Friday, 29 October 2010

Coping with foreground noise

blurred blue squiggle, representing sensory overload
It occurs to me that in my last post I waxed lyrical about sensory sensitivity, but didn't actually explain how I handle it. This is handy information, because I may have lucked onto something other Aspies could use.

Please share any of your own in the comments - there'll be all sorts of things I haven't covered because it doesn't affect me personally, or maybe just hasn't occurred to me.

So, onwards...

Tactile
  • I cut most of the tags off my clothes to reduce irritation, and also the hanging ribbons one finds on some womens' clothing.
  • I'm choosy about fabrics. Stretchy cotton (ie good quality t-shirt fabric) is best for me, non-stretch 100% synthetic fibres are the worst. This goes not only for clothes but home linens, too - my life is much improved since I started making my own pillow cases out of old t-shirts.
  • I can't use certain kinds of hair conditioner, because it has an unpleasant slimy texture which 'sticks' to my skin for hours afterwards. Ironically expensive shampoos are worse (Clairol herbal essences in particular) while cheap ones are generally OK. I've no idea what the one I usually use is called, but it's usually right on the bottom shelf and less than $3 a bottle.\
  • Light touch itches like hell. I prefer a firm hug or handshake to a limp one, and use a heavy blanket all year round - even if it means I need to have a dfan running as well. I don't sleep well under a light cover. I'd really like to invest in a proper weighted blanket if I ever get around to it.
  • My balance is very poor, so I ALWAYS keep a hand on the rails of stairs and escalators, in case I go over.
  • Similarly I don't have the spatial awareness to jump off or over things. So if I have to get out of the back of a ute, for instance, I'll sit on the edge and then push myself off to the ground rather than trying to jump off from a standing position. Yeah, it looks wussy, but otherwise I misjudge the distance and sprain ankles.
Aural
  • Sound is a particular problem for me - ironic, since I work with it for a living. I never leave a TV or radio playing unattended, the way some people do 'for company'. I am much more settled and comfortable without the extra noise.
  • I can NOT listen to two people at once. Say I'm on the phone and someone comes and starts talking to me in person as well: I literally lose the ability to understand either of them. It's as though they've both just suddenly started speaking a different language. If I can't get one of them to shut up, I just have to walk away.
  • I generally turn the sound effects and music off when I'm playing games.
  • In a noisy environment headphones with music apparently help some people, but I find not - in places like buses or trains it's better to be aware of one's surroundings than try to drown them out with music.
  • Squeaks, rattles, drips and clanks are horrid. I fix them. If I can't fix the noise, I tape up/grease/jam a piece of plasticine around the offending object until it can be properly fixed.
  • My parents have finally realised they'll actually get a conversation out of me over the dinner table if they turn the TV off first. Otherwise, I'm too busy fighting the intrusive noise to make small talk.
Visual
  • I'm personally not overly bothered by visual stimulus unless I'm already overstimulated in other ways, but fluro lights are sometimes a problem. There's a certain harshness to that light which creates something akin to a crawling effect on my skin, like a light but constant pressure.
  • Chessboard type patterns and grids - like white tiles with black grout - sometimes appear to move and bulge. This isn't so much a problem as a random weird neurological phenomenon, but it does mean I sometimes can't really tell how far away the floor is. Plain floors are easier to judge. Apparently there's a similar problem which affects older people with dementia - a large black spot on a white rug, for example, actually looks like a raised section which must be stepped over leading to increased risk of falls.
Taste, and textures and scents specific to food
  • I cannot eat prepackaged yoghurt with chunks of fruit in it. The chunks are slimy and smell and taste rotten, even if they're not. Plain yoghurt is a much better option, or run the fruit yoghurt through the blender to get rid of those Godawful lumps of slime.
  • Most vegetables and fruit - and some pickles and jams- taste incredible sour to me. It's something to do with an increased sensitivity to certain compounds in plant based foods. So once I find something I can handle - bananas, broccoli, carrots, corn - I stick to it.
  • Some store-bought recipe bases have that same slimy texture that causes trouble with hair conditioner. I find Aldi-branded recipe-base-in-a-jar particularly bad, and Patak's curry sauces about the best.
  • I don't eat in the kitchen. The cooking smells put me right off my food, strangely. I'm OK if I eat in another room.

Foreground noise

The sensory sensitivity side of Aspergers isn't one that gets a lot of press, maybe because it's one of the hardest to explain. So, here goes an exercise in explaining the inexplicable.

