It always does.

My wife wanted to talk. Not a friendly talk, but one of those talks where she wants to vent her huge frustration with me. She’s very good at this, and whether she realises it or not, has a canny knack of vicious character assassination, in these often one sided arguments that run from when the kids go to bed to when we go to bed.

Argument is not one of my strong points. I’m not often quick thinking, and so argument directed at me is typically just absorbed, and I remain quiet much of the time, unable to think of a decent counter to use. This, of course makes things worse. It makes it look like I don’t care. Of course I care. I just can’t produce the necessary come back that my wife expects and wants.

Our argument last night left me not only feeling down and unloved, but also completely misunderstood, and a little suicidal.

I didn’t see it coming. I rarely do. This perplexes my wife, who thinks she is being very obviously ‘off’ with me for days before hand. But I don’t usually see it, and I didn’t see over the last few days.

My life since my diagnosis has thus far seemed pretty good. I’ve felt like I’ve been achieving things – like I’ve moved on a bit. Except, as I discovered in a flash of inspiration that I had independently of last night’s argument, I haven’t actually been moving forward and achieving things.

What’s been happening is this: My focus has moved in a series of very fixed directions. For focus here, you can read special interest if you prefer. As usual with special interests, I feel to have no control over the direction the special interest takes. I’ll go further than this, and make another point, that I think is especially important here – for the most part, I’ve not even been aware that what I have been doing is indulging a special interest. Seriously.

For the last three or four weeks, I’ve felt like I’m making great progress at work. A series of disjoint jobs that have needed tackling for months have started to pull together into a larger project that is finally sorting out a whole chunk of loose ends. I’ve said as much to colleagues, telling my boss and my wife just a few days ago how satisfying I was finding it that everything seems to be pulling together and things seem to be getting sorted out.

As I mentioned above, my general thoughts on this have simply been that I’ve moved forward, and managed to get on with things and be productive. But that is an illusion.

In reality, it is special interest all the way. And after eight solid hours of complete focus at work each day for several weeks, the cracks have started to show this week. I’ve grown progressively more tired over time, and in recent days I’ve become snappy at home, especially with the kids, and I’ve not been sleeping well. My intense focus at work each day has left me drained outside of work hours, quite lacking in thought and speech, and I’ve clearly been uncommunicative at home – not that I’ve actually noticed this.

Yesterday, I broke. After struggling to get started at work, I found that I was obsessively hunting out cool applications and rearranging the home screen on my phone. I spent three hours on it, when I should have been working. The difference with this was I could see it was obsessive special interest. I couldn’t stop, much to my own horror. Even when I was hungry, it took me a whole hour to drag myself away and go and get some lunch.

So I was feeling quite depressed even before I left for home yesterday. For the first time I could see that I wasn’t a new more productive me, work had simply become my special interest, to the exclusion of everything else.

And then came the argument, which of course I didn’t see coming either.

It was extremely upsetting for me, because of course I was painted in a very bad light by my wife. I understand that this is what people do in arguments – you air your frustrations, and the other person in the argument airs theirs, and so the air ultimately clears, as both people get their grievances off their chest.

But of course, that dynamic doesn’t really work when I’m one of the people in an argument. I soak up the criticism, and don’t offer very much back. I feel more and more awful and useless and poorly understood, and reply less and less. This just makes the other person in the argument even more angry and the cycle goes round and round until bedtime, at which point the other person is often apoplectic with rage, and I’m a gibbering wreck.

So it was last night. I felt wretched, and useless, and that no-one understood me at all, despite my genuine best efforts to explain things from my point of view. The last part of this is perhaps the worst. We all feel useless from time to time and remorse too. But the feeling that the person closest to me really didn’t understand me or how I am, was almost indescribably painful. I felt completely alone, and that I would never truly find any understanding from anyone else.  I could see my life going forward being a series of unintended disasters where I unintentionally piss other people off. With those thoughts, and jibes from my wife suggesting our relationship was in trouble, and questioning whether I was capable of being a father in a family, it’s perhaps not surprising that I started to wonder where life was actually worth living.

I’m feeling a little better this morning – perhaps surprisingly, I slept well.

But I still feel wretched and useless. What’s more I hate myself too. Today is one of those mornings where I wish I didn’t have Asperger’s. I want to be normal. I want to feel like I’m understood for who I am. I want to have arguments with people and I want to be able to organise my life in a way that I get on with other people rather than piss them off. I’ve had enough of faux pas, and of hating social activities. I don’t want to be ultra-focussed on one activity at a time, and I’d like to be able to express emotions without difficulty.

