Saturday, 12 September 2015

Aspie sleeping habits

Question: are you (or the Aspie in your life) a morning person or a night owl?  Or do you (or they) have sleeping habits that don't fit the usual pattern at all?

My Aspie tendencies become more pronounced when I'm tired or sleep-deprived - my sensory processing goes to hell, I get even more socially awkward than usual, and my tiny shred of executive functioning deserts me completely. I reckon a solid eight hours z's a night would make a big difference to my health and my general ability to function - if I could get it.

The first problem is I'm a serial night owl.  I've really never been able to handle mornings, by which I mean anything before about 9:30am.  Which presented a particular dilemma when I had a job that started at 5:30am, and is still a problem now that I work office hours.

I've tried just going to bed earlier, but that doesn't work.  It usually ends up either like this:
  • I try to get to bed earlier, but thanks to the disorganisation that comes with executive dysfunction I don't get around to it until the usual time anyway
Or
  • I get to bed earlier and then can't sleep because it's earlier than my body's used to going to sleep, and I've got too many racing thoughts about life and work and whatever I'm currently obsessing about and deconstructing my latest social failure in minute detail and worrying about how I'm not getting enough sleep.
I usually don't sleep in a lace dress or full makeup, though
Plus, I genuinely feel more alert and do my best work later at night.  It comes in handy when I get involved in sporadic performance-related things, but isn't so helpful for 8:30 starts at the office job.

On top of owlishness I also get pretty epic insomnia which resists everything I've thrown at it: warm milk, various prescription meds, herbal supplements, get-ready-to-sleep guided meditations, listening to whalesong and burbly Enya-type nonsense, exercising, not exercising, reading before bed, not reading before bed, and liberal quantities of booze*.

 I'm not sure whether any of this is an Aspergers issue or not.  I only have one brain, and a variety of bullshit going on it it, so it could be any combination of:
  • Aspergers-related sleep issues
  • ADD-related sleep issues
  • Depression-related sleep issues
  • Sensory processing issues - I love the weight of heavy blankets and featherbeds and the heavier the bedclothes the better I sleep.  But I also feel the heat something awful and am way more comfortable when I'm cool, so for most of the year heavy blankets are an impossibility
  • I should probably get checked out for sleep apnea, because I tick a couple of boxes for that.  It's on my list of things to do, along with seeing a dentist, getting my eyes tested, getting a few not-dangerous-but-still-annoying moles lopped off, updating my mental health care plan and getting my eyebrows sorted out.  Don't hold your breath on any of that actually being done anytime soon, though.
I really like the sound of the way we apparently used to sleep until the 17th century, in two blocks of four hours with an hour or two's wakefulness in the middle.  That's a lifestyle I reckon I could get behind, but it'd be hard to make that schedule work around the commitments of the modern day.

Anyway, enough about me.  I'm interested to hear from other people on the spectrum: are you a night owl too, or are you an early riser?  Or do you have a non-standard sleep pattern?  Do you have insomnia?  (And do you have any tips to deal with it???)  I'm really interested to see what trends emerge...


*Alcohol is not recommended as a sleep aid because even if it does knock you out it screws up the quality of your sleep.  But it should be pretty clear that I'm not a how-to guide for sleep hygiene.

Sunday, 6 September 2015

How come douchebags have so many friends?

I can't be the only one who's noticed this, right?

For all my social graces are awkward, I work really hard at them.  I put a lot of effort into interpersonal stuff, and try really hard to be competent in my interactions with others.

Still more popular than you
So it's really frustrating when some jackass comes along, acts like a complete dick, treats everyone around them like shit, and still has people hanging off their every word.

What is WITH that?

I don't know, and some in depth research from the University of Googling Shit suggests it's a question many have asked and few have answered.

Here are my theories:

  • They're not - it just looks that way to me because I'm so down on myself and my own wobbly little social network
  • The have something else - industry connections, a rich daddy, or a tendency to shout free drinks for everyone in a 20-foot radius - that makes them worth hanging around despite their behaviour
  • They treat people differently, so their friends see a different side of them than others do
  • Their behaviour isn't that bad, I'm just a sensitive special sooky snowflake
  • Their friends are as fucked up as they are
  • They don't have friends so much as an audience keen to see what outrageous thing they do next, because a lot of people love a bit of drama and conflict
  • At any given moment they have a load of friends or hangers-on, but it's a constantly changing series of short-term buddies rather than long term meaningful relationships
  • The world's a really weird place, and it's about time I accepted I really don't understand it.

Sunday, 9 August 2015

My Aspie special interests are causing trouble

I have a slight problem with my special interests.  Hell, let's call them what they are: obsessions.

