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.

Sunday, 21 September 2014

What if we thought about this whole society thing the other way?

What if a person with no friends or no support network was seen as a failure of society rather than the individual?

What if it was their local community that was judged and shamed for allowing that situation to happen, rather than the individual for being friendless?

I found this searching Pixabay for "community".  I have no idea what it's about, but it's too good not to share.

What if flapping or ticcing in public wasn't judged, but tutting, staring or mocking the flapper was?

What is people thought about disability accessibility, from shops to events to websites, not because it was the law but because it was the decent thing to do?

What if a shopping centre or event not having a quiet space or a sensory-friendly room was as unthinkable as not having a toilet?

What if we were as outraged about the domestic violence that's killing an Aussie woman a week as we were about theoretical terrorist beheadings?

What if community leaders, from mayors to the Prime Minister, were considered personally accountable for the suffering, poverty and injustice in their jurisdiction? 

What if we cared about the welfare of human beings as much as the welfare of the economy?

Tuesday, 16 September 2014

Wanted: one executive. Must function.

At some point in the five years* I've been blogging about Aspergers, I've argued that the sensory issues are a much bigger problem for me than the social stuff.  It's not that I don't struggle socially - I somehow ended up solo at a free-range alcohol-based social event on Friday night, and pretty much just sat with a random group of strangers listening to their conversation like some sort of creeping creeper who creeps - but the sensory stuff is an even bigger problem.  

Also, the sensory stuff causes more of the social issues than is usually acknowledged.  If you literally can't hear what someone's saying over the roar of background noise you can't filter out, you're going to struggle to hold up your end of the conversation.  If you don't recognise the shapes your own face and body makes when you're happy or sad, you're going to struggle to recognise those shapes in others.  And if you're in genuine physical pain you're just not going to be up for socialising at all.

However, I'd now like to retract my claim that sensory dysfunction is the bane of my existence.

Yes, the sensory stuff is a bigger problem than the social issues.  And yes, it is a complete pain in the arse and something I have to plan my whole life around, like that episode of Degrassi where the kids had to carry an egg around for a week to simulate having a baby. 

But the issue that's doing even more to really screw up my life is bloody executive dysfunction.

Executive function: getting (and keeping) your ducks in a row
Executive function is, at its heart, your ability to get shit done.  It takes in various different kinds of memory, the ability to prioritise, to break tasks down into steps and to think sequentially.  It encompasses time management and organisation - not just in the extreme sense of working three jobs while studying full time or singlehandedly running a music festival, but even the basic memory, planning and execution needed to keep yourself fed, watered and clean. 

My executive function really sucks.  It may not be purely an Aspergers thing - I also have ADD, and depression which can interfere with getting things done for even the most neurologically blessed person.**

When I was younger - childhood, teens, even into my early 20s - I was able to coast through a lot of the executive function shambles on the back of being fairly intelligent.  Looking back at my uni work, I really didn't know how to conduct research effectively or construct an essay, and when I had an opinion or an insight they were probably toe-curlingly immature, but I did well mostly because I was able to spin pleasing verbal arrangements made up of the sort of words and concepts the lecturers were using.  I don't know if you'd call it echolalia, but there was certainly something echo-scented going on.

This wasn't pure laziness.  This was what I did to survive.

I think there were two main things going on here.  The first is that I was very literal minded (still am, of course, but not to the same degree) and had trouble applying my existing knowledge and experience to new situations.  So, even though my high school history teacher taught me a template for writing a short essay in response to an exam question about the Aztecs,*** it didn't occur to me to apply that same technique when it was time to produce 5,000 words about symbolism in gothic fiction.  That doesn't mean I just sat down at the keyboard one afternoon and farted out 5K of genius whimsy: I worked bloody hard.  I did at least as much work as the students who had a clue what they were doing.

Also, the effects of Aspergers, ADD and depression were really ramping up as I became an adult.  I was burning vast amounts of energy dealing with sensory issues I didn't even realise existed.  I was becoming fully aware of how different I was from my peers, as they started to have serious relationships and babies and travel and lives that meant something, and that was incredibly distressing.  And of course, a diagnosis was still at least five years away, so as far as I or anyone else knew I was just lazy or stupid or... chose to be that way for some ineffable reason of my own.