And the daft thing is that my wife suggested last night that I can do all of this, because of a single sentence from the Diagnostic Assessment Report. She said I wasn’t trying. But I do. I try hard every day to fit in and do my best. Perhaps my best just isn’t good enough.

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Out of the blue

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Two weeks ago I was diagnosed with Asperger’s Syndrome. That didn’t come as a surprise – I have after all been talking on this website for nearly eighteen months now in a matter-of-fact way as though it was already a done deal. The diagnosis left me feeling both shocked and relieved. Yes, shock. It’s all very well researching and then convincing yourself that the balance of evidence says you have Asperger’s, but its a very different thing to be told it by someone who is qualified to do so. There is now no room for doubt. I was right, and I no longer need to worry that terrible what if: What if I am wrong?

Wednesday 12th May 2010 wasn’t a life changing day for me – the life changing day was the now forgotten date back in autumn 2008 when my wife sowed the seed in my mind that I might have Asperger’s. May the 12th was however perhaps the start of a new chapter in my life. Diagnosis may mean I can move forward with confidence in my life. Diagnosis may mean that I can negotiate a better way of working. Diagnosis may mean that I can get some help in making my marriage and other relationships work a little more smoothly. Diagnosis may bring me some peace of mind. Maybe.

But all that is for the future. Right now, I still feel a little in limbo. Whilst I was told at the end of the assessment that I have Asperger’s, the report has yet to land on my door mat. And without that a little part of me still hasn’t accepted things, and I haven’t felt able to ask myself what next.

But I can’t put off writing any longer. My pressure cooker of internalised thoughts and feelings is likely to explode soon if I dont let some of it out. My anxiety is back too, and is not giving me an easy ride.

So. What happened on D day?

For a start, I took the day off work, despite my assessment not starting until 17:30. My thinking here was that if I went to work, then I’d either arrive at the assessment overly stimulated from work, or I’d just sit at my desk all day getting nothing done other than getting more and more anxious. My parents had been drafted in to collect the kids later in the day, and to put them to bed for us. Both knew about the appointment, but didn’t seem to want to mention it. I think the nearest we got was when discussing food for the evening. Might me and my wife want to go out for a meal when we get back? I doubted it, but suggested a takeaway. My mum commented that I might feel quite down when I got back, so perhaps takeway was the better option. Hmmmm. After a little reflection, this meant only one thing to me. That she though I was going to come back having been told I didn’t have AS. Oh well. I decided that I really needed to put that out of my mind.

So, instead of work, my wife and I went shopping for the day. There is of course a risk in this too – the large shopping centre we went to could easily sensorily overwhelm me just as much as work. We were lucky – with it being a week day, it was reasonably quiet, and we took our time, not rushing or feeling under any pressure to be anywhere.

As the afternoon progressed, I started to get more nervous, and less able to potter around the shops. The final half hour before we had to leave for the assessment went on forever. When we did leave, I drove. This again was a calculated move on my part – by driving, I had to concentrate on the roads and the other cars, leaving little brain capacity for nerves and anxiety. It worked, for the most part, but as we pulled up and parked in the church car park next door to the building where the assessment was taking place, the anxiety once more had room to express itself. I felt terrible.

The twenty minute wait for the assessment to start went on forever, and during this time, I found myself shaking and unable to focus on anything at all.

In complete contract, the next ninety minutes or so passed in a rushed blur. After an initial five minutes or so where I found it difficult to come up with the right words, I managed to relax, and Special Interest Number One of the last eighteen months or so was able to take the floor and ensure that I got my point of view across.

Ninety minutes. It’s not long to impart enough information to base a diagnosis on. Whilst various subjects were covered in enough detail, I ultimately left feeling that others weren’t covered, and in some ways that left me feeling cheated.

After the assessment, my wife was ushered in and asked a few questions, but the Prof had already made it clear that he’d reached a conclusion about my diagnosis.

And that diagnosis: Well, I have Asperger’s Syndrome. I sank into my chair when the Professor finally said it. Those words felt like they had weight. My feeling of relief was huge.

