Sunday, 22 December 2013

Christmas in an Aspie household

Christmas has always been a low-key affair at our place.  We're not a very big family, or particularly outgoing, and we're not big on "stuff" so the whole commercial aspect of the season doesn't mean much to us.  Quite a few of us are also neurologically interesting, and it's interesting how, without conscious planning, our Christmas traditions have evolved to be very Aspie-friendly.

If at any time in the previous 12 months you've used "retard" as an insult, Santa will shit in your stocking
1. Christmas is home-time

It's not a day to be spent travelling, traipsing around various relatives' houses, at the beach, in a restaurant, or anywhere other than at our own HQ.

2.  It's predictable and simple

 Our family Christmas routine every year looks like this:
  • Open presents
  • Have breakfast
  • Do any plant watering, animal feeding or other jobs that don't stop just because it's Christmas
  • Play with, assemble, try on, watch, listen to or read our presents
  • Lunch.  This used to always be a roast chook or duck back when we kept our own poultry, but these days it's more likely to be some cold ham and salad, which is easier to prepare and leaves less washing up
  • Nap
  • Afternoon tea
  • Phone calls to other branches of the family
  • TV or more faffing about with our presents
  • Tea time, extended TV or present-faffing, and bed

3. We don't do complicated decorations

Our total efforts in the decorating stakes usually run to one small Christmas tree with a few baubles, and a small bookshelf nativity scene made up of whichever bits of the nativity set we haven't lost yet, supplemented with a selection of ornaments, action figures, and random household objects.  (FYI that shell makes a better manger than the actual manger that came with the set.)  Compared to that, the visual clutter of the decorations in the shopping centres just knocks me backwards.

4.  We don't really do lights

We have a single string of plain, non-coloured, non-blinking, non-fancy-shaped lights on the tree this year, but we seldom turn them on.  We turn them on now and again to enjoy the ambience, but when we're done enjoying the ambience we turn them off again.  They don't stay on while we're watching TV, for instance, or playing the piano (the only other things we really do in the room where the tree is) because then they stop being ambience and become a distraction and a sensory annoyance.

5.  We don't care if we're different

Christmas has evolved into much more than a specific religious festival, and it means different things to different people.  For some, Christmas means a house full of screaming, delighted children gleefully killing each other with whatever plastic weaponry Santa brought them.  For others it's a barbecue on the beach.  Gallons of beer.  A nine-course degustation menu.  Camping.  Cricket.  Church.  Massive hot meals.  Travelling somewhere snowy.  There are as many ways to celebrate as their are people celebrating, and our low-key, Aspie-friendly shindig is just as valid, just as special, and just as "Christmassy", as another family's all-singing, all-dancing, flashing-lighted blowout.

Christmas is what you make it.  Make it whatever works for you.

This is the final Letters from Aspergia post for 2013.  Posting will resume with Monday Muster on January 13, 2014.  Thank you very much for reading and supporting the blog this year, and I hope the holiday season is everything you want it to be.

Monday, 16 December 2013

Brace yourself: Christmas is coming

Christmas is generally accepted to be a wonderful time of year, full of peace and joy and goodwill and so forth.  But for a lot of people, it's actually a bit rubbish.

For a start, Christmas is supposed to be all about family and being around the ones you love.  But sometimes, we don't have a family, or we're estranged from them, or said family is so toxic that spending time with them is painful or even dangerous.  Or, through choice or circumstance, we might be so far away from our families that we can't be together for Christmas.  So the constant reminders of what everyone else seems to have, but you don't, can make this time of year really quite painful.

(Of course, everyone doesn't have a large, loving family - but when that's the image you see over and again, it's easy to think you're the only one whose life is different.)

Christmas poster featuring a koala dressed in Santa hat and boots ca 1920

Christmas can also be a really expensive time of year.  It's a very heavily commercialised holiday, and there's a lot of pressure to keep up with presents and fancy foods, not only for your own family but for whatever work/church/club/other group shindigs you're socially obliged to attend as well.  If you're single and don't have much in the way of family you can largely opt-out of Christmas for yourself, but expect funny looks if you tell anyone else about your Yule Avoidance Strategy.  But if there are kids, there's probably a strong urge to give them a "proper" Christmas, or at least a better one than you had when you were their age, and a lot of guilt tied up with not delivering that.  And if that means breaking out the credit card, that can be an expensive exercise.  Combine that with workplaces shutting down or reducing their hours over Christmas, or the post-Christmas lull that hits some businesses as their customers save to pay off their Christmas bills, the back-to-school bills, and the rates, and you've not only got a credit card bill, but less money to pay it off.

And that's before you get to the mechanics of why Christmas can be uncomfortable for autistic people - the changes to routine, the sensory overload, and the complicated social manoeuvring.  That's a post for later this week.

But please remember, if you're one of these people full of the joys of the season, that it's not a hugely happy time for some of us.  Don't mock us if we don't share your good cheer - we feel quite bad enough already without you reminding us that we're Doing Christmas Wrong.

And please remember, if you're one of the many for whom Christmas isn't a great time of year, you're not alone.  There are a lot of us in the same situation.  Do what you need to keep yourself safe, sane and as happy as possible.

Monday, 9 December 2013

Of Aspergers and self-diagnosis

The last post was about how hard it can be to get an Aspergers diagnosis, especially if you grew up in a time or place where the condition wasn't really understood.  The net result of that is that there's a great many undiagnosed Aspies getting about, some of whom will have no idea they're on the spectrum and there's a whole population of other people who are different in the same way they are.

But there will also be people who suspect (or know) that they're on the spectrum, but through choice or circumstance don't have an official diagnosis.  They might be parents of diagnosed children, who recognise their own behaviour and challenges in their child.  They might have had a doctor or specialist suggest the diagnosis, but not gone through the official diagnosis process.  They might have pored carefully over the diagnostic criteria by themselves or with their family.

Fox cubs being sold as household pets
Phaidaux suspected he wasn't like the other cubs
There are plenty of reasons a person might suspect they're on the spectrum, but not go for an official diagnosis.  Money is a massive contributing factor for many people.  Seeing a psychologist can be a pretty expensive exercise, and while you'll get some of that money back through Medicare you have to actually pay it before you can be reimbursed.  Time is another factor.  The stigma still associated with seeing a psychologist is another.  In rural and regional areas, even having access to a psychologist to see may be an issue.

Another deciding factor for some deciding whether to pursue diagnosis is what use it'll be.  Will it provide access to services? (Are there even any services to access?)  Entitlements to benefits or support?  Help at work?  If you don't have a practical need for a diagnosis, is it really worth going through the palaver of getting it?  For some people it will be.  For some it won't.

So, does a person with a self-diagnosis "really" have Aspergers or autism?

If someone's gone through a reasonable process of self diagnosis, and has legitimate, evidence-based reasons for their conclusion, I think it's unhelpful to argue that their suspicion is invalid until a specialist agrees.  Some things should require an official diagnosis - taking part in medical studies relating to autism, for instance, unless they're specifically investigating self-diagnosed people - but just getting through life is an entirely different proposition.

