Saturday, 31 August 2013

This just in: cold virus causes autism

At the moment, my sensory sensitivities are much more troublesome than they usually are.  I've lost count of how many times I've said "pardon?" in the last few days, because I either can't hear what's being said over the roar of the birds chirping and the traffic outside, or I've heard it but can't process it.  I've dropped things, fallen over, walked into things and am even less adept in the fine motor control department than usual.  I've been taking things literally and misinterpreting things and not getting jokes and not realising when someone's talking to the person beside me rather than to me.

Quick!  I'm regressing!  Shove some bleach up my bum!

No, wait.  I just have a cold.

It's not a bad cold, as far as these things go.  Just enough to require a day off work (which I really didn't want right now) and two days in bed feeling thoroughly sorry for myself.  Also I lost my voice, which is bothersome when your job is 70% talking on the phone.

But when I'm sick, even with some minor passing lurgy like this one, I do get "more autistic" (insofar as that means anything).  The sensory/motor stuff gets worse, and the social stuff gets more difficult and comes even less naturally than it usually does.

But that doesn't mean I've actually regressed or my Aspergers has worsened.  It just means that my body's directing what energy it has to fighting the lurgy, so doesn't have any left over for dealing with sensory shenanighans or processing social interactions.  Getting well takes precedence.  And during that getting well phase, the Aspergers I've always had is just more apparent than it usually is.

Tuesday, 27 August 2013

Shops: how do they work?

I don't get how shops work.

For instance, I got some takeaway for lunch yesterday.  But I only actually managed to get it because a friend was with me and showed me where to order, and reassured me that they did actually do takeaway because I wasn't convinced. It didn't look like they did, and it didn't say anywhere that they did, but apparently they did and my (NT) friend just knew this somehow.  Probably through the same telepathy they use to work out who's friendly and who's an axe murderer, and whether to veer left or right when there's a person coming towards them in a supermarket aisle.

[Grand Grocery Co.], Lincoln, Neb.  (LOC)
And this place has a display of potatoes in the doorway.  What the hell is that about?  How do I get in? Is that even a door? Is the door somewhere else? EXPLAIN YOURSELF, SHOP

I used to think this was just because particular shops were badly designed or had inadequate signage.  But I'm starting to realise that every single shop in the land can't have been laid out wrongly, so maybe it's me after all.

If it's a really obvious layout - your standard supermarket aisles-and-checkouts, or a corner shop with stuff on shelves and a counter at one end with the smokes behind it - I'm fine.  But if things aren't totally self-explanatory, I get really badly ballsed up really easily.

For instance, I went to a shindig at an arts centre in town on the weekend.  The whole purpose of the event was that you could go wandering through this ginormous three-storey sandstone warehouse affair and check out all the arts groups and assorted culture vultures who had studios there.  But the minute I got through the front doors, I couldn't work out where to go.  The path that seemed obvious to me led straight out the back door into the loading dock.  Apparently all the interesting stuff was up the stairs, but to me the stairs looked like they just went to the staff loos.  I climbed them (after my detour to the loading bay) expecting someone wearing complicated spectacles and a black roll-neck to appear and shout at me at any moment.  I felt like I was intruding. 

The more I think about it, the more I realise this is A Thing with me.  There's a fruit and veg shop in Bundaberg that's apparently quite good, but I never went there because I thought it was some sort of wholesale industrial turn-out where you'd go to buy onions or potatoes in forty kilo sacks.  Nothing about it said "open to the public".  Not to me anyway.  I've gone to the wrong counter or through the wrong door enough times to have developed a bit of a complex about it.

How does a person manage to be in their fourth decade on this planet and not know how shops work?

It's like the whole "can't read body language" thing doesn't just apply to people, but to stuff as well.  I can't 'read' a building or a shop any more than I can 'read' a person.

But more to the point, what to do about it?  It's lovely to have someone to tag along with, so I can take my cues from them, but I can't always have Friend with me.

Clear signage would be a massive help.  For instance, at the arts shindig a sign pointing up the stairs saying "this way to the stuff you're here to see" would have saved me a trip to the loading bay.  Signs saying "pay here" or "order at other counter" might not fit with the chic, stylish look a lot of places are going for these days, but they'd make those places much, much easier to navigate.

Friday, 23 August 2013

Of autism and woo

Back before I was diagnosed with Aspergers, when I knew there was something 'wrong' with me but didn't know what, I encountered several different varieties of pseudoscience, alternativism and general woo.  (And that's coming from someone who reads tea leaves.)

