My self confidence level moves around hugely, but on average has never been very high. Trying to keep my glass half full rather than half empty is a problem that I face frequently, and even after all these years, I still don’t have any hard and fast remedies to turn things towards the positive.

Learning about my Asperger’s appears to have just added to the volatility of my mood and in turn my self confidence. Whilst I spend much of my time these days feeling that I now know and understand myself far better than I did a couple of years ago – which is a very positive thing – I also frequently see differences in the way I am versus ‘normal’ humanity that I simply wouldn’t have spotted before. I find seeing these differences an almost invariably negative thing, and their discovery typically pushes down any positivity that I was feeling. My differences hit me like a punch in the face – they are unexpected and often unpleasant.

And then there is the self doubt to contend with too. Having grown up in a world that frequently moves and works in ways that I fail to predict and fully comprehend, I’ve grown accustomed to being ‘wrong’ about things. That nagging self doubt creeps into all areas of my life, especially when I’m not feeling positive. On darker days I still question whether I actually am on the autism spectrum. Despite all my reading up and thinking on the subject, the countless hours of research and self evaluation, I still can’t convince myself sometimes that this label applies to me. Why? Well, I’ve been wrong in the past when I was sure about things. Why not now too?

With my diagnosis rapidly approaching, I’ll soon have the opinion of someone who knows. I hope that will settle the internal arguments I have about it. My natural reaction right now though is to say that I dont know what the outcome will be.

Am I nervous about the diagnosis? Of course. I’m also haunted by the words of my mother, as spoken to my wife. To paraphrase: “If he does come back with an Asperger’s diagnosis, it’ll be because he’s read up on the subject so thoroughly that he knows all the right things to say”. I can see through this, of course, but I can’t pretend that it doesn’t hurt, and on less positive days, my lack of self confidence says that maybe she could be right.

Writing seems to help, to a degree, as it means I can externalise some of the thoughts that are running through my head. So as we near ‘D’ day, expect me to write here more frequently again, because seeing my glass as half full rather than half empty  is important.

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Glass half full

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Whilst I prefer to hide in the background, I do often say or do things are are simply not subtle. I say things that upon reflection it becomes obvious that I shouldn’t have said. I do things that I really shouldn’t do. Things that make others cringe with embarrassment at.

But here’s the thing. The ways in which the autism spectrum makes itself visible in peoples’ lives is for the most part very subtle. Both my wife and I recently reached the same conclusion on this, and we’ve since discussed it at length. Our thoughts on this have of course been formed from our own experiences, and from observation of my family, and as such centre around the effects of Asperger’s Syndrome rather than on the Kanner’s end of the spectrum.

It’s nearly a year ago now that I first emailed my parents to try and explain that I had Asperger’s to them. If you’ve read much of this blog, then you’ll know that the fallout from this event was rather large, and more difficult to deal with than I was expecting. Well, it is still causing a problem in my family, and I’m still finding it difficult to communicate with my parents, and in particular with my mum. The big bone of contention is purely that my mother cannot see my autism. Her line a year ago – and still to this day – is that I don’t have Asperger’s. She has gone as far as saying this to my wife, but not directly to me.

Next month, I am going to attend an appointment to get my formal diagnosis. As part of this, the clinic have sent an in depth questionnaire aimed at the parents of attendees to try and help get a feel of what the attendee was like as a child. On a recent visit by my parents, I took a deep breath, and managed to raise the subject of the questionnaire. Would they mind filling it in when they got home? My mother jumped at the chance, which was something of a relief, yet what happened next has been ringing alarm bells for me ever since.

I handed them the questionnaire over breakfast on the last morning of their visit. I then left for work. What happened next is relayed by my wife. My mother spend some time pouring over the questionnaire without actually filling it in. She told my wife that I “exhibited hardly any” of the symptoms as a child that the questionnaire was trying to draw out. My dad then started looking at the questionnaire with my mum, and murmured his agreement too.

And that is the last we have seen or heard of the questionnaire. I naively assumed that they’d fill it in and send it back to me. They didn’t. After a couple of weeks, it dawned on me that I wasn’t going to see it. I checked the copy that we had from the pack the clinic had sent. There, in the footer of each sheet was the clinic’s address. My parents have sent the questionnaire straight back to the clinic. It is difficult to draw any conclusion from this other than they don’t want me to know what they have answered. This does nothing to help soothe family relations.

