success.

Today was spent building and admiring hobby related items. While most of my thought processes during this where: oohh that'd look good/I think I might be hungry?/come on glue hurry up and stick I need to pee, some of it (mostly near the end where I was satisfied with my work) turned to the measurement of success. How do we measure success, and how should I measure my success? It's easy enough with hobby: this morning I had parts, now I have an army that'll be wiped out with one well placed enemy sneeze (I'm not kidding either, nearly my entire army has no armour saves). It's measurable success, I now have a tool that will allow me to participate in the meeting of others and their laughter and scorn.

Success is measured by different people in different ways. there is an info graphic online of the rise and fall of success where not peeing yourself is considered success at both ages 3 and 60. The Online Dictionary defines success as the achievement of something desired, attempted or planned. So today was a success because I now have something to show off and strike fear into peoples hearts, something I desired, attempted and planned.

What does success mean to an Aspy? I cannot be an authority on the subject by any stretch and I'm sure this topic will be expanded or revisited in future posts. Also I'm very sure that many Aspys will not think of their success, as many are people in their middle years who have been newly or recently diagnosed and while they have answers to questions left unasked, they also have blended well enough to hold a job, have families, and succeed by any ones measurement.

While I don't go for the sickeningly sweet praise of 'how good someone was', or that 'one should be proud of how well they did' as if Aspies are completely incapable and one was the good puppy who made it out of the house before widdling, I do wonder if maybe we should pat ourselves on the back from time to time for what we accomplish or achieve. If we should look at how hard we have worked for our goals?

I have a Honours Science degree that I gained with no support for my Dyslexia, and with no knowledge of my Aspergers at all. I am now trying to patch together a masters from module courses that fit around my work and social life. That is success that society recognises in anyone, and promotes as a 'good' way to be a productive member of society. Many people say I have done well to even get a career and pick myself up from disaster in the past (I attribute this to me being too bone headed to do anything else), even though currently I am not riding the heights my career could take me to. I've been offered an 'in' into those more glamorous ends due to my encyclopedic knowledge of certain topics, but so far I have hesitated to accept. I don't feel ready.

Maybe success for Aspies should be measured with another yard stick. Could success perhaps be something more intangible like navigating a social situation, or even having contact with another human. I have friends and have had girlfriends, something my NT friends seem to fail at. I must admit I cheat: I count matchsticks into a match box, then tell a girl I'm an Aspy with the superpower to count items really fast, ask her to throw the matchsticks on a table and then I shout the number I just 'counted' and let her pick them up. Never fails.

Anyway my cheating aside, perhaps success is just being able to spend an hour with a crowd, an hour without talking obsessively about our favourite topic (did I mention my army?).  Even just having a conversation without making a faus pax. A day where we weren't overwhelmed by sensations. that last one is a tough one, as we cannot always avoid what will trigger a sense, like I cannot avoid a strong smell.

I do believe we should reach for the heavens, even if our rocket is a firework and our safety briefing involved the words: crash landing. Aspys shouldn't listen to 'advice' given by experts about how well we will do, what we should expect from life or our ability to achieve. We should have our own yards stick, that isn't set by some arbitary society rule. Money and fame aren't success, but getting to talk to a friend for five minutes might be.

Bad days.