I generally don't have a problem with woo.  If you want the believe in unicorns, or the flying spaghetti monster, or that you're an indigo child, that's your business and I wish you well.  But things get complicated if you make that decision in relation to another person, and even more problematic if that person is a child.

For instance, one of the many ill-fitting labels I was given was Highly Sensitive Person.  It's probably not a bad fit in many ways, and I can understand how that decision was reached, but the problem with this 'diagnosis' was twofold:

It was wrong.  It was an inaccurate diagnosis bestowed by someone who was not (as far as I can remember) a medical practitioner.  My sensory issues and apparent shyness are not because I'm an HSP, but because I'm autistic.  You can't manage or treat something if you don't even know what it is.  So the coping strategies and advice that might work for an HSP won't necessarily work for me... so I end up right back with that endless feeling that there's something inexplicably 'wrong' with me which led to my seeking help in the first place.

I can't remember how long I entertained the HSP notion, but probably not more than a couple of months.  But that was a couple of months wasted tilting at windmills while getting no closer to finding the true root of the very real problems in my life at the time.  Add another few months for something else, and something else, and some other damn thing, and before you know it five years have passed and I'm no closer to the truth.  All this could have been avoided had I been correctly diagnosed earlier.

Were I born a few years later, I might have had a chance at being diagnosed younger.  Then again, I might have just been considered an "indigo child".

A few years later still and I could have been a "crystal child", which is Indigo 2.0 and is often associated with autism the way the original 'indigo' concept is correlated with ADHD.

Giving kids fluffy, meaningless diagnoses does not help anyone.  Just as a 'diagnosis' of HSP-hood didn't help me with the shenanighans Aspergers brought into my life, being called "crystal" or "indigo" isn't going to help an Aspie kid.  Being crystalline will not entitle you to any assistance, support or accommodations.  It's hard enough to get those when you're an actual disabled person with an actual, documented disability, you're not going to get them for some sparkly New Age unicornshit.  

Pretending that a disabled child is an angel or a fairy or the embodiment of a higher power deprives that child of the actual help they deserve.  There are many, many words spoken about the importance of early intervention in autism, and the importance of getting children diagnosed early, so it seems perverse to spend those vital early years deliberately doing something else.  There's no substitute for the help that comes from a proper diagnosis and help from people who didn't get their qualifications from the University of the Astral Plane.

Another problem is that it sets the kid up for failure.  If you've spent your life being told you're a Super Special Snowflake, highly evolved and more enlightened than your fellow man, here to bless the Earth with your magnificence, it must suck pretty hard to find out you're actually very human, possibly disabled, and perhaps not actually very well equipped at all to cope with the realities of life.  I've seen people considered 'gifted and talented' at school because of their high academic achievement crash and burn post-school because they can't make their smarts work for them in the outside world.  That's more or less happened to me, except I wasn't considered G&T in the first place - even at school I couldn't really translate that IQ of 142 into anything of substance.  So setting the expectation of something spectacular from a child, particularly a child with developmental delays, seems cruel to me.

I can understand it being very comforting to think you are, or your child is, a little bit magical.  It's the same reason the Aspie supremacy fringe groups push the master race stuff.  We all want to feel special.  We all want to be acknowledged.  We all want to matter.  And in today's society, where humanity is reduced to numbers and being disabled means your worth as a person is judged by the cost of your care, we don't feel like we matter.

We do.  Everyone matters.   And something drastic needs to change so that society as a whole can grasp that everyone, every single human being, matters equally.  But that can only happen through awareness of the way things are, by working to shape reality into something better.

Not by pretending to be purple.

Wednesday, 21 August 2013

Getting an Aspergers diagnosis as an adult

I was diagnosed at 26.  It took me that long to get diagnosed even though I'd been showing obvious (in hindsight) autistic symptoms since I was hours old, and had been seeking help for mental health issues since my teens.

Getting an Aspergers diagnosis should start with your general practitioner.  They can give you the referrals you need to see other specialists (I saw a psychologist, a psychiatrist and a person-who-does-EEGs in the course of my own diagnosis) and should generally be steering the ship in regards to your overall health care.

However, all too often, getting an accurate diagnosis after you hit double figures comes down to pure luck.

I was diagnosed with depression and anxiety while I was at uni, although treatment began and ended with a packet of Cipramil.  This was before the internet was as pervasive as it is now, in the days when looking stuff up online meant driving to uni and hoping there would be a computer free.  So I couldn't research depression the way we can today, couldn't find out about the importance of diet and exercise and therapy and all the other things the doctor either didn't tell me or didn't know herself.

Life went on and I did my thing, on and off meds, for the next couple of years.  Eventually things got bad enough that the employee assistance program for the place I was working at the time referred me to a psychologist.

