The Cost of a Cure for Autism

… Maybe I’d try being non-autistic for a few hours… Doesn’t seem like much fun, actually.

Autism and expectations

I’ve asked myself if I would want a cure for my autism if it wasn’t mythical (the cure, not the autism). I’m a logical type, I’m not bound to any one part of me; if you told me I could replace my feet with wheels, I’d definitely weigh up the pros and cons (stairs would be a pain, but I’d really like whizzing along, a lot would come down to just how good the suspension would be), thinking things through is what I do.

To decide whether getting rid of my autism would be good or not, I’d first have to define which bits of me are the autism, and what would replace them. How could I begin to quantify that?

Some of my greatest joys, my purest moments of happiness, are found in the patterns I see all around me. In the way a butterfly flutters, or a wall…

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Sticking to Small Talk

I agree – as irritating as it is, sometimes small talk is the way I prefer to interact w/ the rest of the world. If they can’t keep up with me or aren’t on the same proverbial page, deeper conversations are not a good use of time.

Eclectic Autistic

It’s often remarked by autistic people that we don’t “do” small talk. We’d rather not talk at all, or talk endlessly about one of our interests — there is no middle ground. We’re all different, of course, so this isn’t an absolute, but it does resonate with me. But I’ve been thinking about one way in which I sometimes prefer small talk, because it’s more comfortable than self-disclosure.

I don’t necessarily mean disclosure of my autism; I just mean any kind of revelation of who I am and what is important to me. Small talk isn’t my strong suit — I’d much prefer a deep, intense conversation about one of my passions — but it’s safer to stay on blander, neutral ground.

And that’s because all too often my excitement or intensity about a subject has put people off. I’ve learned how not to totally monopolize the conversation, so it’s…

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When plans (fortunately) just don’t work out…

So, I had plans for this weekend. I have a project I’ve been wanting to finish for months, now, and I actually had 36 hours of solitude all to myself. This is rare.

Construction works in Funchal harbor

Silence. Solitude. Freedom to move around the house without concern for disrupting anyone’s sensitivities

Quelle Luxe! But yesterday I was tired. So tired. It’s hard to think creatively, let alone finish, when I’m tired. Everything fades

So, I let myself be. I did stuff. I let myself watch Galaxy Quest again. I watched some movies I normally don’t. ‘Cause… solitude.

Now it’s nearly 1 p.m. and I have less than 8 hours of solitude left, and I’m wondering what I should do… Errands? Food shop? Dunno…

I should probably do just a little on that project, just ’cause I promised myself. But days when I have free time, I realize just how much I actually do on a regular basis

and how vital my routine is to me, to get it all done. There is a ton of detail in all I undertake

And to the rest of the world, it may look like a disjointed mess. But to me, it all fits. It’s beautiful. That’s just how my mind works.

And when I have the chance to just let my mind do what it will, without being “harnessed to a plow” of some kind, it’s wonderful.

Truly.

Days off, days on

sunspot animationI just got my telescope figured out for the eclipse tomorrow. I’m in a location where we’ll have about 70% eclipse, so it’s not going to be as dramatic as in other places, but still…

Friends are coming over for the event. Actually, they’re coming home tonight after an event my partner is attending today, and they’ll be here tomorrow. I’m not happy about my routine being disrupted — it’s stressful in an already stressful point in my life — but  at least I like these two young people. They’re fun and invigorating and very open to life. I also don’t need to mask around them. I can just be me.

I’m hoping we can get a look at some sunspots. I got a telescope with a sun filter, so we can look close-up at the sun during the eclipse. I also got us some eclipse glasses from a reputable manufacturer (not all of them are), so we can take a look. I practiced setting up the telescope and pointing it at places. It’s a reflecting telescope, so things look upside-down, and to make it look right-side-up, I need to have another attachment. I should have set the whole thing up sooner, but this week has been stupidly busy, and I’ve been absolutely swamped / assailed at work.

It’s pretty bad, actually. And a lot of the beliefs and assumptions I had about the larger team and how well we were working together pretty much went out the window in the space of 24 hours.

That seems to be how everything is going, lately.  A lot of the ideas I’ve depended on have gone away… And it’s disorienting. Stressful.

I don’t like it.

Anyway, it’s a paycheck, right? And in some ways, I’m actually adjusting to how Things Are Supposed To Be Done better than before. I’m so tired. It’s hard to know what I should do, or why I should do it.

So, I sit tight, take it day by day, and eventually… eventually… things may sort themselves out.

I’m just not a fan of the dynamic, right now. Nor am I fan of working remotely with people. I have a hard time interacting with people over the phone and IM primarily. I can’t “get a read on them” and I constantly misinterpret what people are saying. I think they also misinterpret what I’m saying. It’s such a pain in the ass. And I realize that I really need to work with people on-site. Not remote. Best case for me, is to work somewhere close to home, where I am part of a live, in-person team that actually communicates with each other.

That’s really the bottom line for me. And yeah – I need to not keep bending myself out of shape to adjust to this job. Why should I? They should adjust to me, not the other way around. So, I’ve updated my resume, and I’m going to start putting out feelers for other positions. If it happens sooner than later, I’m fine with that. I’ve been looking forward to my extra vacation time coming up, but is it really worth it, if all my time off is spent recovering from the daily dramas, and I still feel like crap, the whole time I’m “off work”?

