Sunday, 24 February 2013

Autistic people should...

Autistic People Should is a flashblogging project, aimed at changing some of the rather alarming autofill suggestions that Google currently supplies if you type that phrase into the search box.  It's potentially a reflection of a wider negative perception of autism throughout the zeitgeist, which is worrying and rather sad.

I'm a little late to the party because my executive functioning is a bit bung at the moment, but here are my contributions:

Autistic people should be central to the discussion of what autism is: I have seen neurotypical "experts" argue that we aren't reliable sources of information on autism because our supposed reduced self-awareness and communciation skills makes us unreliable witnesses.  This is nonsense - everybody is the world's foremost authority on what's it's like to live inside their own body - and this argument is condescending, othering and infantilising.  I've lost count of how many autistic people have pointed out we don't lack empathy, we just express it differently or struggle to express it at all.  But "lacks empathy" is still one of the key stereotypes surrounding autism, right up there with savant skills and being played by Dustin Hoffman.

Autistic people should get the same respect and accomodations as any other person with disabilities: I like to think we've moved past the point where a person using a wheelchair would be told to plan their career around places they're physically able to access, or a guide dog user around workplaces that allow animals.  But I was told, only last year, that if I can't handle the noise levels in a newsroom I shouldn't be working there.

In some workplaces "disability access" really just means "wheelchair toilets".  If your needs can't be met with an off-the-shelf solution, preferably installed one weekend by a tradesman and never mentioned again, they're written off as too hard.  Disability access isn't about wanting special treatment, it's about wanting the same treatment - a workplace where you can do your job without being in constant pain.

Autistic people should be heard: A big chunk of the public discussion about autism is dominated by people who aren't autistic - experts, parents of children, doctors, specialists.  There should be a place for autistic voices in that discussion as well.  But as an autistic blogger, I've been told to shut up many times.  Sometimes it's parents of autistic children arguing that I don't 'speak for their child' even though I've never spoken or claimed to speak for anyone but myself.  Sometimes it's other autistic people, either arguing that I'm too high fuctioning and 'not autistic enough', or that I'm too low functioning and just make things complicated, that I 'do autism wrong'.

There's room at the table for all of us.  The 'table' is a theoretical concept rather than an actual table, so it's not as though we can only fit so many chairs around it.  There's room for everyone's voices.

Friday, 22 February 2013

Faceblindness

This is Jack Dee:

And this is Lee Mack:

You will notice that they look nothing alike, except in the general sense of having two eyes, in a line, with a nose below that and then a mouth a bit further down.

So how did I manage to watch QI for ages and think they were the same person?

And it's not because of their similar-sounding-but-reversed names, either.  I've done the same thing with Phill Jupitus and Johnny Vegas.  (I know, I know: I'll turn my fangirl card in at the door.)

Faceblindness - prosopagnosia to throw a medical term at it - is a reduced ability to recognise individual faces, and something that often comes up in relation to Aspergers.  I'm not honestly sure how much it affects me.  I frequently don't recognise someone if I meet them out of the context where I usually see them, or do recognise them but only slowly and with a degree of conscious effort, but I don't know whether that's actual faceblindness or related to trouble applying known data to new situations.  

My own faceblindness is fairly mild and intermittent.  Mostly I'm not too bad at identifying people, but every so often something will come up that reminds me that my IDing skills aren't entirely reliable.  As a kid, there was a lady who worked at two shops on different sides of town, and whenever Mum and I went into either shop, she was always there.  Yes, just like Dee and Mack, it was two completely different people who probably didn't even look that similar.  My mind just decided to connect the two for reasons best known to itself.

So if someone you know doesn't acknowledge you as you pass by, or calls you the wrong name, please try not to be offended - they might be snubbing you or just have a rubbish memory, or they might have a brain that plays tricks with the apparently simple business of recognising others.

Wednesday, 13 February 2013

Nice girls don't flap

I've written and rewritten this post half a dozen times, binning a series of ideas that just didn't click, until this Facebook conversation inspired by recent discussions of  'quiet hands'.

It's about stimming, and in particular, the push from well-meaning neurotypical folk of the therapist persuasion to prevent it.

Stimming can be stopped, sometimes, for a while, just like you can put your finger over the end of the hose and stop the flow of water.  But just like the hose will eventually explode off the tap and shoot water everywhere, the constant vigilance and concentration it takes to suppress a stim builds up like pressure until it explodes in a full-scale meltdown or breakdown.

Stimming's a release valve.  When I'm overloaded with sensory bombardment, stress, or emotions I don't know what to do with or how to process, stimming helps.  A warm shower, a cup of tea, a nice rock, and I'm ready to face to face the world again.  It's also a means of self-expression.  My 'happy' flap is different from my 'thinking' flap is different from my 'distressed' or 'overwhelmed' flap.

But stimming doesn't look 'normal', so there's a lot of pressure to not do it.  Even though it does us no harm (and I mean general, harmless stims here, not self-injurious behaviour which is a topic for another time) we're encouraged to suppress it so we can pass.

But supressing stimming and other autistic tells doesn't stop us being on the spectrum.  Learning to play the role of a neurotypical person is not the same as 'cured'.  If you read through the comments in that Facebook link, you'll find references to people being told to stop stimming and be "nice" - the implication being that stimming isn't "nice".