Most of mine are media related - TV shows or comedy mainly, with a side helping of books, comics and movies.  That means they take time to watch or read or pore over and enjoy.  On the whole, it's time well spent because I love it, I learn things, and it helps build my knowledge and skills for the writing and theatre-related stuff that is my living.

But the time my special interests take eats into the time available for that writing and theatre-related stuff, self care, keeping the house clean, and generally being a vaguely functional* adult.


Watching TV shows takes time.  And while you can do other things while watching TV if those other things are knitting or jogging on a treadmill, it doesn't really work if you're trying to write or practice a soliloquy.  Or if you're hanging out the washing, weeding, or moving from room to room as you clean the house.

The rational answer is just to limit the TV watching to when I have time, and deal with the important business of having a life first.

But there is nothing rational about my Aspie obsessions.  If I could just not engage with them when I didn't want to they'd be a hobby, not a fucking obsession. 

It's all the harder because a lot of mine are, tangentially at least, related to my work.  It's a long, long bow to draw, but that hasn't stopped me justifying a 2am QI marathon as somehow relevant to the comedy I'm working on.

"First I'll do the laundry and wash the dishes, then I'll write that article, then I'll watch QI but only until 10pm because I need to be up early for work tomorrow" is common sense on paper.  But in practice it often just doesn't work for me, because I don't have the executive functioning or sequential planning skills to make it happen.

I don't have any answers.  It's a problem in progress.

Help?



*Not "functional" in the deeply problematic high/low functioning autistic sense, but in the adulting sense.

Saturday, 1 August 2015

My mum's awesome. Let's talk about that

My Mum's pretty awesome.

I wasn't an easy child, partially for ASD-related reasons and partially just because I was a little shit.  But she never made me feel I was a bad kid, or broken or defective or less than perfect, or that she'd consider trading me in on a better model.

Mum has some Aspie traits herself, and her brother/my uncle was very much on the spectrum for all he never got the diagnosis that might have helped him make sense of his life.  I also see shadows of myself in stories of other ancestors; long-dead Aspergias or yore who hid in their rooms when company came or preferred to communicate by pen and paper rather than speech.  So maybe that's part of why Mum accepted my limitations and weirdness so readily - it's just how some of our family are.

 Mum understands the concept of sensory-hostile clothing, and that made my young life much easier.  She let me choose my own clothes and dress myself as soon as my wobbly motor skills were up to the task, even if that meant a catastrophic confection of clashing colours, football shorts and thongs (the kind you wear on your feet, thank you) that meant I tended not to look particularly pretty or put-together.  Fortunately the whole pink/princess thing hadn't really taken off yet, so a little girl could get away with blue terry-towelling shorts and a Vegemite t-shirt.

Because Mum understood how hard social interaction was, she didn't push it. Of course she wanted her kid to do extracurricular things and have friends, but if it wasn't working and if I was unhappy and didn't want to go, I didn't have to, no questions asked and no pressure.
For all disability awareness and rights still has a way to go, it's come a long, long way. Aspergers has a name now, the autism spectrum is understood to be A Thing That Exists, and we're not the product of poor parenting or too much red cordial or TV.  There's some support and understanding, both for us and our parents.

Society's a bit more civilised, too - bullying and abuse of students by teachers is no longer acceptable in schools as it was in Mum's day, for instance.  And I like to think if I were a child today someone would actually notice I had a developmental delay.

 However, there's still a long way left to go. Services for adults on the spectrum are mighty light on the ground, especially in rural and regional areas. Cognitive disabilities are lagging badly in the fight for respect and acceptance - just look how common "retard" and "special" are as insults. You can try to argue that people who use that term aren't talking about actual people with cognitive issues, but the point remains that it only works an insult because having neurological, developmental or cognitive disability is considered a substandard, inferior way to be.

It isn't. And I know it isn't.

And that self belief is the greatest gift my mother's given me.

Saturday, 25 July 2015

You never had a ticket for Italy: thoughts on Welcome to Holland

If you've spent any time in autism circles, you've probably come across Welcome To Holland, a piece by Emily Perle Kingsley that uses travellling to an unexpected destination as an analogy for having a child on the spectrum.  You've bought a ticket to Italy, you've tooled up on Italian phrases and been pinning Italian landmarks for months... and you land in Holland instead.  Please check your seat pocket for personal belongings before exiting the aircraft.

I've always felt uncomfortable about the piece, for ways I couldn't quite express.  But now I've figured it out:



You didn't buy a ticket for Italy. You had a ticket for an unknown destination, and that's what you got.

You might have expected it to be Italy because that's where most of your friends and family ended up, you probably wanted with all your heart for it to be Italy, or maybe the idea that it could have been somewhere else but Italy never even entered your head... but Italy was never a promise.

