Saturday, 30 March 2013

The times, they are a'changing

I'm the first person in my family to be diagnosed with Aspergers.  Largely, this is because I'm the first generation to be young in a world where Aspergers is a known condition, especially given one side of my family is from fairly isolated parts of the bush and the other from a country shaken badly by war.  But I also live in a world that is harder to navigate for an Aspie than the world my forebears lived in.  Sometimes I look back through the old letters, diaries and photo albums and they seem to have had their shit together so much more than I do, to have been so much more - for want of a better word - functional.  But then I realise, if they had to live in the world I do, they'd probably struggle just like I do.

For many, many generations, my people have been farmers and labourers.  We did hard, simple work and we did it well.  Many of us were outside the bell curve.  Family legend has it my great-something-grandmother was nonverbal at times, and would run and hide in her room with her books on the rare occasion company called.  That probably raised eyebrows, but nobody burned her to death.

That way of life is gone now.

Webb family having an outdoor tea party, Stafford, Brisbane, ca. 1918
This isn't my family.  We weren't fancy enough for a brick fireplace.  Also, half of us wouldn't be making eye contact.
Photo from the State Library of Queensland
Today's farmers are expected to be active on social media, go to conferences, participate in marketing and branding, and to engage their consumers.  You can't even get away from social media in space.  We've gone from a society where we could toil in simple silence, eyes to the earth, to one that values loudness, brightness, chutzpah and show.

Even if we'd known about Aspergers since the year dot, I still think my forebears would have appeared 'less Aspie' than I am.  The society I live in today shines a bright and piercing spotlight on my weaknesses in a way that theirs didn't.

As a kid, when I was under pressure, when I was being pushed to engage socially beyond my ability, when I was in sensory overload, when I was put in situations I just wasn't ready for, those were the times when I'd exhibit every Aspie behaviour in the book.  I'd shut down and mentally withdraw.  I'd giggle inappropriately.  I'd stim, I'd cry, I'd act out.  I'd have tummy aches and headaches.

All those things can be symptoms of Aspergers.

But maybe they're also symptoms of the way our society's changed.

Wednesday, 27 March 2013

Outside the flock

Heron at sunset: Key West, Florida
Ever been near a tree around dusk when a flock of birds were nesting?  They don't just land and go to sleep - they first spend a while chirping, squabbling, preening themselves or each other, and generally hanging out.  The little chirrups and squawks they make when they're all together in a group are called 'contact calls', and that's exactly what they do - they're a way of each bird letting the rest of the flock know they're there, still part of the collective whole.
I often wish I could just give a contact squawk and feel connected to my flock.

I've never really felt connected to my fellow man.

It's not that I set out to be a lone wolf.  Quite the opposite, I'd actually love to be part of the fabric of a community.  But even when I am - and I'm lucky enough to have some wonderful, accepting friends so I have experienced what it's like to be part of a group - I don't feel like I am.  I feel like the third wheel, the one just there to make up the numbers, the one the rest of the group would secretly love to shake off.

Part of it may actually be chemical.  Take oxytocin, for instance.  I'm not a biologist and won't pretend to understand the details, but it's a hormone that affects bonding between people, and there's some science suggesting a correlation between autism and 'genomic deletion' of the oxytocin receptor gene.  So perhaps I'm missing a little nugget that would actually enable me to pick up on this feeling.

Then again, it might be psychological.  Growing up as an undiagnosed Aspie kid in country Australia wasn't always fun. So maybe the love and fellowship part of my psyche is skittish, because when I was young dealing with others often ended in being hurt.

Maybe it's a mixture of both.  Perhaps because I didn't get much chance to feel that connection when I was younger my brain missed the window to learn how to do it, a bit like the "critical period" for language development.

Maybe it's just something I have to get used to, chirping my little chirps and not hearing the return calls from the flock, not knowing if anyone's chirping back or not.

Image: Heron at sunset, Key West, from the State Library and Archives of Florida, via Flickr Commons

Sunday, 24 March 2013

Solutions to the slouch

I have dreadful posture, and a lot of it's related to low muscle tone.

This isn't in muscle tone in the sense of being out of shape (although I am) but in the clinical sense.  One of the unexpected discoveries to come from my adventures at the OT was that my muscles' default resting state is rather more relaxed than is usual.  This means I tend to flop and slouch, to lean on things or drape myself over them.  It's also why I tend to drop things: my muscles underestimate how hard they have to grip to hold onto something.

This means I have a habit of leaning forwards when I'm typing, resting quite a lot of my weight on my elbows.  I've taken to putting a cushion between myself and the table to minimise it, but even so I have quite a forward lean going on.

The problem is that now I'm getting sore elbows and patches of skin irritation from the pressure.  As you can see, the pillow isn't really fixing anything, so I have to find another way around this.