And then some more detail: I have particularly difficult issues with social interaction and theory of mind – I don’t read many nonverbal cues, and as I don’t have a good theory of mind about myself, I find it difficult to put myself in other people’s shoes. In addition, I clearly have many day-to-day problems caused by Dysexecutive Syndrome – or executive dysfunction as I’ve referred to it throughout this blog. The Professor likened my problems in this area to ADHD, although stressed that he didn’t think I had ADHD itself.
There are also some areas where I have less of a problem. I used a great deal of expression during the assessment, and was able to convey my point of view well. The professor also noted that I was very well aware of my own limitations, and had clearly made adjustments throughout my life to try and cope and work around them – long before I suspected I had AS.  These were all things, he said, that he didn’t see all that often in people with Asperger’s. The professor used an interesting phrase to describe this. He suggested that my Asperger’s was in some ways mild. He then went on to clarify this by saying that in many ways this made the life of the affected person more complicated and difficult, as they were far more aware that they were different, and they often saw the consequences of their differences and had to deal with that.

I understand where the Professor is coming from on this, but I was, and still am somewhat uncomfortable about his choice of language. I don’t like the use of the word mild, because I feel it conveys the wrong message. Not to me, as such, but to other people who don’t understand the condition well. I can understand and accept that I have difficult problems in some areas, and far less of a problem in other areas that encompass the AS definition. But try telling someone that you have Mild Asperger’s. It clouds the waters, and almost certainly makes the situation more confused – if its only mild then clearly it isn’t much of a problem, is it?

So there you go.

When we got home, my mother was keen to know the outcome. She eventually asked after haf an hour or so, and I told her very simply – I have Asperger’s. Clearly, the right response was difficult to find. She said that it had been obvious from my mood – I was elated, and that actually the important thing was that I made the most of things. Ummmm…. Thanks mum.

–

So, where next?

I’m not sure as yet. I’m hopeful that the arrival of the written report will act as a catalyst for moving things forward. Both my wife and I are likely to visit the Professor again for an hour of talking about what happens next. I think we both need to hear about the pros and cons of being more open to others about my diagnosis. My AS has clearly impacted on my work life in unexpected ways over the years, more often than not getting me into trouble or causing unnecessary friction. We also need to hear about what might help both of us going forward.

Would being open about my AS make things better or worse? Do you have any strategies that might make life more straight forward?

As always, I’d love to hear your thoughts.

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Diagnosed: Part 2

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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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Firstly a warning. It’s not usual for there to be coarse language in my posts, but this post is an exception. Consider yourselves warned.

On Saturday night, my wife and I went to the theatre. But it was no ordinary play we were going to see, it was The Rocky Horror Show. You may or may not have come across this masterpiece of 70s kitsch rock opera, but if you haven’t, I’d best give a little background, as you’ll need it to help put my experience of the evening into context.

Rocky Horror is, well, a British institution. Gothic horror, sexual liberation and blurring of gender roles are the big themes, and it has a huge and very loyal following of mainly thirty-something Brits, who – man and woman alike – dress up lavishly, often in basques and fish-net stockings with suspenders to sing along and shout things at the players that over the last thirty years or so have become completely woven into the story.

So this isn’t your usual sort of theatre production. It owes more to a rock concert mixed with another British staple of theatre, the pantomime. The stage show is outrageous, the audience’s costumes are outrageous, and the audience participation is outrageous too, but all deliberately so, with a large amount of tongue in cheek thrown in.

If you are on the autism spectrum, you are probably now wondering why on earth I went to a show like this. Well, you have a good point, really.

My wife is a veteran of the stage show, so it is difficult to keep her away when the tour is in our neighbourhood, and I went with her for the first time a couple for years ago. We have the film too, and I enjoy the rock opera and find the themes fun. Despite this clearly being something of a minefield for an Aspie, there is also the potential there to have a good time.

On my first visit I didn’t dress up. This is perfectly acceptable – whilst dressing outrageously is the norm, the atmosphere is very relaxed, and frankly no one bats an eyelid if you haven’t dressed up. I felt out of place though, primarily, I felt at the time, due to the lack of costume, so for this visit, I was determined to go dressed up. Not in fishnets and a basque, mind you – that would make me feel more uncomfortable than not dressing up at all. Instead, I settled on a glitzy black evening suite with a red bow tie, red conical cardboard party hat and large sunglasses – a theme based on some of the background characters in the film version. My wife dressed in her usual Rocky outfit of fishnets, black mini dress, red feather boa, maids apron, crimped hair and white face paint. We both looked the part.

But that was where things started going wrong, really. If I was going to pull this off, I was going to need to arrive relaxed and happy, and with time to get a drink from the bar to relax me a little. Our plan built in time for this, but it wasn’t to be. We should have left at 19:00 for the thirty-five drive to the theatre, leaving plenty time for that drink and to soak up the happy atmosphere before the show started at 20:30. I was ready at 18:45, but my wife was running late, and we didn’t leave until 19:20. Un oh. Not to worry, I thought to myself, we’ll still have half an hour once we arrive before the show starts. Rewinding a little, during the afternoon, I checked our route to the theatre, and where we were going to park. I’d even updated the sat-nav software on my phone – Nokia have recently made the navigation free to use, so I wanted to make sure that if I needed it, it’d be there without me having to panic.

