Monday, 30 September 2013

Monday Muster

Happy Monday, dear ones.  Have a sweet, sad comic from Randall Munroe of xkcd:



Have you ever had counselling? Leigh Forbes from Life on the Spectrum is running a straw poll to see how many autistic people have done.  At this point it's purely about the numbers who have versus those who haven't - the details of those experiences and how useful it was will be explored later.  Cast your vote here.

Just lately we've been talking about creative autistics around here, and Daryl Hannah was mentioned.  Now, she's spoken about her diagnosis and the trouble the condition's caused her career over the years.

Speaking of the many, many expressions of autism, My Autism Looks Like is a blog that talks about all the very different ways people on the spectrum are affected.  It takes submissions (ideally with a photo) and features things like this:

original here
Autistic artist Anabelle Istic (note to self: add her to the list) has a guest post by Sam Noble about the skeeviness of stuff about autism that actually isn't about autism at all.  Rather, it's about what people who don't actually have autism think about it.  The example given is a play, in which autistic people are likened (for reasons I don't understand, not having seen the play) to dinosaurs:

"When we compare autistics to dinosaurs - voiceless, still, non-human - we neglect the fact that they can not only express themselves, but they can also hear us. 

"When a “play about autism” is really a play about how typical folks see autism, we neglect the fact that autism is an experience had by real people, not just a subject to be studied, or a trait to be tolerated. 

"Autism is not screaming, flapping, incomprehensible stress. 

"Autism is an identity and an experience that plenty of people do comprehend because they live it every day." 

And here's the producers' response, taken from their Facebook page:

"It is not in the nature, and usually not in the interest, of dramatic works to have a "balanced" viewpoint. Plays tend to be written from a particular point of view. HAMLET would be a very confusing and very boring play indeed if it were obliged to represent each character's perspective in equal measure."

I'm not going to pass any comment whatsoever on their decision to compare themselves to the immortal bard, and simply point out that Hamlet isn't billed as "A play about Denmark".

Thursday, 26 September 2013

Gentlemen of the autistic spectrum: don't be that guy

I've met some fantastic Aspie blokes, both in real life and on the internet.  They're clever, talented, witty, gentlemanly, decent human beings.  They're good value.

But there is a small minority who aren't.  And for them, I have a message:

No, I won't sleep with you just because we're both on the spectrum

Because there's a small subset of Aspie men who seem to expect that of Aspie women.  I first encountered this phenomenon when I signed up for a big, busy autism forum, using an obviously feminine username and a picture of Cassie from Funky Squad which was my avatar everywhere at the time.

When I next logged in, I had half a dozen personal messages from forum guys.  Some were polite, of the 'hi, you look friendly, want to get to know each other better?' variety, which was sweet if a bit premature when I'd only made one post and for all they knew I could be an axe murderer.   Others were more... forward.  One informed me that I had a moral obligation to sleep with him for the future of the Aspergian master race.

RomantikBy all means send someone a note to say that you think they're interesting and you'd like to get to know them better.  But references to the continuation of the species are not appropriate the first time you make contact, even if you would like to eventually do the horizontal tango.  Try initiating an actual conversation, something like "Hi, I saw your post on X.  I think [thing related to X].  What do you think?"  Show some interest in them as a person, not just as a potential source of sex.  If there's chemistry, it'll happen.  If there isn't, going straight to the biological isn't going to help.

I replied to most of the messages (not the master race guy) because I was young enough to be flattered by the attention and optimistic enough to think it might actually lead to something.

The next thing that struck me was how quickly some of these guys tried to escalate the relationship.  One was talking about travelling from overseas to meet me before I'd even told him my real name.  That's not romantic.  That's scary.  That's a big flashing warning sign with a klaxon sounding.  For heaven's sake, just slow down.  You can't force a relationship to develop more quickly than is natural by sharing too much about yourself too soon, or through sheer volume of contact.  And you risk scaring the other person away if you try.

All these chaps happened to be people with whom I had absolutely nothing in common other than a diagnosis.  Our political leanings were very different, as were our tastes in TV and music.  There were significant religious differences, too.  There was nothing to base a relationship on.  What would we even talk about?  So, it really felt like they weren't interested in me, as a person, at all - they were just after an Aspie lady, any Aspie lady, and I happened to be one.  But a relationship needs more than that.  And no woman will be swept off her feet by "you'll do."

This phenomenon is unique is a very, very small group of people.  Most of the autistic blokes I know are great guys.  Some are in long-term relationships, some are doting dads.  And they don't deserve the occasional creep giving them a bad name.