The really helpful thing about my own diagnosis was the insight and self-awareness it brought, and that it led me down a rabbit hole of learning about sensory issues and social gubbins and learning from other Aspies.  If you can do that without having to go through the rigmarole of getting officially diagnosed, good for you.

Some useful links of a self-diagnosis nature:
The Aspie Quiz
Polite Yeti's by-autistics-for-autistics autism criteria
Autism Spectrum Quotient test
How ASD is diagnosed (utterly child-centric, but might be useful)


Wednesday, 4 December 2013

The hidden army of undiagnosed Aspies

Speaking from experience, it's pretty hard to get an Aspergers diagnosis as an adult.

My own life is deeply blessed in comparison to the circumstances people are living with in less fortunate parts of the world.  I grew up in a peaceful, first world country with a good medical system, with trained teachers and doctors and counsellors in ready supply.  But even so, it took me a quarter of a century to get diagnosed, despite having symptoms that are (in hindsight) pretty obvious.  And when I was diagnosed, it was largely down to luck.

There are a lot of reasons for that.

Aspergers only became a thing one could be diagnosed with during my high school years, and in those days most peoples' idea of autism was the rocking, nonverbal boys (and it was always boys) one read about occasionally in Readers Digest.  The depth of the spectrum wasn't really understood at all.  And if you don't know a thing exists, you won't be able to recognise it.

Then, my book smarts and apparent cleverness hid the challenges I was facing in pretty much every non-academic area, and my kick arse verbal skills made me sound like I had my shit together and understood the world much better than I actually did.  So the idea that all might not have been well below deck just didn't occur to anyone.

Another big contributing factor to how I sailed under the radar for so long is that I'm naturally quiet, passive, and want to fit in and do well.  I never "acted out" or "exhibited behaviours".  I just quietly did my schoolwork, cried a great deal, and tried to stay out of everybody's way.  But because I never pitched a fit or burnt anything down, I doubt anyone realised what I was going through or that I needed help.  It's all well and good to have programs to help "disengaged" youth, but disengagement doesn't always mean causing trouble.  How are we reaching the kids who are quiet and bookish but are just as disengaged and need help just as desperately as the loud, disruptive kids?

All these things mean there are a lot of undiagnosed adults on the autism spectrum out there.  How do we get a handle on the numbers, though?  How do you count something that is, by definition, unknown?

A lot - I'd suggest the vast majority - of these undiagnosed folk don't suspect they're on the spectrum or even know the spectrum exists.  I certainly didn't, right up until the moment a psychologist asked me "what do you know about Aspergers syndrome?"  I'd never had anything to do with Aspergers or the autistic community, I'd never researched it - why would I? - so I had no reason to ever make the connection between autism and my own tangled up way of being.

White canyon near Sipapu Bridge. Natural Bridges National Monument, 05/1972.
Being alone: not always awesome

That diagnosis is the best thing that's every happened to me.  Even though there's very little available in these parts unless you happen to be six years old, just having that information has equipped me with tools and self-awareness to help me help myself.

And it makes me sad to think that there are other people still feeling the way I felt pre-diagnosis.  Not understanding why they're different.  Feeling so very, very alone.

They deserve better than that.

Monday, 2 December 2013

Do you like you?

If you're an outsider - which a lot of Aspies are - you're probably lonely sometimes.  Maybe often. Maybe all the time.

You don't have to live alone in the wilderness to feel lonely.  Sometimes, if you're different from the others around you and you don't feel like you belong or are understood, the loneliest place to be is in a crowd.

Maybe you have family that loves you but doesn't 'get' you.  Maybe your interests or skills or values aren't a good match for the community where circumstance has planted you.  Maybe you just feel apart, rather than a part, of what's going on around you.

That feeling hurts.  For all the solitary rebel badass tropes, humans are social creatures and we're designed to be part of a community.  And when you're not - when you don't feel that connection - that can, genuinely, hurt.

Sometimes that disconnection is genuine.  Sometimes we just don't fit in.  That doesn't make you a bad person - some communities aren't welcoming, or accepting, or healthy places to belong.  Sometimes not fitting in is the only sane and healthy thing to do.

Sometimes, we might feel more disconnected than we actually are, because Aspergers can do weird things to our emotions and our social awareness and our biological cocktail of human interaction chemicals.  Sometimes our peers are sending us the myriad tiny signal that say "you are welcome here", but we can't pick them up.  Like the 52hz whale, we operate on a different frequency.

Also, a lot of us are good at black-and-white thinking, and our minds can turn one bad encounter in to a nobody likes me spiral of despair.

Never mind whether other people like you... do you like you?  

Are you proud of the person you are?  Never mind whether others are prettier or cleverer or skinnier. Are you the best possible version of you?

Or is there more you'd like to do?  More you'd like to learn?  New places to see, books to read, experiences to have and skills to master?  Are there things you want to do?  To be?

Do them.

You will never again be as young as you are at this moment.

And, with luck, it'll keep you busy enough to take your mind off being alone.

Monday, 25 November 2013

Monday Muster

Happy Monday, dear ones, and happy anniversary:

Doctor Who 50th Celebration - Matt Smith's sonic screwdriver
Photo by Paul Hudson

(I'm writing this on Saturday night, a few hours before The Day of the Doctor is broadcast, so consider yourself lucky that you'll miss my inevitable fangirling and dissection.)

Apologies before we begin for the length of this week's muster.  I've finally cleared out the folder marked "stuff", so there's quite a bit of stuff in this edition!

Are you of an artistic persuasion?  Here are 12 marketing tips for artists, from The Art of Autism.  They've been written specifically for artists on the spectrum, and could be particularly handy since promoting our work and 'selling ourselves' is a challenge for many of us.

Our man in the Philippines, Gerard Joseph Atienza of Autistic BigBro, attended the Philippine National Autism Conference late last month.  It sounds like a really interesting event, with everything on the table from research to social inclusion to how the media portrays people on the spectrum.  Gerard and a crew of other autistic adults also held a panel to discuss their own lives and journeys:

"It was such an exhilarating experience to be part of this conference, and together with fellow autistic guys, whom I shall call Team Awesomeness, there is hope for autism. And it doesn’t stop at the conference. Hope begins here, and hope begins now."

I don't know why the concept of the selfie seems to be all over the media at the moment, but here's one that's actually worth talking about.  Elsa S. Henry from Feminist Sonar is blind, and posted a selfie recently which shows the eye that's caused her shame and bullying in the past.  The act of posting it was a statement to show that she refuses to be shamed or bullied any more:

"...My selfie is not a cry for help.  My selfie is a fucking battle cry.  My selfie says that I am no longer ashamed."