When I'm not typing, I tend to sit on the couch, leaning back with my legs braced against the coffee table.  This is overall more comfortable and my posture's better.  But it's not very comfortable to type in that position because the keyboard's too low, so my wrists have to bend backwards unnaturally.

So, I'm at a bit of a loss.  Got any suggestions for how I can satisfy my need to drape, without killing my wrists or elbows?

Monday, 18 March 2013

Monday Muster

Happy Monday, good people.

This lovely pro-stimming artwork popped up on Tumblr the other day, and is now available as a print through DeviantArt.  Isn't it delightful?


The news that's rocked my world this week is the demise of Google Reader, which is going to ruin my life because I use it to manage most of my online doings - I had somewhere well north of 1,000 individual feeds last time I added them up.  It wouldn't be a stretch to say I spend more time in Reader than I do on any actual website.  I use it for work, for vaguely work related things like following tech and social media blogs, and for my own amusement and education I use it to follow umpteen squillion blogs, webcomics, newsfeeds and updates to websites.

So I was distraught, devastated and mightily peeved when this presented itself to me:

Of course, it's a free product, and you know the old saw about getting what you pay for.  It's also a timely reminder to me to not put all my eggs in one basket - it's easy and convenient to use the one Google account for email, a calendar, maps, online document hosting, Blogger and sundy other tools, but the problem with relying on something outside your control is that, ultimately, it's outside your control.

This plug being pulled isn't entirely unexpected; there's been talk about it ever since the social tools in Reader went west a few years ago.  So I already had a vague handle on alternatives, and here's what I've come up with:

Feedly is a browser-based reader also available as a Chrome app, into which you can import your Google Reader feeds.  After a few conniptions it seems to have recovered from the sudden extra traffic from people fleeing Google Reader, and is working nicely for me.  On the downside, the navigation panel design features tiny, pale grey writing on a white background, which is not quite unreadable but certainly not easy.  And I say that as someone who has (when wearing glasses) near-enough-to-normal vision.

The Old Reader's claim to fame is that it has the social tools Google Reader no longer boasts.  I wanted very much to like it, but I'm afraid I've found it somewhat glitchy and prone to becoming unresponsive - but that may just be the unexpected load from people looking for a GR alternative.  It also seems to have resurrected hundreds of very old items in the feeds I imported - items from 2009 and 2010 are showing as unread in some cases.  I hope it sorts itself out, because I much prefer its design to that of Feedly.

Now, since this is the internet after all, have a cat video:


Thursday, 14 March 2013

Chopping and changing

Going off with a good feed of grass which they have just cut for their horsesI am not good at change. Most of us aren't, really, regardless of our brain wiring. We like feeling comfortable and secure and a big shake-up, beneficial as it may be in the long term, is uncomfortable and insecure and uncertain and all the things that set off mental DO NOT WANT alarms.

Here's a thing I've learned about change, having gone through a lot of them over the last few years and having another big one coming up in six weeks time: it's easiest to deal with if there is still a safe raft of security and familiarity somewhere in the chaos. So if you're going through a big, complicated inter-city move, for instance, that's not a good time to also change your eating habits, exercise plan, start a new job or make changes to your family life.

It's very tempting - a big move or a new workplace or school can be seen as changes to reinvent ourselves; an opportunity to shuck off all the things we don't like about our current selves and take a step towards being a more awesome human being. But having change in every aspect of your life leaves you with uncertainty and insecurity all round, and no area in which you feel safe and settled. And that makes things scarier and more difficult than they need to be.

The other thing is that it's sometimes hard not to make multiple changes at once. People don't often move interstate just for the laughs - it's usually to take up a new job, a change in education, or some sort of family upheaval.

What I found helpful last time I moved was having some time between arriving in town and starting the new job.  I had about a fortnight to get settled into the new house and work out where to buy bread and milk, how to get to work, and generally recover a little from the move before the second wave of change, starting the new job, kicked in.

And one really practical way of softening the blow of change?  Google Streetview.  I'm reluctant to sing Google's praises given what's just happened to my beloved Reader, but Streetview is something I've used a lot when planning road trips for work. The beauty of it is instead of just having a map, I can see what the roads I'll be driving on actually look like, taking some of the surprise out of it. Plus, if you navigate by landmarks (as I do) rather than street names or cardinal directions, knowing what the route looks like is a huge help.  It's fantastic. I just hope it doesn't go the way of Google's other fantastic service, the soon-to-be-no-more Reader.

Image: Soldiers gathering fodder for their horses in France during World War I, from the National Library of Scotland

Wednesday, 13 March 2013

Roasted bete noire

This is my dinner. There are many like it, but this one is mine.

This hot chook has a surprising significance.  It's the first thing I've ever bought from the deli counter at a supermarket.