So don't be that guy.

Monday, 23 September 2013

Monday Muster

Happy Monday, dears.  Have some lovely tulips:

A Colorful Evening
Photo by Sandeep Pawar
I haven't done a Monday Muster for a couple of weeks, because even though they're just a bunch of links to other people's stuff they still take a while to put together, and I'm working at the moment so I don't have much of that to spare.  So this is an assortment of stuff from the last few weeks...

Are you autistic, either officially or self diagnosed?  Life on the Spectrum is running a poll to see how many of us have been to counselling.  Vote here.  77% of respondents had voted 'yes', at time of writing.

Have you heard about the game in development called Thralled?  It sounds fascinating, and if it makes it to completion I hope there's a PC version so I can have a go.

Where Bloggers Blog is an interesting blog if you're up for having a vicarious peep into other people's homes.   It's exactly what it sounds like - a series of photos showing where people sit while blogging.  It covers the full spectrum of spaces from chic homes that don't look like places where real people even live, through to disaster zones cluttered with shit that look like my own workspace.  There are also the occasional laptop perched in a park or cafe, and at least one submission from the lavatory.

Rachel Cohen-Rottenberg from Disability and Representation takes on the often-avoided issue of disabled people's over-representation among the homeless:

"The most obvious are the people with visible disabilities: people who use wheelchairs but can only move them by shuffling their feet, people who need wheelchairs but can’t afford them, people who use walkers and push chairs on which all of their belongings are piled, people who are blind but have no cane and no guide dog.  Then there are the people who are  mentally ill: the ones who talk to the voices they hear, the vets with PTSD, the men and women labouring under severe depression. And then there are the ones with invisible disabilities: the middle-aged man who stims and rocks and self-talks at the bus stop, the older fellow with leg and back injuries, the young man who understands everything but has trouble speaking in words..."

Wired has an interesting piece on the neurodiversity movement:

"Empowered by the Internet, autistic self-advocates, proud dyslexics, unapologetic Touretters, and others who think differently are raising the rainbow banner of neurodiversity to encourage society to appreciate and celebrate cognitive differences, while demanding reasonable accommodations in schools, housing, and the workplace."

In this week's baffling science news, a preliminary US study has found that children with an autism diagnosis have doubled branches in their lower airways, potentially meaning you could tell empirically if someone's autistic by having a look in their lungs.  Dr Barbara Stewart, who did the research after noticing a number of autistic patients with 'doublets' in their airways, says this configuration is something that develops as a foetus.  That's significant, because if this lung business is confirmed it nails once and for all the argument about whether you're born with autism or whether you develop it later due to environmental factors.  You can read more here, or watch the video:

Wednesday, 18 September 2013

Staying in touch


I'm really crap at staying in touch.

Part of it is the mechanics of communication - I'm really shy, I don't like telephones, I can never think of what to say to keep a conversation going, so they peter out.  But that not knowing what to do next happens on a larger scale as well; I don't know how to keep a relationship going any better than a conversation, so it eventually fades out even if I don't do something to fuck it all up.

I don't know how much of my shyness is Aspergers, how much is anxiety, and how much is just the personality I was born with.  I think a goodly slab of it is learned aversion, too.  When doing something leads, over and over again, to unpleasantness or discomfort or actual pain, you tend to not want to do it any more.  That's why we spray water at cats when they jump on the dining table.  So when an Aspie's reached out and tried to interact with other people over and over again, and for their efforts have been bullied and ostracised and taken advantage of, called a retard and a freak and told to piss off and die, I think it's only natural that they'd be leery of trying again.

For all my alleged high-functioningness and the fact that I've interviewed people for a living, I can suck badly at conversation.  I just don't know how to keep them going.  Interviews aren't like conversations; they have a specific point (usually) agreed by both parties, there's a clear separation and understanding of the two different roles, and they generally follow a fairly predictable path regardless of the subject matter.  Conversations, on the other hand, are unpredictable and fluid - particularly the really scary ones where it's you and some stranger at a party or in a lift and they start talking at you and then you have to make words come out of your face in exchange or they'll think you're a bitch or a halfwit.  It's some of the hardest, most stressful work I've ever done.  I can't fathom that people do it for fun.

Being on the phone is even harder, for me, because you don't know what the other person's doing when you ring so you don't know if you're interrupting lunch or a funeral or if you're going to wake them in the middle of a really awesome dream and then they'll forget their dream because of you.  Plus you can't see the other person, so you don't know if they're rolling their eyes or flipping you the bird or holding the receiver away from their face and mouthing "it's this arseclown again!" to the person beside them.