About seven percent of Australia's children have disability of some kind.  (Stats here)  Some of those parents would have known in advance their new arrival was going to be disabled, some would have found out at birth or shortly after, some disabilities like ASD might not become apparent for years.

And that's just disability - there are countless ways a kid might just not be who their parents were expecting or hoping for.  Clumsy kids born into families expecting sporting glory.  Tone-deaf children with parents hoping for a little Mozart.  Gay or trans* kids born into families that have a problem with that.  Kids who bear an unfortunate resemblance to a disliked great aunt.  Kids whose skin tone comes out a shade darker or lighter than their family wanted.  Children with food allergies in gourmand families.  Kids who aren't academically gifted delivered into families who expect them to be, and kids who are born into families who don't value that.  Hobbits in Elven families, Elves in families of Men, Men in Orc clans.  This analogy is getting away from me.

There are lots of people who don't 'fit' with their family.  Maybe their family resents their difference and shuns them, or maybe they're welcomed with love, respect, and utter bafflement.

But that's not because a whole lot of families bought tickets for Italy and were then diverted to The Netherlands, Spain, Singapore and Burkina Faso.  It's not because they went to one of those 'build your own cuddly toy' workshops and then on the way out were given someone else's critter instead of their own.

People are people.  When you make a new one, you get an improbable little bundle of genetics and evolution and starstuff who is utterly unique and almost entirely unpredictable.

Every child is a mystery tour. 

No matter how much you think they're a simple trip to Italy.

Sunday, 19 July 2015

Store it where you can see it

If I can't see something, I forget it exists.

I'm not sure if it's an ASD executive function thing, an ADD thing, or just a quirk of my own, but whatever the cause it's always very much been A Thing with me.

As with many other bits of my life that don't work as they should, I've found it's much more productive to work around this than try (and fail) to force myself to change.

This isn't a definitive "101 Ways To Deal With This Issue" post.  But it is a walk-through of some of the techniques I'm using at home to ensure that I can see the things I need (or want) to use, remember and take care of.

The bathroom cupboard came with sliding mirrored doors: I took them off, put some pretty paper inside to cover the rust marks and general decay, and now have my deodorant, sunscreen and suchlike on display.  So I remember to use them.

More bathroom hijinks: another cupboard with one door off to expose to turn it into an open shelf, and grooming-type things on the windowsill. 

The to-be-read pile of books beside the couch.  (With bonus cat toy)

This is what I have instead of a bathroom mirror.  There are plenty mirrors elsewhere in the house, so I got a cheap picture frame, framed some more of the pretty paper, and use the glass surface as a whiteboard for reminders and inspirational guff.

My office, with ginormous whiteboard covered in reminders for things to write/look up/do, and office supplies all over the windowsills so I remember to use them.

Outside of my various open shelves and conspicuous reminders of things to do, my decorating style's pretty minimalist.  This is great for cutting down sensory stimulation, but it also means the important stuff doesn't blend into the general background 'noise' of clutter and decorative doo-dads.

Do you have a similar issue?  I'm curious to know whether it's an Aspie thing, or just something of my own.  And what techniques have you come up with to handle it? I'm always very keen to hear how other people deal with issues like these.  For all the tricks I've come up with there are bound to be loads more that I haven't thought of, but you might have...

Sunday, 5 July 2015

How I learned to stop worrying and love the list

To do lists have been a really helpful tool in digging myself out of this big hole of inertia, depression and fail I've landed in over the last few months.  But all lists are not created equal, and it took me quite a few false starts before I made lists work for me.  Here's what I've learned...

how I learned to stop worrying and love the list

Have multiple lists.  My master list - the list of everything I have to do, should do, and want to do, is long.  Really long.  If it was a scroll, it'd unfurl down a four-storey staircase like something out of a cartoon.  That's no use.  That's just overwhelming and intimidating and generally impossible.

So I split my terrifying master list up into smaller lists.  There's one for work, which only lists work chores and which I only work on during the hours I'm being paid, because not being able to switch off when I leave work has been a big problem for me in the past.  There's one for stuff I can do today - hang out the laundry, do the washing up, write 500 words for an article that's due next week.  There's one for longer-term stuff, one for things I need to ask questions about or seek professional help with, one for things that have to wait until spring/summer/Christmas/the new financial year/some other outside deadline. 

I find I do need to keep an overall list - but the smaller specific ones make the whole thing more manageable.

Break tasks down.  "Laundry" isn't one thing.  It's a multi-step process that goes from sorting clothes to washing to hanging out to taking down to folding up and putting away.  I find adding each step to the list makes it easier to keep track of where I'm up to.  Also, it means you can cross half a dozen things off your list instead of just one, and that's very satisfying.