The problem, with my parents, I am now sure, is one of subtlety.

When I was growing up, my parents were not looking for signs of the autism spectrum. Indeed the whole concept of an autism spectrum did not exist at that time. Autism was a single condition that caused a small number of people to be completely lost in their own world all the time. Based on that definition, I certainly don’t have autism.

Yet the clues were all there, albeit subtly, whilst I was growing up that I was on the autism spectrum, had the definition existed in its current form. I’ve talked about all of this at length before, but briefly: I was bright at school, and did well in academic subjects, but I was hopeless at sports. The rigid structure of school life suited me very well. I was told what to do, and I did it without question. Indeed the routine ultimately provided me with a great deal of comfort – so much so that I can still conjure up the feeling to this day. At the same time I almost completely failed to make or keep friends. The start of a new school year always provided me with huge stress and anxiety. Classes had new people in them, and took place in different orders in different rooms than before, with different teachers. My peers started becoming wonderfully social creatures, and I really didn’t understand what they were up to. It became more and more difficult for me to blend into the background as I understood less and less about what my peers were up to. I became depressed and full of anxiety.

My parents weren’t looking for any of this. They didn’t see me during the day at school. I’m certain they put my lack of friends down to a combination of shyness and the fact that I was sent to a secondary school outside of the local catchment area. That is, of course a very blinkered reasoning – many of my peers lived in separate villages, and I know for a fact that they still managed to play and socialise together outside of school.

My wife and I have been seeing subtleties in our own little family over the last few months.

My daughter has recently turned four. If you weren’t looking for the subtleties, then you’d most likely see a lovely little girl – indeed we get a lot of comments along these lines. A little shy, maybe, and at times badly behaved, but most of all just a sweet little girl. We see all of this too, but we see far more. We see the daily clumsiness that leads to constantly scraped knees and bumped elbows. We see the anxious little non-verbal periods where she’d just like a hug rather than say anything.The confusion and anxiety in her eyes. We see the subtle problems she is having at nursery school: She often doesn’t want to attend; she doesn’t understand the subtleties of friendships that are at play; she wont join in games unless asked – she just stands on the edge of the game and waits for it to finish. She is also often shattered at the end of a nursery day, and I’ve started to see her produce excuses to work around the very real complications she is experiencing whilst there – “Did you play with Jane today at nursery?”, “Jane isn’t my friend!” (Jane is the nearest my daughter has to a best friend, and it has been this way for the last year). “Who did you play with today?”, “Can’t remember!” (with accompanying shrugs and aloofness). I know how she feels.

My wife and I are both certain that she is showing many signs of being on the autism spectrum, and my wife has reached her conclusions without influence from me. She see’s those patterns that she’s seen in me over the years now playing out in my daughter. I see them too.

Incidentally, my son, who is nearly six, also shows some spectrum traits. His are less pronounced than his younger sister, however.

–

It’s subtle. And that’s just the way it will always be.

If you don’t look for autism, you won’t see it

- at least not until the person does something very unsubtle. Something that is a faux pas.

But don’t ever EVER assume that just because you can’t see it it isn’t there.

Life for those on the spectrum is often difficult and complicated in ways that they simply don’t show you.

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Subtlety

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There is quite a distinct style behind this, and some strongly embedded techniques that I use all the time to try and make my life easier.

First, I assume the other person is right by default, and I acknowledge this in lots of ways whilst I’m interacting with others. To do otherwise will often lead to me having to defend myself, and this feels both threatening, and difficult from the point of view of finding the right words.

Secondly, I’ll resort to communicating in a written way, if I can get away with it. In the office, email is king for me. By doing this, I can take more time to find the right words for what I’m trying to express. If you knew me, and really thought about it (I doubt people do), you’d realise that I can express myself far better in email than I can face to face.

I also use mimicry quite heavily, especially when in larger groups. If people laugh, then I laugh. I’m often not fully aware at what I’m laughing at, but I know that to blend in, I should laugh, so I do. Understanding the joke can come later, unless of course I’ve already reached the point of over-stimulation.

Perhaps the most intriguing technique I use is that of metaphor, analogy and allegory. This is a technique I’ve learned to apply frequently when I need to describe something to someone. It has been a technique many years in the making – probably a lifetime, and certainly from way before the prospect of having Asperger’s was ever on the horizon.