That doesn't mean it's the first time I've bought a hot chook, it's just that until now I've always got them from the heated display thing where you grab your own.  But the place I shopped at this afternoon didn't have a self-serve one, so I had to *gulp* ask at the deli.  Similarly my fish comes from the freezer section rather than the fishmonger, and juice from a supermarket bottle rather than one of those funky freestanding while-you-wait juice bar affairs.  And if there's a self-serve checkout, all the better.

I'm not sure why this is.  I'm shy, but not so shy I can't ask for something in a shop.  I'm not fond of open-ended social interaction, but I can handle something as predictable and scripted as ordering an item at a counter.  (As long as it's not coffee: there are so many choices and coffee shops tend to be really loud and overwhelming, so my brain usually freezes and my mouth orders a cappuccino because it knows how to make that sound.)

It's more about, and please bear with me because I know it sounds absurd, being uncomfortable with other people waiting on me.  Similarly I buy most of my clothes and shoes from K Mart and the like not (just) because I'm a tightwad, but because there's no "can I help you?", nobody lurking unobtrusively while you're browsing, nobody hovering outside the changing room asking if you'd like to try another size.  It's the same reason I hate getting my hair cut, and Gods help me being fitted for a bra.

I really, really dislike being fussed over.  Add to that a dose of social anxiety and the interpersonal fumbling that comes with autism and it can be very tempting to just creep back into my shell and not engage with the world at large.  But that's dangerous, because it's one of those things where the less you do it, the harder it gets.

Practise doesn't make perfect, but it does make it easier, and leads to little wins.

Like tonight's chicken dinner.

Monday, 11 March 2013

Monday muster

For those who've come in lately, Monday Muster is a quick canter through some of the interesting stuff that's come up over the last week.  It has an Aspergers- and disability-centric slant, but only in the vaguest sort of way.

Here, have a headache powder:

Headache powders

This is from an odd little museum in Childers, Queensland.  It was originally a chemist's shop, and when it closed down they found all the old stock still in storage out the back - and I mean old stock, stuff these bottles of dubious century-old remedies.

Here is some interesting data on autism and Aspergers in girls, and the difficulties of getting a diagnosis if you happen to not have a penis.  This is an ongoing debate and one I haven't seen any clear answers on: are females genuinely less likely to have autism, as the current diagnosis rate suggests?  Or is it, as my own experience and that of the women and girls in that link attests, just harder to get a diagnosis if you're female? That's partially because of self-fulfilling stereotypes - the accepted wisdom is that fewer females are autistic, therefore fewer females are diagnosed - and partially because (again, this is my experience rather than a scientific fact) autism does tend to look different in women.

Deaf student Rachel Kolb has written an account of her life as a lipreader:

"I don't like superficial remarks and predictable rejoinders, but staying in shallow waters is better than sinking. So long as I preserve my footing, I keep up the appearance of being able to converse - to other people and, more important, to myself."

Autistic activist Alyssa of Yes, That Too has penned a biting and insightful Token Autistic Speech.  Well worth a read, it blows a lot of misconceptions about "overcoming" autism out of the water.

If you're interested in sciencey things, have you discovered Head Squeeze yet?  It gets automatic awesome points for featuring James May.

Friday, 8 March 2013

If you're not an Aspie, what are you?

When I first poked a cautious toe into the Aspie community, I discovered the term "neurotypical".  It's often used to describe people who aren't Aspie or autistic, but it's really a broader term to mean anyone with a neurological makeup that is, well, typical.

More recently, the word "allistic" has started coming up, specifically meaning "not autistic".  I've been hanging out on Tumblr a bit recently, even though I'm far too old for the place, and it seems to be rather in vogue there.  An interesting discussion has broken out over there, about the relative virtues of the two words.

Tvær konur, á peysufötum og í kjól / Two women, one wearing "peysuföt" (traditional Icelandic Costume) and the other a danish dress , 1900-1920 

I'm not a huge fan of "allistic".  Maybe it's because "neurotypical" was the word I encountered first and the word I understand and use, so I'm resistant to some new (to me) word coming along asking to be used instead.  Maybe it's because I'm vaguely synesthetic about letters, and that particular combination just doesn't work for me. It's like a vinegar milkshake.

My main issue with the term is that unless you have enough context to work out the meaning, or are familiar enough with the etymology of the word "autistic" to figure it out, there's nothing about "allistic" that really tells you what it means.  "Neurotypical", on the other hand, you could figure out on your own, even if you didn't have much context to work with.

Then again, "neurotypical" doesn't mean "not autistic".  There are all sorts of other neurological shenanigans, from ADHD to acquired brain injury, that will kick you out of the neurotypical club.  So it's not always the best word to use if you're talking specifically about autistic versus not autistic people.

