Saturday, 29 November 2014

Yes, I've heard of it

 When I tell people I have Aspergers, often one of the first things they ask is "have you tried...?"

original by StelaDi
Have I tried meditation?  Cognitive behavioural therapy?  A gluten-free diet? Essential oils?  Medication?  Massage?  Biofeedback?  Horse riding?  Tapping?  Google Calendar?  Homeopathy?  This app?  That app?  This other app? 

Yes, I probably have.  Or if I haven't, there's a reason: it's expensive, it's not available here, it's not relevant to my particular needs, it doesn't work for me (I don't like touchy-swipey devices, so I don't do apps), or it's a scam designed to separate the gullible and desperate from their money.

It's usually because people are trying to be helpful or make conversation, so I try to be as polite and patient as I can.  But I've been diagnosed with Aspergers something close to eight years now, and for most of that time have taken an active interest in ways I can be the best, healthiest Aspie I can be.  "Condescending" is probably too strong a word, but when someone assumes it's never occurred to me to try a gluten free diet or see a psych, it's the word that comes to mind.

Where it does get annoying is when it's not a suggestion that I could try something, but an insistence that I should.  It's usually an argument that goes like this:

A gluten free diet helped my neighbour's sister-in-law's cousin's three year old!  Therefore you have to do exactly the same thing or you're just not trying!  And if it doesn't work for you, you can't really have Aspergers!

People are different.  If a gluten-free diet's working for that kid you've probably never even met, then good for them.  But I've tried it, and as the world's foremost authority on my own body, I can report that it didn't do squit for me.

What it did do was lighten my wallet to the point that even if it had made a difference I couldn't have kept it up.

Which brings me to the other issue with suggesting therapies for people.  If someone has executive function problems, complicated sensory issues relating to food, and a limited budget (because only a third of Aussies on the spectrum are employed), don't tell them to try a complicated, expensive, difficult to maintain diet unless you're offering to fund it and take care of the practicalities of sticking to it.

It's like suggesting I get a full time PA to handle my executive dysfunction, or an agent to help me get more freelance work: fantastic ideas in theory, but just not within my means.

I understand that it's usually people just trying to be friendly and show an interest, and I appreciate that.

But there's a chance the answer is going to be "no, are you offering to pay for it?"

Sunday, 23 November 2014

I'm not doing this shit deliberately

Sometimes, I feel like society at large has a basic, fundamental misunderstanding of what it means to be on the spectrum.

I wonder if there's a perception that Aspergers is a disorder of will or personality, rather than something with a basis in neurology and the physical body.

Maybe it's because I wasn't diagnosed until relatively late in life or because I don't "look autistic" (whatever that means) but there's a long, long history of people assuming I'm doing stuff deliberately when in reality it's either outside my control, like stimming, or something I have to do to manage my sensory shenanigans.

For instance, my inability to wear makeup or heels is usually seen as a refusal to do so, and people read all sorts of imaginary political and philosophical statements into my appearance.  Even after I've explained that my disordered sensory processing means I can't wear makeup and low body awareness means I genuinely can't walk in high heels, people act like if I really cared I'd make the effort.  My pain, loss of mobility and dignity, and inability to focus on anything or talk to anyone for the duration of the event (because it's hard to do that shit when you're in constant pain) is less important than looking pretty.

Same thing with social issues. When I was a child there was often an assumption amongst teachers and other people who one might have reasonably expected to notice something was amiss, that I was deliberately weird, deliberately unfriendly, deliberately made myself a target for bullies, deliberately set myself up to fail.  Even when I was too young to even be aware of the concept of social conventions let alone have formulated a philosophical objection to them, people thought I was being willfully difficult or making some sort of point.  It's like assuming a child with vision impairment bumped into the coffee table and broke a vase as a protest against the wasteful 21st century consumption-based lifestyle, rather than because he can't see. 

I don't know what it'd take to convince the world I'm not doing this shit deliberately.