But while I was stumbling through on raw intelligence and dumb luck, my peers were learning to plan and manage their time and use systems and call in favours and get things done.  Their executives were clocking on.

Now my life's reached a point where I really need a functioning executive.  Work has taken a turn towards long term project management type things, I'm involved in a sort of community event in a vaguely organiserish function and need to keep that together or I'll let others down, there's family stuff that needs to be planned and at some point it would be kinda nice to have a life.  But I genuinely don't have the neurological infrastructure for the degree of organisation, planning, strategy and general getting-shit-done skills that most people do.  And I also don't have as much experience at doing it as I probably should by now, because I've been lucky enough to just wing it with a few book smarts and a hell of a lot of (inefficient) work.

To be continued...

* I know, right?  How did that happen?  And why hasn't anyone bought me a cake?

** Although it's hard to argue that anyone with depression is neurologically blessed.  Work with me here.

*** I'm not sure why our history teacher was the one teaching us this, or what the hell we were doing in English at the time.****

**** These asterisks are a pretty good sign that I've got some funky ADD stuff going on as I write this.  Never mind being able to manage it, it's a relatively recent development for me to even be able to identify it as it's happening.  Yay me, I guess.  Only 20 years late, as usual.

Saturday, 6 September 2014

Routine and stability and control

What is it with Aspies and a love of routine?

Today my Firefox borked itself so thoroughly that I had to re-install the whole thing from scratch, losing all my bookmarks, history and saved passwords. It was a minor inconvenience, fixed in an hour and the only lingering annoyance is the loss of all the links I had bookmarked for this month's newsletter.  If that's the worst thing that happens to me all day, I'm doing really well.

Repetition can be beautiful
So why am I so upset about my browser's treachery, and unable to settle and focus and get on with the rest of my day?

I think a couple of things are going on here.  One is inertia - the workflow I had planned for the day has been disrupted, and I'm having trouble re-finding my groove.  Another is my tendency to latch onto technical issues and broken things and waste altogether too much time trying to figure out what went wrong and fix it.  This may be some variant of the Aspie obsession thing, or it might just be my nature regardless of my neurology.

But the one I'd like to pick apart is this love of routine. 

Unexpected changes to routine really throw me.  Even minor ones like this, or happy ones like an unexpected visit from a friend.  I think a big part of that is the loss of control (or the illusion of control, anyway).  I like the feeling of control and stability that a routine brings, for a couple of reasons:

It helps me handle sensory stuff.  If I know where I'm going, what I'm doing, and what the environment's going to be like, I know what the sensory challenges are going to be and can prepare for them.  Add an unexpected brass band or fire drill, and that all changes.

It helps me plan how I'm going to spend my energy.  It's not that I start the day with any less energy than anyone else, but I burn through more of it coping with sensory stuff, wading through executive dysfunction, and having to do social stuff manually that most people do automatically.  The end result is I don't, for all practical purposes, have as much energy to spare on spontaneous hijinks.

It helps me know what the hell is going on.  Because I miss subtext, I'm not as up on pop culture as you'd expect, there are chunks of shared cultural knowledge I missed out on growing up, and I am at the end of the day still an Aspie, sometimes I just don't get stuff.  Sometimes I know I don't get stuff, and I'll nod and smile and hope the situation ends quickly before I have to run away.  But sometimes, and it's quite scary, I'll think I understand stuff and only realise later that I didn't.  Story of my life, really.  But I don't like that feeling and would prefer to avoid it - and sometimes that means avoiding certain situations outside my control.

It lessens the risk that my executive function will fall apart completely and something important won't get done.  Even with a routine, calendar, checklist and multiple whiteboards things still sneak past me sometimes, and chaos only adds to that.

Everything's fine now - my browser's working again, the lost links have been recovered by trawling through my Facebook posts and some help from Twitter, and everything's back on track.  Let's hope tomorrow is even better.

Or at least, more predictable.