I haven't blogged about the recent controversy surrounding Autism Speaks, but if you move in autism circles you may already be familiar with it.  The US charity put out a statement which used such negative language to describe autistic people - as burdens, as missing, as destroyers of our families and as not really alive - that all hell broke loose.  Autistic people from all edges of the spectrum commented on the AS site and on their own blogs, the This Is Autism flash blog was organised, AS's only autistic board member resigned, and a physical protest took place at the event the original statement was released to launch.  I missed most of this thanks to the chest infection which took me out for most of last week, but there's a good round up of links that will explain everything here.  Just Functioning also has a lovely post explaining why many autistic people were offended by the original statement.

Remember James, the young British man mentioned in a recent muster, who's been getting an endless stream of letters demanding he prove he's not able to work, despite him being blind and having autism, epilepsy, and learning and cognitive disabilities?  The government's conceded at last that he can't, and he'll get financial assistance indefinitely.  It's just a pity he and his father had to literally turn up on the Prime Minister's doorstep before that happened.

There are some museums and art galleries in the US doing interesting things to make their collections accessible to patrons with disabilities.  New York's Metropolitan Museum of Art has sign language tours for the Deaf and hands-on sessions for people with vision impairment, while the Smithsonian lets people with autism and cognitive disabilities come through before the usual opening hours, when things are quiet. You can find out more in the New York Times.

How do you handle procrastination?  I have major trouble with it - usually because the thing I'm putting off involves social contact that I just don't feel up to, or because I'm so scared of failure that just not finishing the thing looks like a good alternative.  Writer and designer Kelly Exeter's found an approach that works for her: whatever the thing is you dread, get it done first thing, and then it's over with and you don't have to spend the rest of the day dreading it.  It's based on some advice from Mark Twain:

"If the first thing you do each morning is eat a live frog, you can go through the day with the satisfaction of knowing that that is probably the worse things that is going to happen to you all day long."

Autisticook has been looking at procrastination and executive functioning lately too, and has had a breakthrough.  Congratulations!

Being introverted in a world where that's seen as a character flaw can suck.  It's not something that just affects people on the spectrum; plenty of neurotypical people just happen to be introverted and not fond of massive, loud, chaotic gatherings.  It's something Regina Lord of Creative Kismet encounters every few years:

"It happens every couple of years. Someone, a new or close friend or regular acquaintance  decides that there is something wrong with me, I need to change or that it is their job to fix me, all because I would much rather stay home....

"...The feeling that your friends don’t get you at all, or refuse to get you, is a really crummy feeling."

Unrelated to anything, but I just rediscovered Geoguessr and am a bit addicted.  My best score so far was about 14,000 - I got lucky there, the set had two Aussie locations which I could pin down to within a few kilometres.

Monday, 18 November 2013

A seat at the table

"To have a seat at the table" means to have your opinions heard and respected in a debate or discussion.  But it may be an unfortunate turn of phrase, because it brings to mind an actual physical table.  Tables can only have so much perimeter, due to the laws of physics and interior design, so there's only ever room for a finite, limited number of people to sit around them.

[CHILDREN WITH JIGSAW PUZZLE OF LEUTZE'S PAINTING OF "WASHINGTON CROSSING THE DELAWARE."]
especially when the first ones in spread out and cover the whole damn surface with jigsaw pieces
This creates a fallacy of scarcity; that there are only so many chairs to go around, and if someone else gets one, there may not be one left for you.  It's a classic divide and conquer move, because it sets all the stakeholders at each others' throats fighting over imaginary chairs, playing games of My Lived Experience Trumps Your Lived Experience, to the extent that we all forget about the common enemy we'd actually gathered around the table to discuss.

This, I think, happens sometimes in the autism community - by which I mean not just autistic people, but families of autistic people, therapists, teachers, and whoever else has a horse in the race.

Parents with a severely autistic infant and a complete absence of useful services see an independent, successful autistic 40 year old speaking eloquently about their life, and are heartbroken that this person might get a seat at the table while their own cries for a future for their child go unheard.

Autistic adults living with homelessness, unemployment, abuse, and a complete absence of useful services see non-autistic parents complaining about getting funny looks in the supermarket and are heartbroken to think that gets attention at the expense of their own utter despair.

In that situation, all to often the discussion degenerates into one side or both trying to discredit the other. And in between all the shouting and flinging of insults, the "you're not like my child!" and the tears and exhaustion and frustration on both sides, the actual point takes up its hat and cane and strolls out the door never to be seen again.

Rather than focusing on the differences between us, we should be looking at the similarities.  Go back and re-read those two apparently opposing points of view.  What are the common themes in both?

A complete absence of useful services is one.  Heartbreak is another.

When we realise what we have in common, perhaps we will stop fighting.  When we realise that what helps today's autistic children will help tomorrow's autistic adults, and what helps today's autistic adults will help the adults today's children will grow into, maybe we'll be ready to start actually building that help.

But first, let's build a small bonfire and burn this idea that there's only room in the discussion for one way to do autism, for one kind of autistic person, and for a select few voices to be heard.  Let's set ablaze this idea that others struggles and lived experiences matter less than our own, and reduce it to ashes to be blown away in the winds of change.

Let's build that bonfire out of the imaginary table.  So we never again fight for imaginary seats around it.

Monday, 11 November 2013

Monday Muster

Hope your Monday is treating you well, dear ones.

I highly recommend you bring an end to what you're feeling inside. (200)
Photo by Meg Wills
 Temple Grandin says more work needs to be done to understand the sensory aspects of autism.  The article makes a point of mentioning "even clothing materials" can trigger sensory trouble, as if that's surprising.  It's an interesting reminder of just how little most people understand autism, since clothing is one of the most common and obvious sensory troublemakers.

Britain's not a great place to be if you're disabled at the moment, with the government's Fit to Work scheme asking people who patently can't work to bend over backwards to prove their unemployable status.  Take James, who's 19 and has autism, epilepsy, vision impairment and severe learning disabilities.  His family's received a string of letters - they got three in four days at one point, which sounds not unlike my own history with Centrelink - threatening to cut his benefits unless they could prove James couldn't work.  So, they turned up on the Prime Minister's doorstep and said "right, if you think he can work, give him a job."

Want to go viral?  Here are some practical tips, from what to name your masterpiece to where to post it, from Karen X Cheng, whose video Girl learns to dance in a year has had, at time of writing, three and a half million views.  That's not quite Psy territory, but it's a damn sight better than the 15 I once had on a Dangermouse fan vid on a Youtube account I've since lost the password for.

Take this with as many grains of salt as you need, but ape shows signs of autism. (From 2011, but I just found it.)

Looking for Christmas gifts?  You can fill your stockings and support autistic artists, designers and craftspeople with the Parenting Autistic Children with Love and Acceptance Holiday Shopping Guide.  There are all sorts of goodies listed, from books by autistic authors to clothing, art, photography, leatherwork, jewellery and homewares.

In some pockets of the autism community, it's unfortunately A Thing to take photos or videos of children in meltdown, self harming or otherwise in distress, and put them online to show The True Horror Of Autism.  This is never OK.  But apparently the same thing also happens in other parents-of-kids-with-disabilities communities.  Kara Ayers has Osteogenesis Imperfecta, the affects of which include brittle bones and frequent fractures.  She's noticed a disturbing fad for parents to snap a picture of the freshly fractured child - before tending to their injuries:

"...One of these pictures was particularly disturbing. The child was in obvious agony, crying, and her leg was completely unsupported.

