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.