Half way there, and signs start showing on the motorway matrix signs – ‘Slow traffic ahead’, and ‘J28-J26 Delays’. Oh. No. We need to get off at J26. And then we met the tail of the queue midway between J29 and J28. We stopped. And then we didn’t move for the next five minutes. Oh dear. It’s about a quarter to eight.

Never mind, I tell my wife – we can come off at J28 and take the A road to the venue rather than the motorway. I know the road goes in the right direction, but I don’t know it well enough to drive unaided. I pull my phone out of my pocket, and start the sat nav software. I pull the theatre tickets out my pocket and get the street address of the theatre. It calculates the route for me, leaving the motorway at J26. So – and here is my first mistake – I go into the menus, and choose the alternative route option. This, I think calculates a different route for you – the non-obvious route. It now says I need to leave at J28, which is a mile and a half away. Great! Well, as you’ll see in a minute, it wasn’t, but I’m getting ahead of myself here.

First, I had to contend with a surprise. No sooner had we started crawling along the motorway once more, than the sat nav software pops up a message, tellling me that my navigation subscription ran out three months ago. I f I wish to use the navigation feature, I’ll have to resubscribe. What? But is’s free now! I really need the navigation, so I choose the path of least resistance, and dig out my credit card, and pay, whilst crawling along at 5MPH. There. Done. Phew.

We reach J28 at about 20:00. To compound matters, we are still crawling down the slip road too, but that turns out to be because the traffic lights at the end of them are not phased to cope with large numbers of folks leaving the motorway at eight on a Saturday evening. Once we get past the end of the slip road everything is free flowing, except there is a new problem. The sat nav now wants to take me back onto the motorway. No! This is wrong! Panicing a little I tell me wife I’m going to ignore it, because I know the road I need to take, and once we’re on that road, it’ll recalculate and then go the best way. I make it onto the road we need to be on, and true to word, the sat nav recalculates. It says we are 21 minutes away from our destination. No! It’s now five past eight… This really isn’t good. What’s more, I know that I’ve given the theatre address to the sat nav, and we don’t want to go to that road, we want to go to one that is nearby, where there is a large car park. The two roads are not immediately connected to each other. If I follow the sat nav, I will most likely miss the car park and end up at the wrong place, with no time to spare. I am by now hugely anxious. I know the road I need if I am approaching from the motorway, but not the road I need if I am approaching from the road I am on. I don’t even know the name of the road with the car park on.

I tell myself that I just need to push on, and get to the city centre – I can sort it out when we get to the right area. But I am thwarted again…

After a mile or so, I can see that sat nav is going to send me sharp right at a junction half a mile ahead. That isn’t right! The city centre is dead ahead down this road! So I hit the alternative route button again. It tells me to do a u-turn. What! This is crazy! And then the logic in my head kicks in. Alternative route doesn’t mean take the next most direct route, it means take a scenic route – I’m in no hurry. And whats more, the more you select it, the more scenic is seems to get. There doesn’t seem to be an easy way to reset it back to the most direct route, so I tell it to stop navigating, and then I start from scratch and put the address in once more, all whilst driving. Did I mention it was foggy? Well, yes, it was. I was driving along in fog, fiddling with the sat nav, whitst very anxious, and running very late. Not good. But hey – starting from scratch sorted the sat nav – it now took me on the direct route. And what’s more, the arrival time dropped by five minutes. Phew.

It was nearly eight twenty, when we made it to the city centre. By now, we were following signs for the theatre as well as using the sat nav. Then, in the fog, I missed a turn. Damn. The sat nav suggested we turn right ahead to compensate. I did. More theatre signs. Phew. We carried on a bit further, and then, all of a sudden, I saw the car park we were aiming to park in. Completely by chance we had ended up approaching it from the other side. We parked, and, with five minutes until curtain up, we dashed towards the theatre, which happened to also be five minutes away. When we got there I relaxed a little – there were still plenty of folks pouring in through the door to the foyer. Phew! We both needed to pee. My wife looked dismayed at the queue for the ladies – isn’t it always the way – and I made my way to the gents. Imagine my shock to find it full of women! Not just men dressed as women either – actual women trying to evade the queues for their own toilets. I threw caution to the wind and used the urinal despite the giggling women just a few feet behind me (I thank my kids for this – once you’ve had a three year old girl stare at what you are doing a few times, you can probably pee anywhere).

