Friday 31 July 2009

Trying

I'm slowly going through my "Relationships for social retards" book (I was hoping there was a chapter called "Chat-up lines that really work" but there isn't) and it's one of those things that kinda tells you what you already knew but never thought about. It organises and arranges things in a way that makes you go "I never thought about it that way." One thing it touched on was the importance of small talk to NTs, which is something we all know of but don't care for ourselves. The book explained that NTs themselves are probably not enamoured with the small talk, but that the small talk is a scatter-gun type approach until someone hits on something that both people can engage in and it turns into a "real" conversation. I actually found quite a good example of it while watching Big Brother on television. Two bores were exchanging tedium when all of a sudden one mentioned something seemingly trivial that sparked the other's interest and they went on to talk about their new-found common interest.

My problem with small-talk (well, one of them) is that I am so out of practice that nothing comes naturally, and when put on the spot my mind goes blank but I do often think of things I should have said later on. Today, for example, I went for a drink with some colleagues after work and one of them asked me if I had any plans for the weekend. Now I never really do, I just do whatever, I like being on my own and "having plans" usually involves other people. Obviously I didn't say any of that, just that I didn't have plans and I elaborated a little saying that now my regular venues have closed down I'm feeling a bit lost for things to do at the weekend. Anyway, that was the end of that conversation and it was only a fair while after that it struck me that the proper thing to do after I said my plans was to ask her what her plans were. Not only would that have elongated the conversation and maybe brought something up we could use to continue talking about, it would also have shown a reciprocal interest. As it was it ended up quite a one-sided and selfish exchange whereas I could have shown her that I was also interested in what she had to say and what she was doing.

Of course none of this is of any use hours later, is it? I'm going to have to get into the habit of directing people's questions back to them when I'm finished talking. To be honest I find it awkward and forced having to return the question as to me it seems that I'm only asking them because they asked me and not because it's a genuine interest. Maybe that's the biggest thing I have to get over? Although it seems forced to me, to NTs it's perfectly normal and natural behaviour.

First they came for the communists...

Autism seems like a hot potato in the news at the moment...or maybe it isn't and I'm just noticing it more because I'm looking for it more. Mainly we have the case of Gary McKinnon...a "computer geek" with Asperger's Syndrome (AS) who got caught hacking the computers of the American government and, upon realising the crime carries 70 years in jail, is grasping at any straw that is floating by; grabbing at the doorframe in a last desperate attempt to extend his time by any moments he can muster. If I'm honest I'd do the same, and so would you. If I was facing 70 years in an American jail I'd put underpants on my head and pencils up my nose if I thought it would save me.

Now don't get me wrong, the intended punishment far outstrips the crime and it does seem like the Americans want to make an example. Even ignoring the AS angle, I'd still support any effort to see him tried and punished in the UK. As much as I think the Americans are looking to make an example, I also think Team McKinnon is deliberately misrepresenting the AS side of this story to make him more a victim than he actually is as an attempt to get an eleventh hour pardon.

Trans-Atlantic chess aside, the main issue here is to what extent should people with AS be excused from their actions? Or shielded from the consequences? To what extent does having AS mitigate the seriousness of your behaviour? Ok…Gary might have had an obsession…a compulsion…to investigate UFO activity - but he still knows right from wrong. He's autistic, not psychotic.

Whatever way you look at it and whatever side of the fence you're on it's an interesting case. This one is slightly more worrying though;

Men guilty of parents murder plot

"They said Monks [who sought to have his parents killed] suffered from an autism spectrum disorder and had difficulty in separating fantasy from reality."

"Professor Digby Tantam, a consultant psychiatrist and autism expert, said he believed the defendant had an autistic spectrum disorder which could impair his understanding on the outcome of actions and the feelings of others."

I'll say it again…autistic, not psychotic.

As these stories come out and people look to their autism to excuse their behaviour is the tide of human opinion going to ebb further out from us? Are we going to end up being seen in the same light as un-treated schizophrenics, turfed out to kill in the community in the name of care in the community? Are we slowly being turned into the new bogeymen? Will mothers hurry their children inside and slam the window shutters when they see us coming? How long before we've overtaken the paedophiles? How long until Jonathan King is blogging about how vile we are?

If people keep misrepresenting autism as a defence against criminal behaviour then that's a two-way street; the public will start to believe it. So is the autistic community digging its own mass grave? By siding with the likes of Gary McKinnon instead of saying "I have sympathy for Gary, but autism is no excuse, if you break the law you should be punished" we're all jumping in the handcart and it's slowly rolling down the hill, but fast gathering momentum.

Thursday 23 July 2009

Things I did this week...

...that I had no idea I'd do at the start of the week.

1) Bought a fruit bowl
2) Bought a self-help book for people with Autism who are looking for help with relationships
3) Put my CV on-line and started applying for new jobs.

It's weird but in the space of a week my life seems to have changed quite a lot. I can hardly get my head around it...my fruit won't just be lying on the kitchen worktop anymore.

Wow.