On a broader scale, I tend to be very timid at relationships.  I don't like to make the first move, because I'm never sure if someone does actually like me or if I just like them and want to think they like me back but actually they've not even noticed me or even actively dislike me. (and I do just mean like in the liking sense, not 'like' like, because I don't do that.)  Again, it's a learned defensiveness thing.  The hand that doesn't reach out, doesn't get shat in.

A big part of it too is just exhaustion.  I haunt a couple of online forums, but don't often post.  I've got into the habit of read them late in the day when I'm tired, and while I have the energy to read, I don't have the energy to formulate coherent replies.  The same thing happens with some emails - they get filed under 'too hard, I don't have the energy for this now', and some of them stay filed there for days or for weeks or forever.

And part of it, I can't explain at all.  It's one of those Aspie things that there just are no words to describe.  Sometimes it's just... no.  Too many clouds and strings and it's all too loud and fuzzy and there are no handles.

I do genuinely like people (sometimes), cherish the friends I have and wish I had more.  I care about people, both ones I know and ones I don't, sometimes so much it hurts.  I have a lot of love to give, and a lot of it gets poured to my cat and fictional characters because people are just so damn hard.

It's difficult.  Really difficult.

But I do want to be friends.

Sunday, 15 September 2013

Of Aspergers and ear worms

Everyone gets songs stuck in their heads from time to time.  It's kind of annoying, but it passes and isn't really any big or even medium-sized deal.

But sometimes, my brain takes the whole song thing far too seriously.  Instead of just having a snippet of a tune drifting through my head, the beat of the song takes over my mind so completely it's really hard to get anything else done.  It's there constantly, the beat pounding so loud it's deafening.

I'm back working in radio at the moment, and consequently have heard Royals by Lorde and Just Give Me A Reason by P!nk a heck of a lot lately.  Now, they're taking turns invading my mind, and really cramping my style.  It's screwing with my already wobbly ability to focus on things I need to focus on, constantly derailing my train of thought, and interrupting at the most inconvenient moments.  The Pomodoro technique will only get you so far when your own brain's conspiring against you.  Plus I keep unconsciously grinding/tapping my teeth in time to the beat, so now I've got a really tense jaw and all the headachey blah-ness that comes with that.

This isn't the first time this has happened.  While I don't always have industrial-strength song-stickage going on, I do have something of a history with it.  And that means I know it's going to continue to be a monumental pain for Gods know how long.  Once I had Itty Bitty Pretty One by Thurston Harris lodged so tightly it nearly became a workplace incident because I kept humming the 'whoa-oa, do-do-do-do' bit involuntarily, and that was as annoying for the rest of the office as it was for me.  And don't even get me started on Edith Piaff's Milord, which accompanied me for months and can still be triggered with terrifying ease.  (Although, at the moment I'd have it back just to be rid of Royals.)

I don't know how much of it is Aspergers - although there is a thread over at Wrong Planet discussing similar experiences, so other people on the spectrum have experienced similar things.  But I have other neurological shenanigans as well, and I'm never entirely sure what causes what.  And if it is an Aspergers thing, is it the misbegotten musical cousin of autistic obsession, is it some weird mental stim, or is it related hyperfocus?  Is it somehow connected to the inertia thing, that brings trouble stopping one activity or train of thought and moving to another?  Since it's almost always songs with a heavy beat, is it related to the BPM and how that interacts with my brain waves?

The problem is that, unlike a normal-strength stuck song, which usually goes away by itself soon enough or can be dislodged by listening to another ear worm, there's no budging it when this happens.  It will eventually go away in it's own sweet time, but so will a dog that's chewing your leg off.  Listening to other songs doesn't help.  Listening to the offending song over and again doesn't help.  Mindfulness meditation might help if I knew what that actually was, but I've never found an explanation that didn't rely on weird instructions like "observe your thoughts but don't interact with them" and "be in the moment", which means absolutely nothing to me.

It's like an annoying neighbour having a party that's too loud and goes on too long and some of their musical taste is shit (seriously brain, Thurston fucking Harris?) except the party's inside your head.  So I'm trying to concentrate on work and life while some jackass has a bogan block party between my ears.

Wednesday, 11 September 2013

A roundup of creative Autistic people

Autism is often associated with maths or science skills, but really we have the same mix of talents as non-autistic people.  There certainly are people from all over the spectrum doing amazing things with numbers and computers and bunsen burners, but there are also Aspies and Autistic people in sport, in business, and the arts.  Let's meet a few from the artsier parts of the spectrum...

