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?