Tuesday 15 May 2012

What is this Aspergers thing?

AssBurgers, you say? Assperjers? Hmmm... But what is it exactly? It's something to do with Autism, right? Is it to do with bad parenting? Or perhaps over-parenting? He'll grow out of it, right? He just seems so "normal". Yes, my child does that too - I know exactly what you mean - it's just a boy thing isn't it? But he's so lovely. Soft mothering? Call it what you like, it's just downright rudeness as far as I can see - horrible! I read that Julian Assange has that. But he makes great eye contact. They're all so intelligent, aren't they. Could it be because he doesn't eat enough fruit and veg? Fish oils? Well, if he didn't spend so much time on his computer, he'd be fine. He's fine - I just can't see what you're on about! I read that you can cure it. He must love Lego. Yes, well, poor chap doesn't get much attention - his brother is autistic. How long has he had that for? No it looks like ADHD to me.. or OCD or ODD or BS or WTF.....

Sigh.
Tut.
Picks off nailvarnish for ten minutes.

Let's Wiki it....


Asperger syndrome (AS), also known as Asperger's syndrome or Asperger disorder, is an autism spectrum disorder (ASD) that is characterized by significant difficulties in social interaction, alongside restricted and repetitive patterns of behavior and interests. It differs from other autism spectrum disorders by its relative preservation of linguistic and cognitive development. Although not required for diagnosis, physical clumsiness and atypical use of language are frequently reported.[1][2]

Meh.
Double Sigh.

I find it really hard to explain what G's Aspergers Syndrome is without either stumbling across a minefield of negative stereotypes, or seeing a slight glazing of disbelief in people's eyes. It's fairly easy to explain the science bit of AS a la Wikipedia above, but it really is tricky to put into a nutshell what that means in every day, real life terms. This is, after all, the ultimate invisible disability. It's not quite as socially acceptable (ha! that needs more explanation but let's run with that for now..) as Autism these days and nowhere near as allowance-making as some more obvious forms of disability.   When Joe Public is faced with someone who looks "normal" but is acting "differently", particularly if that "differently" is a dose of misplaced honesty or a social blunder that seems like rudeness, Joe Public takes it very personally and acts accordingly.

It took years to get a formal diagnosis because looking separately at G's traits under a microscope is no good. For G it's more holistic than that. There's no single behaviour in G that would tell you outright that he has AS. His individual behaviours, traits and responses to life aren't far off those of "neurotypical" kids. Not average but not wandering too far away from the top end of "normal". For every slightly different trait, a (helpful) mother has told me reassuringly that "oh my ---- does that too".Yes, BUT does their ---- also do this, this, this, this, this and this as well...oh and does ---- bite his own arm until it bleeds in assembly and eat plastic bottle tops? Above all, do these behaviours cause ---- an impairment? It's only when you look at the whole picture and spend some time with G in all manner of every day situations - particularly those that aren't of his choosing - that you notice that all is not totally "neurotypical". This would be fine and dandy if my boy was happy. Actually a lot of the time when he isn't engaged in his Special Interest or at least talking about it, he isn't overly comfortable.

So let me tell you about G: he's funny - off-the-wall hilarious; he gets on brilliantly with adults; he's affectionate, energetic, and has an astounding knowledge of all things Nerd and Geek. Adrenaline - seeking. Sweet-toothed and he has the amazing super-power of being able to tell who has been in the house, hours after the event, with his sense of smell! He's honest to a fault - he tries to lie now and again but the truth ALWAYS comes bursting out of him eventually. And he seriously doesn't get the concept of "white lies"! If I'm getting dressed up to go out, I can rely on him to pass or fail one of my outfits in one short brutal sentence. And he's always right!

And some of the trickier bits:

Impulsivity is a constant battle which he wins most of the time at school due to a terror of being told off by teachers. But he comes home utterly exhausted by his efforts. At home it's a different story altogether and he does and has always found it almost impossible to do whatever it is that he's being told NOT to do. This is a classic "yes, all kids do that" scenario. Everybody knows what it feels like to find it hard to resist impulses but, for G and his fellow Aspies, it seems to be almost physically painful to ignore these urges. If you tell G not to do something, he's pretty much guaranteed to do it regardless of the consequence. We now have "Swear Time with Mum" every once in a while. This entails me and G, on our own in the car and I tell him we can have 5 minutes of "swear time" to get it all off his chest (no PC mothering prizes for me then!). Invariably, G's swear repertoire has dried up after 2 minutes and that is enough to scratch that particular itch for the next few weeks! 

From what I've seen in both my boys, control is a theme that straddles the whole autistic spectrum. G's need for control of his world is as strong as J's. It manifests in a slightly different way but is the same animal at the end of the day. One of my favourite stories about the distinction between Aspergers and Autism comes from a mum who took her kids to an Autism Screening at the cinema. She said that all the kids with autism were flapping and stimming; all the kids with Aspergers were screaming at them to shut up and sit down and all the Neurotypical kids were watching the proceedings in amazement! The anxiety that G experiences in every day life is pretty staggering when you look at it as a whole. I recently saw the amazing Dean Beadle talking about his life with Aspergers. He describes the "egg-whisk" effect of stress. This is when worries get so whipped up out of proportion that meltdown is pretty much the only way out. I also like the Tank of Tolerance metaphor when little tiny stresses all add up and add up until the stress overflows in a volcanic manner. G is no stranger to a full, flailing, screaming meltdown when things get too much. It really is a total loss of control. The only real restorative for G when it's all gone Pete Tong is complete solitude.

And then there's the Special Interest. This is no little hobby that can be picked up and put down at will. This is the air that someone like G breathes. This is an obsession. For G this is the history of video games. Name pretty much any game ever made and G can tell you who the developer was and the original year of release. If he was left to his own devices, G would choose to be on his PC for about 18 hours of the day: playing games, researching, watching other people play games. We have timetables and boundaries and very strong rules (no games over a 12 rating) There's so much more to say on this subject - another time, I think. But let me just say that if a child obsessively reads books or plays tennis with the same level of intensity, people will judge those parents very very differently to parents of someone who is gaming-obsessed....!

Another big part of G's make up is his difficulty with Social Interaction. I mentioned that he gets on great with adults. With his own peers it's a different story altogether. His friendships are sudden and intense - best friends forever. G likes to be the one in control in a friendship. It's his way or the highway. Sadly, not many friendships last for long. Kids get bored with the level of G's gaming-obsession and want to play football. G's biggest hatred is football. Sigh. Then there's the mind-blindness; the misreading of situations and body language; the devastation when he thinks that someone else thinks that he's wrong/rubbish; the fear of being attacked by strangers and on and on.

This little list only really skims the surface. There are billions of other bits and pieces - some brilliant strengths and some gratingly unfair difficulties. It's quite complicated living with G at times. It's pretty much black or white with him - there are no grey areas. When he's happy he's delighted but when he's sad he's devastated. He can flick the switch between the two emotions in an eyeblink and then carry on as if the storm never happened.

So this Aspergers of G's.....I hope that has given you even a tiny bit more understanding. Understanding is good. I genuinely wouldn't change him for the world. I love his honesty. I admire (and envy!) his ability to retain information. I adore his affectionate nature. And nobody on this planet has made me get the proper giggles as many times as G has. I blooming love that kid.