But I don't have a better suggestion.  If you do, I'd love to hear it.

Wednesday, 6 March 2013

Surviving and thriving

Flower meadow in Llano, TexasSometimes I read the older posts here on the blog, and I don't remember writing them or particularly identify with the person who wrote them.  Take the post that started it all, for instance - "I didn't understand"... "I regret"... "if only".... "if only"... "if only".

I'd not long been diagnosed, back when I wrote that.  At that stage, I had a very clear picture of myself as wrong and malfunctional - growing up obviously different but no apparent reason why will do that to you - so I understood Aspergers in terms of something that was wrong with me.

Then, slowly, that thinking started to turn around.  I met a group of awesome Aspies through an online forum.  I no longer frequent the forum where we met, but we're still friends.  I started getting my head around the writing of Autistic people like Amy Sequenzia, folks who have disabilities yet are active self-advocates secure in their self worth.  This was a lightbulb moment, specifically one of those energy-saving bulbs that are dim when they first turn on and get brighter and brighter as they warm up.  Slowly, it dawned on me that one could be autistic and not be damaged goods; you could be different and still deserve to exist.

No, life hasn't become any easier.  Socialising and shopping centres and interpersonal shenanigans are just as hard as they used to be.  But now I realise it's not my fault they're hard.  It's not a personal failing.  It's not a sign that there's something wrong with me or that I need to try harder.

I used to see Aspergers as the reason I was defective.  Then as something I had to overcome.  Now I realise I can have Aspergers and be a worthwhile human being who deserves to be here.

And have been, all along.

Image: Flower meadow in Llano, Texas by the US National Archives

Monday, 4 March 2013

Monday Muster

There are some unexpected folks on Pinterest - the Queensland Police, for instance, and an online daylily farm - but one sweet board is the New York Public Library's Little Lions.  Inspired by Patience and Fortitude, the two marble lions that guard the entrance to the library, it's a board dedicated to people's cat photos.

Maybe I should send through a picture of my baby Fry?

Hungry? How about some bacon, potato chip, or 'firecracker' flavoured chocolate?

On to something actually autism related... the sensory and motor skills aspects of autism are areas I'm particularly interested in, because it's an area where I'm thoroughly affected and quite self aware about it.  Here's a new piece on it, the snappily titled Moving the field: the sensorimotor perspective on autism. (Commentary on “Rethinking autism: implications of sensory and motor differences” an article by Anne Donnellan, David Hill, and Martha Leary)

If you have a few bob you're looking to throw at a worthy cause, check out Keep Me Safe Tonight on Pozible.  It's a film project looking at Australia's suicide rate, which takes more people from us than do road accidents.

"By 2009, Don Ritchie had officially prevented 160 people from taking their own lives at a cliff near his house in Sydney. He did this by taking the time to talk and listen to people in need. As filmmakers, we are inspired by Don's work and believe that we can all do something to reduce the rate of suicide in Australia."

Sunday, 3 March 2013

Autistic people are...

Last week's Autistic People Should flashblogging had a fantastic result - Google has agreed to step in and remove the hate speech from the autocomplete suggestions that pop up when you type "autistic people should" or "autistic people are" into their search box.

But that's no reason to stop now.  Today is part two: Autistic People Are...

Tall daisy

Autistic people are people:  We are not a philosophical concept to be talked about in the abstract.  We are not soulless, mindless husks who cannot speak for themselves (even if we don't all do it with spoken words).  We are not your learning experience, put here for you to learn about respect and difference.  We are not "self narrating zoo exhibits", to use Jim Sinclair's beautiful turn of phrase.

We are people.

Autistic people are all different: There is no archetypal autistic person who can be held up as the template for all of us.  Autism affects all genders, ages, ethnicities, spiritual paths, social standings, economic levels, geographic areas and subcultures.  "You don't look autistic" is a meaningless phrase, because autism can look like anything.

Autistic people are autistic: Autism isn't an aftermarket add-on that can be taken away without changing who the person is.  There is no different, 'real' us hidden underneath our autism - our autistic selves are our real selves.

Autistic people are experts on what it's like to be autistic: Am I an expert on parenting autistic kids? Hell no, and I don't claim to be.  Am I a neurologist?  Psychologist?  Teacher?  No, no, and Dear Gods No.

But I have 30+ years experience at living in an autistic body.  I know more about the actual lived experience of being autistic than any non-autistic person can, regardless of how much they've studied.  By comparision, an Indigenous person would understand living and being an Indigenous person in a way a white anthropologist just wouldn't and couldn't.  Autism's the same.  There is a place for neurotypical experts - just like there's a place for white anthropologists - but that place isn't presuming to speak for the people they study.

That's our job, as the actual people in question.

And through initiatives like the flash blogging over the last two weeks, we are.