That makes no sense. I’ve been uncomfortable in this job, practically since the start, and I’m tired of bending myself into pretzel-like configurations to make it work.

Why should I have to make it work?

Why can’t I work at a place that already works for me?

Anyway, that’s where I stand, right about now. (Though technically, I’m sitting down.) I’ve had it. And I’m tired of thinking that it’s my fault that things aren’t as lovely and delightful as they’ve been for me in the past. I’m tired of blaming myself for not being all enthused about how things have gone. And I’m tired of feeling responsible for fixing things that other people break.

So, I’m pretty much done.

I had a quick burst of excitement about my job, lately, but it’s rapidly soured.

What’s next?

Only connect

This is great.

Counting the Ways

Recently Laina posted about her Jukebox App which is firmly installed in her brain. I, too, have a Jukebox App. Sadly, I have very little control over it. Something is playing most of the time, but not because I have requested it. It gets triggered by something I read, or something I hear. Sometimes the connection is obvious, like when a song is mentioned it will play that song, or when an artist is mentioned, it will play something by that artist. Sometimes the connection is extremely tangential. The song will probably play repeatedly, starting up again and again, even hours, sometimes days, after that first trigger. Annoyingly, the Jukebox will also play songs I don’t like, and I can’t stop it from doing so. More annoyingly, it mostly only plays snatches of songs, never one song all the way through. It plays all genres of music. Often it will…

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What would make #Atypical discussions even better…

… is if the producers and everyone lauding the show would incorporate a little humility into their public discussion.

megaphones facing in different directions
It feels like people are all just talking over each other.

It feels like everyone is yelling at each other over the show Atypical, and people are predictably falling into fight-flight mode, which doesn’t help our ability to parse nuance… at all. A lot of people are trying to make their points, and in the process, they’re doing it in a way that literally shuts down the other side and makes it impossible for others to hear them.

I’m not tone policing. Not even close. I’m just giving folks a heads-up that our bodies may be preventing our minds from engaging properly. This is simple biochemistry — the mechanics of our autonomic nervous system (the sympathetic side of it), which does what ever it damn’ well pleases, regardless of what we want it to. It’s very simple, actually. We get worked up, and we can’t handle nuance, variation, higher reasoning.

Anyway, I think a simple statement from the creators and producers of the show would help immensely.

Here’s my suggestion for a statement from them:

In Atypical, We’ve done our best to portray an autistic character as realistically as possible, but of course autism is a broad spectrum and people’s traits can be changeable from one situation to the next. So we’re going to have Sam evolve as a person — as an autistic person — and we’re going to also show how this affects his family.

Parents and siblings of autistic kids are often isolated and alienated from their peers, which means they don’t get a lot of the support and acceptance that many families just take for granted. We want to tell a story they can relate to, so they don’t feel so alone. We also want to portray autism in a way that helps explain it better to them, because even though they have lived with an autistic member of their family, unless you are autistic, it’s very difficult to understand the experience in all its complexity.

We also know we have a lot to learn about autism, ourselves, and some of the assumptions we started with are probably going to be wrong (maybe completely wrong) as we ourselves evolve, so bear with us as we work through the issues. We apologize in advance for any ‘ham-handed’ treatment you may see. Our intention is to do good, not perpetuate the stereotypes and harmful generalizations which keep autistic individuals from being understood and accepted. And by all means, we invite input from our audience — especially our autistic viewers, who have been misrepresented and dismissed in society for so many years.

Autism affects us all — even a lot of people who don’t realize it. And like any complex situation which involves individuals, family, school, work, and our broader communities, it can be quite a ‘minefield’ of misunderstanding and misrepresentation. We don’t want to add yet more explosives to this already tricky terrain. We’re human, and we know we’ll make mistakes along the way. We just hope our audience will remember that and help us correct our course, as we proceed. It’s our hope that Atypical will become a lasting contribution to the public discussion about autism, and that we will not only teach about how autism affects the whole family, but also learn more as we go.

There. That would fix a lot of the distress about Atypical, I think. Just a simple statement to that fact — humility in action. Love in action. And good PR.

If anybody on the Atypical PR team wants to use this — or a form of it — feel free. I just want us all to start talking to each other like human beings (not partisan opponents) who have a vested interest in each other’s health and well-being… and are willing to show it.

Oh, and truth. A vested interest in truth would be awesome! 😀

One of the unexpected ways that knowing I’m autistic has helped me…

door hanging in mid-air beside a dried up dead tree
It all seems so surreal, sometimes…

… is resetting my expectations for what I’m actually capable of doing.

For years I have acted as though I am just as capable as the next neurotypical person of negotiating job terms, salary, and all sorts of different details to go along with carving your space out of the world around you.

Now, though, I realize just how impaired I am in that respect.

I don’t know how to negotiate pay properly. I don’t know how to be proactive and put on a strong showing all the time. I don’t instinctively put my best foot forward and showcase my talents and abilities just like every-NT-body else. I don’t naturally blow my own trumpet, so to speak.

