Autistic Axolotl!

A lot of people on the autistic spectrum struggle with something called ‘executive dysfunction’, which makes certain tasks of daily living very hard for them. It affects planning, organisation and self-care for a lot of people. People with ADD/ADHD might also be able to relate to this post, although I’m writing about it from an autistic perspective. Your experience may be different and I don’t want to step on anyone’s toes.

For me, it manifests as being able to focus on one thing very strongly, with everything else falling by the wayside. I’ve been very busy over the past few years with school and work, and those things take priority, so my homework will get done and I’ll get tasks done at the office while my laundry sits there waiting to be taken care of, and I end up buying food out instead of making it myself, when I’d rather not be spending money on the expense that eating out entails. I spend more money than I’d like on food because I don’t always have the energy to cook, especially on those days when I just want to get home from class, flop into bed and listen to some calming audiobooks to destress and decompress.

My bedroom is atrocious. It’s not the worst it’s been right now, but it is still pretty bad. Like, really gross. I wish it looked better. I want more room there. I want to be able to set things up the way I’d like them, but I never have the energy to do it. I’ve had problems with keeping my room clean since I was a kid. And by ‘kid’, I mean ‘four years old’. I used to have pictures of my childhood bedroom, which was usually a disaster area. That hasn’t changed over the past two decades, and I wish it would. I’ve tried. Often I’ll manage to have it neat for a month or something, only for it to get worse. And I often feel that I don’t have the energy to do anything about it, since when I’m busy, I tend to simply crash and relax once I get back home.

I also have an extremely hard time keeping track of things like laundry, washing and other self-care issues. People sometimes notice it, and I feel horrible if they point it out, even if I know that they mean well. I know that half my clothes stink and the other ones are questionable. I know that I need to be more diligent with self care. I know I’ve got a patchy beard that I need to shave off. I’m extremely conscious of it. It’s not that I don’t notice, or don’t care. It’s the fact that I’m not certain what I can do about it long-term. Believe me, I hate it. I’m embarrassed.

The only time I’ve had passable self-care (and didn’t have anyone to make sure that these things were done) was when I was neither working nor studying. I’m not even exaggerating. It’s that hard right now, and I just don’t know how to fix it. My energy goes towards the dominant task in my life. I think it’s a sort of ‘monotropism’, or central focus. It’s not that I don’t care about the other things; it’s more that I have a limited amount of energy I can expend. It takes all my ‘spoons’.

Personal organisation is another problem area for me - if it involves something that can’t be electronically indexed. If it’s a piece of paper, I’m much more likely to lose it. This is one of the many reasons why I prefer to use electronic devices for note-taking. Reminders are synced between my Macbook and iPad. I usually take notes with my computer or use a stylus with my iPad. Taking notes by hand means I might lose them. Not so much a problem if I have things like syncing set up. I only wake up on time because my computer and iPad are blasting alarms at me every morning.

There are times when I go days (or sometimes over a week) without some of my medications because I have to pick them up at some out-of-the-way place, and I have to modify my routine in order to do it. Luckily, my survival doesn’t depend on them—but my sanity does, and I find myself getting incredibly agitated if I don’t have them. I don’t like the fact that I wait to do things until I have more energy, or when I’ve psyched myself up to do things outside my routine, but that’s how it’s been.

If I become overloaded somehow, everything gets harder, since my immediate impulse is ‘go down and rest immediately’.

If I had unlimited money, I’d just hire someone to do stuff like laundry FOR me. I’d actually like a personal care attendant at some point (to help with certain tasks of daily living), but I don’t know how to get one. I think that you need to be on disability or have a large amount of money to be able to pay for one, and I don’t think I’d ever be able to have that help. The fact that I can do some types of work probably disqualifies me for disability, and I don’t know if I’d do well with the enforced poverty that it creates. And I’m not certain if I’d end up making enough to allow me to hire a personal care attendant. Things get complicated because while I can do extremely well in one area of my life, everything else starts to suffer. (There’s a post that’s a bit similar to what I sometimes go through, but to a more extreme level, called ‘You Have It So Good’.)

A friend of mine wrote me asking why I’d suggested on twitter that people stop reading the Huffington Post, saying that the political reporting is still really strong and important. This is what I wrote in response:

Hey Sarah

Yeah, so maybe I got a little short in that tweet, but it’s hard to fit detailed reasoning into 140 characters — it was mostly just a frustration vent. I clearly hit emergency levels re: HuffPo, which seems to happen too often.

Agreed: a lot of the political reporting is good. The editorial is awful, though. For whatever progress is made by the clear, insightful reporting done by the site’s fine political reporters is deeply undercut by the way it’s presented, with 5,678 point type headlines manufacturing outrage and sensation over every little thing that comes across their desk. Also: the constant feed of ugly, demeaning celebrity-worship-perpetuating trash that seems to make up most of the site’s front page is fucking neanderthal. And the fact it’s supposedly the flagship e-rag for the left (which I think many people believe) is only undermining the *real* left, the left that I know, for whom the bar is high and care, thoughtfulness and intelligence is the real gold standard.

But that ain’t the least of it. The most awful thing about that site is its science reporting. Most egregious: its science reporting when it comes to autism. The fact that they give a platform to Jenny McCarthy and her out of touch anti-vaccine screeds is pretty unconscionable in a day and age when the the autism-vaccine link has been completely debunked and whooping cough cases are on the rise in affluent, left leaning communities. Communities who likely read the Huffington Post. This is the story that got me going this morning, and I hesitate to link to it because I suspect that the bigger reason why HuffPo publishes salacious, misleading and poorly-vetted stories is to court controversy and up their click-throughs or whatever (which is awful, too):  http://www.huffingtonpost.com/franco-antonello/for-the-friends-of-andrea_b_1911321.html

I’m sympathetic to the writer; he seems to be writing with the best of intentions. But as a fellow parent of a kid on the autism spectrum, of a kid who *does* listen to how his disability is represented in the media, I have very little patience for people who write about autism the way this guy does — and very little patience for the outlets who publish it. Not only does the writer make an off-the-cuff suggestion that vaccines cause autism, but he equates “deadly diseases” such as HIV to autism, which is awful. Language like that is not only harmful to the autistic community, it spreads bad information to the public at large. It’s irresonsible journalism. To publish it is irresponsible editorial work. And unfortunately, that’s sadly representative of a lot of the HuffPo’s science and autism coverage.

But that’s the thing: The HuffPo has made it their MO to barrage readers with content content content without having much of a thought to what sort of harmful misinformation they might be dispensing. So that’s why I encourage *not* reading it.

there you go. Sorry to bog your inbox with my rant. Hope all is well with you — and keep up the good work!

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