I have Aspergers.

But I'm not having Aspergers at you.

Sunday, 26 October 2014

Preparing for annoying little disasters

Whew.  There's been a lot going on.

I have a lot of posts waiting to be written: about executive function, about well-meaning busybodies, about stress, about how asking adults on the autism spectrum what services they need when planning services for adults on the autism spectrum is somehow a novel idea.

But they're going to wait til I have time and spoons to do them justice.  Things have been stressy here lately for a lot of reasons, from a really busy patch at work to changes in my living arrangements to a computer virus, and I'm still getting over it.  (You'd think someone nerdy enough to want to download old QI episodes would be nerdy enough to make sure they did it safely, but my reach does somewhat exceed my grasp at times.)

But this whole nest of stress makes it a good time to talk about one particular way we can make our lives easier: by being prepared for when something goes wrong.

When, not if, because sooner or later, something will go wrong.  That's not bad luck, that's just what comes with life as a human being.  Our bodies are designed to deal with stuff going wrong: they heal, they grow and toughen in response to their environment, they're ready with a blast of adrenaline when we need to outrun a tiger.

But because we live in a complicated world, the sort of things likely to go wrong for us aren't of the immediate, physical, outrun-a-tiger sort.  They're the lose-your-handbag sort.  The locked-your-only-set-of-keys-inside-the-flat kind.  The lost-some-files-you-really-need kind.

And when that happens, I panic.  The disruption to routine is disorienting.  Thanks to executive function issues, I usually can't find the phone number or manual or password I need to deal with the issue. Sometimes I just go completely blank and genuinely have no idea what to do.  If it's my fault - like the computer issues - there's the frustration and anger with myself to deal with.  The knowledge that I'm in for a great deal of talking to people, and having the sort of technical conversations where my usual stock phrases won't be helpful, creates an extra layer of stress that helps me go to pieces completely. 

So, I'm trying to get organised for next time, with this sort of thing:

It's a list of who to call about what if (touch wood it never happens) I lose my handbag or it's stolen.  It's everything I need to know to report my phone as missing, my various cards and keys, and everything else that lives in there.  Once the list is finished, I'll run off a couple of photocopies and keep one at home, one at work, one at my parents' place, and a scan on my computer.  (I was going to keep one in my handbag, but just realised that would be ridiculous.)

Similarly with keys: one of my chores for the coming week is to get spares made of my car key and the keys to my new place, so I can keep a full set of spares at work, at home, and at my parents' place.

I still have to work out what to do about my umpteen squillion passwords and logins.  I know it's a security risk to write them down, but I just have to keep a record of them somewhere or I'll spend half my life hitting 'reset password' links and wondering which email address the reset link will be sent to.  (And whether I even know the password for that!)  So that too is a job for the coming week - maybe a list tucked somewhere low-tech like my sock drawer.

It's a level of preparation and organisation most people probably don't have.  But it's a level most people probably don't need. 

But I do.

And life's hard enough already - I reckon a little time invested in making it easier is time well spent.

Sunday, 5 October 2014

Roller derby for Aspies

I'd like to talk about roller derby.

roller derby
Not the guys I tried out with, but this is the general idea
Don't worry, I haven't taken complete leave of my senses and signed up for one of the few sports that involves competing in makeup and stockings.  But earlier this year, I almost had a go at roller derby.  I say "almost" because the come-and-try day went so wrong so fast I ended up walking out in a huff.  This was probably a good thing, because it meant I never got to the point where I would, inevitably, have done myself a genuine injury and possibly taken half a dozen other people out with me.

I did, however, learn a bit from the experience.  Obviously the most important thing I learned was "don't do roller derby", but I also gleaned a few other what-not-to-dos when it comes to running a sporting event.  Particularly, there are a few lessons in this mess of fail for running events that are welcoming and accessible for people on the spectrum.

