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?