So, why do I use it?

I’ve always found it difficult to verbalise ideas and thoughts that are in my head. This, you may be surprised to hear is something of a new revelation to me, despite suffering from it my whole life. Mundane stuff can be easy to say, as can information about subjects which have become something of a special interest, but feelings, emotions, concepts, techniques and other things like that I frequently find difficult.

In the days before I understood that this might be part of a neurological condition, I realised that others found it difficult to understand what I was trying to convey to them when discussing something that I found difficult to put into words. I would get flustered, and would find that the more I tried to put it into words, the less sense it made to me, and unsurprisingly to the other person too. Suddenly, I would find that I didn’t have the words that adequately described how I perceived the concept in my head. What I didn’t know at the time, was whether the other person found my words to be difficult to interpret, or if it was the subject itself. I also didn’t understand why it was difficult for me – it just was, and that was that. In other words, I had no real concept as to whether others had the same difficulty in expressing things verbally in the same way that I did. I may even have assumed that they did, unless they were very obviously an extremely eloquent speaker.

My response to this was to try and find some other way to express what I was trying to say. Metaphor. Analogy. Allegory.

These techniques seemed to work very well for me, because they generally turned a concept in my head into some visual picture. A concept that was difficult for me to interpret could be shoe-horned into an allegorical story (well, just about), and it would then make far more sense to me. Then, when it came to trying to explain the concept to someone else, I’d resort to the allegory after my first attempt had caused confusion.

Does my use of these techniques help the other person to understand? I used to think that it always helped. That isn’t true, though. The real picture is that sometimes, yes, it helps. Other times, no.

What I can say with some certainty is that it helps me tremendously, much of the time. By turning a difficult concept or thought into a silly situation with characters that I can picture, it instantly makes more sense to me.

These days, I wonder if the language in my head is different from that of the typical person. I know, for instance, that I’m a very visual thinker. Could it be that the way that I process thoughts and feelings uses different techniques than a typical person? Might this explain why I don’t seem to have a very appropriate language to turn my thoughts into verbalised words? Might it also explain why I find feelings so difficult to explain, and why I find concepts difficult too? Maybe these things do have a language of sorts inside my head, but the language is not the same one I verbally use.  Indeed it’s happening right now, even in writing. I have a picture in my head of how this might work, but I can’t find the right words to describe it.

One thing is for sure though – in my tool kit that helps me make sense of the world,  allegory is one of the first tools that I reach for.

Was that a metaphor?

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An allegorical story

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Here in the UK, autism isn’t well understood outside of families that have been touched by it. I believe it’s still very much seen as a condition in kids that causes them not to interact with others, and to rock backwards and forwards. Many people in the UK will have heard of Asperger’s, but will have no idea what it is.

These assertions are partly borne out by the fact that I’m a well educated middle class man, and I didn’t know what Asperger’s was and indeed my knowledge of autism was framed much as I stated above until such time as it was suggested that I was on the Autism Spectrum. A spectrum? Goodness – that was a new idea to me. When I went to see my doctor last week, she said, “So of course, autism is really a spectrum, with different degrees of affectedness…” as though this was something new to her too.

This lack of knowledge makes my job of just how much to tell people about my autism quite a challenge. I’m aware that a great many people will start with the stance that I can’t possibly have autism, because, well, I’m actually talking to them, and autistic people don’t do that, do they?

But do you know what? I’d much rather have this challenge, than the one that I perceive people in the US have.

In the US, various groups lobby for their view of autism to become the accepted norm. They have a lot of power, a lot of money, and are often backed by famous individuals to lend them that extra bit of trust in the eyes of those who listen to their messages. They release expensively produced videos that are carefully crafted to further their cause.

The problem for me with all this is that the message they are sending is not actually based on the reality of autism.

I can’t imagine what it must be like being a freshly diagnosed adult with autism trying to explain themselves in the US.  As well as general ignorance towards the specifics of what autism really means, you are going to be faced with people who think they know all about autism, because they’ve seen one of the lobbying videos from these groups.