"As someone who has experienced this type of fracture, the image triggered memories of actual pain that I could feel in my body. The moments before a broken bone is splinted or at least supported by something are saturated by a level of pain that’s difficult to describe and impossible to just imagine. Even if a photograph required a couple of seconds to snap, that’s two seconds longer than the child needed to suffer for the sake of an image.

"Pictures like these are not isolated to the OI community. Friends with other disabilities share stories of graphic post-op pictures of children wearing little clothing and crying. Close-ups of feeding tubes on the chests of tween girls and videos of children resisting physical therapy are being posted by parents on a relatively frequent basis. The disability community at large must ask the question: What do parents of these images seek to gain?"

What indeed.

Friday, 8 November 2013

You don't know what you don't know

Sometimes, you don't know what you don't know.  And in when that's the case, it's really hard to find any useful information.

Take, for instance, my long slow process of figuring out what my body's telling me.  It took me a long time - into my 30s - to work out the difference between the sensation of hunger and that of anxiety.  (I still get the two mixed up, and suspect I always will.)  One of the reasons it took me so long to get my head around this was that for much of my life I've been unaware that the way my body experiences both physical sensations and emotions is different from other people.  Only once I knew that was I in a position to start trying to work out what individual sensations meant, or separating similar-but-different sensations like hunger and anxiety which I'd previously thought were one thing.

But what if you don't know that your body is different from other people's?  How would you even begin to work that out?  Before I started properly getting my head around this Aspergers business and listening to other people on the spectrum, I'd never heard the remotest suggestion that everybody's senses weren't identical.  The discovery that sensory dysregulation is a thing which exists was a massive key for me, which unlocked all sorts of self discovery.  I would never have stumbled across that key if left to my own devices, no matter how long I spent scouring the internet or contemplating my navel.  Because I just didn't have enough information to work with.

Another more basic example is the concept of Aspergers itself.  My own diagnosis involved a great deal of luck and co-incidence, and I probably never would have worked it out myself.  A lot of people do make meaningful self-diagnoses, but I doubt I'd have ever made that connection.  I had a very 1980s Readers Digest idea of what autism was, all tragedy and horror and small boys, and would never have realised there could be a me-shaped space on the spectrum.

That's one reason why it's important that lots of Autistic voices are heard, from all sorts of very different Autistic people from all over the spectrum.  The countless unknowingly Autistic people who are still out there, wondering what's wrong with them and why they're so utterly, utterly alone in the world, deserve to know they're not wrong and they're not alone.  They deserve to know there's a reason they are the way they are, and a global community of others like them.

They deserve a key.

Wednesday, 6 November 2013

Spirituality and Aspergers

Aspergers and religion have an odd relationship.

There's a common misconception that all Aspies are atheists, either because we don't understand religion or because we're too logical, science-brained and Spock-like to have any time for such things.  It doesn't help that the obnoxious end of the atheist movement - the ones who aren't content to just make their own decisions about their beliefs, but then feel the need to harass and mock people who choose differently - does include some Aspies in its ranks.  But that's not because Aspergers and atheism are a match made in, well, heaven.

In my experience, whatever Aspies believe, they tend to be really staunch believers.  I don't think it's a co-incidence that some of the most religious people I've ever met, and the hardest hardcore atheists, have been on the spectrum.

Aspie and autistic pagans are more common than you might think.  I'm active on a large pagan forum where neurodiversity is very well represented and there's at least two other active members on the spectrum, and I've also met other autistic pagans in the course of random online conversations.

All this proves that we come in the same range of religious flavours, from militant atheist to Christian to minority religions to utter apathy, as the general population.  The distribution might be different - I suspect we  might have more people at the extreme ends of the range - but overall we're as spiritually diverse and varied as any other randomly selected group of people.

While we're talking about religion, I'd like to mention the very old and sadly not yet entirely extinct idea that autistic people don't have souls.  I don't know where this came from, but I suspect it's a hangover from the belief in "changelings", which is possibly an old folklore attempt to explain autism.  By tradition fairies don't have souls, so changelings, being fey creatures left in place of the stolen human child, wouldn't either.  Or maybe it's just some ableist horseshit.  Either way, it's perhaps the weirdest and most bewildering lie I've ever heard about autism.


Monday, 4 November 2013

Monday Muster

Happy Monday, dear ones.  Have a beautiful photo by Ikhwan Zailani

Lonely::HDR
Lonely by Ikhwan Zailani
Here's this week's roundup of interesting stuff going on around the internet:

Autistics Speaking Day
Disability as an identity versus an insult, as explained by Hagrid
Being one of Those People
How not to write an article about autism (and how, as a journalist, not to respond to criticism!)
Disability-friendly art experiences

In The Netherlands, there's a plan to "encourage" the elderly, disabled and chronically ill pay for their care through voluntary work.  It's being spun as a means of reducing isolation and loneliness, but it smells suspiciously like making people justify their right to exist.  I don't like the road this leads down, because people don't deserve care because they give back to the economy - they deserve care because they're human beings.

I grew up without a diagnosis, but let's get one thing quite clear: I knew perfectly well there was something "wrong" with me, and I wasn't like other people.  Finding out what was the greatest relief of my life.  So why do people not tell their children about their diagnosis?  That's something Chavisory wrote about recently, and uses an excerpt from Dante's Inferno to describe the feeling of growing up autistic and not knowing it:

How hard it is to say what it was like
in the thick of thickets in a wood so dense and gnarled
the very thought of it renews my panic.
It is bitter almost as death itself is bitter.
But to rehearse the good it also brought me,
I will speak about the other things I saw there. 

Some autistic people talk about a fellowship between people on the spectrum, an automatic 'clicking' where you understand each other and get along from the moment you meet.  Personally, I haven't experienced that.  There are autistic people I get along wonderfully with, but given that autism is so very big, overall I don't think I'm any more likely to get on with another autistic person than with someone who's not on the spectrum.

Autisticook has had a similar experience.  They recently had their first chance to meet other autistic adults in person - and found that the rest of the group's mindset was very different, and very concerned with passing and being "normal".

"Throughout the session, that impression was reinforced over and over. People were asking “If I don’t do things like that, then maybe I'm not actually autistic?” Looking for things that would prove they weren't doomed for the rest of their lives. Looking for hope that maybe some day they could be fixed and be normal. Only seeing the negatives. I felt like I was the only one emphasising the good bits, the strengths, the FUN aspect of autism, the connection with other autistic adults, the recognition and acceptance that comes from finally belonging somewhere.

"It was heartbreaking. It was exhausting." 

I doubt there's anyone with invisible disabilities who hasn't been told "but you don't look disabled!" at some point.  There's a bingo card on Disability and Representation which has some wonderful comebacks for that inevitable line, from laughter and awkward silence to "and you don't look ignorant, but here we are!"