We all have them.
I have them, and the girls in work know it's a bad one because I'm quiet, which is a huge change from my screaming and smashing match's.
But I like to think myself mostly adjusted, the people I work with never guess I have Aspergers, never guess I have dyslexia, and when I get asked about my walk I make up an excuse and change the subject. Who needs to know I may or my not have mild CP? I can hold a conversation, and OK my eye contact skills generally focus either on the floor or the middle of their nose (a trick my grandmother taught me when she noted I couldn't maintain eye contact. Clues that we missed eh?) but no one seems to notice that too much.
Then I have bad days, and the girls suddenly notice I'm being surly and my tone has lost all inflection. I'm suddenly the 'bad guy' barking orders and being 'concise' in my dealings with them. I lose all ability to be a regular human with them, and they suddenly are left wondering why the joker and moral officer has burst his own balloon.
The worst part is I don't notice until one mentions it to me, and then I'm stumped. I don't realise I'm doing it, and the girls are at a loss as to why I am acting the way I am. Yes I was open and honest with management, and I don't hide anything from my colleagues, but many of them wouldn't know which way of Aspergers was up. One of them when I explained it to her responded with: 'wow I'd use that all the time to get away with stuff.' That was both unhelpful and not constructive to our dialogue, but I'm sure it was her way of laughing off our 'misunderstanding' (I'm almost sure it was).
While I don't want to focus too much on this idea that it is my 'shield' here, and I have touched on this before, I believe that if I do have the mythical shield, it is my duty to others to meet them half way and work hard at being, at least socially, 'normal'. Yes I am different, yes i like it that way mostly, but that doesn't give me the right to be a jerk and then hide behind my 'I have a nuerobiological disorder' shield when people tell me I am out of line. In fact I shy away from using it as a defence because while true it's also an atom bomb of a trump card, I look great and you look like a bully. Therefore I don't use it, just like we try not to A-bomb each other back to the stone age (or sausage, I forget which came first).
Back to my bad days, I usually have a colleague around I can go whinge to, who will put my life back into perspective and give me something to think about while I cool off. Also a mug of tea, and a few puffs of a pipe don't hurt.
Bad days are few and far between, and my foul humour usually lasts only long enough for a problem to be solved or light to appear at the end of the tunnel. I apologise to those who feel wronged, try to sort my nasty comments from their nasty comments, and make sense of the conversations had, including what subtext I missed, what i might have said to diffuse the situation instead of standing around like a dummy with no reasonable answer to give ('I'm an Aspy, deal with it' and putting on sunglasses doesn't count apparently), or walking away to get out of conflict I don't know how to win.
Yet more I need to work out with my Aspy nurses........
 

Media exposure.

A fellow Aspy has had an article published in mainstream Irish media, It is very interesting and worth a read.

This is positive media exposure, that shows Aspys both as the positive people we are and the regular people we are. His mother (Helen) seems to be amazingly supportive, just as my parents are. I believe this is key to some of the best results in Aspy kids, as every one of us (hey, we are all someones kids) that I know have parents who work tirelessly to promote their children and push them to be everything they can be.

Fionn has his own blog, it is more advanced then mine so have a read and see how our world is shaped. I'm still trying to write a post about calling myself names (and I got given out to so much in work when I mentioned it, as predicted).

Anyway, it's late and I have hobby to build/admire/procrastinate about.

follow up thoughts

Ok, so that last post was short on content and long on spelling errors.  So to make up for that, I'm going to try to disassemble my thoughts and feelings, such as they are, on my 'probable' diagnosis. This isn't any easy thing for a couple of reasons.

Firstly, I don't see how this affects me overly much. Ok so my walk is odd, and I wear through shoes like their going out of fashion, but I have yet to fall and numerous girlfriends have either told me they see nothing wrong, or that they never notice it. I do have a walking stick but I rarely use it (I'll get to when I do later). I have walked like this for years, with people commenting on it (mainly in work, it's not like people come up to me in the street). I don't notice my walk, and therefore I don't know how to react to a diagnosis that adds nothing beyond another label. I know this sounds cynical as my Aspy diagnosis has caused huge changes in the last two years.

Secondly, it may not be  about the CP at all. It is an underlying cause, the question is what damage is it doing to my hips or legs (or shoes). I had a hip xray over a week ago, so even if the problem isn't directly linked to my hips (an alternate hypothesis), I'll know if years of stumbling through life has done joint damage. So the changes I could see might include things like orthotics and leg supports (or surgery!).

You may ask why I'm taking about about walking linked to CP, but a form of CP is called Ataxic, and I walk like a manky dog. Link 

Enjoy

'probably'

Following my examination just before I started this blog, I got my copy of the medical report for the GP.

The most important word currently in that diagnosis is the word 'probably'.

A CP diagnosis is based on a detailed history and a physical exam. A MRI scan can be used to identify the source of the CP but not to confirm diagnosis.

So the statement in full is: probably mild CP.

I focused on the probably, it's a qualitative word, leaving doubt even through its certainty. A friend focused on the mild. I'm a little torn.

I'm trying to think it through right now, but I will blog more about it soon. I feel apathetic about it right now, when people seem to expect me to be overloaded.

procrastilaxing

Yes that is a real word. Sadly.