Include fun stuff.  I usually think about a to do list in terms of chores, work and unpleasant things to be dealt with before I can goof off and have fun.  But there's a cast to be made for including fun stuff on the list too, especially if it's something you enjoy that can also do you good, like exercise, learning a new skill, or socialising.  These days my to do list has a mix of chores and fun stuff.  Yes, the chores tend to come first and there are more of them, but I try to make a point to include something pleasant as well.

Work out the order of operations.  This is more than just ranking the items on the list from most to least urgent.  Laundry isn't urgent until you're down to your last pair of clean jocks, but if you leave it that long it'll be a much bigger and more bothersome task than if you deal with it regularly.  Playing music, exercising, stimming, meditating or hanging out with friends is never urgent, but they're things we can and should do to keep ourselves healthy and happy.  I try to work out a daily to do list that includes any urgent tasks, some routine ones, and some fun ones.

Sometimes there's a logical order - for instance, if I have to buy milk, go for a walk, check something in the newspaper and have a shower, the most efficient way to do those things is walk to the corner shop, buy the milk and paper, then come home, have a shower and read the paper.  But I need to actually write a list and sit down and work that out, because I'm jut not naturally organised.

Include things you do every day if you need to.   Going for a walk, meditating, and having breakfast are on my to do list.  They're things I try to do every day, but they don't come naturally to me (yet).  I need reminders, so they're on the list.  Maybe one day they'll become second nature, but for now adding them to the list means they get done more often than not.  And that's a big improvement on the pre-list system, when they usually didn't get done at all.



Saturday, 4 July 2015

Sorry!

Eeep!  I'm so sorry for my long, long silence.  I've had a rough couple of months with depression, family drama, some work-related overload, and just not being terribly well organised.  That snowballed to the point where updating the blog or checking the email address tied to it felt like The Most Insurmountable Task In The World, so I just kind of hid from it.  Maybe it's my Dutch heritage?

Anyway.  I'm back.  Regular posts will be starting up again from tomorrow, including some guest posts over the next little while. 

I've done a bulk-delete of all the newsletters and email subscriptions that had sent my inbox into meltdown.  While I did my best to not delete anything important, if you've sent me an email and not heard back there is the possibility I've binned it by accident - if that's happened, could I trouble you to send it again?

Sorry again for going dark - normal service resuming now.

And here's some veg from my garden:

 

Sunday, 22 March 2015

Five reasons saying autism isn't a disability is a dick move

Autism isn't a disability!  It's a difference!

How often have you heard that?  It's one of the recurring themes in discussion about ASD, along with person-first language policing and arguments about vaccines/red cordial/smart phones/mobile phone towers/gluten/whatever we're arguing about today.

I think I understand where they're coming from.  They're trying to make a point about how people on the spectrum are as varied and valuable as everybody else even though we're different and society wasn't set up with our needs in mind.  And that's a noble ideal.  It's kind of the point of the social model of disability.

But phrasing it as "autism isn't a disability" throws serious shade on a lot of people on the spectrum, and is kind of a dick move despite the good intentions.

and maybe that's OK

Here are five reasons why:

It's so far from the truth it'll discredit the point you're trying to make

If your own ASD (or your child's,partner's, friend's, or your neighbour's babysitter's niece's), isn't a disability, good for you.  That's awesome.  Go on with your good self.

But for a lot of people, ASD is genuinely disabling.  The degree of disability will vary enormously, as will the form it takes - they don't call it a spectrum for nothing - but disability is still a part of the picture.

Autism's not a weird, rare, unknown disorder anymore.  Most people know something about it.  Hell, most people know someone on the spectrum.  A fair chunk of the lay public already has some sort of handle on the sort of challenges ASD brings, even if it's a stereotypical kid-centric view.  So if someone says "it's not a disability", the listener is going to think "well, that contradicts my lived experience/the family next door/what I heard on the news last night, so this person obviously doesn't know what they're talking about". 

And that's a fair point, because...

You have no idea whether or not another person is disabled

Whether a person has disability is a matter for them, their health care providers and support team, and in some circumstances their family or wider network.  The opinions of some random person on the internet or in a supermarket are not relevant.  Not only do you not have the experience, training or skills to make that call, it's none of your damn business.

So, you don't get to make a call on whether or not ASD is a disability, and issue a sweeping statement defining the disabledness of other people.  None of us have the One True Experience of being on the spectrum.


Which brings us to...

You're implying those who are disabled fail at ASD

Not everyone on the spectrum has wikkid mad skillz.  We don't all have high IQs, or we might have high IQs but be unable to apply them due to shenanigans with sensory processing, language, executive function or other things that one needs to get by.  Relatively few of us are savants. 

