Saturday, 13 December 2014

Art galleries as sensory havens

I adore art galleries.  But I only recently figured out why.

It's not (just) because I'm an arts nerd who's into all that weird shit.  It's because art galleries tend to be low sensory environments.  For a person who has sensory issues relating to light and noise, they're very pleasant places to be: quiet, cool, controlled lighting, often with very few people around.  Even if it's busy people tend to be quiet and behave themselves.

To be honest, sometimes I wonder how much of my love of words, pop culture and artsy stuff is innate, and how much developed from books, galleries, films and TV being a welcome refuge from the rest of the world.

I realised this while sitting in a darkened room at the Queensland Art Gallery recently, watching Lara Favaretto's Gummo IV spin and whir.

Lara Favaretto (born 1973) Gummo IV 2012: iron, car wash brushes and electrical motors.  From the Queensland Art Gallery collection.  Image from the Queensland Art Gallery/Gallery of Modern Art website.

It's a series of out-of-synch spinning car wash brushes, which sounds like a joke played by the artist but is surprisingly effective and utterly fascinating to watch.  It's not the usual sort of thing I go for at all, but I sat watching it far longer than I've ever spent admiring any other individual piece of artwork.  (Except possibly Bosch paintings where you have to pore over them for an hour to see all the details.)

Watching it was, for me, a form of stimming.  I'm not usually a watching-things stimmer - I'm more a flapper and pacer - but this thing was incredibly soothing.  After a morning spent trudging around the Brisbane city centre, it was just the pick-me-up my frazzled senses needed.

Sunday, 7 December 2014

The other autism mums

I have been known to point out that a lot of mainstream discussion and media coverage of autism related issues concentrates on the parents of children with ASD rather than we who have the condition ourselves.  But I think there's a group who gets ignored even more.

Not my family: as if we'd all be making eye contact
They're people like my Mum and Dad, Nanna and Pop: the parents of Australia's missing generations undiagnosed, misdiagnosed and late-diagnosed adults with ASD.  They're the "autism mums" whose children are now in their 40s or 50s or 60s or beyond.

They care about their kids as passionately as today's parents.  They faced the same fights to get their kids understanding, respect, a useful education and a place in the world. But they did it all without a diagnosis, without understanding, without the law on their side, without services or resources or respite or backup.  And without any sort of acknowledgement.

They did it while facing blame, prejudice, and discrimination on a scale that we in the second decade of the 21st century can barely imagine.  They did it while being told they were bad parents, "refrigerator mothers", poor disciplinarians.  They did it while being told their children were evil, soft, bad, sinful, worthless, should abandoned in the scrub or put away and forgotten about.

For today's families, getting a diagnosis is usually a turning point in their story.  Things start to make sense.  It's not your fault, he's not stupid, she's not wicked.  It's a neurodevelopmental disability, not a failure or flaw of parent or child.  With luck, it's the point at which services and understanding and a community of people in the same situation start to open up.

But for generations past, that never happened.  My grandparents never knew why their eldest son, a beautiful, intelligent, gentle man who could have gone on to greatness had he been born in Melbourne in 1992 instead of Hughenden in 1932, struggled so much.  The meltdowns, the seizures, the bullying and violence and abuse and isolation he suffered, the waste of that vast intellect and beautiful heart.  They never got that turning point.  They went to their graves feeling they'd failed their child.  Knowing there was something weird or wrong or broken about either their baby or themselves, but never knowing what.  Never getting an answer.

In the aftermath of my diagnosis, nobody reached out to support or connect with my parents.  Our situation - as a family with a member diagnosed in adulthood - is hardly unusual, so it strikes me that this is a gap in the system that needs filling.  I think it's an area where we as the spectrum community in general, and the various parent-run, parent-focussed lobby and support groups in particular, could do better.

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.

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.

Saturday, 30 August 2014

How many Aussies are on the autism spectrum? (And where are they all?)

Some researchers from the University of Queensland have been crunching 20 years' worth of autism research data, and a few weeks ago announced that autism rates hadn't changed in 20 years.

We're not this easy to spot in real life
That's a bold call when the zeitgeist insists our numbers are increasing at an alarming rate.  But Dr Amanda Baxter, from UQ’s Queensland Centre for Mental Health Research, says the analysis proved what a lot of adults on the spectrum have been saying for a long time: it's not necessarily that the incidence has increased, but that we're getting better at identifying people on the spectrum.

“We found that the prevalence of ASDs in 2010 was one in 132 people, which represents no change from 1990,” Dr Baxter says. “We found that better recognition of the disorders and improved diagnostic criteria explain much of the difference in study findings over time.”

It brings up a question I've asked several times, but never had a sensible answer: if I was born in 1980 and diagnosed in 2005, is my diagnosis counted in the stats for 1980 or 2005?  There are people being diagnosed today in their 30s and 40s and 50s and beyond, who couldn't have been diagnosed when they were younger because the condition wasn't recognised as a thing that existed when they were younger. 