I don't know how, but my diagnosis was riddled with things that are true, without me having to say so much as a word. One of the things picked up on is my inability to motivate myself outside of a structured environment. My 'starting mechanism' is faulty. Interestingly, this is something I have yet to tackle with my Aspy nurse, who has been tied in knots trying to improve my work life.

Getting moving in doing things that interest me takes a lot of effort, and then I'm suddenly surprised by how easy and enjoyable that thing I was putting off is. It's like there's a block, a barrier that makes things loom high above me and I'm afraid to touch it in case it collapses on me. I am like electricity, i take the easiest route and I occasionally shock.

This ties into a lot of my life, study, hobby, going to the shops to buy stuff. I will revisit this topic in future as i develop strategies and tactics and see how I improve, but for now I thought I would just mention it.

socializing

OK so that's a broad topic, but I want to look at a tool and aspect that I've only recently begun to appreciate and utilize again.

I collect, and will soon again, play with toy soldiers. On and off I've been doing it for 15 years, and I've made some solid friends through it during the years.It has been characterized as a waste of money and time by some, but I am about to swing it to my benefit.

I have been involved with the 'gaming' scene for at least ten years in my home country, I even wrote a blog about it (don't look, I've locked it away). Gaming for those of us who don't know is anything like Dungeons and dragons, role play, computer gaming, table top war gaming etc etc etc. I've stood in muddy fields facing shield walls, I've sat around a table while a friend delivers fiery exposition and I've stared down opponents across a miniature battlefield. I've never won anything.

I've charged headlong back to the hobby for one reason and one reason only: having written this blog for less then two months I've realised that all of my social interaction almost exclusively comes from work. This needs to change, mainly because work isn't a social situation. I know from years of gaming that the hobby is littered with Aspies and others of our ilk. I may also have discovered an army that finally captures me and looks fun to build, paint and stomp my enemies with. Also I have a giant gaming hall down the road (hint, hint). This gaming business will get me out of the house, have me meet new people, and I already know loads of people in the hobby.

As an Aspy I don't realise I miss things (friends? who the hell wants them? ME!) until I sit down and think, and that is what this blog is forcing me to do. It is highlighting issues I hadn't even realised I was having. Just from the amount of times I've mentioned work so far made me realise that my life is currently work, eat sleep, university, eat, sleep, work. That's not really healthy.

With the hobby, I have an easy in, I already own an army to get me started, I just need to build it and paint it (*SIGH*), and I know people who can teach me the new rules and then whip me round the hall like the dog that I am.

All this talk of hobby is getting me into a hobby frenzy, better procrastinate some more......

Sleeping troubles

I have a complex relationship with sleep. I do too much of it, at the wrong times, I enjoy it but equally I can't sleep when I have to.

It is recognised as an aspect of Aspy, and when I was reading a little around while doing my testing, although that said in a vain attempt to prevent skewing any results I didn't do any real reading, I discovered that Aspies do have trouble sleeping and can be prescribed sleeping tablets by a health care professional. I know my cousin has set sleeping hours and is completely out during that time, whereas I sleep erratically and have been known to be awake for twenty-four hours and then sleep for nearly the same amount of time.

I have been on sleeping tablets but that was due to work related stress (a topic I am still trying to formulate into a tactful and tasteful blog post, something that I find difficult to do), and they worked so well that my Aspy nurse had to give me 'the talk' (one of many) about how they don't help me sleep and just mess up my clock.

I had a three hour nap yesterday during the day, and I have slept for four hours during the night, I've been awake since four and up since five.  I have university in three hours, so I can't go back to bed, and it would be similar with a work situation.

Sleep serves a number of functions for humans and other animals, and while the purpose behind it is not fully understood a number of theories include obviously recharging lost energy, a chance for the body to heal (if your brain isn't trying to keep you alive consciously it lets you body focus on repairing itself), a chance to learn (who hasn't seen those baby adverts), and as a defense mechanism, we sleep during the night for a reason, it's when all the big bad things that eat us come out. Find out more here.

So more safety for me, surprisingly placed, and uncovered during my tests. I was asked when I felt safe. Laugh all you want but my response was: In bed asleep.