Update, December 15

Scottish singer Susan Boyle was diagnosed with Aspergers in 2012, having previously been diagnosed with acquired brain damage sustained during birth.  Here's where her professional career in music started, with her first audition for Britain's Got Talent:


Update, November 23

Annabelle Listic is an autistic artist, photographer, designer and blogger.  Her work includes things designed to be beautiful, calming, and/or useful to autistic people and visual thinkers - such as a series of buttons designed as communication aids, which are available through Etsy.

Update, September 21

Musician Torley is self-described as "a time-travelling, universe-crossing, autistic, cyberpunk monk", and has a website filled with music, art and writing.  Torley also has a Youtube channel full of tutes, discussions of work in progress, and fascinating pieces like this:


Norwegian musician Savant has worked in a wide range of musical style, particularly electronic genres.  Here's his track Siren, that came out earlier this year.

Autistic activist Alyssa from Yes, That Too is also an artist specialising in intricate geometric designs, which she sells through her online shop Because Patterns.

The late Finnish singer-songwriter Juice Leskinen was diagnosed with Aspergers in his 50s.  There's some information here, but the original Finnish doesn't fare terribly well in machine translation.  He was a prolific recording artist, and there's a Youtube playlist dedicated to him that's a hundred videos long.

Update, September 18

Danish singer/songwriter Maja Toudal has Aspergers, and as well as her musical career is working to educate people about the condition (link is in Danish.)  It was hard to choose just one of the songs on her Youtube page to include, but here is one of her original compositions, Troubled Waters:

 

Another singer-songwriter with Aspergers is Xolie Morra, frontwoman of The Strange Kind. I wasn't familiar with her before Mitch nominated her for this list, so I clicked on this song not really knowing that to expect.  It's bloody stunning:


US singer, guitarist, and former American Idol-ist James Durbin has Aspergers and Tourettes.  Here's a song from his album Memories of a Beautiful Disaster:


The Art of Autism is a program that connects creative autistic people of all disciplines - from visual artists to poets, dancers and comics - with clients and opportunities.  There's something like 350 artists on their books, and you can check them out here.

Another Aspie singer-songrwiter is UK rapper Example.  His diagnosis gets a name check in this track, Come Taste the Rainbow:



Historian and artist Steph Diorio's work can be seen in webcomics The Historians and Comedian Heaven, and she's also scriptwriter for Home By Now.  Steph has Aspergers, and on top of this hydra-headed creative activity is also a graduate student.

Japanese video game designer Satoshi Tajiri, whose creations include Pokemon, is another creative person with Aspergers.  One of his childhood special interests was insect collecting, and at one point his classmates would call him "Mr Bug".


Original list:


Aussie magician Tim Ellis has Aspergers, and performed an autobiographical show at 2009 Melbourne Magic Festival called Aspycadabra.

Singer/songwriter Ladyhawke is another person with Aspergers working on stage.  This is a live performance of Anxiety:


Scottish figurative painter Peter Howson has Aspergers.  You'll find some of his striking work in his online portfolio here.

Hikari Oe is a Japanese composer with multiple disabilities including autism.  This video features three of his tracks:

   

US hip hop-ist 50 Tyson has autism.  Days of the New frontman Travis Meeks has Aspergers, as does Craig Nicholls from The Vines and Adam Young from Owl City.

Songwriter, musician and later screenwriter and TV mover and shaker Raymond Thompson has Aspergers, and founded the Cloud 9 Childrens Foundation to help kids on the spectrum in New Zealand.

British actor, musician and screen writer Paddy Considine has Aspergers and Irlen Syndrome.

Courtney Love was diagnosed with 'mild autism' as a child. Dan Ackroyd describes himself as having mild Aspergers, as well as Tourettes for which he received therapy as a child.  Daryl Hannah also describes herself as having Aspergers, and attributes being 'blacklisted' in Hollywood to the interpersonal difficulties that come with the condition.

Have any more to nominate?  Let's keep this list going in the comments. *points downwards*

Saturday, 7 September 2013

Some words about words

I've always been good at stringing words together. Reading and writing have always been a source of immense pleasure for me, and now they're what I do for a living.  My word-wrangling and my ability to mimic a writing style (just like I unconsciously take on someone's style of speech if I hear them a lot) got me through a wordy university degree.

But it doesn't really gel with the usual Aspie stereotype, does it?