I'm interested in this 132 number.  That's less than the 1 in 100 number I've been using - mea culpa, and for the record I got that figure from Aspect

Some maths tells me that means there should be about 470 other people on the spectrum in the city where I live. 

So, where are we all?

There will be a lot who are undiagnosed, either by choice or because they have no opportunity to be diagnosed.  (It can be an expensive and time-consuming business, and can come down to sheer luck.)  If my experience and that of other late-diagnosed folk are anything to go by, they will probably have some sort of diagnosis but it may not be accurate or complete.  Today it might be from anywhere in the DSM - depression, anxiety, AD(H)D, OCD, borderline personality disorder, delete as appropriate - while for older generations it might simply have been an unspecified and uninvestigated intellectual disability.

There will be people who are diagnosed, but keep it to themselves because of the stigma surrounding Aspergers and autism, or just because it's nobody's damn business but theirs.  Often there are good reasons not to disclose, especially if you're looking for work.  But, in a world where autism services start to dry up when you're seven and almost completely disappear when you turn 18, there can be very little reason to be out about it.

There will be people who live independently, who work and are successful in society's eyes.

There will be people who are homeless, who are in the justice system, in the mental health system, in nursing homes, in hostels, in shelters.

And because you can't look at someone and tell if they're on the spectrum we probably walk past each other every day, and don't know.

Saturday, 23 August 2014

Being on the spectrum means...

What does it mean to be on the spectrum?  Or to be Autistic, have Aspergers, be a person with ASD, whatever you want to call it.

It means constant reminders that you're wrong
you're faulty
you're broken
you're not supposed to be here

your poor family deserves a refund
and your parents deserved a different kid
a better kid
any kid who wasn't you

You're a mistake
a burden
a problem
a pity
a shame
a pain in the arse

If you can't forge relationships
you're a bitch
you're stuck up
you're frigid
you're standoffish
you're cold
you're unfriendly
you're unapproachable
you give off bad vibes
you're awkward
you make things weird
and it's all your fault
and always
and forever

If you're under attack from your own senses
you're a whinger
you're a princess
you're demanding
you're unreasonable
you're a fussy bitch
you're making it up
you're making a scene
you're doing it for attention
and it's all your fault
and always
and forever

If you can't work or can't find a job
you're a leaner
you're a bludger
you're a lazy bastard
you should try harder
you should have tried harder
you should have known better
you've wasted your potential
you should have figured it out for yourself
and it's all your fault
and always
and forever

Being on the spectrum means being erased
nobody wants you to exist
so they pretend you don't exist
they talk about children with autism
as though only children have autism
as though we're not here
as though we're not struggling
as though we don't need help
as though our lives
and loneliness
and unemployment
and isolation
and bullying
aren't the lives waiting for those children

Being on the spectrum means you're not seen
(unless your name starts with T
and ends with emplegrandin
and you can be marketed as an inspirational tale of overcoming the odds.)

Your story isn't told
Your voice isn't heard

You don't count
And you don't matter

(Is now a good time to mention that Autism Awareness Australia is doing a survey into service provision and the NDIS?  There's no point linking to it.  It's for parents and carers only.)

Sunday, 17 August 2014

Aspie travel tips

I've been on the road this week.  A colleague and I did a five-day road trip through western Queensland for work, covering a lot of miles and having a great many meetings.  By the end I was really tired - and I've brought home some sort of lurgy - but generally it went really well.

It started me thinking about some travel tips for people on the spectrum: some things I've worked out for myself or learned from others, and a few things I wish I'd thought of in time for this trip because it would have made this week easier.

original by Simon on Pixabay

1.  Plan a workable itinerary

Knowing exactly where you're supposed to be when takes a lot of the stress out of travelling.  The key word here is workable: allow enough time to get from place to place without rushing or stressing, but not so much you're left at a loose end for hours.  (Google Maps has a function that will calculate travel time for you if you're not sure.)  If you're going to need a solid night's sleep every night to recover from stress or sensory overload, factor that into your time budget as well.  If you have to crash for 10-12 hours a night you might get a bit less done, but you'll be fresher, more focussed and get more out of what you do have time for. 

2.  Take as much stuff as you need

Put your oh shit kit on steroids and take things that will help you cope while you're away.  Earplugs?  Sleep mask?  Heavy blanket?  (Motel blankets are usually useless for weight.  They're often not much use for warmth, either!)  Music player?  Your own pillow?  If manky motor skills are an issue, maybe extra clothes so if you spill something down the front of your shirt you have a spare to change into rather than feeling self-conscious and grotty all day.

This works best if you're driving - if you're backpacking or paddling around all your worldly possessions in a small kayak, you'll need to be more discerning about what you take.  And there really is something to be said for travelling light.  But don't let your inner minimalist talk you into leaving behind things that will make your trip more comfortable.

