Sunday, 31 December 2017

Parenting with Autism - Part One

It was becoming a father that set the ball rolling for my eventual diagnosis with Aspergers.  This transpired through a number of different channels.  One, which I will explore in Part Two, was the way that fatherhood effectively obliterated my safe and steady routine that I'd developed over my adult life, exposing me to painful levels of spontaneity and change.  Two, I had a new person in my life, and for the very first time ever I had met somebody that I felt utterly relaxed round.

I may sound extreme but it's very true.  Up until the birth of my daughter I don't remember a single person who I have felt entirely at ease with, entirely chilled out and happy.  Of course, for the first 32 years of my life I had no idea this as the case, as I had nothing to compare it too - having never experienced peace with a second person I didn't even know it existed as a concept; I assumed (I assume) that this was how everyone felt; that everyone was on edge even with their closest friends, that life was inherently stressful when other folk were around.  How wrong I was.

Spending time with my daughter, even when she was very small indeed, gave me an insight into what life was like for everyone else - I just didn't know it at that early stage.  All I knew was that for some reason I could be myself around her, and this never changed.  As she got older and more communicative, I could still be myself with her, and she didn't drain my energy like other people did.  Even now, as she approaches three and can be very dismissive of people, places and things, I still feel totally relaxed around her.  It's a combination of not having to mask or camouflage for her, but also not feeling the rapid-battery-drain of social interaction when I'm around her.  This was so novel that it made me take stock and reassess - clearly there was something different going on here.

I did my research and lo and behold, an affinity with one's own child that feels different to every other social relationship is a typical sign of autism.  And of course I'm aware that all people feel a special bond with their child - I'm talking about something different - a sense of acceptance and calm that isn't the same as deep, unconditional love (though I have that too).  This discovery was the final push I needed to getting diagnosed, and now I am very interested in identifying exactly why it is that an autistic person's offspring is so unique and untaxing.

A short one tonight - it's New Year's Eve - but I'll write Part Two within a few days.

Saturday, 23 December 2017

Christmas and Autism - some advice

First of all, Christmas is a potential nightmare for autistic folk. The lights, noise, Slade, too many people squeezed into a front room, drunk people - it's a recipe for utter misery for some autistic people, children and adults.  
They will need, first and foremost, and escape route from any busy locations, especially places they've never been before. But it's not enough to have a way out ready - people have to not make a big thing about them disappearing for a while!  Nothing is worse than the rest of the group making a song and dance of the fact you need some air. Ideally you should be able to slip out unnoticed or at least unrewarded, so you can then slip back again.  It is also very helpful if people allow autistic friends and relatives to skip some segments of festivities. Offer it, especially to children who may be too scared to ask - 'if you need a break, you can pop upstairs and chill for a bit if you like'. Leave it up to them. 
As far as possible keep routines normal on Christmas day, or if you have established Christmas routines, don't deviate from them as an autistic person will rely on them to help them handle everything else the day brings.
Buying presents *may* have been extremely challenging for an autistic person as it's hard for us to imagine whether our idea of a cool pressie is your idea of a cool pressie! Just be grateful! 7/?
Christmas can bring a halt to an autistic child's engagement with their interests as other things will be expected of them. Trouble is, their presents may well be part of their obsession, like a new video game. Likelihood is that them finally having the thing they have wanted for months, coupled with not being able to play with it, will lead to meltdown (and bloody rightly so). So be mindful of this and structure the day so they have an opportunity to indulge in their favourite hobbies. But yes, it is Christmas so you may not be happy with your son, daughter, spouse wandering off to play Counterstrike all day, so set clear time limits and expectations. Surprise gifts may be a bad idea. Surprises generally are not always welcome for autistic people, so bear this in mind. just coping and trying to show gratitude for a clearly unwanted present is really hard work. 
Don't forget that autism continues into adulthood and never disappears. You may have a loved one who manages to camouflage their autism, but remember that this is *exhausting* for them, so give them a break from time to time and let them be themselves.  A few small tips: have single coloured, non-flashing/winking Xmas lights; too many decorations could be overwhelming so tone it down a bit (this may help anyone, to be fair); DON'T ARGUE, even if it's traditional! 
Listen to them. It may not interest you to hear about the minutiae of how the Imperial Guard field the best tanks, or how many species of elm there are, but this is important stuff to us and we just want to be able to share it. 
Autistic people will often have small coping strategies that are physical in nature, like twirling a pen, drumming with their hands, rubbing their feet together. The older we are the more subtle it will be. Do NOT comment on it as it'll make us feel silly. These movements are called 'stims' and they can keep us nicely grounded and calm. It's not that weird really - most people have go to tics and habits when nervous after all. Children may have quite obvious or 'odd' stims but give them a break!  Stims will be particularly useful over Christmas as it's so damnably stressful, so expect them and accept them. Same with comfort blankets and toys/trinkets. I usually have a lego minifigure in my pocket, for example. 
It is possible that the extra people, lights, food, noises, expectations and lack of ability to use coping strategies will lead to burnout, or a meltdown. This is where our stalwart efforts to stay cool are overcome by stimuli, like Orcs at Helms Deep.  Everyone experiences this differently but a meltdown can be, for the person living it: terrifying, panicking, totally exhausting, embarrassing, even dangerous (think hurting yourself). It's bloody horrible.  For other people around a meltdown, it can be scary, upsetting and a real downer on the mood generally. But remember, it is WORSE for the person having the meltdown, so be kind and minimise their sense of embarrassment.