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:

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?