3.  Use Google Streetview to familiarise yourself with your route or destination

Before I set off, I used Streetview to suss out the offices we were visiting and the roads in and out of the various towns we were passing through.  It made me feel more confident on the road, and cut down time spent wandering around lost looking for things.  It also meant an unfamiliar place (some of these towns where places I'd only driven through once before, many years ago when I was a child) looked a tiny bit familiar, which can be very comforting.  Bear in mind Streetview isn't always terribly up to date, but it's usually good enough to be a rough guide.

4.  Blocking out light in motel rooms

In darkness, our homes reveal themselves to be full of little points of light from the clock on the microwave to the little red power light on the TV.  In a motel room all these little lights are condensed into a much smaller space, so if lights annoy you or you need complete darkness to sleep they can be a much bigger problem than they are at home. 

I completely forgot to bring my usual emergency blu-tac supplies on this trip, so motel rooms full of tiny light sources were something of a problem this week. The blu-tac goes over the various little electrical shinies and blocks out the light so you can get some peace.  You peel it off again when it's time to leave, and it doesn't leave any permanent marks.  I tried post-it notes instead, but the lights just shone straight through the paper.  You can also drape a towel over the offending light-emitter, but that wasn't terribly practical with a ceiling-mounted air conditioner.  For a longer-term solution, there are specially made stickers available that cut down the brightness of the light, change its colour, or block it out altogether.

5.  Be comfortable

Physical discomfort is an extra stress and distraction to deal with.  If you can get rid of it or at least minimise it, you can free up more energy to deal with the unavoidable stress of travelling.  Even if it's a gentle little trip and you're having a great time, there will still be some degree of stress to deal with - no point adding to it by wearing those slightly-too-small jeans, or deciding now's a good time to try out high heels or makeup if you don't usually wear them.  Comfortable, sensible shoes and appropriate clothes that fit well will go a long way to helping you feel comfortable while you're away.

This isn't necessarily just physical comfort, but social as well.  If you're dressed for the occasion - I was mostly in meetings, so I was in jeans with a blousey work-appropriate top - you'll feel more at ease than if you're over- or under-dressed.  It might sound shallow and superficial, but I've found it really does make a difference.  And let's be honest, why make unfamiliar social situations more difficult than they need to be?

Saturday, 9 August 2014

Ten reasons to love a timer if you have executive function issues

Executive dysfunction has been getting me down lately.  I've been getting things done, in my own halfarsed last-minute up-til-2am holy-crap-this-is-due-when? way, but can't shake the sneaking suspicion that I'd be so much more productive without the executive function aspects of Aspergers and ADD getting all up in my business.

Whether this suspicion has any basis in fact is anyone's guess.  Maybe my alternative NT self is a powerhouse who'd have taken over the world by the time she was my age.  Or maybe she's just as scatterbrained and disorganised as I am.  Maybe she'd get even less done than I do, without the hyperfocus and splinter skills to offset her innate bone idleness.

 A couple of things have really helped me work with my executive function issues.  If I can't see things I forget they exist, so I make strategic use of noticeboards and whiteboards and my internet browser's homepage.  Large, multi-step tasks overwhelm me, so time spent tearing things down into tiny little baby steps pays for itself when it enables me to actually get started.  And another thing I've found really, really helpful is a variety of timers and alarms to remind me when to do things and help me transition from task to task.

ten reasons to love a timer

1.  Waking up and going to sleep

Left to my own devices, I'd probably stay up til four in the morning and then sleep until two in the afternoon.  If that schedule works for you then you go on with your good night-owl self, but for me it's not conducive to working or generally living a life that involves other human beings.  An alarm to get me out of bed in the morning means I can face the day while there's still some day to face.  Another alarm to get me into bed at a respectable hour is just as important, because without it I'll stay up far too late, probably stuck in a rut doing something pointless like watching old QI episodes on Youtube.  (QI is magnificent, but it's pointless because I've already seen them all.  Several times.)  And if I don't get enough sleep, my sensory processing goes straight to hell and my executive function is worse than usual.

I have these alarms set to go off automatically, so the whole system isn't reliant on me remembering to set them.  The morning alarm is on my phone, which is usually on the bedside table while I'm asleep, and only goes off on work days (because I don't really need to be up and about at half seven on days my presence isn't required in the office).  The night alarm goes off every night whether I'm working the next day or not, and is an offline Chrome app that runs in the background on my laptop, because that's usually where I am at bedtime.

2.  Remembering to eat, drink, and other self-care tasks

I don't know if you remember that post where I shared my weight, but it's fairly obvious I don't have a problem with forgetting to eat.  Forgetting to drink water, on the other hand, is a thing with me to the point I've twice upset my kidneys.  But some other people on the spectrum do forget to eat, or take care of hygiene, or some other part of self care.  Visual reminders can help, as can routines - I remember to drink at work, because part of my morning settling-in routine is going to the kitchen and filling a cup from the water cooler - but something that beeps or pings or pops up a reminder is another way to make sure the essential stuff gets done.