All of a sudden, you are going to be talking to someone who has just associated very negative things with you, based on something a celebrity told them on TV – so it must be true. You may be viewed as being a home wrecker, or incapable of feeling empathy for others. You will likely be seen as damaged, and you may be asked how your treatments towards a cure are going. In short, you may well be seen as being a worthless person.

A particularly nasty vision of this negative propaganda was released this week by Autism Speaks. You can see the video here, on YouTube. Words fail me as to how truly despicable this video is. Various other places on the Internet have noted how, if you mute the sound and watch the video, you only see happy and contended autistic kids and adults. Add the commentary, and well, it turns into something completely different. It upsets me, and it’s just plain awful. Period.

Autism Speaks does not speak for me.

I’m very happy to report, however, that this morning I saw another video. One that helps to redress the balance. Rethinkingautism.com does not, I am sure, have the same political clout or lobbying ability as Autism Speaks, but they have produced a wonderful video to counter the likes of Autism Speaks. I encourage you to watch it – here on YouTube. If only this was the message that was being given the really hard sell in the US…

Coming out to the world as autistic is never going to be easy, regardless of where you live. But I’d rather that the population knew nothing about autism than they were being fed very slick misinformation from a well-oiled political propaganda machine.

What would be really wonderful was  if autism was as well understood and tolerated  in the population at large as, say, cancer is. The irony of this statement is of course that cancer isn’t really well understood by people, but people generally do know enough about it to understand how it impacts people, and to empathise. And that’s really what autism needs too.

Maybe one day…

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Awareness versus propaganda

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A great many people, it would seem, don’t believe in things they can’t see. I can understand that point of view – the world seems to be a much simpler place if you take everything you see at face value. If the world has taught me one thing, though, it is that you can’t take anything at face value.

From time to time, people have seen my Asperger’s in every day life, and have commented on it.

“You walk funny,” said one of my so-called friends at school. I’d maybe have been twelve at the time. I did walk funny – well I had assumed I did for some time, because I wore out the soles on my shoes in an unusual way, certainly in a different way to that of my peers. The jibe still hurt though.

Maybe a year or two later, and still at school, I took part in the annual sports day. I ran – slowly – in a 400m race. After coming in at the tail of the field, I made my way back to where my classmates were gathered, only to find them doing odd looking runs and laughing at each other. “You run funny,” one of them said to me. Their mimicry of my running style left me feeling terrible, yet I knew instantly that they were right.

When I was sixteen, my maths teacher took me to one side after a lesson one day, and asked if everything was ok. Actually he went much further than this, and astutely pointed out that I seemed to be suffering badly from stress. “You should try yoga. Really. Give it a go. If you don’t learn to unwind, you’ll end up making yourself ill.”

At some point in my mid twenties, I noticed that the default relaxed position for my face included a frown. By this time I already had deep wrinkles on my forehead, caused by the facial expressions I pull when stressed or anxious – which is a lot of the time. I’m often not concious that I’m pulling a face.

Over the last fifteen or so years, I’ve heard the same thing at least half a dozen times from concerned work colleagues: “Are you alright? Its just that you look really worried”. I’m typically taken aback by comments like this, and require some top notch acting to talk my way out of the situation. I’ll put on an instant huge smile, and make up some tale about being lost in thought about something, rather than being worried. Whilst I may have just been going about my usual routine, they have mostly been right – I will be have ruminating and worrying about something or other, and oblivious to me, it showed on my face.

The one thing all of these scenarios have in common is that people noticed something about me that was caused in one way or another by my Asperger’s. I’m sure that not one of them wondered if what they saw was connected to Asperger’s, however, and why would they? The human condition has many causes for all of the above traits, and people tend to plump for the explanation that they have come across before, and thus seems the most likely.

I’ve avoided what are perhaps the obvious examples of how Asperger’s shows itself here – examples that involve social interaction. Clearly, when I can’t or don’t shy away from a social event, there are often times, particularly towards the end of the event, where I get tired, overloaded, and my acting will start to slip. Indeed, I wrote about one such event recently. But just as I’ve focussed on this sort of trip-up before, so have many others, and I thought it would be nice to show that just sometimes, people do spot the outward signs of AS in other ways.

Asperger’s is a hidden condition, its true. With so many other potential causes of those outward symptoms that people do sometimes see, its easy to see why some people simply don’t believe in it. But if you know what to look for, and you know someone for long enough, just maybe, sometimes, you will see it, even if you have no clue what it is that you are really observing.