When I analyse this thought though, and when asked to explain why I felt safe there my answer was simple and surprising:  I fell safe because when I'm asleep I am not in trouble, everything is OK, I'm not doing anything 'wrong'. 'Sleep, that's where I'm a Viking!'

All joking aside, it holds water as an argument: it is a social situation I understand (I'm asleep, how hard can it be), I'm with 'someone' (myself, or a partner who may also be asleep) who doesn't expect anything of me, who doesn't require empathy. Being asleep takes me away from situations I perceive as harmful or challenging (which is part of the protective theories connected with sleep theories), stressful situations that can cause me to become overwhelmed, and avoids taxing me into social situations with people who may not understand me.

The world turns, I'm safe and life continues, at least for the brief times I can sleep, I miss things I find stressful or intimidating. I just wish I could regulate it a little more, and do it on command.

flick the switch.

The Times magazine ran a piece on Saturday called 'Are you on the spectrum?' It explores various aspects of Aspergers and it's current place in society. It is well worth the read if you can lay your hand on a copy but if you can't it touched on some points that ring true to me.

Firstly it touches on the notion that being an Aspy is a fashion sense now, that it is 'hip' or 'cool' to be quirky and explain it with a diagnosis of Aspy, or as the article puts it: a little Aspy. There is no such thing as 'a little'. Yes the spectrum varies: I am high functioning to the point where I can blend (although not that successfully) into mainstream life and I know people who can't. I for instance have never been told I won't complete school or university, as much as my lecturers and teachers may have thought it, whereas my cousin, who recently got top grades in school, was told he would be lucky if he completed school. Even my Aspy nurses say everyone is a little on the spectrum, and my old headmaster when I told him, said his wife who knows about these things, believes all men are on the spectrum somewhere.

It also discusses the current trend for every TV show, book, play or other media outlet to have an Aspy character who is super brilliant, can do complex maths in their heads, to play ten instruments and speak as many languages fluently, and to use technology as if it was a part of their own anatomy. Louise Carpenter, the author, feels it is excellent that Aspergers has lost its taboo but equally that it has now swung too far into public perception. I feel like making and handing out capes when I see that sort of portrait of an Aspy. They might as well be able to fly. The number of Aspys with superpowers on par with TV tropes is minimal, the rest of us are just regular humans who experience the world differently. I am appalling at maths, in depth technology puts me to sleep, and while I speak two languages that, like everything in my life, is an accident of birth. I don't have beneficial superpowers that I've traded my ability to socialize for. So I have two problems: I can't make friends and I can't fly.

Lastly it talks about relationship problems. *sigh*. There is significant research stating that a relationship or marriage will fail if a partner (usually male) refuses to get treatment for Aspy behaviour. Aspys can be emotionally distant and cold in a relationship, wanting to please a partner but not knowing how. This links in with my inability to develop friendships beyond a basic level, and the same as I've stated before, goes for relationships. I can be a cold hearted bastard at times, and in work being able to see the end benefit can make me over come some of the heartbreaking choices I'm forced to make. Removing the emotional barrier can be hugely beneficial.

Hey look, I found my superpower.......  

'It never gets better'

Having a job is tough for everybody, I see it in friends and housemates. It is rarely fair, under the current economic umbrella we are being asked to do more on less and I'm sure it stresses everyone out. It is no different for me, but I crave work. It keeps me out of trouble, gives me structure and support, even if the additional support is not provided. It keeps me motivated, and gets me out into the world.

I have been jobless in the past and it has been awful. Days in bed sound great until you are doing them, day in and day out. Then it becomes a mind killer. Aspys often have a patchwork of work history, three weeks here, four months there, with no real common thread or reason behind them. I can guess why, but without having read too much into it in research or having experienced it too much I cannot talk beyond personal experience.

Boy do I have personal experience.

Going back right to my employment history at 16. Ok so I went to school, held summer jobs, but most of my jobs ended after a few months, for various reasons.

I don't want this to be a work blog, what I do, how I do it, with whom and who for, I want this to be an experience job, my road. Equally, work will feature in this blog because, hilariously, it is where I get the most of my human interaction. That is a fact I only realised while thinking about blog posts, what I can post about and what is currently effecting me. So the blog is already helping me?