And you know what?  We still deserve to exist.  We don't have to have some mindblowing splinter skills to offset the inconvenience of our existence, or some amazing gift to offer the world by way of an apology for our difference.

Some people on the spectrum are disabled.  That doesn't mean they're Doing Autism Wrong.

You're making life harder for people on the spectrum who need support

You know who'd love to hear all about how ASD isn't a disability?  People who are looking for a reason to not employ us, not include us, not educate us, to withhold the accommodations and consideration we need to be contributing members of society.  Maybe even the service providers who are stretched to their limit and need to make a decision about which cases they turn away today.

If you don't need support, consider yourself lucky because there are a lot of people on the spectrum who really do, and a lot who aren't getting it or who have to fight for it every step of the way.  Why make their lives more difficult, by giving ammunition to those with a vested interest in not helping?


Your ableism is showing

How'd this idea even start?  Why are some people on the spectrum so keen to point out it's not a disability?  Is it because they see disability as something lesser, shameful, unpleasant, something they'd like to distance themselves from?

There is still a big, big stigma around disability, especially developmental and cognitive disabilities.  But saying "we're not like those people!" isn't going to break it down, it's just going to reinforce the idea that being one of 'those people' is a bad thing.

Sunday, 8 March 2015

Disabled women are more likely to experience domestic violence


Today is International Women's Day.  It'd be nice to bust out a long, deep, meaningful post about the experience of being a woman on the autism spectrum, but I'm a weepy mess of post cyclone stress and exhaustion, so this will be short.  But not sweet.

Women with disability are at more risk of domestic violence than the general female population.  Women with intellectual disability are at even higher risk than women with other forms of disability.

We need to talk about this.  And we need to end it.

Domestic violence awareness meme from the South African Salvation Army. Click here or the image to view the original


There are many, many potential reasons why disabled women are more at risk of abuse at the hands of their partners, and why they may not be able to leave their abuser.  Many of those reasons are related to wider disability issues relating to access to services and employment, and the way our society thinks of and treats our disabled citizens.

She may be dependent on her partner for physical care, transport, social support, or other things she can't do for herself due to her disability.  There may be no service available to provide that care if she leaves.  She's also more likely to be economically dependent on her partner because she can't work, can't find work, or can only work at reduced capacity due to her disability. 

A big part of domestic violence is isolating the victim from her family, friends and support network.  (Sorry #notallmen, but 95% of Australian domestic violence victims are female, and 90% of perpetrators male.)  People on the spectrum often already have a weak, fragmented or nonexistent support network, so destroying it is all the easier.

She may be unable to detect subtle forms of abuse like emotional manipulation due to her social limitations.  She may also recognise the behaviour as unhealthy and wrong, but since the general theme of everything people on the spectrum are told about interacting with others is that we're always wrong, she second-guesses her judgement.

She probably has a lifetime's worth of conditioning that she's a worthless, shameful, inconvenient burden who should be grateful that anyone would have her, and that she doesn't deserve any better.

The issue of women on the spectrum's vulnerability to domestic violence is a very, very serious one, but one that receives very little attention.  The public discourse around the autism spectrum revolves heavily around children.  When adults are talked about it's seldom in the context of intimate relationships, unless it's about how hard it is to be NT with a partner on the spectrum, or how amazing and inspirational it is that a person on the spectrum could have a relationship at all.

Links, resources and things to read:

Double The Odds: an older but excellent piece from Women with Disabilities Australia
HURT: domestic and family violence
Domestic, family and sexual violence in Australia: an overview of the issues (link takes you to the section specific to women with disability)
Information and resources for people with disability experiencing domestic violence
Another page of resources
Women with disability at high risk of domestic violence
People with Disability Australia and Domestic Violence NSW are working to improve domestic violence services to people with disability.


Saturday, 28 February 2015

Aspergers and dealing with natural disasters

Sorry about dropping off the face of the internet for a while, but I do have a good excuse: this just happened where I live.  Of all the excuses to ignore your inbox for a week and a half, I think a category five tropical cyclone crossing the coast directly on top of you is a pretty good one.

I got off very lightly from tropical cyclone Marcia: safe, dry, power and internet back on, missing a chunk of roof but nothing that can't be fixed when the insurance assessors have dealt with the 20,000 other people with chunks out of their roofs who are ahead of me in the queue.

But the whole experience has set me thinking about Aspergers and natural disasters, and how we who often rely on routine and familiarity can cope with having that snatched away.  A lot of my musings are specific to cyclones, because that's what I've just lived through, but I think a lot of it can be applied to other disasters as well. Here's what I think...