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You walk funny

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I understand many of the reasons why friends are important these days, and yet at this moment, aside from my wife, I really don’t have any good friends. Good is, of course, subjective. What I mean by good, is someone who I can be myself with 100% of the time, who I can be fully open with, and who I’d happily (and regularly) disappear down the pub with, or go out for a hike with, or, well, I’m sure you get the idea.

I’m in this predicament due to my own making. I last tinkered with trying to create a good friend maybe eighteen months ago, and failed. This didn’t come as a surprise, sadly. I find it very difficult to keep relationships going, and in that particular case I ultimately let it lapse after we went out for drinks a few times. In a way, letting people into my inner circle feels very overwhelming. I’m comfortable with my wife being in there most of the time, but with other people, I can see that I’m acting rather than being myself, and I guess I feel afraid to let others  in to see who I really am.

So, what does someone like me do when for one reason or another, communications break down with the one person (i.e. my wife) who is within my inner circle? That’s a very good question, and not one that I have a very good answer for.

There have been a few times recently where, with raw emotions in full flow, I have felt I have no-one to turn to. That’s not a nice feeling at all.

My wife works very hard to understand and accept this monster of a condition which she wasn’t expecting to find hidden inside me. But I fully understand that this isn’t at all easy for her, and there are times when she can’t help me, and would just like the whole Asperger’s thing to go away.

This all makes me see how many people with Asperger’s lack any of the good friends that they need to help keep them make sense of the world. Continually turning the raw emotion and negative feelings inwards must cause a lot of damage and despair, and I feel very lucky that I don’t experience that very often.

Sometimes, I can turn to this blog to express some of the feelings that are causing me problems. But that doesn’t always work either – there are some things that I just won’t talk about here. Whilst you see me as I really am, there are some aspects that I simply don’t write about. That’s usually because for one reason or another it would be inappropriate for me to comment.

If you are one of the handful of regular visitors here who I know in some way other than just through comments, then I hope you don’t feel hurt by this posting. I do consider you as friends, and in lots of ways you do know the real me. None of you are physically located close to me, however, and you all have enough on your plate already without me offloading in your direction. Unfortunately these things rule you out of being a good friend by my own definition. I hope you understand what I mean.

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Having no-one to turn to

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Once such case was waiting for me when I got back from lunch today. The basics of the case were obvious, and I created a ticket for it. However, one of the specifics wasn’t at all clear to me, although it looked to me like what the client was intending was implied, but not actually stated

Not wanting to misinterpret what the client was asking for, I pushed the case back to the call handlers, and asked for clarification on the item I was unsure of. I got an immediate reply. It was almost rude.

The reply stated in no uncertain terms that the original information in the case clearly stated what was being asked for, and of course the client was wanting the item that I was clarifying. The email essentially said, “What? Are you stupid or something? Did you not read what was written?”.

And in retrospect I could see that perhaps it was obvious what was being asked for. The problem is that unless someone says, “This is what I want,” I find it difficult know just what it is that people are asking for. I’ll have an idea of what they want much of the time, but because I’m not sure, I’ll end up asking for clarification. This produces reactions of surprise and astonishment from people. How could I possibly have not understood what they were asking?

There is a degree of reading between the lines of what people are saying that is just lost on me.

Can you read between the lines?

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Not reading between the lines

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Just look at all those hungry mouths we have to feed
Take a look at all the suffering we breed
So many lonely faces scattered all around
Searching for what they need

Is this the world we created?
what did we do it for?
Is this the world we invaded?
Against the law?
So it seems in the end
Is this what we’re all living for today?
The world that we created.

You know that every day a helpless child is born
Who needs some loving care inside a happy home
Somewhere a wealthy man is sitting on his throne
Waiting for life to go by.

Is this the world we created
we made it on our own
Is this the world we devastated
Right to the bone?
If there’s a God in the sky looking down
What can he think of what we’ve done
To the world that he created?

Lovely words – I hope you agree – and absolutely laden with sentiment that I find irresistible these days.

They are the words to a song by Queen with perhaps an obvious title, Is this the world we created…?, which was written by Freddie Mercury some twenty five years or so ago. For perhaps the quintessential performance of the song, click here to see Freddie and Brian perform it at Wembley Stadium in 1986.