3.  Transitioning between tasks

The thing about autistic inertia is that it's not just trouble starting something, but stopping when you're finished or moving on to something else at the appropriate time.  You might know it's time to change tasks, but making that change happen is really difficult without some sort of outside intervention.  That even goes for pleasurable changes, like leaving work to go home.  It's not about not wanting to change, it's not about whether you like what you're doing or don't like what comes next, it's about the actual act of changing focus.  An alarm or timer can help with that, either on a psychological level by signalling the change or by making enough noise or visual distraction that our focus is physically dragged away from the grains of rice we're counting.

I have a Chrome app that acts as a timer/stopwatch/alarm clock and a timer and alarm clock on my phone, but for short periods (say, an hour or less) I prefer to use a mechanical timer that sits on a shelf slightly out of reach from my workspace.  That way I have to physically get up and turn it off.  If it can be silenced with a click of the mouse, odds are I'm going to do that and then just keep working, because my attention and focus hasn't really shifted.  Having to get up and move to make the noise stop - and I will, because noise bugs me so badly I can't ignore it - is much more effective at pulling me out of whatever highly focussed rut I'm in.

4. Scheduling slack-off time

We're human.  We can't be 'on' all the time.  Playing around isn't just goofing off: it's an important part of childhood development and it's important for adults too.  The challenge is finding a balance between farting around and being productive.  Autistic inertia makes that difficult, and so do our obsessions, which can make time spent with a book or game or object feel like time spent with a dear friend or a lover.  (No, really: I've read about some research that suggested the brain chemicals at work when we're in the throes of our special interests are the same as those active in the brains of people newly in love.  Of course, now that I'd like to cite that research I can't find it online.  Sigh.)

Scheduling 20 minutes to check Twitter, play Angry Birds or just pace up and down with your latest earworm means you can get your slacking off out of your system, leaving you refreshed to get on with more important things without leaving you burnt out or feeling deprived.

5.  Breaking tasks down into do-able chunks

If you have a massive task that looks completely overwhelming, there are two ways you can break it down: by action, or by time.  Breaking it down by action works for jobs which are huge but have a definite end.  Say your massive task was building a house, you could break it down into buying land, having plans drawn up, laying the foundations and so on.  Then those tasks can be broken down into even smaller ones - for instance, 'buying land' can become a series of smaller jobs around deciding your budget, looking at available blocks and making offers.  Eventually you end up with a list of small, precise actions like "call Foo McGoo Real Estate to organise a time to inspect 10 Acacia Avenue on Monday".

But if your task doesn't have an end - running a household or business for instance, where there's always one more thing to deal with - then it makes sense to break it down by time instead.  Then, rather being an overwhelming, insurmountable task that stretches out into infinity it's something to do for an hour or two or eight, with a precise end moment in sight that can make it easier to get started.

6. Reminding you what you're supposed to be doing

Most of my jobs - journalism, writing of various sorts, and now something that could be described as marketing - have involved a good deal of web-based research.  The internet's a gift for those jobs, giving you a quick way to check statistics, past ministerial statements or what sort of fibre is used in the finest calligraphy brushes without having to spend days buried in specialist library collections or make awkward phone calls to calligraphy brush salesmen.  But the internet is also an infinite series of interconnected wormholes, where you can never be entirely sure where the simplest enquiry will lead.  That's why it's sometimes handy to have periodic reminders that you're supposed to be writing a news bulletin or a short story, not a thesis on the history of calligraphy brush making.

7. The Pomodoro technique

The Pomodoro technique ties together a couple of time management techniques I've already touched on, but is different enough to warrant its own entry.  The general idea is you divide your time up into chunks of 20-25 minutes, with 5ish minute breaks in between.  You work for 25 minutes, break for 5, work for 25 and so on and so forth with a decent break of a half hour or so after four blocks of work.  (There's a lot more to it, going into things like to-do lists and visualisation, but that's the basic workflow.)

I tend to use longer blocks than recommended, closer to 45 or 50 minutes, because I just can't get anything done in 20.  Then I break for 10, and use that time to get up and exercise, do some housework, or generally do something physical.  I use a timer both to signal when it's time to stop working and when it's time to start again.  Even if it's just a five-minute break, odds are I'll get distracted by something and three hours later won't have made it back to the original task.

8.  Working out how much you can actually do

It's all very well to set a timer for X long, and say you're going to do Y in that time, but is that a fair and reasonable time to give yourself?  Maybe it's just because I suck at estimation, but I can find it quite difficult to decide how long to allot for a given task.  Timing yourself can help - not in a beat-the-clock, see-how-fast-you-can-do-it way, but just getting a clear picture of how long it takes you to do it at your usual pace.  And if it takes you half an hour to have a shower, from the moment you step into the bathroom to the moment you step out again, you don't have to beat yourself up for not doing it in ten minutes.  Maybe there are places where you could save some time, but maybe that's just the speed you work at. If you know that, you know to allow yourself half an hour for having a shower, and not try to squeeze it into a five-minute gap in your schedule.