The title of this post is a comment from a health care professional, and it struck me at the time as I will always have to fight my corner but on reflection may mean that Aspergers never has a 'cure'. It was a farewell comment after a discussion of my last two years, the road I've traveled up until now, the problems and discrimination and lack of understanding I have come up against and how those attitudes have changed with information and education.

Here's hoping things do get better, even if it is not my condition.

over coming problems

Sorry for the silence, I've been working and then I've been sick, the joys.

Anyhow I have a long standing gripe to express and examine. I make flippant remarks, and have done for at least two years, but more likely long before that and it was never commented on. It has been described as throw away remarks that people don't know how to respond to and puts them off, or more recently as backhanded remarks that people find off pulling.

I will freely accept that this happens and is most likely a problem, and to what extent it connects to my Aspergers is debatable. Maybe I'm just a sharp tongued dragon who really likes upsetting people. This is possible, but unlikely, as I get upset when people point out this behaviour.

I have a blanket strategy for dealing with Aspy behaviours I display: challenge it, to change it. If people point out the behaviour at the time, they can help me modify my behaviour. If they leave it, and report it to a person in authority, who then calls me on it, I cannot remember the comments and feel at a loss. That is a double edged blade, because I 'get into trouble' or get a talking to for behaviour I cannot control, or am unaware of, and by then it is too late for me to spot the behaviour and to change it. It becomes a punishment talk (although my manager is more then fair) instead of a constructive criticism talk.

Now, I can see how a barbed comment can be intimidating and can stop people from wanting to be confrontational, especially when the original comment may not have been neutral or easily interpreted. I like to think I'm cracking a joke, one that misses its mark. I have, however, described my strategy to my co-workers and encouraged them to use it. My Aspy nurse has come into my work place and spoken to my manager so that there can be a free flow of knowledge of my behaviour and it can be tackled from both sides. I know this makes me sound like an unruly child, but you know what, sometimes that is how things must be tackled.

This makes me think of a number of dynamics in my life. I have to strive and work to overcome my behaviours, and in my view can only benefit from understanding and compassion if I strive to meet everyone half way. There is no escape clause here, where I can sit back and expect the world to pander to me because I'm different, I determined that in London. Society expects conformity to some degree, and with Equality Acts (2010) and other such acts protecting me and my right to work, I have a responsibility to step up and challenge myself to over come my behavioural and social problems.

I did also ponder the reason why I make snarky remarks, and I think it is a defense mechanism as much as anything else. Dyslexics become masters of filibustering,the ability to talk rubbish, tell stories, do anything to prevent exposure of perceived inadequacies. We delay tests, school work, real work, anything we feel incapable of dealing with and know that as soon as we start our faults will be spotted. I find writing hard, laying out my thoughts on paper, organising something into clear opinions. I wonder if my commentary is a defense, to put others on the back foot so that they won't examine me too closely or be too critical of me.

Anyway I need to go to university.

waiting times

After an entire year of waiting, I finally saw a nuero doctor earlier this week. Within a week, I already have a hip x ray appointment. It's ok, I didn't want children anyway. While this is a a step forward to finding out why my gait is dodgy, it got me thinking about something else. That flippant joke about xrays fixing me? Yeah that.

The more I've learnt in the last year about myself the more I'm left questioning if I should have children. Is it fair to have children when one partner has two disabilities and a nuero-biological disorder? I am fairly sure I could cope with support with a child (i.e. the babies mother, my parents etc), my question arises from is it fair to know that I have 'bottlenecked' all these different 'problems' (this ability, THIS ABILITY) and know that I am willingly playing genetic roulette to get a result.

I suppose we all play the game when we create children, and Downs, CP etc do randomly appear with no suggestion in either parent. When those children are born they are still loved and have every right to a full and happy life. I know what I have, and while people don't know exactly if the disorders I have are genetically passed on, should I have children to fulfill a possible need in me by bringing a child into the world who faces years of hardship and extra courses? Not that I currently have that urge, babies put me off mankind, at least when a dog wees on the carpet it's cute.  

So I guess what I'm saying is that if and when I do want children, i don't just need to be financially ready, with a nice house etc etc, but also ready for unexpected surprises, one of which maybe of course that my off spring have avoided all I have to give them.