Wednesday 22 July 2009

In the kingdom of the blind the one-eyed man is king

One of the more commonly known issues with Asperger's Syndrome (AS) is empathy. When I think of empathy I always think about putting yourself in the shoes of someone else when they are undergoing a physical process...like being hurt when falling down, or feeling sad after a break-up. It seems that empathy tends to encompass more than that though, such as how another person sees the world in general. I found this out after reading some research material about autism (not specifically AS) and what tests have been conducted to show the differences between autistic children and non-autistic (NT) children.

One of the tests they do is seeing if a child knows how another child perceives the world. The classic example is that Child A has a ball in a basket and leaves the room, and Child B takes the ball from the basket and puts it in a box. When Child A comes back to the room do they look for the ball in the basket or the box? A child who knows how Child A perceives the world will say "basket", but a child who only knows how they themselves perceive the world would say "box".

What interested me most was the importance of the age of the children involved when it comes to these tests. The study is quite explicit in that it isn't saying that NT children will say "basket" and autistic children will say "box". What the study shows is that NT children of a specific age (4 in this case) will say "basket", where an autistic child of 4 would say "box". However by the time the autistic child reaches 6 they would also be saying "basket". It brought home how important it is to diagnose autism in children and how hard it must be to do in adults. It also explains the rather blasé attitude I found in professionals when trying to get diagnosed myself. After all...if these key tests can't be done at the right age then in fairness how can they ever be sure to truly diagnose autism? All they can do is give it their best shot.

It also comforted me in a way as I've read the odd thing about how children with AS act that sometimes don't resonate with me. However maybe that is because while I don't remember exhibiting a certain deficiency, the real issue is that I'm remembering how I was at an older age. So it's not that I was exhibiting "normal" behaviour so maybe I don't have AS, but that that "normal" behaviour was only happening years after it should have been happening. So while I remember thinking "basket", I was thinking it later than I should have been. Further that it is this delay in the development process that is the vital key to knowing if a child is autistic. I now fully appreciate why childhood diagnosis is so important, or failing that information from the parent if it is an adult that is seeking diagnosis. I can't be expected to know at what age certain behaviours came and went, but my parents should.

This possible delay in development ties in with my memories of my parents always showing concern about how immature I was and how I tended to prefer the company of children younger than me. Maybe my development was out of phase by a year or two? If autistic children do eventually learn what their NT counterparts learned a few years previous I suppose it's not unusual that we develop many coping strategies and grow "more normal" as we get older.

The paper did occasionally mention AS specifically and said that sometimes children with AS were able to pass these "theory of mind" tests even though children further up the austic spectrum often could not.

This concept of knowing how others see the world made me think about another vivid childhood memory I have; when watching television I'd often wonder if other people were seeing the show in the same way. When the news came on and the newsreader had a moustache I'd ask someone "does that person have a moustache?" When I saw a red car I'd ask "is that car red?" It must have seemed quite strange to others, but I was genuinely wondering if everyone saw everything the same way. Was my desire to understand the world causing me to confront my lack of knowledge on how others saw the world?

Coming full circle - I initially said that I considered empathy as knowing how someone felt after a physical event...this paper also touched on the fact then when asked what functions a brain did, autistic children tend to concentrate on the physical (tells our muscles to move, heart to beat, let's us see) while completely ignoring the emotional functions, but NT children consider both.

Sunday 19 July 2009

Irony

The not-drinking-on-Sunday is going great. Too bad I won a bottle of wine in a raffle tonight.

Tuesday 14 July 2009

Catching up

Just a few things that are going on with me really.

I'm on a bit of a self-improvement kick at the moment with my usual mixed success. I'm trying to turn my Asperger's Syndrome (AS) to my advantage by developing "positive" habits and routines to combat some issues I have. One habit I've already managed to break is drinking mid-week, something I haven't done for quite a while. My next target is to stop drinking on a Sunday as it affects me quite badly on the following Monday at work. While still in the moment I set up a reminder on my phone for next Sunday at 7pm that urges me not to drink and explaining the reasons why. We'll see if it works. Alas I didn't break the habit last Sunday so I didn't feel up to going to the gym this week. Which brings me to my next point…

I did something rather spontaneous tonight and decided to go to the cinema. I haven't been in a long time really and I'm not quite sure where the idea came from…but what the hell? I went to see "Bruno" because my humour is usually in the gutter anyway and it was laugh-out-loud funny in a fair few places. Was also good to see an Autism joke in the movies (good news…Autism is "in" this season)…not something you see much of, though Sasha Baron Cohen's cousin is an autism researcher so I'm sure there is a connection there. Alas it did also remind me why I hate being around other people.

The other routine I'm trying to get into is a cleaning one. I had a fairly large clean-up two weeks ago and I'm striving to do less but more often to keep it up and I think I'm doing quite well. When I see something that needs done I try and do it rather than postpone it. I'm cleaning the oven hob and bathroom sink etc more frequently so that it just needs a quick once-over and that's it done. I'm trying to keep clutter down and mess cleaned away and the recycling done rather than letting it pile up, and also get the dishes done rather than those also piling up. So far it's going ok I think. I've been here before though so I won't be too surprised if I gradually slip back to my old ways.

