Wednesday, 28 January 2015

Is this diagnosis worth it?

Sometimes, through the haze of stereotypes and misinformation and clueless service providers and insensitive randoms and support groups that tell you to GTFO when they realise you're not ringing on behalf of a small child, I wonder whether this Aspergers diagnosis is more bother than it's worth.

There was a complicated reason I chose this pic, but I forget. Sorry.
That's a weird thing to say given all the rigmarole it took to get it.  And I still believe the self awareness and understanding it has brought to my life has made it one of the best things to happen to me.  Knowing I'm an Aspie is a valuable and important thing.

But in my day-to-day life, the diagnosis itself is at best irrelevant, and sometimes an active disadvantage.

It doesn't provide access to any services.  Most services are tailored to children, so I was already 20 years too old to be eligible when I was diagnosed.  The services that could help me - help with some effective coping strategies for dealing with executive dysfunction, an advocate to explain sensory sensitivity to employers who think I'm just a whiny bitch, or someone to walk me through the social shit that should have been explained to me when I was four - don't exist.  And because the sky high unemployment rate among adults on the spectrum means we're unlikely to have the sweet dolla dolla to pay for such help, there's no incentive for any entrepreneurial service provider to set up shop.  And if I ever fall on enough hard times to need the disability pension, God only knows what Centrelink hoops I'd have to jump through.

It can actively block you from other help you need.  Somehow having an ASD diagnosis seems to make you ineligible for mental health treatment.  Have I told you about the time I was turned away from a mental health unit while actively suicidal because, and I quote, "Aspergers isn't a mental health issue"?  Because that's a thing that happened.

It's assumed to be the root of your every problem and health concern.  Depression?  Aspergers.  Anxiety?  Aspergers.  Being bullied?  Aspergers.  Toothache?  Aspergers.  Menopause?  Aspergers.  Broken leg?  The guy putting the plaster on would probably find a way to make it about Aspergers.

It's all therapists ever want to talk about. The novelty of having a real live adult Aspie (and a female, too!) means I've paid good money for "therapy" that's been nothing but me explaining Aspergers to the alleged professional.  And not even complex, obscure details or things that are unique to me - basic stuff like "there's this thing called sensory sensitivity..." that they could find out about in three minutes on Wikipedia.  Note to counsellors, psychologists and talk-therapists of all kinds: a patient with Aspergers is NOT an opportunity for you to get some professional development while the meter's running.

Medical people don't believe each other.  Did I miss an awards ceremony where I was supposed to get a framed fucking certificate to prove my Aspergers?  Because I've seen a lot of different doctors (I've moved four times in the last six years, including twice interstate) and only ever had one believe me when I told her I had an existing Aspergers diagnosis.  The others were all "we'll see about that!" as if two psychologists, a psychiatrist, an EEG, an IQ test, and a diagnostic process that lasted six months was somehow worth less than the gut hunch of a random GP who'd known me for ten seconds.  I'm sick of reinventing the wheel every time I need a flu shot or something to counter the effects of a dodgy Chinese takeaway.  It's easier to just not mention that trifling detail about having a lifelong neurodevelopmental disability.

Aspergers diagnosis.  I'm really glad I've got one.  It changed my life.  But sometimes it's just a fucking nuisance.

Saturday, 10 January 2015

Getting organised: sometimes low tech is the answer

My adventures in executive (dys)function continue as a new working year begins, bringing a very real need to knuckle down and get stuff done.  There's a lot to do this year and a lot of potential opportunities swirling around, but inertia and executive functioning shenanigans are threatening to knock the lot flying.

I have learned one very important thing about managing my own executive dysfunction in the last year: electronic doodads are largely useless.

Yes, there are calendars and diaries of various kinds and reminder apps and timers and all sorts of other digital goodies that are a great help to a lot of people.

But none of that 'sticks' for me.  I forget to set reminders or put appointments in my Outlook diary, or forget to check it.  I do up elaborate Gantt charts for project management, and forget to check them as well. Or the reminders go off, I click 'OK', and then immediately forget about them and go on with what I was doing. None of it really penetrates the ADD-scented Aspie fog surrounding my brain.

For that, I need something physical.