Speaking of not looking like things, a radio presenter I used to work with did an outside broadcast from a big public event while she was in the later stages of pregnancy.  A listener, seeing the voice in his radio for the first time, stared in surprise before blurting out "but she doesn't sound pregnant!"

In fandom news, The Bloggess is on the same continent as me, potentially dressed as a koala.  Jenny also recently discovered the meaning of life, and it makes a lot more sense than "42", which was the closest we'd come til now:

"Cheese is the meaning of life.  Because milk is the beginning of life and you need milk when you’re a baby and you need milk to make cheese and that’s how the world is made."

Monday, 28 October 2013

Monday Muster

Happy Monday, dear ones.  Have a stunning play of light and water by Paul Bica:

symphony

There are a few older pieces in today's roundup of interesting stuff, but they're still relevant and interesting.

Like Straight White Male is the lowest difficulty setting there is, a smashing look at privilege by John Scalzi, using gaming starting stats as an analogy.  If you're trying to introduce someone to the concept of privilege in a way that doesn't make them react with "how dare you say I have privilege just because I'm a straight white cis neurotypical!  As if I had any control over that!  Don't you know how hard my life's been?!" this could be it.

Four in five disabled Australians have not been visited by friends or family in the last three months.  More than half haven't had a phone call in that time.  Almost one in five have had no social contact with another human being in the last quarter.

This is not good enough, and a sign that something is very, very sick and wrong in our community.  Read more and continue the discussion on ABC Ramp Up.

Steven Coventry is crowdfunding a project to bring his collection of autistic art to Australia.  He's looking for $2,000 to stage an exhibition during next April's Autism Awareness Month, and at time of writing has raised $300.  If you're inclined to drop a few bob into his hat, you'll find his campaign here.

Barb Cook's shared her story of being diagnosed with Aspergers as an adult with Women's Weekly magazine.  It's well worth a read, and for once the comments section isn't full of shit either.  Speaking of Barb, her and partner Paul are off on an around-Australia motorcycle adventure, filming a documentary called Autism All Grown Up.  It's going to look at the lives of autistic adults, and pull no punches:

"We will delve into the areas of those who live on the streets, those who are stuck on welfare and live on the poverty line, what is the prevalence of those on the spectrum living in caravan parks, take a look at drug and alcohol abuse, gambling, addictions, suicide, abuse cases, sex workers, pornography, the gay/lesbian community, psychiatric institutions, employment, the prison and justice system, motorcycle clubs, aged care... You name it, the stuff you will most likely hardly ever hear about and quite often people don’t want to hear it. But it happens every day around Australia."

Here's another old one, but relevant: not only is it by my ongoing middle aged British man-crush James May, but it's about obsessions, something I've been thinking a lot about lately.  His thesis is that everyone has something that could be described as a "special interest", only the subject matter differs.  Some might be associated with autistic people (like the stereotypical bollocks about trains and maths) whereas others - like sport, booze and cars - are accepted as normal.  James explores that through the differences, and similarities, between himself and partner in crime Oz Clarke:

"With the best will in the world, I’m just a bit of a drunk. I enjoy drinking, I like the taste of wine and the belief that, after a bottle or two, I am an avant garde composer at the piano. I believe that the function of alcohol is largely to help shy and possibly ugly people to meet each other and have sex.

"But Oz is actually a wine enthusiast and connoisseur. He likes to look at gravel in vineyards. He likes to stand on a hill and think about how the wind and temperature dictate the rate of grape ripening and the effect that has on fruit flavours and acidity. He likes wine labels, wine corks and the boxes wine is shipped in, and knows everything about them...  Oz is, by any normal person’s standards, a wine bore.

"...in his 120-year-old face I see a tragic mirror of myself, another bore merely immersed in a different subject. One of the wine makers we visited drove an old Citroen DS and I discovered I could talk about it, uninterrupted, for nearly half an hour."

Citroen DS
photo by Michael Gil

Sunday, 27 October 2013

Consumer Directed Care: better days are coming

"Consumer Directed Care" is a phrase we're going to hear more and more in relation to disability services in Australia.  This, if it comes to pass the way it's intended, will be fantastic news.

It's about a change in the way funding for disability services work.  Rather than funding being tied to service providers, it'll instead be tied to consumers.  That's us.

For instance, at the moment a particular organisation might be given a particular bucket of money to provide a particular service to a particular demographic.  If you're a disabled person (or elderly, since there's a lot of this going on in aged care too) it's a matter of finding a local service which lines up with your particular needs.  If there is one.  If there isn't, sucks to be you.

It does suck, because often there are programs that would be really helpful for Aspies, but we don't qualify because we're not the demographic that service was set up to help.  A living skills course for people with intellectual disability might be really handy for other people struggling with self-care, for instance, but if you don't have an intellectual disability you're not eligible for the program.  Similarly I know of a program that does fantastic things getting people with mental illness engaged with society and where appropriate into employment, but autism isn't a mental illness so we don't get to play there either, even though that's a massive area of need for the autistic community.

However, under Consumer Directed Care, that all changes.  Instead of that money being allocated to a service provider, who has a plan for how best to spend it, it goes to us, the consumer.

That doesn't mean we literally get a nice fat cheque.  But it does mean we get to decide which organisation we deal with, and what sort of services we need.  We get to have a personalised, tailored plan drawn up between us, our carers if we have them, and our service provider(s), that lays out what outcome we're looking for, how we're going to achieve that, and who's going to do what to make it happen.  It gets reviewed down the track to see if it's working.  And if it's not, hopefully you'll be able to fire your care provider and take your business elsewhere.

So if a service provider doesn't offer anything useful to us, they don't see our money.  If they want our money they have to provide services we actually want and need.

And in a world where all too many autism services begin and end with preschoolers and ignore us once we grow up, anything that encourages meaningful, useful services has to be a good thing.

Saturday, 26 October 2013

Rock on

Rocking is a well known stim, but it took me a while to realise I do it.

I'd seen rocking frequently described as "back and forth" or similar wording, and in my literal mind that means a forwards-and-back motion.  I didn't twig that my gentle side-to-side motion is also rocking, just on a different axis.

That's how I roll.  Er, rock.
So I did a highly unscientific study by asking on Tumblr who rocked which way.  Here are the results so far:

Forwards and back: 3
Side to side: 2
Both: 9.  Most people mentioned that they do the two in response to different emotional states, and others mentioned that they rock forwards and back while sitting, and side to side while standing.
Both, and also diagonally: 1
Other rocking-type movements: 2.  Such as rotating back and forth at the hips.  I find myself doing a sort of figure-of-eight bobbing action sometimes, which probably falls into this category too.
Doesn't rock: 1, but this is probably a massive under-representation of non-rockers.  I'd assume a lot of people who don't rock didn't bother answering, since the question was loaded towards those who did.

So, what does this teach us?  Well, nothing, obviously, with a sample size of a dozen or so.  But it does illustrate just how varied an apparently simple action can be.