To a lot of people, 'autism' still means a small non-speaking child, and 'Aspergers' an awkward teenage boy maths-genius.  Some people genuinely don't realise we come in female, we come in adult and middle-aged and elderly.  And some of us are word-clever, rather than maths-clever.  (And some of us are nothing-in-particular-clever, and that's OK, because we shouldn't have to justify our existence.)

But you can't judge an Aspie's intelligence or ability to get by in everyday life by how or whether they use language.

One of the things about Aspergers is it tends to bring a really uneven skills profile.  So, the hypothetical teen boy genius might be able to understand a complex diagram of an obscure molecule, but be at a complete loss to understand or explain a simple poem.  Being able to write well doesn't mean I'm able to fill out Centrelink forms or do my own tax.  And neither of us, for all our skills, are necessarily able to work or live unassisted.  You just can't extrapolate one from the other.

I've encountered people - usually people who know me only through my online writing, and often people who know me only through a single article or blog post - who argue that I can't have Aspergers because words.  Some have been really quite unpleasant about it.  I've seen the same thing happen to plenty of other autistic people.  An articulate adult just doesn't compute with the haters' idea of what an Aspie is or can be.

Here's a thing: when one is confronted with evidence that one’s assumptions are incorrect, examine one’s assumptions before arguing with the evidence.

Because there's more to a person than their words.

Wednesday, 4 September 2013

As a rough estimate, I'd say I don't have a clue

Woman in a swimsuit waving while standing on a large rock on a beach, probably Washington State

This person is between twelve and sixty.

Group of nurses, Base Hospital #45

 There are between six and thirty people in this photo.

It's somewhere between two and fifteen kilometres from home to where I'm working at the moment, the cereal left in the box will last another day or maybe a fortnight, and I absolutely certainly have enough clean smalls for the rest of the week unless I don't.  Don't ask me.  I have no idea.

I really suck at estimation.  Whether it's distance, time, volume, how old someone is, how many pancakes I'll get out of a bottle of batter or how far I can drive when the needle has almost but not quite reached the bottom of the 'empty' stripe on the fuel gauge, the only consistency in my educated guesses is that they're consistently wrong.

This can be a bit of a pain in everyday life.  Bags of rice are always full until one day they're suddenly and unexpectedly empty.  My undies drawer is the same.  So is the balance on my phone.  I'm still using the same prepaid account I've had since I got my first mobile at uni, because if I had a call-now-pay-later arrangement I'd be ruined because how do you know how big a bill you're racking up?  Probably the same way you know how long it takes to get to the shops, how much pasta to cook for four people or how far it is to Monto.  Estimation.

The problem, I think, is that if I ask my brain to make a call when it doesn't have enough information to make an accurate judgement, it just gives up, panics and replies with the first bullshit answer it pulls out of the air.

It doesn't help that I'm often not paying attention properly, either, because I've got so much crap going on in my head at any one time.  So, for instance, I just meander through breakfast on autopilot day after day, not noticing that the cereal's getting low until suddenly (not really) it's empty.

I'd better go and do some laundry.  I've been sitting here writing this for somewhere between ten minutes and three hours.

Monday, 2 September 2013

Monday Muster

Welcome to a new week, dear ones.  Have some flamingos:

Flamingos Partying
photo by Pedro Szekely
 The Autistic Me has an interesting piece on parenting older autistic kids who are heading off to uni/college, getting their first job, or otherwise flying the coop.  It raises the complicated question of when supporting a young adult turns into cotton-wooling them, and holds them back rather than giving them a launching pad to fly from.

Group autistic blog We Are Like Your Child has a lovely piece from Neurodivergent K looking at her love of dance and movement:

"When I am dancing, I am not disabled.

"I am still Autistic when I am dancing, possibly at my most Autistic - sometimes I am a being of pure joy and sensation while I dance...

"All that changed is my environment, and the expectations it has for me. The expectation is that I can move with the music in a specific way. I can move with the music in those specific ways, and I can do it at an average or better proficiency. When the language is movement, when the social cues are the leading and following of the whole body rather than of subtleties, I am on even footing."

Author with Aspergers syndome Gretchen Leary has penned a sad, thoughtful post on her struggles to make friends and connect with people, and yearning for that connection that's so hard to find:

"I can do empathy. I think I always have been able to do that part. My issue is actually the opposite most times. I feel so much pain when I see someone in pain that I react too intensely. It seems out of place to them."

What is a disability, and what is a 'cure'?  If something makes life easier for someone, but makes them look or act or be less "normal", is that a cure?  Rachel Cohen-Rottenberg looks at this in relation to her auditory processing problems on her recently redesigned blog Disability and Representation.