Why it's worth thinking about

A natural disaster like a cyclone can cause not just a vast amount of damage and trauma, but disruption, upheaval and interruptions to services we need to get by.  It's worth thinking about the kinds of things that could happen, so you know what to expect and how to prepare.  For instance...
  • In a cyclone you will lose electricity, maybe just for the duration of the storm itself if you're lucky, or maybe for days or weeks.  Phone, internet, and other utilities may be lost for a similar amount of time.
  • You may lose water or water supplies may be restricted to drinking and food preparation only, which may be a problem if you have sensory issues related to being dirty or your own or other people's body odour. 
  • You may have to evacuate, which will bring a whole host of issues relating to unfamiliar surroundings, breaks in routine, communicating with strangers, and being squished in with other people. 
  • If you have a limited diet, your safe foods may not be available due to food shortages or lack of power or gas for refrigeration and cooking.
  • Before, during and after the storm there will be significant disruptions to your usual routine.
  • Cyclones have a habit of happening when the weather is hot and humid, which means you're going to be very uncomfortable in the electricity-free days that follow.
  • There's a risk of having belongings damaged, destroyed or lost, including stim toys, comfort items, precious special-interest-related collections, and medical aids.

Advance preparation

If you live in an area that's prone to cyclones or other natural disasters, you really need to have an emergency kit prepared.  Mine was a mess, and turned out to be missing all sorts of essential stuff like radio batteries.  There are lots of resources to help you put your emergency kit together, but I really like this one - as well as the obvious stuff like torches and a battery powered radio (ahem) it goes into what documents to save, how much water you'll need, and various practical bits of hardware.

As well as your standard emergency kit supplies, it should also contain stuff you're going to need to deal with sensory issues, communication problems or other ASD-related shenanigans.  The sort of stuff you might need:
  • Earplugs, noise-cancelling headphones (and backup batteries for whatever device you're using them with, if possible)
  •  Sunglasses, a hoodie or broad-brimmed hat to block out bright light
  • Weighted blanket, resistance bands, or anything else that helps with deep pressure and sensory input
  • Stim toys, if you use them
  • Pen and paper, PECS cards, or any other communication tools that you use
  • Multiple copies of a personalised autism alert card, if you want something you can give to emergency services workers you have to deal with
  • Battery powered fan, cold packs (live in hope that you might find a way to chill them) or other things to help cool you down if you're overheating
  • Chargers and cables for any devices you use
  • Any medication or medical aids you use, along with a copy of the prescription in case you need a refill or replacement
  • Deodorant, hand sanitiser, or other non-water-dependent hygiene supplies
  • Any diaries, calendars, checklists and flowcharts you use to keep track of time and activities.  Even in the midst of chaos, if you can hang onto simple routines like eating at the same time you usually would, it'll help you feel more in control.
You can also do some homework on your local area, so when when there is a disaster the procedures and places aren't completely unfamiliar.  For instance, you can check out your local flood maps to see if your place is at risk of inundation (your local council website is probably a good place to start) and read up on your local disaster procedure so when you hear that "the district disaster co-ordination centre has been activated" you know what they're talking about.

Also look up your local ABC Local Radio frequency, and tune the radio in your emergency kit to it.  When a disaster strikes all local media will be doing coverage of some sort, but the ABC will be your best bet for up to date, reliable information delivered without hype or hysteria.  Speaking of the radio, you need to be familiar with this noise.  It's not pleasant.  It's not supposed to be.  It's the Standard Emergency Warning Signal, and is played to get your attention before an emergency warning is read.  Years ago it used to be abused to the point it became meaningless, but these days it's only used in genuine emergencies.  So if you hear it, stop whatever you're doing and listen to what comes next.

Before the cyclone

Your emergency kit will include a lot of stuff you use everyday, so when there's a cyclone on the way it's time to make sure everything's charged, working, full and accounted for.  Put the lot where you can find it - probably in whatever room you'll be sheltering in during the storm itself.  Other stuff you could do that you'll thank yourself for later:
  •  Charge every device you own.  Early iPod you never use?  Charge it up and fill it up with songs.  Old laptop with a broken keyboard?  Plug it in.  Digital cameras, gaming controllers, toys of both child and adult variety... make sure everything with a battery is charged, because you don't know how long you'll be without power and what you might need.
  • If you have a prepaid phone or other device, put some extra credit on it.  You don't know when you'll get to top it up again
  • Fill the car up.  Service stations need power to run the pumps.  When the first servo came back online after Marcia, people waited in line three hours or more for a tank of fuel
  • Get cash out.  ATMs also run on power
  • While everyone else is panic buying bread and milk (even people who don't normally eat bread or drink milk - it seems to be a psychological response to a disaster) think about what foods you'll be able to handle, ideally stuff that doesn't need refrigeration, cooking or boiling water.  For me it was muesli bars, tinned spaghetti and barbeque shapes.
  • Don't bother taping your windows.  The official word from the SES is it does nothing.
 You may or may not get much warning.  On Thursday morning Marcia was expected to be a category one or two when it crossed the coast, which to Queenslanders is more an inconvenience than a catastrophe.  But 24 hours later it was a category five and heading straight for us, which is an altogether different proposition.