9.  Tracking how far you've come

There are lots of ways you can measure performance and improvement, and they'll be very different from task to task.  It might be how many items you were able to tick off your to-do list, it might be running faster or further or longer or lifting more weight, it might be producing more work, or at a higher quality, or more quickly.  A timer or stopwatch can help with some of those.

Checking in on your performance matters because it lets you see how much you've improved - that you're getting more done in a given time, or a task is being done more efficiently.  In a world that often feels like an endless parade of one damn thing after another, the smallest achievement is something to celebrate.

It's also a chance to see if something's wrong.  If suddenly things are taking longer or you're not getting as much done, it's helpful if you can identify that and track it back to a cause.  The cause might be internal - you're ill, you're bored, you've just gone through a relationship break-up and couldn't give a shit right now - or it might be external, something that can be addressed and hopefully fixed.  At one of my past jobs, my productivity plummeted when some technical shenanigans left us with two radios playing out of synch in the office, so the sound out of one speaker was a fraction of a second behind the other creating an awful echo.  I was able to track a lot of stuff, from not getting work done to emotional over-eating to panic attacks, back to that change and the sensory issues it caused.  (That wasn't fixed, and I ended up leaving that workplace, but that's a story for another time.)

10.  A sense of control over your time and your life

We often don't have a lot of control over our lives.  But if you can take control of your time and make your own conscious decisions about how you use it, you can feel a little more like you're steering the ship, rather than being tied to the mast while it sails off captainless.  Whether you're in paid work, studying or sorting out your DVD collection, making a decision about what and when and for how long can help you feel more in control of what you're doing.  That in turn can improve your motivation, your attitude to the task at hand, and your ability to get stuff done.

Sunday, 3 August 2014

Fan diagnoses: finding our own fiction

TV set on chair
One of the great joys of fiction is identifying with the characters you meet in your book or movie or television show.  Their experiences become our experiences, and we feel their triumph and heartbreak as keenly as we feel our own, and their adventures can even influence our own real-world attitudes and actions.  Through our fictional travels we get to experience all sorts of wonderful and otherwise impossible things, in the company of people who are - for all that they might be witches or wizards or hobbits or aliens or residents of a far-flung futuristic dystopia - just like us.

But what if there is nobody like you in the books you read or the movies you watch?

It's not just that explicitly autistic characters in fiction are few, but that when they do exist they're sometimes little more than clinical criteria squeezed into the shape of a child to give the neurotypical characters something to bounce off.  Or they're genius savants, which relatively few real people on the spectrum are, or they're monsters or changelings or other mysterious Otherish creatures.  Realistic, sensitively-depicted autistic and Aspie characters do exist, but are mighty light on the ground.

Fortunately, there are any number of characters that aren't explicitly on the spectrum but display enough autistic tells that we can take them and claim them as our own.  They might have been written as Aspie in the first place, it might have just happened by chance, it might be obvious or you might have to squint and use a bit of creative interpretation, but fan-diagnosis of fictional characters is alive and well.

Why fan-diagnose a character?  Can't we enjoy them without trying to presume their neurology?

Well, why not?

Identifying with fictional characters is valuable.  Even leaving aside the sheer enjoyment to be gained, it can teach empathy, and affect the way we see ourselves and even our physical abilities.  If we're identifying with the sort of characters we'd like to be in real life, it can bring us a bit closer to being better human beings.  It's also a form of validation: the inclusion of people like us in popular culture is a cultural acknowledgement that people like us deserve to exist.  If that acknowledgement isn't forthcoming, claiming those characters as our own can be a symbolic gesture.

There are well-written characters explicitly on the spectrum, developed by both autistic and non-autistic creators.  But the neurodiversity community isn't a little walled garden off to one side of the rest of society - we're part of the mainstream world as well, whether or not the mainstream realises it or likes it.  Some of us pass, some of us don't.  Some of us are diagnosed, many of us aren't.

And the characters we love and identify with are the same.


A few of my personal Aspie headcanon, i.e. the ones I can think of off the top of my head:

Jonathan Creek
Sherlock Holmes, in most of his many versions.  Mycroft too.
Hermione Granger, although I haven't read/watched Harry Potter in years and may be misremembering
Linda from Press Gang (now there's a blast from the past!)
There's a case to be made for Jeeves, but his skill at interpersonal prediction gives him a no vote from me.

What are yours?

Saturday, 26 July 2014

The Oh Shit Kit: don't leave home without it

I don't know know I got by before I had an Oh Shit Kit.  It's saved my hide more times than I can count, and comes with me almost everywhere. I think everybody needs one.  They're especially handy if you have sensory issues, or pain issues, or anything that might flare up and cause trouble while you're at large.