I think we need to stop talking about stimming in terms of specific behaviours, like rocking and hand flapping, and instead talk about when and why it happens and what it means.  Because if you have an unusual stim that isn't on the list, that doesn't mean it's not a stim.  Similarly something that is a recognised stim doesn't always have to be: there are all sorts of reasons one might flap their hands, after all.

I once had someone ask me for a list of Twitter's hashtags - as in, a complete list of all of them.  There is no such list, because they're constantly evolving, sometimes in a matter of moments, and there are potentially more hashtags than actual tweets.  Thinking about stimming just as a list of particular bodily movements is a bit like asking for a list of hashtags - it does rather miss the spirit of the thing.

Monday, 21 October 2013

Monday Muster

Happy Monday dear ones, have some accurate-as-ever xkcd:


I sometimes want to hunt down people who design sites with autoplaying video or "background" music and demonstrate just how startling and unpleasant it is if you already have sensory issues to start with.  It's like being hit unexpectedly over the head with a cricket bat.  Don't do that.  Especially if you then expect me to buy something from you.

Does the spoon theory work for you?  I use it, even though I'm not totally comfortable with it.  (For a start, it was conceived to describe chronic illness, and I worry that I'm stepping on toes by co-opting it to talk about autism.  And secondly, unless you know the history behind it, "spoons" doesn't give you any clues - you couldn't work out for yourself what it meant if you heard it in passing conversation, they way you might be able to with Karla Fisher's tokens analogy.  On the other hand, if you say you're "low on spoons", in some circles people will understand what you mean, which is a big plus.)

Luna Lindsey has an interesting adaptation of the spoons theory for autism, which pulls together not just energy itself but processing time (a big one for a lot of us) and brings in a gaming in-joke as well.  If you ever hear the phrase "reticulating splines" on this blog, you'll know who I stole it from.

Autistic Big Bro Gerard Atienza has added his voice to the discussion about "person with autism" versus "autistic person".   He raises the point - oft raised by autistic writers, but not often heard by the wider community - that it really is best to ask what terminology the person you're talking to or about prefers rather than just assuming it's one or the other.  The example Gerard used was when he and another student were discussing person- versus identity-first language in an interview:

"I asked him: “What do you preferred to be called: a ‘person with autism,’ or an ‘autistic person’?” Patty goes: “I prefer being called ‘autistic,’ because that is what I am.” After the interview, his Mom, an autism advocate herself, told me that she was surprised. She happened to be an advocate of person-first language... and she admitted that she haven’t even asked her son what he wanted to be called."

On the Autism Women's Network, Jean Winegardner's been writing about acceptance, and questioning why autistic people are expected to bend over backwards to fit in, in a society which does precious little to fit us.

"Why is the onus on the disabled to be accepted? Why is it our job to make you accept us?"

Good question.

Saturday, 19 October 2013

I love my obsessions

What's with Aspergers and obsessions?

A lot of theories about special interests by neurotypical experts concentrates on their use as a calming mechanism, something predictable and controllable that we can lose ourselves in as a means of dealing with stress and the weird, unpredictable world we live in.

Personally, I think there's more to it than that.

I do love my obsessions, but I lose myself in them because I love them, I don't love them because I can lose myself in them.  If it was just about losing yourself, it wouldn't explain why some things press my obsession buttons while other very similar ones don't.

Here's one of mine: Dangermouse.


I can talk about this for as long as you'd like.  Probably much longer than you'd like.  In fact I could probably talk specifically about this episode for the entire duration of the video.

But Count Duckula, another cartoon by the same creators, in the same style, featuring some of the same voice talent, that started as a spin-off of Dangermouse?  Nope.  I don't care for it at all.

It's a bit like how just because you fancy someone it doesn't mean you'll also fancy their brother just because they have the same genetics and/or upbringing.

There's actually more to that analogy than it first appears.  Some research shows that the brain chemicals seratonin and oxytocin appears to behave differently in autistic people, so some of us* may get less chemically-generated happiness from social encounters than one would expect. I've also read - although now that I want to link to it, I can't find the blasted thing - that we may in fact get that happy-lovely-brain-chemical goodness from our special interests as well as for people.  So if that's the case, the love analogy is pretty apt, if our special interests do to our brains what lovely schmoopy times to do neurotypical brains.

*I say 'some of us' because this 'cares more about things than people' thing has never been true for me: I care a great deal, I just express it differently and often struggle to express it at all.  I don't think it's at all fair or accurate to say that caring more for things than people is a standard autistic thing.  I also think there are plenty of neurotypical people who care much more about things than people!

Saturday, 12 October 2013

Autism is not just a boy thing

What does autism look like?

If you go by most mainstream media coverage and the photos splashed across the usual "awareness" websites, it looks like a small child who is almost always white and almost always male. But that doesn't mean white, male and prepubescent is the default state for autism.

Just as likely to be on the spectrum as that
little boy behind the sheet of shower glass
Just like heart disease, women on the spectrum can present very differently from our male counterparts.  And just like heart disease, research that mostly uses male subjects has resulted in knowledge about the condition being skewed quite heavily towards male presentation.

The official stats say there are about four males on the spectrum for every female, but I don't think that necessarily means it's four times more common in men.  Since getting a diagnosis still relies far, far too much on money, luck, and co-incidence, I think it possibly just means we're four times better at diagnosing males.

Here is a good write-up on the differences between autistic men and women, and some research findings into how the condition differs between the sexes.  And here is a case study, where an autistic girl had to wait much longer for a diagnosis than her brother who's also on the spectrum.

Women's presentations can be more subtle (insofar as anything is "subtle" if you don't know what you're looking for), but that doesn't mean we're less affected than our male counterparts.  In my experience, it just meant that my very obvious differences and difficulties were either misdiagnosed or it was assumed I was doing it deliberately for some weird reason of my own.

Want to learn more about women on the spectrum?  Find out from the source:

Blogs by women on the spectrum:
Autistic Hoya by Lydia Brown
Crazy Girl in an Aspie World by Amanda J Harrington
Disability and Representation by Rachel Cohen-Rottenberg
Golden Hearted Rose by Rose
Luna Lindsey
Musings of Ade
Musings of an Aspie by Cynthia
Radical Neurodivergence Speaking by Neurodivergent K
Tiny Grace Notes by Elizabeth J "Ibby" Grace
Yes, That Too by Alyssa

Resources for women on the spectrum:
Autism Women's Network: support for women and girls on the spectrum
Women with Autism Facebook group

There are no doubt loads of excellent blogs and resources I've missed, because the internet's a big place and I don't spend as much time exploring it as I used to.  So, if you've got a suggestion to add to the list, please leave it in the comments.

Wednesday, 9 October 2013

Answering questions from an Aspie child's mother

During yesterday's stumbles around the internet, I ended up on this post, where the mother of a kiddo with Aspergers asks a series of questions about her child.  There's a lot I can't answer - parenting and children are very much not my thing - but some of it really sounded like me as a child, so I thought I'd try to help if I could.  This turned into something far, far too long for the comments section on her blog, so I thought I'd stick it here instead:

1. Do Aspie children tend to lie or make up outrageous stories for no reason at all?  My son does this daily and I can’t seem to break the habit. He will lie when there is absolutely no need and his stories go way out into space.