You know how your brain filters out excess incoming data? Maybe you don't. Your brain does it so efficiently you may never have noticed.

blurred image with no recognisable elements, illustrating the concept of sensory overload
No, I can't "just ignore it"
Take a moment to really hear what's going on around you. The traffic noise. The clock ticking. The tap dripping. The dog barking three houses down. Wind noise. Birdsong. The radio on next door. The squeaky exhaust fan. Kids walking past on their way home from school. Your flatmate's noisy 'flu-riddled breathing. The air conditioning. You get the idea - there's an absolute cacophony of mindless noise going on at any given moment, even if you're deep in the bush a hundred miles from civilisation.

But your brain is very efficient at filtering most of that nonsense out so you can concentrate on the bits you actually need to hear - your child's voice above the chorus of the playground, your mates' conversation over the thump of the music in the pub, the water cooler chat over the humming fluros and the ticking clock. Your brain's on duty all the time, filtering out all that nonsense.

Mine doesn't do that.

I hear all that nonsense, all the time.

And it's not just noise, it's all the senses. Random kitchen smells. The rub of an annoying tag in my shirt. Flickering lights. It's endless.

Supermarkets are particularly painful. The lighting is usually too bright, and many of the fluro tubes are past their best, and hum or flicker. The in-store radio is intrusive and the layer of announcements of the public address system on top of it is loud enough to be genuinely painful. The fruit and meat sections stink, children are screaming, trolley wheels squeak on the slick floor and people with BO brush against you and invade your personal space.

Small wonder supermarkets are a prime spot for autistic children to have a meltdown. They are hell on earth for a person with sensory sensitivities.

This is hard to understand, I know. Within the general mass of human difference, there are generally agreed parameters for what is a comfortable level of sound/light/touch.

Those parameters are different for people with sensory sensitivities.

Sunday, 17 October 2010

The genius myth

There's a myth that all Aspies are geniuses. We might struggle with interpersonal skills, know far too much about the history of Doctor Who, and react badly to a humming light fitting, but it's OK because we have amazing savant super-brain powers to make up for it.

closeup of hand doing a sudoku number puzzle
Screw your sudoku
And on paper, I'm probably one of those super brains.  When I had an IQ test as part of the diagnostic process, I came out with a neat 140.  Which, if you've ever seen me trying to get by in everyday life, you'll agree is kind of ridiculous.

The whole thing was skewed out of whack by my verbal skills, which were off the scale.  But everything else was on the scale.  Quite a way down it, in some cases.  I'm just not convinced that Wechsler's arbitrary figure really has any bearing on who or what I am as a person.

Some Aspies are very bright, into the genius end of the scale and beyond, and contribute great and wonderful new things to humanity.  But others aren't.  And if you broaden that out to look at the whole autism spectrum, that spread of abilities becomes even more pronounced.

And for people who aren't super brains, the last thing we need is the extra guilt of being told we're letting the side down because we're not bright enough to be properly Aspergian.   First you're expected to be normal, and you're not, and that's awkward. Then the Aspergers thing comes out and you're expected to be brilliant.  And when you're not that either, it gets awkward all over again.

I'm also not comfortable with the idea that we have special talents to "make up for" our struggles in other areas.  We shouldn't have to make up.  Nobody should have to justify their existence. People with Down syndrome are not expected to become elite athletes.  People who use wheelchairs are not assumed to be great artists.  Nobody expects Lupus to confer superior wedding planning skills.  People with those conditions simply deserve to exist because we all do.  Similarly, Aspies should not be expected to be scientifically or mathematically brilliant as the pay-off for having the temerity to be born the way we were.

I might have a high IQ on paper, but I'm no brain. I'm especially poor at the type of intelligence stereotypically associated with the Aspie geek stereotype.  I'm rubbish at maths - to the point that the logbook in the work vehicle is full of sums because I can't figure out 567 minus 234 in my head - and while science fascinates me, my attempts at studying it at school left a trail of disasters.

What intelligence I do have is bound up with artistic pursuits. I am fluent in words and sounds and pictures, in the construction of poetry and song, the layering of the spoken word with music and other sound, the use of colour and form to evoke mood.

In our society - the bit I float through, at least - artsy, 'humanities' based skills are valued less than technical or business skills. I'm not getting into a rant about how sad this is (tempting as it is) but just explaining that here I am, 30 years old, just about numerate, scientifically useless, and the possessor of a range of low-value, lesser-importance skills.

