or getting pulled into the Darkness.

The worst thing is, it often feels like my partner is sitting in the back of the boat, commanding me to keep the craft righted (not bothering to pick up a paddle, mind you). But that’s another blog post for another day – still working my way through understanding how to better handle that type of situation.

Anyway, my weekend ended up much more active than it should have been. I lost sleep, didn’t catch up on it. And the things I’d been planning on doing… well, most of them fell by the wayside. I did read a lot, though. I’m working my way through Katherine May’s The Electricity of Every Living Thing, and it’s a real pleasure – I’m nearing the end, and that saddens me. 😦

I got some writing done. I got some sleeping done. I got my exercise. But rest and recuperation? Nope. I’ll have to see if I can work that into my upcoming week — my typically structured week with the usual routine, which is so important for my regular maintenance and mental health. Three days off was a plus. But I’m glad it doesn’t happen all that often.

P.S. On a bright note, we did manage to get one of our rooms partly cleaned out and tidied up. We’ve been getting increasingly boxed in (literally) by all this stuff that we haven’t managed to either throw away or put away. Executive dysfunction, combined with exhaustion and bare-minimum interest, isn’t the most domestically beneficial state to live in. But yesterday, we actually did something about that. Bonus.

Sharing: Why IQ scores are erroneous for autistic people

bell curve showing distribution of IQ scores throughout populationSharing 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

I won’t be the ‘tame autistic’ – The need for real Autistic involvement not just ticking a box

Great post from Jeanette Purkis. It’s always a balancing act, of course, but having non-autistic people dictating the terms of our behavior and speech to us…? No thank you. Especially when it’s at the expense of truth and teachable moments.

YennPurkis

I was asked to speak at an autism event last year. The organisation hosting it told me they have one presentation on autism each year and it was a great privilege to be asked to speak there. I prepared my talk and travelled to the town the talk was in. The neurotypical organiser asked me something I have never been asked before and hope never to be again. They said ‘so what are you going to wear tomorrow Jeanette?’ I was very tempted to say I would be naked due to my respect and love for nature but restrained myself. At the talk the same person asked my how to ‘manage militant politically correct autism activists?’ I suggested that listening to them was probably the best idea given the way things are now and that those who attack ‘political correctness’ are more of a worry as they are essentially fighting…

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Six reasons I frequently end up in bad relationships

people arguing with a splattering of dark around the borderI 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.

Monkey Bars- Gut Instincts

Great post – very thought-provoking. This is the kind of stuff we need to think about. A lot. Would be great if we could find some alternatives to one crappy relationship after another. I know it was a challenge with me for years… decades… most of my life.

Edge of the Playground

Let’s talk about instincts. All too often we as autistic people get bullied or taken advantage of by the wrong people. Why? Because many of us let it happen and do not even realize that we are.

In general, I have a tendency that I have worked very hard to fight of being attracted to toxic friendships and relationships. Why do I unconsciously seek them out? Because I crave social cues from those I am spending time with. Somewhere along the way I confused controlling, bossy, and bullying type of behavior as social cuing.

I think many of us may attract to bossier people because let’s be honest, it is exhausting to remember social cues and deal with all the sensory. So when we find someone who appears to be helpful in that way we don’t mind being bossed around a little bit because the trade off is we get…

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#Autism and its $TAKE-HO£D€Rs

man carrying briefcase and fistful of money
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
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.

And then something really cool happened at work…

open book with a flaming heart insideI’ve been on pretty much of an emotional roller-coaster at work.

Everybody has been so busy, and there are a lot of changes going on. And we’re all pretty much at our wits’ end.

I was on a call with a co-worker, this afternoon, and he was giving me tips on not burning out, not taking on too much, how to delegate to others. He was talking about tips he’d given one of our fellow co-workers, and as he was explaining, he said, “I love B___________, I love all you guys, I really do. And I want to help make your lives easier. That’s all.”

At first, I was a little taken aback. I’m old-fashioned, I know, with a whole lot of working history that’s trained me to keep a professional distance from everyone, including my co-workers. But then I thought about it, and I realized that that’s something I say all the time, too. “I love you guys… I love them… I love _______.”