Physical diaries and to-do lists work much better for me than digital ones, for at least two reasons.

The first is that I can't just ignore them.  A diary on top of my keyboard that has to be picked up before I can get sucked into farting around online can't be ignored as easily as browser tab.  Having to physically pick it up and move it makes more of an impression on me than just clicking 'dismiss'.  Once I've picked it up, I realise what I'm supposed to do with it, and flip it open and get to work.

The other is that the physical act of writing also make more of an impression on me than typing.  Something committed to paper feels more concrete and important than something typed into a checklist app.  Crossing off completed items is also much more satisfying than clicking a box or deleting a line.

For longer-term projects and more complicated stuff, I've become a big fan of whiteboards.  I've currently got five in circulation, which sounds ridiculous but three of those are at work, and they were already there when I started so I thought I might as well use them.  That turned out to be a great idea.  All my big, long-term stuff is on one board, slowly getting crossed off and amended as things happen, while a smaller board is dedicated to another project and another keeps track of repeating tasks like fortnightly reports.

At home, I've got a big one for messing about, making lists and whatever I happen to be working on at the time (at the moment it's being used to work out the running order of acts for a variety show, because don't ask) and another marked up as a calendar.  I'm quite pleased with it.  I've used washi tape to mark it up into columns and rows, added the days of the week in permanent pen at the top, so at the start of the month I just have to write in the new dates.  I can mark which days I'm working, regular stuff like pay day and when the bins go out, and any other appointments, events and things I have to do.

Again, having a big physical thing I can't help but see is a useful tool for reminding me stuff has to be done.  But the act of updating things, crossing things out, updating the calendar at the start of a new month, also helps me get clear in my mind what I'm doing and how I'm going to do it.

It's terribly unfashionable to need a paper diary, two notebooks and a series of boards to plan your life in the age of smartphones and cloudy devices.  But the physical acts of writing and crossing out and drawing arrows and changing the numbers around when I realise the tasks should be done in a different order just works for my brain in the way that digital doodads just don't.

It might look like an old-fashioned and inefficient system, but it's helping me be far more productive than anything the 21st century has to offer so far.

Saturday, 3 January 2015

Want to do a guest post for Letters from Aspergia?

Happy new year, chickadees.

I've been thinking about how to spruce the blog up for 2015, to keep it interesting and cover new ground.  I'm also very aware that my perspective is only my own.  The spectrum is so very wide, and my place on it so unremarkable, that there's a lot of autism-related stuff that doesn't get covered here because I just don't have anything to say about it.

The logical answer is that it's time to get other people involved, with different experiences and stories to share.

So, for the first time, I'm opening Letters from Aspergia up to guest posts.  To find out how to get involved, read on...

What I'm looking for:
  • Personal stories, experiences or insight
  • Practical advice and tips
  • Explanations of a particular issue or of activism/advocacy you're involved in
  • Different perspectives: people who can talk about being on the spectrum while living in the bush or in a major city, being an immigrant or refugee, Indigenous, gay, lesbian, bi, trans, or non-binary-gendered, having kids or being pregnant, belonging to a subculture or religious group, or whatever experience you have that others don't

What I'm not looking for:
  • Stuff that's already been published elsewhere - it'll bugger up the SEO for both our sites
  • Sales pitches and affiliate links
  • Talk of us being burdens, tragedies, soulless or otherwise wretched
  • Snake oil and quackery
  • Manifestos about the Aspergian master race 
  • Defamation or anything else legally problematic

People on the spectrum will get first preference, but family members, researchers, and other people with something interesting to share will be considered. Australians will get first preference, but people from other countries will be considered.  Indigenous Australians are very welcome.

I'm happy to attribute your post to either your real name or whatever pseudonym you usually go by online, and link back to your own site/social media/wherever you hang out.

Posts can be up to 1500 words, and you can either provide an image or I can find one.  Video or audio posts are welcome as long as you're OK to upload it to Youtube, Soundcloud or wherever it'll live before it's embedded.

Want to get involved?  There's no deadline, so just drop me a line when you're ready, letting me know what you'd like to post about, and a link to your own blog/site/wherever I can find out a little about you if we don't already know each other.

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.