It's not a thing you buy over the counter.  There are no rules about how big or small it is or what it contains.  It's a pack you put together yourself, containing whatever you're likely to need to deal with whatever you're likely to face while you're out.  It might live in your handbag or backpack or the boot of your car, but it doesn't live in the bathroom or under the kitchen sink - it's no use if you leave it at home. If you're of the handbag-using persuasion you probably already carry an assortment of tissues, band-aids and other handy items around with you.  This takes that idea a step further and makes sure everything you'll need is in one place, where you can find it when you need it.

It's also about making a conscious point of thinking about what you need and having it with you.  Maybe that level of organisation comes naturally to some people, but my wobbly executive function issues means it certainly doesn't for me.  That's how I deal with most of my executive function issues - having an explicit system for it is the only way it's going to get done.  Making a point of filling up the kit every month or so to replace anything you've used also avoids that terrible moment when you have a splitting headache and realise that packet of panadol you've been carrying around for the last six weeks is empty.

Here's my kit:

It contains:
  • Band-aids
  • Earplugs
  • Tissues
  • Soap, in a wrapper so it doesn't crud up everything it touches
  • Scented lip gloss, to sniff or smear under my nose when smells are getting to me
  • Panadol
  • Pills for indigestion, motion sickness, and muscle pain

Everything but the tissues and soap fits in the red tin, which was a present from a friend who appreciates my fascination with the story behind the "keep calm and carry on" poster. 

Yours might be entirely different.  It'll be dictated by what you need, and limited only by your imagination and the amount of space you have to work with.  Other stuff that might be handy:
  • Spare tampons or pads
  • Sunglasses, for dealing with visual overwhelm
  • Stim toys
  • Paper and pen, if verbal communication can be difficult at times
  • Autism alert card or the like
  • Epi-pen
  • A bandage
  • Snacks
  • Water 

With the best planning and preparation in the world, sometimes things just go wrong.  We get hurt.  We get sick.  Timetables fall apart.  Things and places that have never caused sensory trouble suddenly do.  There's no getting around that short of never leaving the house again, which would be a pretty crap way to live.  But a little kit like this can at least make the inevitable minor catastrophes a little more manageable.

Don't leave home without it.

Saturday, 19 July 2014

You can only do what you can do

Guess what I found jumbled up with my tax paperwork?  The sensory profile I had done a couple of years ago:
example of a sensory profile report
example of a sensory profile report
I'm going to hang onto it, and when I've got enough space for a big noticeboard, it's going up on it.  Not because I need to refer to it or because it has any particular sentimental value, but because it's a tangible, professional report that quantifies how my sensory processing differs from the norm. 

I keep it for the days when I feel down about my ability to get stuff done.  For the days when I wonder if I was just a bit smarter or worked a bit harder or tried another productivity technique or got up earlier or took different vitamins or got over myself, I'd be normal.

That's a thing that happens when your disability's invisible, I think, especially if like me you weren't diagnosed until adulthood.  When I was a kid the narrative I lived was that I was fairly bright and destined for a certain kind of life.  Then I grew up, and between Aspergers and depression that life didn't happen.  Bits of it did, and bits of it still might, but the overall narrative is very different.  And, irrational as I know it is, I feel I've rather let the side down.

That's where this thing comes in.  It's a reminder that I haven't just failed to launch, I'm not lazy or fussy and I'm not wasting my life.  I'm doing the best I can with what I have.  It's just that what I have is quite different from what most other people have, and different from what I thought I had when I set out on the journey.  At the first flat tyre, I opened the boot and instead of a wheel brace and a jack, I had an oud.

It's worth remembering that.  Because I still spend a lot of time blaming myself for not changing the tyre, even though I know I don't have the best set of tools for the job.

Sunday, 13 July 2014

That dangerous moment when everything's going well

Life is great.

Yay! Things are great! Don't screw it up
No, really, right now things are going exceptionally well.  I've got a meaningful job with enough hours a week to earn a living, but not so many that I don't have any energy or mental resources for a life outside it.  I'm writing and arting and have a tiny but slowly growing bit of community involvement going on.  I'm fat and I spend too much time online, but I'm active and I have some worthwhile physical-world stuff going on too.

This is a critical point.  It's here, if I'm not careful, that it all turns to shit.

When things are going as well as they are now, it's very tempting to take on a bit more.  Maybe find a bit of weekend work to supplement my income, or make a genuine effort to pick up some freelancing on the side.  Move out of the house I'm sharing with family into my own place.  Launch a substantial creative project, get involved in a club or a community group, sign up for a class.

But the reason I'm doing so well right now is that there's about as much on my plate as I can handle.  Adding a bit more - an extra job, an extra commitment, maintaining a whole place by myself rather than just my bit of a shared load - means scraping a bit of something else off, or the whole plate will overbalance, fall down the front of my white shirt and land in an inedible mess on the carpet.  That's what happened when I left full-time work a year and a bit ago.  I was producing good enough work and being productive and all the rest of it, but the job plus living alone and being a long way from my family plus the various other stuff I had on didn't leave any energy for anything else, and I was getting more and more burnt out until I reached a point where I couldn't do it any more.