During the cyclone itself, there's really not much you can do but hunker down, listen to the radio or check the web if you've still got mobile internet access, and wait it out.  It's important to keep listening if you can because depending on your exact location relative to the centre of the cyclone you may or may not experience the calm eye - and you really don't want to think it's over and go outside for a look around, only to realise it was only the eye and now the second half is bearing down on you.


After the cyclone

Usually, the aftermath is worse than the storm itself.  There'll be goodness knows what damage, there'll most likely be no power or other utilities, it'll probably be unbearably hot and humid, and there'll possibly be floods on their way.

Stay calm.

People act differently in times of crisis.  It brings out the best (volunteering and helping others) and worst (stealing generators) in humankind.  Other common reactions I've seen in this and earlier disasters:
  •  Everyone's under enormous stress, so people tend to be snappy, teary, and emotional.  Don't take it personally: it's not you, and it's not them.  It's the cyclone.
  • Because it's hot and generally awful, nobody's sleeping well which further exacerbates the snappiness, teariness, and generally heightened emotions.  Lack of sleep also makes my sensory sensitivity much worse.
  • Because we're tired, emotional and trying to deal with so much complicated stuff, we can have trouble understanding complex ideas we'd normally be able to handle just fine.  You're not stupid or going nuts, it's a stress reaction.
  • There's a need to feel like you're doing something to rebuild, but there's often not a lot you can do, especially if it's still raining, there's no water to clean up with, or you can't get home due to flooding or dangerous roads.  For instance, I ended up spending two days doing random housework like mopping floors (I did at least remember to fill the bathtub, so I had plenty water) because there was nothing I could do about the roof or the other damage, but I couldn't settle to read and there was nothing else to do.
In the immediate aftermath, make sure you're safe and then take a look around and check for damage to your house and belongings.  If there's anything life threatening, like a powerline down, report it immediately.  (That emergency checklist I linked to above includes a reminder to make a record of your utilities' emergency numbers.)  If there's any other damage that needs urgent attention, like a damaged roof that needs a tarp on it to keep water out of the house, call the SES (132 500) or whatever number the radio is giving out for your local disaster co-ordination centre or suchlike.

Ask for help.  There'll be people around who can help with insurance claims, with emergency financial relief if you're tight for funds, with cleaning up and repairs and a trained, sympathetic ear if you need to talk things through.

Try to get back into some sort of routine when you can.  Even if it's just eating or going to bed at the time you usually would, it'll help you feel slightly more in control of the chaos.

As soon as there's the first flicker of power or generators, there'll be places you can recharge your phone or other digital doodads.  Here, we had shopping centres, the library, and various other random shops from a radio station to a cafe to an IT service centre offering free recharging stations.

Allow lots of time to get stuff done.  There might be queues for fuel or ice or food.  You might have to take a longer route than usual to get around due to closed roads.  There might be a great deal of sitting around on hold waiting to talk to an insurance agent.  Normal health and support services will be dealing with an influx of extra people, so regular wait times may well blow out.

Be gentle with yourself.  This stuff's really hard.  But things start getting back to normal surprisingly quickly.  Even though there are local homes that have been effectively destroyed and businesses that'll take years to recover, on the surface at least a degree of normality is coming back here after a week or so.

PS: I sound a bit obsessed with electricity, but a week without it teaches you how reliant on it we really are - it's not just the lights and TV, it's not even the hot water system, the fridge, the fans, being able to boil water and cook food.  It's the traffic lights, the petrol stations, the street lighting, the hospitals' life support systems.  It's not just your computer, it's the ones that run the city's water treatment and telephone exchanges and emergency services and local government.  The whole infrastructure that holds modern life together has taken a hit.  It's a big deal.


Sunday, 15 February 2015

Of camels and straws

Life is a little delicate at the moment.

It's been a busy couple of months - I've moved, and am now living alone again instead of sharing with family.  I've ended up involved in some community theatre type stuff, which is going terribly well.  And I've started learning Auslan, because a) I flap ferociously when I talk anyway so I might as well do something productive with those movements, and b) given my ongoing sensory problems with noise and being able to hear and speak in loud environments, I reckon the basics of a non-verbal language would be a really useful addition to my personal toolkit.