Mentioning music in my blog is a first, but it isn’t for the lack of trying. I’ve started a number of articles about the relationship between me and music since I began writing here, and yet somehow none of them have captured the emotion well enough. This isn’t going to be the article I’ve been struggling to write either – that will have to wait – but hopefully this piece will start to give you a sense of just how much music – the right sort of music – works on me.

Is this the world we created…? only popped back into my life a couple of days ago, after a hiatus of perhaps fifteen years. I’d forgotten about it’s very existence, and only rediscovered it again by accident, on one of my follow-the-link sessions whilst using the Internet.

Having clicked on the video link, the opening chords sent a chill down my spine, and made the hairs on my arms prick up. I knew this song. I knew it was good, but I had forgotten just how good it was.

I was in something of a sad and reflective mood – I’d been reading with some disbelief how it was nearly eighteen years since Freddie had died. I found that incredible.

I remember hearing about his death almost like it was yesterday. For me it was one of those moments that stays with you forever. I was at sixth-form college, and I’d heard the news on breakfast television, and then again on the radio on my walkman on the bus to college. I remember feeling sad, and disappointed that someone so wonderfully charismatic and influential had been taken away at such a shockingly young age – Freddie was only 45 when he died.

When I watched the above video clip for the first time a couple of days ago, the sense of loss I felt was immediate. In two and a half minutes I had been reduced to big choking tears. I watched it a couple more times, and really cried hard for a few minutes.

What was I crying about? A very good question. I felt the loss of something. Was it the loss of a teen idol all those years ago making itself finally felt? Perhaps there was an element of that there, but that wasn’t really it.

Was I mourning my loss of youth? Well, youth clearly has a bearing on this. The music brought back very hazy memories of feeling young and energetic, but also of feeling fundamentally lost, alone and unhappy in a world that made little sense to me.

I think the music had brought back how I was really feeling at that time in my life – a feeling that I kept very well hidden, for fear of, well, I’m not sure what. My peers all seemed to be happy and relaxed with life. They were all starting to look for independence, and were achieving it by going to colleges on the other side of town by bus and by applying for university or planning to go travelling around the world. I too was doing this, but primarily because that’s what everyone else was doing, and I was filled with with a feeling of barely controllable terror much of the time.

I’ve been quite teary on a number of occasions over the last few days. Perhaps this is because I’ve had a bit of alone time in the evenings for a change that have allowed me the luxury of thinking about things in detail. This is a natural conclusion to the anxious and down feelings that I’ve experienced over the last week or two, and I feel lucky to have had the opportunity to try and express and deal with it, finally.

Going back to Freddie’s lyrics, I can’t help but notice just how well they sit with my own view of the world these days. I’m sure they didn’t back when I was a teenager.

It seems to me that there is hard-core logic in the words. Their truth is self evident, yet so wonderfully understated, allowing you to fill out the detail yourself using your own thoughts and experiences of the world. This too may go some way to explaining why the song makes me cry.

The world didn’t make much sense to me at seventeen, and it still doesn’t today at thirty-six.

This song, however is as relevant now as it was twenty-five years ago. Brilliantly simple, yet powerfully touching and perfectly executed.

What more could you want from music?

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Is this what we’re all living for today?

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I nearly chickened out – a social engagement was the last thing I wanted to do, but I stuck to my guns and went. It was an after work do, arranged by a former colleague to show off some new facilities that his current company has just opened. So this was a very real social event – the whole purpose was for my former colleague’s company to drum up some business for themselves, and for those there to network with each other.

I dislike this sort of forced social event at the best of times – it feels really rather false, as half of those there typically out to hard sell whatever their product is. But I’d said I would go, and so I did.

You know how sometimes on TV programs and films they use a clever camera trick to show something and then quickly zoom out, from a first person perspective? Well, that’s how it felt for me when I arrived, feeling very apprehensive at the venue, having spent well over an hour in the car, fighting traffic. I saw everyone else intermingling and chatting, and there was I standing there on my own, feeling very small.

I shouldn’t have worried. Some other former colleagues shouted me almost the second I was through the door, and I was then able to ease myself into the evening by chatting with them first.

The IT business in this part of the world is surprisingly small, and there were a handful of other people that I’d worked with at the event too. Over the course of the next two hours I chatted to most of them, and we reminisced about the old days when we worked together.