To close off this Christmas letter, I had a girl I was "involved" with when I was younger contact me after tracking me down on the internet. It's been about 16 years I think since I last saw or spoke to her, but it was good to hear from her (stalking tendencies forgiven). To be honest all my life I've regularly thought back to my relationship with her, as brief as it was. It never really progressed the way I wanted it to even though I really liked her and I could never understand why I acted as I did. Now, looking back knowing I have AS it all makes perfect sense and I now understand why I did the things I did. So to have her contact me out of the blue was a mix of emotions.

We've since exchanged a few emails and I confess that I've fallen for her again. It's like she hasn't changed one bit and those 16 years never existed. It's like I last saw her yesterday. It's like she is some kind of key to my life, something I need to tie up the past. I'm torn, though. Up front I'll say that nothing is going to happen…she is 700 miles from me. But there are so many things I want to tell her. I want to tell her that I can now explain why things happened the way they did, I want to spell things out to her. But what's the point? I could detail so many things that are fresh in my mind but she probably doesn't even remember them. Could I face the fact that the things that have dogged me all my life are so insignificant to her that she can't even remember them?

I dunno…I'll sit on it and think about it. Why are the people you want never available? I suppose I should really just leave things as they are. Knowledge isn't always good; sometimes ships just need to pass in the night.

Friday 10 July 2009

One-way lives

I'd love to live in one of those tall, wide, sprawling tower blocks. The ones that dominate a city's skyline and can be seen no matter where. As you approach the building it unveils itself as a mass of windows...like stars in the sky you can take in the aura but lack any single thing to focus in on. Rows and rows of windows, every one of them hiding a life.

I'd like to be one of those lives…on the inside looking out. Sitting in the window watching the people outside and taking that chance…the chance that you won't be seen. Banking on that probability that of all the windows yours will go unnoticed, allowing your voyeurism to remain a dirty little secret. Maybe even turn off the lights, use some binoculars and scan the lives in the building across from yours, dotted like stars in the sky. Resting on one dark window and wondering if there is a life behind that window. With binoculars. Looking at you.

Wednesday 8 July 2009

Hard knocks or hard candy?

I lived most of my life undiagnosed, including all the way through my early years right up until adulthood. I went through the educational system from age 5 through to age 22 undiagnosed. I didn't have a great childhood, or a great adolescence. Adulthood aint that great so far either. Things are definitely better since my diagnosis though, now that my mind is clear of confusion and fear…flushed out by understanding and replaced with knowledge and…well, fear. Just of a different kind. What if I knew about my Asperger's Syndrome (AS) sooner? From a young child?

Obviously growing up undiagnosed has played a large part in who I am now, and maybe saddled me with some baggage too. But has it helped sculpt my abilities to "look normal"? Casual acquaintances usually see me as fairly normal, maybe at worst a little quiet or shy. People who know me better might start to see other facets of me. All in all, though, I'm outwardly fairly normal. However getting here has been a long process paved with failure, embarrassment, humiliation and self-loathing. But I'm here. I've walked through Hell and now I am where I am…robust and full of self-knowledge.

Awareness of AS is gaining momentum and more and more people are being diagnosed younger and younger. What does life have in store for them? Even "normal" children are wrapped up in cotton wool these days; prevented from sports days in case they "lose", having exams results re-worded in case they "fail", not being allowed to play in the street in case they "come to harm". And it's doing them no good at all. We're raising a nation of fat brats who watch TV all day and think they have a right to have everything they want without a thought for others. Their whole life revolves around them and the fulfilment of their every need. In a similar fashion are we also harming children with AS by telling them of their diagnosis?

I read articles from parents who have children diagnosed with AS and want the education system to bend for them. They want people to make allowances for them. They sometimes seem to want to remove responsibility from the child for their own actions. They look for medicines and pills to alter their behaviour. As human beings we learn by failing. If you remove all failure from a child's life how will they ever learn anything? No-one ever made allowances for me. No system bent for me. I fell, I got up, I dusted myself off and I learned from it. Battle by battle, scrape by scrape, I got stronger and stronger. If someone was there to make excuses for me or to stop me all the times my mouth got me in trouble, or my actions offend someone, or my thoughtlessness drove someone away then I'd be even less well equipped to deal with life than I am now. I have a whole bag of failure to dip into to remind me how not to behave, what not to say and what not to do. I've learned to enjoy my own company and be happy on my own. I've learned how to cope with other people's disappointment.

If a child with AS is brought up wrapped in cotton wool will they need that cotton wool their whole life? Will they become adults thinking it is the norm for other people to make allowances for them? Will they be able to cope when they come across a system that won't bend? People that won't make allowances?

I appreciate that my own AS is not as debilitating as others have, and that some people do have a genuine need for special care. I'm really talking about the in-betweeners, the high functioners. By teaching children that their actions can sometimes be excused, or that it is other people at fault because they're not accommodating you, are we doing them a disservice in the long run? Should we be teaching children with AS that they're "special" or should we be teaching them that life is hard…and for you harder still?

Maybe I just feel resentful that I did it the hard way so think other people should have to also? Maybe tough love really is the way? I don't have the answers, I'm just glad I'm not in the position of having to make a decision about what you tell a young child with AS.