Here's where I hit a stroke of incredible good fortune:  the psychologist I was initially referred to was booked out until forever, as psychologists often are, so they sent me to someone else instead who had an empty spot because of a last-minute cancellation.  That someone else happened to be the one psychologist for hundred kilometres who specialised in Aspergers in adults.

That's pure luck.  If that happened in a movie you'd call bullshit.  I could easily have been referred to someone else and I'd probably still not be diagnosed today.

Some people work out they have Aspergers without going through the official diagnosis process.  For instance, they could have a diagnosed child or sibling and they recognise themselves in their relative. But personally, without an official diagnosis I doubt I would have ever realised.  I don't have a diagnosed relative, and pre-diagnosis all I knew about autism was Rain Man and some shitty old Readers Digest articles from the ’80s.

And that makes me wonder just how many people like me are out there, who have no idea this thing exists or that there’s this whole community of people like them, because they’re not lucky enough to have stumbled across the entrance to the rabbit hole the way I did.

Luck should not play a role in getting an accurate diagnosis.  Our whole health care network, from doctors to therapists to Indigo Child woo-woo merchants and all points in between, needs to lift their game and do better.

Monday, 19 August 2013

Monday Muster

Welcome to Monday!  Hope you're having a better day than this thing is:

strange looking bird with a bald head covered in knobbles, with a pensive look on its face

The links and resources page has had a do-over, with a heap of new links added (including a whole section of emergency and crisis contacts for Aussies), and some that appear to no longer be active or appropriate have been removed. If you've a suggestion for the list, please drop me a line.

Professor Eileen Baldry has been examining the sad truth of the over-representation of people with mental or cognitive impairment in the justice system.  Her paper Disabling Justice has some truly horrifying figures - in New South Wales, up to half the people in jail have some form of mental impairment, and that doesn't include drug and alcohol related conditions.  The figure is even higher for young people, with sixty per cent of juvenile detainees having (again, not drug- or alcohol-related) mental impairment.

Have a job interview coming up?  This might help.  It's an article of job-hunting advice by Aspies, for Aspies, by Lisa Vaas.  I had completely forgotten contributing (via Quora) to this, so it was quite a surprise to find myself quoted!

So, what causes autism this week?  Induced labour?  Older fathers?  Wi fi?  Gut flora?  Aliens?  In a refreshing and much-needed piece for The Conversation, Andrew Whitehouse calls on the woo-woo salesmen, hysteria merchants and lazy journalists in need of an easy headline to scientifically test their bullshit theories before publicising them.

"The most marvellous aspect of science is that it is accessible to everyone. The basic scientific method is not complex, and can be understood by everyone who is willing to learn...

Here’s my challenge to those who have a theory: scientifically test your theories, or stop promoting them."

I'd actually take it one step further - not only do they have to prove a link to autism, but they have to prove actual causation.  For instance, how many women are going to think twice about inducing labour (potentially risking their or their baby's health) now that the link between induction and autism has been published, even though no actual causation has been found?  It could just as well be that autistic babies are more likely to need to be induced, but nobody chose to report that angle.

Friday, 16 August 2013

Don't ask if you don't want to know

If I've learned anything from James May, it's that you have to start with "hello".  It's the only logical opening to an interaction, even if you do get paid out for your common sense approach later.

On the other hand, I don't really understand why things that look like questions but aren't, like "how do you do" or "what's up?", are used as greetings.

I understand that they are, and it's been years since I last made a fool of myself by misunderstanding and giving an actual answer instead of returning the greeting as expected by common social protocol.  But I don't get it.  I suppose it feels like a second language that's still a second language even though you've been speaking it fluently for years.

I'm not alone in this.  Because of the literal-mindedness that often comes with autism, Autistic people can have trouble telling rhetorical questions, and greetings that look like questions but aren't, from things they're actually supposed to answer.

One way around this is the way I've gone - a lifetime's worth of learning by muddling though social interactions to the point where I've figured out (touch wood) what is a real question and what isn't.

The other way would be much easier for all concerned: don't ask unless you want to know.

Monday, 12 August 2013

In which I address search queries that brought people to this blog in the last week

(In no particular order)

1. "you make me feel like a burden" poem

Not one of mine, sorry.  But if you do feel like a burden: you're not.  You deserve to be here.  Here's a lamb, a puppy and a pretty girl to make you feel better:

Girl wearing hat and pants seated in the grass holding a lamb and puppy, possibly Washington

2: aspies hate nts

Some do, for a variety of reasons.  Some have suffered bullying or abuse at the hands of NTs and it's left them traumatised.  Some feel the world's been set up specifically to exclude them and make their lives difficult, and they're hurt or bitter about that.  A few are just hating haters who hate.  For the record, I don't.