Just because someone's coping really well with n days a week of work or school or other things doesn't mean they'll be able to handle n+1.  Maybe the whole reason they're coping so well is because n is their sweet spot for getting stuff done without burning out.

The other risk is that you're doing so well you forget about the importance of your support structures and coping mechanisms.  So you get lazy about your diet or your health care or your relationships or you physical activity (which I do actually do, for all that I talk smack about how much I hate sport) when those are the very things that are making it possible for you to do as well as you're doing.  Those start to crumble, and the whole lot comes crashing down.  Yes, going for a walk sucks when for nine months of the year it's so hot the water out of the hose will scald you, and the other three it's perfect weather to lie in the sun with a good book.  Yes, it sucks to be making a constant effort to eat enough vegetables when you live with people who do just fine on a diet of soft drink and heat-and-eat spring rolls.

But life's a series of trade-offs and negotiations.  There's no weakness in knowing your limits, or having to make extra effort at things other people don't have to, in order to deal with issues other people don't have.  The balancing act often wobbles.  Life changes, and this sweet spot won't last forever.  But with a bit of maintenance, I can enjoy it while it lasts.

Saturday, 5 July 2014

Who are these people, and why do they all look the same?

I love my TV, and a lot of my obsessions relate to TV shows. But my taste in programs is a bit odd and very specific, for reasons I've never entirely been able to work out.  Now, I think I might have cracked it: it comes down to a mix of things like not relating to theoretically relateable characters and situations, but a big part of it is sheer faceblindness.

Photo by Pacian on Wikimedia Commons
I have a list of specific programs I enjoy and can watch over and over again, shows like The Goodies, Top Gear, Doctor Who, QI, and Dangermouse. Also the Marx Brothers' films and The Beatles' Yellow Submarine, which aren't TV shows but I've only ever watched them on TV or computer so I'm counting them. Then there's Jonathan Creek, which I simultaneously love and hate; I can watch it over and again, but find myself skipping over the long Jonathan-less scenes and the more cringey One Foot In The Grave style humour, which isn't really my thing at all.

Then there's the stuff that just doesn't interest me at all: drama and crime in particular, most sitcoms, and absolutely every soap opera ever.

Part of that is because soapies are largely about relationships.  Even though I understand and can navigate relationships a lot better now than I used to, I still find them hard work and kind of baffling.  So me watching a show full of people emoting confusingly about a series of complicated interpersonal matters is a bit like expecting an NT person to relax with a nice sheet of quadratic equations or some complex legal arguments to untangle.  Possibly while the paper's on fire.  It's just not fun.

The other part, and one that perhaps plays a much bigger role than I've ever realised in what telly I like, is faceblindness.  I've known for a while that I sometimes get guests on panel games mixed up, even when they don't really look alike at all except in the general sense of being adult human males.  Now I'm realising that a common thread through all the shows I like is characters that are very easy to tell apart.

Tim, Graeme and Bill of The Goodies not only look very different from one another by nature, but wore very different costumes as well.  The Top Gear guys each have a distinctive look. The Marx Brothers looked very similar out of costume, but in character are unmistakeable.  (Except Zeppo.  That poor guy could be anyone.)  Jonathan Creek stars Alan Davies' hair. 

Compare that to the sort of thing you get in crime shows or gritty modern dramas, which tend to feature a series of dark suits, police uniforms, white coats and little black dresses.  Is that guy on screen now that one guy from before?  Is he cheating on his wife, or is that the same woman in a different top?  Who the hell are these people?

In a discussion of standup comedy on Reddit, someone described open mic nights as "a generic mass of sweaty 20-something white male, telling dick jokes and fumbling with the microphone stand".  (That's paraphrasing, because of course now that I want to use that quote I can't find it, but that's the general idea.)   That's kind of how this feels - given that there are mobile phones out there with better facial recognition capabilities than I have, a lot of TV just starts to blur together into a big samey ball of anonymous humanity.

True stories of televisual faceblindness: in an episode of Jonathan Creek, the plot hinged around the physical similarity of two characters.  I didn't really think they looked that alike.  I still don't, even though I now know they were played by the same actor.  And when Bill Oddie shaved his beard off halfway through Earthanasia, I genuinely didn't recognise him and had no idea who this random dude was who'd just walked onto the set.  And I'm a really big fan of Bill...

...when I can recognise him.

Saturday, 28 June 2014

It's OK to be an ugly duck

The story of the ugly duckling has been solace for generations of late bloomers and picked-on nerdlings.  It’s an 1843-vintage “it gets better” for the awkward, the spotty, the wearers of dated hand-me-downs and those consistently called on last for team sports.  But when you stop to think about the message behind the story, it’s really pretty depressing.