Outrageous stories? Yep, did that.  No reason? Nope, there were reasons.

For a start, it took me a lot longer than other children to really grasp the difference between fantasy and reality.  Partially it was a maturity thing, partially it was an understanding-how-the-world-works thing, and partially it was about literal mindedness - stuff I I saw on TV or read about seemed as real to me as stuff I actually experienced, so it was harder to separate fiction from fact.

Also, I had a very, very active imaginary world going on as a kid.  In real life I was bored, lonely, and didn't have much in the way of a creative outlet, so this fantasy world developed where I was a child star, with a sort of Young Talent Time meets Degrassi Junior High meets the Marx Brothers groove going on.  So sometimes, I'd talk about stuff going on in my fantasy world like it was real, and in hindsight I'm sure those around me thought I was a compulsive liar and possibly a lunatic.  I wasn't.  I just hadn't yet developed an accurate 'reality filter'.

And now that I'm grown up and have a better handle on how the world works, I'm mortified by me-as-a-child's behaviour.  But I just didn't know any better.

2. Do Aspie children get sick more often than other children?

I've heard this, but personally didn't.  I do know that my health now's not as flash as it could be, mainly because sensory issues make eating a balanced diet hard (how do I fruit?) and I have all sorts of hangups about exercise so I don't do nearly enough.

3. Do most Aspie children talk obsessively? My son gets picked on about how much he talks. He says the other kids at school won’t play with him. They say he is crazy. He said even his best friend won’t play with him anymore.  So much for making him play sports all these years so he could make friends.

Yeah, some of us do. I went through stages where I did this, and others where I barely spoke at all.  When I did, it was usually a special interests related thing: I'd just found something that was so incredibly awesome I wanted to tell everybody all about it right now.  It took a while to learn not everybody finds my special interests as fascinating as I do.

There was also a reading-other-people element: I didn't know how to tell if the other party was bored, or even realise I should be thinking about that.  Like the tall tales, now that I'm older and I know better, my past behaviour makes me cringe.

These days, I sometimes get verbal diarrhea when I'm nervous.  It can hear myself talking shit and want to stop but just can't.  It's usually when I'm out of my depth.  It feels awful, and when it's over I get very angry with myself for having done it, again, for the umpteenth time.

4. Is it extremely hard for Aspies to grow up and have families? 

It can be hard, but it can be done.  I know quite a few people on the spectrum who are or have been in romantic relationships, and quite a few who have kids.  I know one very sweet couple, both Aspies, who have two lovely little kids.  On the other hand, some of us will want that and not get it, and some of us will not even be interested in family life, for reasons that might or might not be autism related.

One helpful thing my parents did (and still do) for me is to not force the issue.  They stopped long ago asking about whether I was seeing anyone, when they were going to get grandkids, or carrying on the family name.  I'm sure they worry about me being alone after they're gone, but they've never said "hurry up and get married!"  They understand that's just something I can't make happen.

5. Do Aspie children tend to be angry? Seems my son grunts and growls about everything.  He has a look that can slice you in half. Sometimes he punches the floor or couch or even kicks things over to keep himself from hitting someone.  I don’t want him to grow up violent.

There are a lot of reasons an Aspie might be angry: social frustration, sensory overload, academic boredom, or just the regular stuff that makes anyone angry.  I've known a few Aspies who have been quite negative, to the point of imagining every random misfortune is part of a conspiracy against either them personally or Aspies in general.  I kind of understand where they're coming from.  It's easy to get sucked into that mindset of persecution when you have experienced persecution just for existing, as many of us have.   Not thinking that way is a conscious decision I've made, based on seeing how it's worked out for others, and something I have to work on.

Violence is a different thing.  Sometimes violence isn't about anger at all.  I've thrown things, broken things, and hurt myself not out of anger but out of frustration, sensory overload, and strong emotions I had no other way to process.  The frustration of needing to do something but not having the motor skills to physically do it was a big trigger for me, that usually saw the pencil or tool (and on one occasion a tape recorder) sent flying across the room.  For some people (not me) it can also be about needing the sensory feedback that comes from the impact of hitting or throwing yourself against something.

Punching a soft object doesn't mean it'll escalate to being violent with people.  If he can channel that need to wallop something into a pillow or punching bag, and get it out of his system safely, there's no reason for it to go any further.  We Are Like Your Child did a post on this very issue recently.

6. HOW DO I GET HIM OUT OF MY BED??!  I'm going crazy here. He’s 8 and I have to stay up half the night telling him to get back in his bed. If I fall into a deep sleep I wake up and he’s right here. 

I have no idea, I'm sorry.  But a lot of kids on the spectrum do have sleep trouble, and I annoyed the hell out of my parents with my constant insomnia when I was a kid.  (I still have insomnia something fierce, but at least these days the most disruptive thing I do is get up and make a cup of tea in the middle of the night.)  You've probably tried all these already, but here's a thing I did recently on sleep hygiene, in case it's of some help.

Let's hear it for earplugs

On Saturday morning, I found myself at the supermarket.  This is something I try to avoid, since it's bound to be very crowded and full of shrieky children, but last week it happened and one thing (well, two things) made it bearable:


These are your basic earplugs, available from chemists and usually less than $2 a pair.  This packet's looking a bit scruffy because it's been floating around in the bottom of my handbag for a while.  When you unwrap them, they look like this:


They're two small cylinders of foam, roughly the size of the top joint of my little finger.  The foam's very soft and has lots of tiny air pockets, which means it shrinks and deforms when you squeeze it, and then once the pressure is removed it slowly returns to its original shape.  This is the key to its success: you squeeze them down in to little thin things, like this:

This one had already started expanding again by the time I took the photo
And then pop them in your ears.  As it expands, it moulds itself to your earhole.  The pressure's noticeable, but not uncomfortable, a bit putting the tip of your little finger gently in your ear.

They don't block out all sound, they just dull background noise from a roar to a murmur, and take the edge off very loud or sharp sounds.  You can still hear people talking directly to you while you're wearing them, and other essential sounds like warning sirens get through as well.

I could not go grocery shopping without these babies.  They're fantastic for dulling the shrieking children, squeaking wheels, humming lights and general aural chaos of shopping centres.  I also use them for loud concerts and events - I don't think I'd have survived Top Gear Live without them!

On the downside, they do make your own internal noises much louder.  While I was shopping my footsteps echoed through my body, and when I started tapping my teeth in time to the song stuck in my head (which is just a thing I do) that was really loud as well.  Talking with them in sounds very odd indeed, and eating with them is fairly well impossible unless you really like chomping, smacking noises.

They're really, really useful things to have, and I always keep a couple of pair in my handbag along with the rest of my emergency supplies: band aids, anti-tummy-bug pills, travel sickness pills, and hopefully paracetamol if I ever remember to restock those.