3. autism as an evolutionary step


4. autism next step in evolution

Still no

5. autism next step in human evolution

Would you believe, no?

6. autistic adults discuss disability benefits

I'm not sure whether they mean "disability benefits" as in welfare payments, or literally the benefits of being autistic or of being disabled.  Either way, I don't know how this one ended up here, because I've never discussed the former, and haven't done a heck of a lot on the latter either.  To make up for my lack of help, have some snorglicious lion cubs:

Meisje met jonge leeuwen in Artis

7. is autism the next step in human evolution


8.  is there a link between autism and obesity?

Kinda sorta maybe a bit

 9. stinking toes

Fuck you, Sunshine.  My toes are glorious and smell like a summer breeze in a field of daisies.  I did once describe my foot-fingers as "pudgy", and ever since then I've had the occasional weird toe-related search turn up in my stats.  Aren't there websites for that sort of thing?  What the hell are you doing here?

I can't finish on that note.  Have some tiger cubs:

Jonge tijgers in Artis

Friday, 9 August 2013

That's not helpful

Hypothetical situation: a person was born without vision.

They're perfectly capable in all other respects, and they live, study, work, play, get about, and do all the things countless people with vision impairment do all over the world.  They might have a service animal, use a cane, have screen reading software, perhaps a sturdy bookshelf of Braille tomes and some well thought out furniture placement.

Do you think it would help to have well-meaning strangers constantly trying to convince them that one day they'll see?  That if they think more happy thoughts, dress differently, lose weight, eat the latest fashionable South American berry, take this course or read that book or go to some other seminar, suddenly they'll have sight and then - and only then - will they be able to live a full and productive life?

Or would that be insulting and disrespectful?  To assume that happy thoughts and a book about self belief will change the physical and medical reality of one's body?  To assume that a person isn't already well versed in their own condition and what will or will not benefit them?  To assume that their disability is some sort of personal failing rather than just a thing that is?  To assume that one cannot be happy, or their life have meaning and value, unless they function and look and act just like you, the self-elected arbiter of "normal"?

But there's a long, long history of people doing this to me in relation to Aspergers.

If I say I struggle to make friends, I get well meaning talks about 'putting myself out there' as if that had never occurred to me.  If I point out that there are things I can't do or can only do in small doses because of sensory issues, I get told to just try harder, which is as constructive as telling our hypothetical blind person to just look harder.  If I try to explain that I don't have the neurological or emotional infrastructure to handle a partner or kids, I get blather about how I'll change my mind and there are plenty more fish in the sea. 

When I was younger I always expected I'd marry and have kids, because that was just what people did.  But now that I'm older, I know better.  Family life, while I'm sure it's lovely, just isn't for everyone.

But because I assumed it would be a part of my life, when I realised it wouldn't be, couldn't be, there was a lot of anger and sadness.  I grieved.  I have, on occasion, had an actual stab of pain in my gut on meeting a child with a name I'd planned to use for mine.  Coming to terms with this, saying goodbye to the children I never had, making peace with the reality of my life as it is rather than as I thought it would be, was hard.  It was a process.  It took a while.

So telling me that I'm still young and there are plenty of men in town these days thanks to the industry boom and I should go out more and have I tried dating sites and I should get a job on a mine site because there are plenty of men there (although exactly what they expect a disabled former journalist with a literature degree to do on a mine site remains unclear) it's not comforting.  It's not helpful.  All it does is bring back all that old pain back again, and never let it go away and never let that part of me that still hurts properly heal over.

So when someone says they're single, or childless, or planning not to have kids, or not looking for a relationship, think.  You don't know their story, their experiences, whether they have a condition that affects their fertility or their ability to connect with other people or generally cope and function in their everyday life.  Think before you speak.

And then, shut up.

Wednesday, 7 August 2013

Autism really cramps my style

How I'd like to dress:
vintage photo of a girl wearing a 40s style green and white print cotton dress

Couple posing crouched in a garden.  She is wearing a pretty pink Edwardian-style dress, light pink scarf and pink pillbox hat.  He is wearing a suit.

Model posing in ruins, wearing a sleek black knee-length gown and a sheer cape, with high heels.

How I actually dress:
Jodes, wearing jeans, a plain pink t-shirt and a blue wig, making a V sign with her fingers

I love neat little vintage dresses, bows, buttons, cute shoes and complicated updos and curls.  In my dream world, I wear crisp cotton dresses with matching heels, a string of pearls and funky shaped glasses, my look hovering somewhere between librarianish and rockabilly.