And that’s just how we talk to and about each other at work.

Plus, it’s how I’ve talked about my co-workers many times in the past. With love. About love. For love.

Despite all my complaining about my job and the hassles and the pain and suffering that comes with it, there’s still a lot of love there. For others. From others. Even the people who drive me to distraction and keep me up at night with their political shenanigans… I love them, too. And they love me.

That’s something you don’t find everywhere — especially the company of people who get that and reciprocate and who make it easy to talk that way. At work.

So, I’m feeling pretty positive, right now. Of course, it helps that I had a little nap after work, and I have three days off. But even so, there are worse things than working with people who feel as loving towards you, as you do towards them.

Six months on, three months off

construction workers hanging on rebar

TW: Death/depression mentions

I’ve had a really, really busy past six months.  No, make that 9 months. For the last part of 2017, I had a handful of projects I was trying to get done, and I really pushed to make it happen. Same thing happened in the beginning of 2018. I kicked ass and hit most of my targets. Some of them I put off till later, thinking I’d have time… later.

Then I crashed. In a big way. I crashed so hard, I literally forgot about the projects I had been finalizing, and I went so far as to delete a website I’d set up for one of them. I didn’t think anything of it, when I did it.

Now, however, I regret that. For reasons I won’t go into, right now, I can’t recreate that website. It’s gone. Oh, well.

Actually, it’s probably for the best. Looking back at my projects, I realize I was spinning off on too many additional tangents and “complementary” activities, and that dissipated my focus. It’s better if I keep things narrowed and specific.

Anyway, I’m coming out of my crash, recovering from my burnout. I hate those periods of enforced rest, when I can’t think clearly if I try. I’m useless to anyone, outside of the rote discharge of duties. And that means I’m useless to myself, because I’m all about improvising and “coloring outside the lines”. But after pushing hard for 6 months (which, to be honest, I love), I have to give myself at least 3 months off to recover.

Or else.

Ugh.

Well, anyway, I seem to be coming out of my down-phase, now, with some new writing projects ready for resuming. I’ve got my “Autistic employment hacks” series going on… as well as guides to help people do things like save lots of money on really good laptops, publish eBooks, and other ideas I’m still refining.

And it feels good. I’ve really been wrestling with a lot of depressive feelings, lately, wondering What’s the use? and not feeling all that bad about the prospect of dying, someday. I know, it’s extreme. But that’s where my head/heart ends up, sometimes. Especially when I’m tired and I can’t connect with my “AAIFs” (Areas of Autistically Intensive Focus), I get so dragged down. To the point where life doesn’t feel worth living.

Fortunately, I’m reconnecting with my prior projects, and I’m feeling great about them. Especially the Autistic Employment Hacks stuff.

Note to self: It’s perfectly fine to take 3 months off those all-consuming projects. You’ll come back around, eventually. And you’ll pick up where you left off. Just don’t delete the “unnecessary” website!

Sharing: An Autistic Burnout

Here’s something you should read:

An Autistic Burnout by The Autistic Advocate

I’ve struggled massively with writing this.

It’s ironic really.

It’s taken me six weeks to start writing an article about Autistic Burnout, because I’m going through Autistic Burnout…

If you saw someone going through Autistic Burnout would you be able to recognise it? Would you even know what it means? Would you know what it meant for yourself if you are an Autistic person?  The sad truth is that so many Autistic people, children and adults, go through this with zero comprehension of what is happening to them and with zero support from their friends and families.

If you’re a parent reading this, I can confidently say that I bet that no Professional, from diagnosis, through any support services you’re lucky enough to have been given, will have mentioned Autistic Burnout or explained what it is.  If you’re an Autistic person, nobody will have told you about it either, unless you’ve engaged with the Autistic community.

Autistic Burnout is an integral part of the life of an Autistic person that affects us pretty much from the moment we’re born to the day we die, yet nobody, apart from Autistic people really seem to know about it…

Read the rest of An Autistic Burnout by The Autistic Advocate