I'm no genius.

And I still have as much right to exist as everyone else.

Friday, 15 October 2010

The gratitude conundrum

I am grateful.

I am grateful for many things. For the roof over my head, currently protecting me from torrential rain. For good drainage in my part of town, which means I'm not going to end up like the poor souls on the Sunshine Coast with a foot of water gushing through their house after similar rain. For electricity and internet access and running water. For my health - which isn't brilliant but not bad - and for my family, who are all mad but I love them anyway and they, mostly, love me too.

I am grateful for my diagnosis, which brought the reassurance that I'm not mad or defective or bloody-minded, that there's a reason I am as I am.

I am grateful for the opportunity to work in a meaningful job and earn enough money to keep said roof over my head.  I am grateful for those at work who take my condition seriously.

But while I'm grateful, I'm not going to grovel my thanks on bended knee. Because what I have is wonderful, but it's not more than I deserve.
sunrise with text reading what I have is wonderful, but it's no more than I deserve

This week at work there was a conversation, utterly unrelated to Aspergers, which left me with the feeling that I was somehow not expressing sufficient gratitude for the accommodations made for me. I've turned it over in my head from time to time over the last few days, trying to work out exactly what it is that's annoying me.

Part of it is that the accommodations made for me have been small - nothing compared to the complete rebuilding of both entrances we'd have to do to make the place wheelchair accessible, for instance. But a bigger part of it is the implication that those accommodations have been made out of the goodness of individuals'  hearts. No, actually. It's the law.

The law says one must made reasonable accommodations for a staff member with a disability, and it's hard to argue that "please don't talk to me when I'm on the phone. Could you write me a note instead?" is unreasonable.

So while I am grateful for my (mostly) accepting workplace, I don't think I should have to 'prove' my gratitude.

Ah, here at last, after much navel gazing, is the crux of the issue: we were having an argument. Nothing serious, nothing remotely related to Aspergers, just a fairly standard disagreement between two professionals. But the unspoken vibe was "you're very presence inconveniences us, so why are you causing more trouble by voicing an opinion? Sit down, shut up and be grateful."

Sod that. Accommodating a staff member with a disability doesn't mean that staff member owes you a favour.

I am grateful for many, many things. But that doesn't mean you've got one over on me.

Sunday, 26 September 2010

Am I a Neanderthal?

reconstruction of a Neanderthal woman
Nana?
Is autism a family heirloom from Neanderthal ancestors?

The  Neanderthal theory of Autism, Aspergers and ADHD is a fascinating one.  Essentially, it looks at broad differences between autistic and non-autistic populations, and whether they might not echo differences between Homo sapiens and Homo neanderthalensis communities.  For instance, there's a correlation between autism and having a larger than usual head.  And Neanderthals apparently had big heads too.  That, they argue, suggests that autistic traits might be echoes of Neanderthal genetics.

On an emotional level, I quite like the idea of being part Neanderthal. Not a freak or a mistake, but a throwback to an earlier age, something not less than but different from entirely human, something rather special and unique.

Of course, just liking something doesn't make it true.

For a start, after so many millions of years and countless generations of people travelling and cross-pollinating across the globe, those tiny bits of non-sapiens DNA are going to be ground so fine and spread so far that many, many people will have a dose.  Far too many for it to qualify as some sort of exclusive club.  A little bit of genetic material can go a long way - one in every 200 men alive today is a descendent of Gengis Khan.  And he was just one bloke, not an entire species.

Then there's this research.  It backs up the concept of early Homo sapiens interbreeding with not just Neanderthals but Homo heidelbergensis as well.  Basically, early man seems to have been the duck of the primate world.  But, as the report says, there's been so much mixing since that "there is a little bit of Neanderthal leftover in almost all humans."

Saturday, 4 September 2010

Black Dog

I've been carting Christobel Mattingley's picture book Black Dog around for about a quarter of a century, since I won it in a disability awareness poster competition. I was about six at the time, and my “entry” consisted of a painting of a person in a wheelchair out visiting friends, bearing a bunch of flowers bigger than their head. They were coming up the path towards their friends' house, and in what was probably interpreted as a deep social commentary rather than just a few random daubs of paint, the house had steps.

The painting was more what you'd expect from a toddler than a six year old, thanks to my slow development and motor skills issues – at the time, nobody had a clue I had a disability of my own.