The funny thing is, those are not things I actually want to be good at. They seem vaccuous and foreign to me. Like a formal dress-up suit that’s 2 sizes too small — but unless I’m “dressed” in it, I won’t be allowed into the party, so to speak.

Thus, I am inherently at a disadvantage when it comes to salary, job negotiations, advancement, career ladder climbing, the whole shooting match.

And it has dragged me down terribly for so many years.

I can’t even begin to tell you how badly I have thought of myself because I couldn’t do the things that I thought I could.

If only I had simply known, from the start, and come to terms with those things…

If only I’d realized  I’m at a real disadvantage…

If I had simply realized just how foreign that whole world is to me, and that no amount of practicing and no amount of pep-talk and no amount of motivation is going to get me to gravitate to those patterns of behavior…

I could’ve just saved myself a whole lot of time and hassle. I could’ve saved myself the anguish of dealing with those job changes that were supposed to lift me up in the world, but just ended up a repeat performance of my impairments, albeit in a slightly different way.

I could’ve spared myself all of those goddamn interviews, all the fucking screenings, all the pathetic excuses for bids for advancement that I embarked on over the years.

I could’ve saved myself the hassle of updating my damn’ resume every other year and talking to recruiters – on the fucking phone – about crap positions they wanted to sell me.

I could’ve spared myself all of those lousy miserable sessions talking to smooth-talking head hunters who did a fantastic job of talking circles around me.

I could’ve saved myself the pain and dread and horror of seeing one attempt at advancement after another fail, fall flat on its face, or backfire on me, to the point where I wished that I’ve never even tried.

If I had only known just how impaired I am, I could have made peace with the fact that I’m not at the head of the pack of my generation in ways that the present mainstream values. Nor should I bother even trying to get there in the standard-issue way. The ways I have are foreign and often unwelcome to others, but they’re my way. And they work for me. I could have just settled into doing the things that do come naturally to me, that are in my “wheelhouse”… things I am extremely talented at… instead of chasing after the waste of time limitations imposed on me by everybody else’s version of success.

Good Lord, if I’d only come to terms with being autistic early on in my so-called career, I could actually have enjoyed myself, all these decades, instead of always pushing myself to some neurotypical ideal, and then beating myself up for not achieving it.

What a colossal waste of time it’s been. What a goddamn fucking waste of time. And I’m done. I’m just over it. I’ve been knocking around on Planet Earth for over half a century, and I’ve had it.

It’s time to just enjoy myself. Do what I do. Forget about the whole getting-ahead business. I couldn’t manage it, if I tried. And I’m sick of trying.

But behind my privacy screens… there’s a whole other world waiting.

One that loves me and makes room for me.

That door, please.

I’ll take that door.

Forced Intimacy: An Ableist Norm

This is a great post, and it reminds me yet again of why I don’t talk much about being autistic… with anyone, really. Even in safe, autistic spaces, there can be too much intrusion , as others seek to connect with me in ways that are actually very uncomfortable for me.

I find it especially off-putting with certain autistic men, for reasons too complex to describe and explain at this point in time. Not *all* autistic men, but … well, men in general tend to be “problematic” for me for a whole bunch of reasons.

Most of it has to do with how men are socialized and what’s expected from gendered individuals. It takes a very “evolved” individual to interact with me in ways that aren’t offensive on some level.

So, I keep everybody and everything at arms’ length. Shields up. Is it lonely? Not nearly as lonely as being stuck with stereotypical gender roles and people who don’t know how to socially navigate in any other way.

Life goes on. And I have myself intact. That’s what matters.

Great post… Nice.

Leaving Evidence

Photo of my wheelchair in a dark room, silhouetted against a doorway, with a large shirt outlined in lights hanging against a dark wall.

“Forced Intimacy” is a term I have been using for years to refer to the common, daily experience of disabled people being expected to share personal parts of ourselves to survive in an ableist world. This often takes the form of being expected to share (very) personal information with able bodied people to get basic access, but it also includes forced physical intimacy, especially for those of us who need physical help that often requires touching of our bodies. Forced intimacy can also include the ways that disabled people have to build and sustain emotional intimacy and relationships with someone in order to get access—to get safe, appropriate and good access.

I have experienced forced intimacy my entire life as a disabled child, youth and adult…

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Postcard from another place #autism

A lovely piece. A lovely peace.

The other side

IMG_1790

These days it feels like I’m in another country. Landscapes fall away and I float  above them. Nothing is fixed and yet I feel more stable.

Life’s problems abound, don’t get me wrong about that.

No one has waved a magic wand. Yet it is possible to feel both lighter and more substantial.

I have been writing now about my personal and professional journey as an autistic woman since March 2016.

The journey metaphor is unavoidable (is it not?) Such cliches adhere to the collective consciousness for a reason. Like barnacles on a boat – they’re not going anywhere. And they’re real.

The landscapes we carry within us are the other eternal and lasting image. Humans are we, all tasked with mediating our inner and outer geographies.

You might well know what I mean when I say I’ve crossed a border. And I have.

Cliche, after cliche would like to…

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