Whilst clearly not as bad as I thought it was going to be – I’ll even admit to enjoying the reminiscing – the evening didn’t pass without incident.

First there was the wife of a former colleague, who works in public relations for a prominent charity, and spent twenty minutes telling me how as a small business, what I really needed to be doing was arranging PR, and not spending money on marketing. Useful stuff, for sure, but it was almost Aspie like in it’s hard sell, and I was left wondering constantly whether my responses were suitable.

Another problem was the name badges. I’d decided to put the name of my fledgling company on mine. This was a mistake. In a world of reasonably big business, I ended up having to repeatedly talk down the company name on my badge. “Oh – it’s just a little thing I’m setting up on my own. Fixing PCs, email and web hosting – that sort of thing”. I felt a fool. Most of those there had their main employers on their name badge. Big important companies, doing important things. Not a little one man band that’s not really doing anything much right now.

Then there was the helter skelter. I kid you not, the lovely new offices in which my colleague’s company are based has a three floor high helter skelter in the lobby, as a piece of installation art that is intended to foster creativity. I tried it. Everyone did at some point in  he evening. It was fun. That in itself wasn’t a problem, but it will feature in a problem that I’ll come to in a minute.

Come the end of the evening, I needed to say goodbye to my host. I was over stimulated – all fuzzy headed and exhausted feeling. My host was popular, in in my state I found it difficult to attract his attention, spending a good 30 seconds looking like an idiot standing on my own near him. When I did make contact and said thanks a lot, he did something I wasn’t expecting. Instead of an acknowledgement and maybe a “thank you for coming”, he did all of this, and then asked “I hope you’ve enjoyed it?”.

Gah! A fatal and unanticipated question. My brain scrambled for something to say, and ended up with, “Oh yes, and the, um, <pause>,  um, <hand gestures to try and signify the helter skelter>, thingy, <pause> um, too!”.

“Oh!”, he said, with a slightly surprised look, and a little odd looking grin, “yes!”.

I left. I felt bad – like I’d just made a complete idiot of myself. On the half hour drive home, my head was full of action replays of not just that incident, but also how I’d handled the PR woman, and whether my conversations with others had gone ok.

It was close to bed time when I got home, but once I made it to bed, I couldn’t get to sleep. The events of the evening were still going around my head.

With the benefit of hindsight, I didn’t do that bad, despite how awful the non enjoyable bits of the evening were. I’m never going to be great in situations like this, because by the end of the evening (and often long before this), I’m going to have reached my saturation level for sensory input. When this happens, I start to go vacant, quiet and unresponsive. That’s just inescapable fact.

And you know what? My stumbling over the unanticipated question from my host wasn’t that bad either. Embarrassing, yes. But he knows me well, and this is just me being me. If it was the first time we’d met, then maybe he’d have taken away a different picture of me, but he knows I’m like this.

I’m glad I went.

And yes, I’m going to consider some PR ideas for my company instead of just placing adverts, once I have proper services to sell.

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Not such a great social engagement

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Until that point in my life, I’d been plagued with feeling different from everyone else, getting into many scrapes of my own making that I didn’t see coming, and generally living in a high stress mode all of the time.

My discovery of Asperger’s, and my subsequent matching of its characteristics to my own personality was my real That Explains Everything moment.

I frequently wonder how my life might have been different if I was growing up today, with the reasonable chance that my differences might have been identified and diagnosed when I was still in childhood. Would my life have been easier or harder?

Let’s look at how it has been for me first:

My life has been lived under the almost constant feeling of high stress. As life has progressed and got correspondingly more complex, so my background stress level has increased. Tasks that a typical person would find to be not stressful at all – such as making a phone call – add intense peaks to my daily stress. Backing up my stress is anxiety. I’ve experienced this since at least my early teens, and it comes and goes in waves. This week I have it quite badly, but last week I was mostly fine. When bad, the anxiety can be crippling. A combination of it and the stress often leave me feeling dumbfounded just by regular life. I sit like a rabbit in the headlights of life, existing, but not really knowing what to do or how to behave.

You need to understand, however, that until a year or so ago, this felt normal for me. Whilst I knew that I was a little different in some way to most other people that I interacted with, I didn’t appreciate just how different I was. So, stress and anxiety felt normal – it’s all part of every day life for everyone. Isn’t it?