In hindsight, the clues were all there. I didn't catch a ball or tie my shoelaces until I was about seven, or ride a bike 'til 10 or 11.  I misinterpreted the simplest instructions despite a deep desire to follow the rules and do the right thing, and normal playground interaction defeated me.  Yet nobody picked up on it.  Because like many Aspie girls I am quite gifted linguistically and reasonably able to mimic what I see others do, even if I don't understand exactly what we're doing let alone why we're doing it, it was generally assumed that I consciously chose to be different and difficult.

Once we had to draw a picture of a face depicting an emotion. Most of the other kids' were easy enough to work out – grotesquely huge grins for happy, enormous furrowed eyebrows for angry. Mine didn't even look like a face. I think there might have been a moustache above, instead of below, the nose.

There's something slightly ironic about both my entry and the prize. Both deal with friends, yet interpersonal relationships are my downfall.  My social skills are a lot better now than they used to be, but when I was a kid they really were a problem.  That created a barrier just as tangible and insurmountable as that posed to the wheelchair user by the steps on my painted house.

The prize was Black Dog by Christobel Mattingley. Nothing to do with depression, it's a children's book about a girl's first day at a new school. She loses herself metaphorically in the school library, when familiar characters offer a respite from a strange, unfamiliar place. But she also literally loses herself when the teacher apparently doesn't do a head-count before herding the kids back to class.  It's a book to give kids who have changed schools, or are going to, to show that while it might be scary there will be a happy ending involving a friendly dog and a game on the oval with your new friends.

The very last illustration in the book depicts that game, showing an assortment of children playing some hybrid of leapfrog, cricket, and cowboy-themed make-believe. There's one kid sitting in the background, facing away from the rest of the crowd at an odd angle. He's not looking at the other children or at anything else in particular, just sitting, staring. He looks out of place. The rest of the kids ignore him completely.

I can't help but feel that kid is me.

The First Letter

I don't often talk about having Aspergers. Not really talk about it properly; what it means, how it affects me, how I see the world. It's very difficult. Sometimes there simply aren't words.

I don't mean that in the pathetic "this is so terrible it's beyond the remit of the English language to express my grief" sense. I simply mean there are literally no words for some of the things an autistic person experiences.

Take, for example, what happens when I try - or am forced - to listen to two people speaking at once. The classic example is some impatient person demanding my attention when I'm already on the phone to someone else.

First, I immediately stop being able to understand any spoken language at all. It's as though both my phone correspondent and the person standing in front of me have suddenly started speaking an obscure Chinese dialect. It's complete gibberish. For someone who works with the spoken word for a living, and whose only real skill is words, this is terrifying.

If it goes on for more than a few minutes, the gibberish is replaced with white noise. Every aural input, from my conversation(s) to the traffic outside, music on the radio, everything, is replaced by the roar of static, the noise a radio makes in between stations. It's deafeningly loud regardless of the actual volume of my surroundings. I feel lightheaded and nauseous, and if it keeps up will make me physically sick.

This phenomenon is caused by real, physical, identified-by-science wiring problems in my brain. I simply do not process sensory input the way most people do.

Nobody has ever asked me how I experience the world. Some people have made some educated guesses, based on their knowledge of Aspergers in a general sense.  A few chose to believe that I'm making it up, or that I'll 'get over it'.  Or that because I'm not "visibly autistic" - whatever that means - I can't really have the problems I say I have.

This is not a hobby, not something I do for fun, or to prove a point, or because I think it makes me edgy or cool or special. I have a disability.

Much noise is made about early intervention for small children with autism.  This is a good thing. But Aspergers has only existed as a diagnosis since I was in middle high school.  I was not diagnosed until I was 26. I had no early intervention. I haven't even had late intervention, really.

And I am not alone. There are many, many undiagnosed Aspies out there.  A lot of them - us - probably don't even know that Aspergers is a thing, or that there could possibly be a them-shaped space on the autism spectrum.

I'm a success, I suppose.  But I can't help but think things could have been different had I understood the world a bit better.

Take school, for instance. Nobody explained to me that what you're actually supposed to learn as a child isn't the three times table and how to trace a map of Australia, but how to play with other children, how to not cry in public, how to become part of a group, how to start and continue a conversation. And because nobody considered that maybe I'd have trouble learning those things, nobody noticed that I didn't.  I'm learning now, but it's hard when everyone else has a 30-year head start.  But I'm learning.