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.