But, this flurry of activity brings a problem:

camel
S'up?
There's only so much I can handle, and taking on extra stuff either means something has to give, or like the proverbial straw that breaks the camel's back I'll collapse under the weight of it all and end up in an overwhelmed puddle of tears, pain and hopelessness.

In related news, I recently ended up in an overwhelmed puddle of tears, pain and hopelessness.

 I reckon there are a couple of issues at play here:

1.  Sensory stuff.  Because my brain doesn't filter stuff out like most do, I have to consciously handle a lot of noise, smells, textures and other inputs most people aren't even aware of unless they concentrate.  That takes energy.  It's why I'm done with a party or trip to the show a lot sooner than most people: it's just too much, and I'm exhausted.

2.  Focus!  While my many experiments in finding techniques and tools and systems to get myself organised are just about keeping my head above water, none of it comes naturally to me.  I'm easily distracted, I struggle to focus on anything (even my special interests, really) and generally the inside of my head looks a bit like this.  (Caution: autoplay video.)  That means it takes me longer to get things done than you'd expect, so sometimes I end up overwhelmed by what would be a normal workload for someone else.

3.  Depression.  It's a bitch, yo.

4.  I don't have the support network to back me up.  If I'm home late after an Auslan class or rehearsal there won't be dinner in the oven thanks to a helpful partner or housemate, there's nobody to help out with the extra housework that comes with living alone, there's nobody to hold me if I just need a damn good cry.  99% of the time I am completely OK with this.  I choose to live alone because not having anyone to split the chores with or come and see that hilarious cat video is a fair exchange for not having to deal with the inevitable interpersonal awkwardness and drama.  But I need to remember, when I'm comparing myself to other people, that they've probably got a network I don't.

5.  There are a whole bunch of life skills I've been slow to learn, because at the age I should have been learning them I was dealing with the whole depression, anxiety, undiagnosed Aspergers thing.  I don't just mean practical things (although I just learned the other day you can take the knobs off your stove to clean it.  Who knew?) but a lot of stuff related to focus, organisation, and emotional regulation and resilience too.  I'm learning.  But I'm freakin' slow.

When everything's going well, it's tempting to add one more straw to the camel and one more and one more. And it's tempting to get slack about the systems and supports that are keeping things going well.  I know it's really dangerous to be complacent - this isn't my first experience with overwhelmed puddlehood, and certainly not my worst - but it's very easy to be lulled into a false sense of security when your camel looks so sturdy.

Go easy on the straw.

Sunday, 1 February 2015

It's not just me

I'm really bad at people.  I can't strike up conversations or keep them going outside of specific scripted situations.  I can't tell who's friendly and safe and who's a potential rapist or murderer.  I can't make relationships happen, and if the other party makes them happen I struggle to hold up my end until it either crashes and burns or withers miserably away.  I take things literally and miss subtext, and am blind to the overarching narrative chain of which this present interaction is just one link.  I can't keep track of who's who in social networks.  I just can't do people.  

None of this is news. I have Aspergers.  I also have a tangle of other stuff, the most relevant to this discussion being the triple-headed blob of suck that is depression, anxiety and social phobia. I am clinically not good at people.

So it always comes as a surprise to me when I get a reminder that a lot of neurotypical people are just as bad at people as I am.

This wasn't what I was hoping to find when I searched for "awkward", but it's too good not to share

I think most people have some trouble with social stuff.  That google's first autocomplete for "I have no..." is "friends" suggests interpersonal relations are hard whatever your neurology.   (Other high ranking suggestions, in case you care, "idea what I'm doing", "energy" and "mouth and I must scream".)

Why?  We're social animals.  Functional relationships are not only something most of us yearn for, but come in handy for the continuation of the species.  You'd imagine we'd be putting a great deal of conscious and unconscious effort into getting it right.

But society's a giant blob of people who can't or won't get on.  Some of it's willful, but a very great deal of it is people who just can't do any better.

This is at once disheartening and strangely reassuring.  It's disheartening because if people with all the cards stacked in their favour still screw up social stuff in the worst possible ways, what sort of hope do I have?  But it's reassuring because, if most people struggle with this stuff, I'm not an irredeemable freak if I struggle too.  (It does, however, lead to the bullshit line "but isn't everyone a little bit autistic?"  To which, to quote Stephen Fry, the short answer is "no" and the long answer is "fuck no".)

I like to think I've got some sort of advantage over a lot of the random social inepts, in that I know I'm crap and am trying, in my own barely competent way, to do better.  I know what I don't know and can't do, and when things do go wrong I often have at least a vague idea why.  That must give me a slight advantage over the shouty berk who's never got further than thinking they're right and the rest of the world's wrong.

Mustn't it?

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.