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.