At the end of the story the ugly duckling leaves behind its past as a gangly avian lint-bunny, and moults into an adult swan to take its true place in society. All the various barnyard animals that made its cygnethood miserable are left with swan egg on their faces as the lumpen little thing they mocked transforms into something regal and glorious.

But the duckling having been a misplaced swan all along means the message isn't...

Be kind to others, because everyone deserves respect regardless of their looks or abilities


Be kind to others, in case they turn out to be posh, pretty or powerful 

What if the ugly duckling had just grown up into an ugly duck?  One of those hybrid things perhaps, that are part Mallard, part Muscovy, and all wrong?  Would picking on it have been totally OK then, because it didn't grow up to be anything special?

Of course not: every creature deserves kindness, regardless of how pretty it is. 

But there's this lingering idea that if you have a disability or illness or difference, you have to be extraordinary in some way to 'earn' your humanity.  You need some metaphorical swan's feathers to offset the inconvenience of your presence or the cost of your care.  For Aspies, it might be the assumption that we all have savant skills or academic brilliance to make up for our sensory or social struggles.  Bipolar-type conditions seem to come with expectation of creativity or genius or both, and some people talk up schizophrenia as a spiritual experience.

Some people on the spectrum do have amazing abilities, conferred either by their neurology or through hard work and dedication.  And some of us don't.  Some of us are just chilling in the middle of the bell curve.  We're doing our best, but our best just happens to be unremarkable, ordinary and average.  Just like most other people's best.

And that's OK.  Because everyone matters, and everyone deserves respect and kindness.  Even the ones who don't grow up to be swans, or have a fairy godmother to shower them with nice stuff, or turn out to be a long-lost member of the royal family.

Even those of us who are just ugly ducks.

Saturday, 21 June 2014

Observations on people walking in public

You're walking down the street, arms a-swinging, feet a-stepping, and all's right with the world.

Oh Gods, not this again
Then you see, up ahead, someone walking slightly but noticeably slower than your natural pace.  Probably a group of them, walking three abreast. Soon enough you've caught up to them, likely as not right where the footpath narrows and you're stuck behind them as they able along at a pace just slow enough to feel uncomfortable and unnatural.

What do you do?

Maybe you can see a potential overtaking space up ahead, so you speed up so you're close enough to be able to shoot through when the space appears, without getting so close you're right up behind them like some sort of creeping creeper who creeps.

Maybe you put on your Busy Person With Places To Be face, cough an 'excuse me', elbow through and get on your way.  Protip: this works well if you're in a suit or the sort of thing people wear while carrying briefcases.  It's a much harder move to pull off in scruffy jeans and a tour t-shirt for a band that split up in 2003.

Or maybe you pull a leaf from the book of what to do when someone else is standing in front of the supermarket shelf you want to look at.  That's the point when you feign deep interest in something on another shelf and wait for them to move so you can get to what you're after.  So, you stop for a bit to admire the display in an empty shop window or count some marigolds on a roundabout, to put some space between you and them.  Then you set off again, catch up again, stall again, set off again.

And then run into them, because while you've been scheming how to get past them you didn't notice they'd stopped to have a chat in the middle of the path.

Tuesday, 17 June 2014

News and updates and random personal ramblings

Customs House, because a post this self-referential
deserves a local landmark
Things are really moving around here...

1.  I've been talking about turning this blog into a book for ages, and now there's a definite plan for that.  I've decided against a book as such, and am instead putting together some resources on specific Aspie-related topics.  They'll be a mix of new content and material from the blog, expanded and updated.  The first one is on sensory sensitivity, and will be out soon - August, with a following wind.

 2.  Work's been really surprising.  I wasn't expecting this gig to last this long - it started as a fixed-term contract - but it has and it continues and it's great and I love it.  I still have terrible panicky moments (that sometimes last for days or weeks) where I'm sure I'm hopeless and at any moment they'll realise how woeful I am and kick me down their many flights of stairs and out the door, but they're happy with what I'm doing.  I hope it lasts.

3.  I was accepted into the uni course I applied for, but I've deferred until the new year.  I'll have a better idea what's happening with work by then, plus we'll hopefully know more about the various political and financial uncertainties surrounding tertiary education.  I'm still not entirely convinced I'm cut out for the field I've chosen either, so deferring gives me six months to get over my existential crisis and figure out if I really want to go through with it.  I was when I applied, but now I'm far less sure.

4.  That campaign of getting out more and making friends that I launched back at the start of the year faltered - as you might have guessed from the way I suddenly didn't write any more about it - but things are going pretty well on that front now.  Mum and I have found a pub trivia night that doesn't suck (some of the bigger venues use really crappy over-loud PA systems with  distorted fuzzy sound that does my head right in thanks to my sensory troubles with sound) and I'm starting to put some feelers out about other stuff too.  Yes, I'm still a big bundle of anxiety and shyness and guilt and neurosis, but I'm at a point now where I can be that and still have a life.

I'm calling that a win.