1.  Be explicit in the invitation

The ad for this event said it was open to all ages and levels of fitness and you didn't need experience.  Being a literal sort, I took them at their word.  But when I turned up, I was the only one over 20 years or 60 kilos, and also the only one not in roller derby costume.  I know I probably shouldn't let being the oldest/fattest/most different one bother me as much as it does, but it did send a very clear message right from the outset that I really didn't belong there.

If you're short on space or places or resources and want to limit the team to people who played last year or who already have the skills needed, then do that.  It's your club, your game, there's no rule that says you have to include every random who rocks up.  But don't say "everyone welcome" unless you mean it.  And if there's a dress code, say so.

2.  Find out about your participants

Nobody wants some nosy knob demanding information for no reason.  I once did a reiki course where we were told to ask whether the subject was pregnant before doing anything, but then told it didn't make any difference to what we did.  So why sodding ask?!  But if you're going to send someone hurtling around a stadium on roller skates in very close proximity to other people also moving at speed, it strikes me as prudent to check whether they have any issues that affect, say, their balance, co-ordination or motor skills.

3.  Explain what the hell is going on

I don't really know how roller derby works.  I know it involves a lot of fit young women with names like Kandy Kru$h wearing fishnets and hotpants and skating fast in a circle.  I probably would have picked it up eventually, but I had more immediate problems in that the come-and-try day was more or less anarchy. 

Nobody appeared to be in charge, if there was a schedule or a plan it was a closely guarded secret, and there wasn't even a 'hi and welcome, new people!' talk at the start - probably because they either didn't want or weren't expecting new people.  You just turned up and either sat around chatting or put on the skates that were thrust towards you and started skating.

For a person on the spectrum, this is the shittiest way possible to run an event.  You couldn't design an event more likely to make an Aspie say "fuck this" and walk out, except possibly by adding some jackhammers and a couple of flickering lights. 

And I don't think this is just an issue for people on the spectrum - most people, regardless of their neurology, feel more at ease when they have some understanding of and control over their surroundings.  Having no clear outline for the afternoon and no designated person in charge is fine if it's just a bunch of friends hanging out.  But if it's a public event, the public will be more comfortable and able to participate if they know what the hell is going on.

4.  If you're going to teach, teach

I was given a pair of skates, some knee and elbow pads, and orders to put them on.  It was a chair-free environment so I found a space on the floor, parked myself down and set about figuring out how all these odd plastic and velcro assemblages worked.  Eventually I had myself dolled up like Robocop, and it was time to get up.  Problem:  I have no idea how one is supposed to go from being seated on the floor to a standing position while wearing roller skates.

I'd last worn roller skates when I was about eight, and even back then the roller disco had a row of plastic chairs to sit on while putting your skates on.  And when you inevitably fell over, you crawled to the nearest wall, grabbed the rail and hauled yourself upright through sheer upper body strength while your lower half tried to take off in two different directions.

It obviously can be done, because various other people levitated into a standing position somehow, but I didn't know how and those who did it were too quick for me to follow what they did.  What I needed was a demonstration, preferably a slow one, possibly followed by someone talking me through the movements as I did them while holding my arm so I didn't go arse over head.  What I got was some side-eye for taking so long but otherwise ignored.

It comes back to that question of whether they wanted newbies or not.  If they didn't, they should have just put 'experienced skaters only' on the ad and been done with it.  But if they did, they should have given someone the job of keeping an eye on the newbies and teaching us stuff we needed to know to participate.

5.  Pay attention

Since nobody noticed I hadn't managed to stand up, nobody noticed when I sneakily took the paraphernalia off again, left it in a heap and bailed with a shred of dignity intact.  I didn't lose on the deal, because it cost me nothing but an afternoon and if nothing else I got a blog post out of it (and possibly a few minutes of stand up comedy as well.)  But if you're hosting a come-and-try day because you need new players, having them unhappy enough to walk out after ten minutes isn't a great result.  Paying attention to what's going on means you're more likely to notice if someone's upset, pissed off or needs help.  That means you can intervene before it escalates to the point of them bailing.