Life at work has always been a mixture of success and failure for me. When well guided, I work better than your average person, tend to get on with things without a fuss, and I’ve been well liked by various people that I’ve worked for for these reasons. When I work in a disorganised place, or for bosses who are underhand then I fare far less well. I’ve never been fired, but I’ve come close, and I’ve upset senior people at several companies with what I can now see were inappropriate outbursts. The problem is that I didn’t see them like this at the time. I’ve never seen the potential consequences of my whistle-blower-like activities in companies. I’m speaking the truth – what’s wrong with that? Bad times at companies also increase my stress and anxiety. So it goes.

In my personal life, I’ve been a serial monogamist. Without realising it, I’ve always dated women who could help take control of the areas of my life that I wasn’t very good at.

When I was younger, I held on for dear life to the romantic relationships that I had, and was desolate when they broke up. As I’ve matured (perhaps rather more slowly than a typical person would), I’ve become far more accepting of my responsibilities in relationships, and what I can realistically expect from my partner.

My dating methods have been unusual. When I was younger, it was always the girl that asked me out. I have always been sweet natured and queit and kind (although perhaps in an unusual way). I met my wife via an introduction from a friend and we text messaged first, before graduating to phone calls and then meeting. This took a huge effort on my part – effort that I assumed most other people had to use too to find a suitable partner. Without that introduction, there is a good chance, I think, that I’d still be single now, seven years later. I’ve never gone looking for love in bars, or using other typical methods that people use to meet other people.

I’m thirty six. I went to university, I have a wife, two kids, a house, two cars, and a job. I have a great deal to be thankful for.

How my life would have progressed if I’d been diagnosed with AS as, say, a young teenager:

Well for a starter, I doubt I’d have gone to university. University was expected of me, and hence I went. I didn’t enjoy it, as I failed miserably to make friends, and got though it only with the substantial help of a long term girlfriend.

I’d have decided that university wasn’t for me. So. No degree.

That would have meant that I wouldn’t have joined the graduate recruitment program of a large UK IT company, nor moved to London.

What would I have done for work? I really don’t know. I fell into the computing course at university more out of luck rather than good judgement. I toyed with chemical engineering and architecture first. IT suites me – but would I have seen that if I had been diagnosed with AS at a young age?

I suspect I’d have got a low paid, low status job – maybe a librarian or somesuch. Perhaps my work would have consisted of lots of reasonable short jobs.

I’d be stuck at home with my parents well into adulthood, because I doubt very much that I would have had the confidence to move out. After all – I’d been diagnosed with this big scary condition that made me vulnerable and easily led. My parents wouldn’t have wanted me striking out on my own in that condition, I suspect.

Relationships? I doubt there would have been many, if at all. A man in his twenties, living at home, with no friends, who perhaps doesn’t have a job, and who doesn’t socialise is going to find it difficult to find love. That isn’t rocket science.

And now, at thirty six, where would I be?

My best guess is that I would be living in a rented flat, with no career, and possibly not much regular work. I’d have made a few friends in the autism community, but I wouldn’t be married, and I’d probably have been single for many years. I’d be anxious and depressed, and frankly quite downtrodden and pissed off with the hand that life has dealt me. I would most likely get about by bus, having never learned to drive.

Frightening, isn’t it?

Life has been hard work to get to here, but it felt normal, because I had no expectations that there was really anything fundamentally out of the ordinary with me. I was different yes, but not that different. I got on with life, because that what you do – that’s what everyone does. I had expectations of living an ordinary life, and that’s what I set out to do, and ultimately did.

I genuinely believe that my life expectations, if diagnosed at an early age with AS would be very different. Everyone’s expectations of me would have been far lower, as would my own expectations. Even independent living would be a serious and hard to achieve goal. Life would be a struggle in a very different way to the way in which I’ve found it a struggle in reality.

–

The reason behind my thinking about all of this is perhaps not obvious, but has been knawing at me for a little while.

At times I see some of my AS-like traits in my own children. They are five and three right now. Would I wish them to undergo a diagnosis if it started to become clear that they fitted an ASD profile? It’s a difficult moral question to answer.

Based on how I think my life might have been different, can you guess which way I’m leaning on this right now, should it become an issue?

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Better to know?

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