But in the world we actually inhabit, I wear loose t-shirts or blouses made from soft knit fabrics with jeans.  Or I wear simple shift-like dresses made from the same soft fabric, with thick tights or leggings, and a light cardi over the top if it's sleeveless because I like to keep my armpits to myself.

I can't overstate how much Aspergers affects the way I look and dress.

For a start, the clothes I'd like to wear play havoc with my sensory sensitivities.  I just can't wear some fabrics; anything with too much nylon or wool in it, anything that doesn't breathe well, stuff with too coarse or uneven a weave, stiff cloth that doesn't give with movement, stuff that makes sound when it moves.  Similarly I can't wear anything tight, which rules out a lot of tailored styles of clothing.  Seams cause trouble as well, so the simpler and looser the cut the better.  

If I wear something that disagrees with me, it plays havoc with my ability to focus on anything else or get anything done.  It puts me on edge, so I spend the whole day uncomfortable.  After a while, I get irritable and likely to snap at people and get cranky about things I'd usually let go.  My other sensory sensitivities - to light and sound, for instance - get worse.  It makes me really miserable, and not a pleasant person to be around either.

I can't wear shoes with any sort of heel at all because  it does odd things to my proprioception issues.  It's not just about not being able to walk gracefully in heels - although I can't - but about being barely able to walk at all.  Once there's a heel involved, even if it's just a half-inch or so, I can't judge properly how or when to put my foot down.  You know that thing where you're going down a staircase and there's one less step than you think, so your foot hits the ground really hard because you were expecting it to be lower?  That happens to me a lot when I wear shoes with heels. Fortunately, these days there are lots of cute little ballet flats available cheaply, so I spend my walking life in those or joggers.

I can't do my hair with any degree of skill, which is mostly a motor skills thing.  Make-up is a complete no-go zone, because not only do I lack the fine motor control to apply it but I can't see well enough without my glasses to do so anyway.  (And, before you ask, that same combination of poor vision and ropey motor skills means I can't put contact lenses in myself either.)   Make-up feels odd on my face.  I haven't worn it enough (maybe half a dozen times in the last decade) to know whether this is a sensory issue or something I'd get used to if I used it more often, but I suspect the former.  I suspect it'd go the same way the uncomfortable clothes would - I'd have to either wash it off after an hour or two, or watch the whole day descend into misery.

And, of course, I'm fat, for reasons which are kinda sorta in part Aspergers related.  Cute little vintage-style dresses don't often come in my size, or work particularly well with my body shape when they do.  That's not to suggest bigger girls shouldn't wear whatever the hell they like - it's just that my particular fat has, for whatever reason, decided to settle in places that give me a somewhat masculine shape.  I can pull off a shift and cardi, but in a tailored dress, I look a bit like I'm in drag.

Friday, 2 August 2013

The Stairs of Doom

The stairs are out to get me.

I moved a few months ago, and am now living in a high-set house for the first time since I was a very small child.  I once went for a spectacular tumble down the front stairs of that childhood home, and it's only a matter of time before I stack it on our current staircase too.

photo looking up the centre of a spiral staircase
The Tulip Stairs at Queen's House, Greenwich.  The ones at my place are rather less fancy.
This thorny problem has many points.  My balance is very poor, for reasons that may or may not be tied to Aspergers but are certainly neurological.  My proprioception (the sense of where the different bits of my body are in relation to each other, and what they're doing) is pretty dodgy as well.  My depth perception isn't to be trusted either, because I have quite poor vision and tend not to wear my glasses around the house.  These seem to be a perfect set of circumstances to provide me with a sudden high-speed impact with a concrete floor.

So, how do I avoid coming a cropper?

For a start, I'm lucky that whoever designed that bit of the house had the foresight to put a rail on each side.  The stairs are narrow enough that I can reach out and grab both rails and hang onto them as I go up or down.  This is not only so I've something to stop myself falling if I do go over, but it helps me feel a bit more stable and balanced as well.

If I can't grab the rails - say I'm using both arms to carry a basket of laundry - then I lean into one wall, and go up or down with the whole of one side of my body making contact with both the rail and the wall itself.  It won't help me if I do fall, but it really helps my stability.

However, if that basket of laundry is so shaped that it blocks my view of my feet, I'm in trouble.  For all my depth perception is unreliable, I need to be able to see where I'm going or things get fally fast.  It could possibly be related to a theory that popped up recently, that people who are scared of heights have weak vestibular sense or proprioception, so their sense of balance relies more than usual on vision.  Similarly if my vision's blocked - by errant laundry, in this case - I feel much more precarious and unstable.