Sunday, 28 September 2014

Executive dysfunction and dealing with paperwork

I'm trying to nail down my executive function issues at the moment.  As blogged about recently they've been a bit troublesome lately, and it really is time to find a system that works.  There are two main reasons this executive function business needs to be sorted out: my job, and having a life.

For a long time I was able to make up for the planning and organisation fails that come with executive dysfunction by just working harder.  But that doesn't really work in this new job.  There's quite a bit of planning and running long term projects.  I really like this gig and want to succeed at it.  That means, in the absence of the neurological infrastructure to handle the planning and organisational aspects, I have to find an external system to do it.

I'd also quite like to have a life at some point.  I'm not planning on finding a posse of girlfriends, and honestly don't think romance is a likely prospect any time soon either, but I have started doing a little bit of non-work stuff that involves being around other people and I'd really like that to continue.  That means having time and energy for it.  And having time and energy for important stuff and fun stuff means not wasting it on bullshit.

I'm working on some visual schedule and reminder tools, I'm starting to get my head around Gantt charts for work, and - getting to the point of this post at last - I'm getting my paperwork under control.

I've been carting this little filing box thing around since I inherited it from a former flatmate, but it's taken me a few attempts to find a filing system that works for me.  In the past they've been either too vague or too specific.  For instance at one point I had one folder called "work" which contained everything from my superannuation paperwork to long-finished contracts to jumbled out-of-order payslips.  Consequently when I needed something - my three most recent payslips for a rental application, for instance - I couldn't find them.  Or it went the other way and I ended up with separate folders for every one-off bit of freelancing, which even with the tiny amount of work I did quickly got out of control.

For the sake of clarity in the rest of this post: "folder" = wallet folder used for storing a specific type of paperwork.  "File" = open-sided blue thing with a label on it, which may contain one or several folders.

Over the weekend I attacked the filing box with some markers and washi tape and invested in a new set of folders, and the new system seems to be working.  There are about ten main file headings.  Most of them only have one folder in them, but a few have more - 'income' is split up into work and freelancing, and the tax file has separate folders for tax office paperwork and for receipts I'm hanging onto so I can claim them next year.  Most of the headings are fairly self explanatory - a 'car' one for my registration papers and insurance details, a 'health' one with details of my health fund and a couple of recent bits of medical paperwork, and one for the cat's vaccination and desexing papers.

This photo is really just to show off my washi-tape-and-scrapbooking-paper artistic stylings.  (I've re-used an old folder with quite a lot of writing on the front, so this is how I covered it up.)  Keeping track of manuals and bits of paperwork that come with my various gadgets has been a problem since I moved, because I no longer have space for a dedicated drawer for them all.  Now they've got their own file, with a pretty folder to hold the little ones so they don't fall out the open sides of the file and get lost. 

The heart shaped thingy is a post-it note, where I'm keeping a list of which gadgets' paperwork is in the folder.  At the moment it's only one thing, because the rest is still lost, but as I find it and put it in the folder I'll add it to the list so I can tell at a glance whether what I'm looking for is in there.

And that's part of the problem: this system's only as good as my ability to use it, to remember it exists and to put stuff away where it belongs.

That's why I also have a shallow A4-sized box in a prominent spot on the bench beside the filing box.  It's where I dump paperwork as it comes in - payslips, receipts, stuff to be shredded, any official-type letters that don't have to be dealt with straight away, anything I think I need but don't want to deal with or know what to do with right now.  It all stays there til the box is full, then I set some time aside to go through it all in one sitting, filing things away in their correct folders, putting the payslips in order (they now have their own clip to keep them together) and generally organising like a boss.

I find it easier to do organising and sorting tasks like that in one big session than to keep track of things as I go.  I know myself well enough to know that filing each individual bit of paper as it comes in just isn't going to happen.  But saving it up and tackling it in bigger chunks has worked for me before, and looks like it's going to work now.