Nice is insipid.  Nice is bland.  Nice is homogenised and allergy-free.  Nice is pureed for ease of consumption.  Nice is the pale pastel print of a basket of flowers in a hotel room.  Nice is inoffensive, but it offends nobody because it means nothing to anybody.

We tell people to "be nice" when what we mean is "be invisible". Stop doing that thing, stop having that opinion, stop disagreeing with me, stop having needs, stop existing in a way that's different from how I exist because it's making me uncomfortable.  Be nice.

Don't be nice.

Be amazing.  Be outspoken.  Be brilliant.  Be passionate about your thing, whatever thing thing is.  Be a wonderful mixture of starstuff and spirit, an irreplaceable tangle of DNA millions of years in the brewing, available now for this life only.

Be who you are.

Monday, 11 February 2013

Monday muster

So what's all this, then?  I'm trying out a 'natty stuff I've seen lately' roundup, an idea stolen from The Bloggess' elegantly titled regular feature Shit I did when I wasn't here.  It's partially to share some of the snazzy things I've spotted around the web, and partially to share Aspergers-related news and opinion pieces.

This is not a bunch of flowers:

Crossaster papposus 2

It's a close-up photo of a starfish, from the lens of Russian biologist and photographer Alexander Semenov.  Read more on This Is Colossal, or visit Semenov on Flickr.  

For more aquatic awesomeness, check out this story of the goldfish owner who made a little bouyant harness for his disabled goldfish to give it more freedom of movement, and even feeds the little fellow by hand.

You've heard the old line about property being theft, but it turns out the game of Monopoly is theft in a more literal way than you might imagine.  In other Monopoly news Hasbro is binning the iron token which nobody ever wants to use anyway because who wants to be reminded of housework while they're playing boardgames?  They're replacing it with a cat, because kittehs.

This is not a Steampunk cosplayer:

Portrait of Felix Nadar (1820-1910), Photographer and Aeronautical Scientist
This is photographer and scientist Felix Nadar (1820-1910).  The photo's from the Smithsonian Insititution's collection on the Flickr Commons - click the image to visit the original.

Which country's flag features an AK-47?  Which country has the world's only non-rectangular flag?  Find out with this guide to obscure flags.

In the spirit of The Incredible Machine and Rube Goldberg, check out this cute animation.  No idea what it's spruiking, but it appears to be a Dutch homewares sale.  Never mind that, it's really clever.

And finally, I think it's time I got my Marx Brothers obsession rocking again.  I love these guys:



And I can't embed it, but here's a clip of Harpo I'd not seen before, in full glorious 1950s colour, from The Story Of Mankind: Isaac Newton feuds with an apple tree.


Thursday, 7 February 2013

Minding your mind

Reflection of clouds on Soap LakeClouds can be bright and fluffy or dark and ominous.  The darkest can thin out and blow away without coming to anything, the prettiest can turn nasty and dump a hailstorm on your head.

Clouds make quite a good analogy for our thoughts and feelings.  Just like the same water molecules could form a thick, gloomy cloud or something fluffy and harmless, similarly the same situation can leave one person dour and glum while another cheerfully bounces off the walls.

But while we can't change the core of who we are and how our minds work we can, to an extent, change our thinking.

I'm not going to peddle the 'all suffering comes from a bad attitude' line here, because I don't believe that.  The universe is not a fair place, and bad stuff happens to good people regardless of how shiny their thoughts.  But there are things we can do to make us more resilient against the crap that life throws at us.

Even with my ropey self awareness, I can tell a difference in my outlook when I'm overtired, haven't had enough physical activity and haven't eaten well, as opposed to when I'm properly rested, fed and exercised.  I do feel better, physically and emotionally, when I look after my body.

But the sick irony is that when you most need a good brisk walk, a plate of steamed vegetables and nine hours in dreamland, you're least able to do it.  Fatigue and depression drains your energy, your executive funtioning and your will, yet somehow also leaves you jittery, anxious, insomniac and unable to relax.  It leaves you in a place where a litre of icecream straight from the tub and a 12 hour Youtube marathon is all you can manage.

And sometimes, that's OK.  Sometimes you genuinely can't do more than that.

But I find if I can make a tiny little step towards being healthier, I can start to claw my way out of the pit of inertia and despair.  It's about baby steps: a glass of vegetable juice, walking to the corner and back or once around the backyard, a shower and a clean shirt, fumbling once through the Sun Salutation.  Don't try to go straight from the depths to jogging, preparing a full, perfectly balanced meal and meditating for an hour.  You'll crash and burn.  (The voice of experience has spoken.)  But if you manage a tiny bit today, maybe you can manage a tiny bit again tomorrow. Maybe even a little more.  And not only are you healthier, you start to feel a little more in control.

I'm in a bit of a pit at the moment.  I have a lot I should be doing, but no particularly clear idea where to start, and it's all very scary.  It's easier to run and hide away with the ice cream.

But last night I managed a reasonably decent dinner and a good night's sleep.  Today I've managed cereal for breakfast and even mowed half the lawn.  And I feel OK.  I feel a little less completely overwhelmed by the world in general.  Nothing out there in the world has changed - what's changed is my outlook on it.  And tomorrow, with another decent dinner and good night's sleep, I may feel better still.

Little bit by little bit, baby step by baby step, we can turn our thoughts around.

Photo: Reflection of clouds on Soap Lake by the University of Washington digital collection