When I had long hair (or if I'm wearing a long wig) I can bring my hair forwards so it covers my ears and the earplugs aren't even visible.  But I usually don't bother: it hurts nobody that I wear them, and the reasons why are nobody's business but mine.  I don't care about looking normal.  I care about being comfortable and getting stuff done.

Monday, 7 October 2013

Monday Muster

Welcome to Monday, dear ones.  I'm still working in radioland for another couple of weeks, so my morning starts feel a bit like this:

157/365  (+1)
Photo by Martinak15 on Flickr
If you're job hunting, you might find Autisticook's series on job interviews interesting.  It goes through clothes and grooming, and making a decent first impression at job interviews.

You know the phrase "use your words"?  It's not very helpful if you don't HAVE words at that moment, and can invalidate all the very real non-verbal forms of communication. Neurodivergent K has dissected that phrase on Radical Neurodivergence Speaking:

"'Use your words' holds my needs hostage to performance of typicality and says I do not deserve to have my needs met if I cannot make that performance work. That is what you are saying when you tell me to use my words."

Executive dysfunction kinda sucks.  It can really get between what you want or need to do, and what you're actually able to get done.  Autistic group blog We Are Like Your Child has looked at this, focussing on how it can screw up a student's ability to manage things like homework:

"I had no trouble whatsoever grasping the academic content. It was not a challenge. Getting the work done was, because the attitude was still 'if you're so d*mn smart just do it... what are you stupid or something?'"

The same time I was writing about trying to get a decent night's sleep, there was some research coming out exploring the links between the severity of autistic symptoms and sleep (or the lack thereof).  You'll find the spiel here.   The research doesn't appear to have looked at sensory dysregulation, which I personally find unfortunate since that's the first and most obvious thing to be affected when I'm not sleeping well, but it's promising to see some research that could lead to something of use and help to autistic people.  The idea that we're not at our best when we're sleep-deprived and exhausted is hardly revolutionary, but having some concrete data to support that can only help it be taken seriously.

Speaking of sleeping, before the industrial revolution came along with its artificial lights and associated paraphernalia, people didn't sleep in one eight hour slab.  Rather, they'd sleep for three or four hours, wake up for a couple of hours to read, tend the fire, pray, meditate, get it on, or even go visiting, then crash again for another couple of hours shuteye.

Wednesday, 2 October 2013

Sleep hygiene resources

Sleep hygiene is a fancy term for the stuff you do to better your chances of getting a good night's sleep.

I have a long, long history with insomnia, and quite a few other Aspies have mentioned it as well.  Part of that probably is related to Aspergers itself - when you're in the rush of a new obsession it's really hard to switch off, and inertia (where you have trouble starting a task, or more relevant to this scenario stopping once you've started) can make the sheer mechanics of getting to bed at a reasonable hour difficult.

PICTORIAL REVIEWBut a lot of it's not about autism per se.  It's the human condition: we think, therefore we worry and replay situations over and over in our heads thinking 'what if?'  The entirely arbitrary eight hour working day doesn't always leave enough time to get all the non-work stuff done, and one of the first things to be sacrificed is sleep.  It's about having access to artificial light, which our bodies aren't adapted to cope with and which throws our sleeping patterns out of whack.  And perhaps it's also the stress of being un- or under-employed and the financial issues that brings, of being bullied or ostracised, of lacking a support network or knowing that you're going to die alone, all things many autistic people have to think about.  No wonder we can't sleep.

On the other hand, I need a lot of sleep to function at my best.  If I don't get enough, everything slides - my sensory disregulation gets worse, social stuff bewilders me even more than usual, and my motor skills and balance desert me entirely.  Maybe it's because it takes me so much more energy to cope with all the extra sensory input and consciously working out social stuff that comes to others instinctively, but I get exhausted much, much more quickly than a neurotypical person in the same situation.

If that sounds like you as well, here are some tips and resources that might help:

How do you know if you're tired, anyway?  Don't scoff - not being able to identify feelings is an autistic thing, and that applies to physical feelings as well as emotional ones.  (As per sample.)  These are signs that I've found mean I'm tired:
  • Headache or feeling of pressure behind the eyes or the bridge of the nose
  • Increased sensory sensitivity, especially sound (sound is a particular problem for me at the best of times)
  • Hand-eye co-ordination and motor skills worsen
  • Closing your eyes for a moment feels really good
  • In extreme cases, eyes start closing or half-closing of their own accord, and head may start nodding
  • In really extreme cases, you nod off for a moment

Listen to your body clock: Once you've worked out how 'tired' feesl, don't go to bed if you're genuinely not feeling it - you'll just reinforce the habit of lying awake for ages.  Similarly, don't put off going to bed if you're tired just because you think it's too early or you've got things to do.  Do it when you wake up - it'll go faster and you'll make fewer mistakes.

Keep regular sleeping patterns: This is a really, really hard one for me, because by nature I stay up late into the night and wake at about ten in the morning, but while I'm working I just can't do that.  But if you can stick to a regular routine - rather than waking up at 7:30 on weekdays and then lying in til 10 on weekends like a certain blogger - your body will have a better chance of being able to sleep well when it's supposed to.

Sort out your sleeping environment: Most of us can't just buy a new mattress or air conditioning on a whim, but there'll probably be something you can do to improve your nest.  Sleeping areas that aren't dark enough are a big problem for a lot of people - can you close the door, pull the curtains, hang a blanket or blackout curtains over the window if there's a lot of light coming in from outside?  Consider switching off things with digital displays or lights - or if it's bothersome to turn them off, a blanket or towel over them or some gaffer tape over the LED should block out the light.

Too hot?  Too cold?  One of my problems is that I really love the pressure from heavy blankets, but I also hate being hot - so at the moment I spend much of my night juggling the need for weight with the need to not overheat.  I really need to find some sort of non-warming weighted blanket.

When I was living in my own place, what made a difference for me was taking the legs off my bed.  I can't entirely explain it, but I think sleeping closer to the ground made me feel more secure.  I went through my 'wants to have a bunk bed and sleep on the top' phase, but really I'm much happier sleeping at floor level.

Get light at the right times: Getting enough sunlight through the day, but not getting too much artificial light close to bedtime, can help regulate your sleep cycle.  That can be as simple as changing to dimmer lightbulbs, and not watching TV or using devices with backlit screens before bed.  More on this here.

Don't exercise before bedtime: Exercise is good for you, but no closer than three hours to bedtime.  You'll be feeling all energised and have endorphins and what not going on, and that's not conducive to nodding off.

Don't go to bed on an empty stomach or a full bladder: they'll both either stop you getting to sleep in the first place, or wake you up at some ungodsly hour.

Booze doesn't work: It might relax you enough to help you drop off, but it'll screw up your sleep pattern so you don't feel properly refreshed when you wake up.  Plus hangovers.  Avoid cigarettes, and caffeine and other stimulants, for the same reasons.

For more information
The Better Health Channel
Sleep hygiene instructions
How to sleep better
Twelve simple steps to improve your sleep
Sleep Health
The National Sleep Foundation

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.