The bell rang, and folks started to disappear. My wife was still in the queue to get in the toilet door. Anxiety still building. Bah. I hunted out my tickets so I knew where they would be. I checked our seat numbers, and then went to find out which door we’d need to go through. I went and bought a program. The foyer was just about empty now, and the stewards were shouting that the performance was starting. Damn!

After what seemed like an eternity, my wife appeared. I dragged her up the stairs, and we found our seats. We’d missed the opening number, but we were there. I sat there glazed, tense and panicy. We’d not had a chance for a drink, but we had at least made it to our seats.

After a minute or two it became clear that the theatre was very noisey. You expect noise in a Rocky Horror showing – that’s all part of it, but it was especially noisey with chit-chat, far noisier that I remembered it being on my first visit. That was distracting – I found it hard to concentrate on the dialog on the stage. People were whooping and cheering and clapping in all the right places, but I wasn’t. It was just all too much, and the anxiety and tension were not helping. Before I knew it, we were all stood up – another Rocky main-stay – and dancing along. I attempted to move myself in time with the music, but failed. Never mind – I knew if I could just relax a bit, I’d be fine.

As the next few minutes passed, I did start to relax a bit, but the woman in the seat in front was annoying me. She was clearly very dunk, and determined to enjoy herself. That’s not a problem, of course, but she was doing things like throwing her head back in her seat, which was banging into my legs. In my already over-stimulated world, this was a huge distraction.

I did calm down a little and start to feel the show flow through me rather than around me. By the time the Timewarp came around for the first time, I was able to make a little bit of an attempt to join in. Not much - partly because even at the best and most relaxed of time I can’t dance well and look uncoordinated, but also because I’d forgotten the actions. However, I was feeling relaxed enough to try it now.

And then the real problem started. Whilst standing and dancing is all an accepted part of the show, we Brits are also unfailingly polite, and show etiquette dictates that once the dancing is finished, you sit down once more so that everyone can see. Everyone just does it. In lots of ways, it is a joy to see – it just happens in a coordinated manner, from the front towards the back, a row at a time.

But the drunken woman in front of me, and her friend in the seat to her left didn’t sit down. How awkward. I could just about see the action on stage in the gap between the two of them, as long as I kept moving about. How annoying. I didn’t feel annoyed though – it just made me feel more tense once more. After a couple of minutes, some of the women in the row behind me started shouting “Sit down!“. The standing women paid no attention. My anxiety was almost coming out of my ears now – I felt like a conduit for the brewing tension – but still I just sat and tried to see through the gap. By now I couldn’t hear the show any more, it had been drowned out by my internal dialogue, which was asking what I should do. I didn’t know what to do, but thankfully, I had the decision made for me. One of the women in the row behind me tapped me on the shoulder and shouted “can you get her attention so we can get her to sit down!”. As is often the case, once told what to do, I had no problem with the execution. I immediately tapped the standing woman on the shoulder , and as she turned, I shouted “Sit down!” at her. So did half a dozen women in at least one row and possibly two or more behind me.

Her reaction? “No! Fuck off!”. Oh, nice. This acted as some sort of catalyst for me. Instead of feeling anxious now, I suddenly felt very angry. So were the women behind me. The whole area behind me in the theatre were now shouting for the woman to sit down. She ignored them. Her friend didn’t though – she sat down. I stood up and right behind her shouted, with very obvious rage, words to the effect of, “Look – sit down! No one else is standing up! No one behind you can see! We’ve all paid to see the show! Let us see it! SIT DOWN!”. “No! Why the fuck should I?”, she said. The barrage from behind continued, and by now this had been going on for quite a while. Her friends were now asking her to sit down, and she was saying no to them too. Eventually, though, with repeated suggestions from her friends, she did sit down. She then spent the next five minutes talking loudly with her friends, in such a way that I was meant to hear, how pathetic and dumb I was being for asking her to sit down. This typical bullying behaviour has a devastating affect on me at the best of times, but in my current state is was crippling.

Literally crippling. I realised I was grasping both arm rests on the chair. I was stuck fast and tense in my seat. I could barely hear the performance, and I was hugely anxious once more. I was experiencing my strange anxious guilt that happens in situations like this. I know I’m not to blame for this situation, but my body tells me otherwise. The only thing being taken in by my senses were the actions of that woman. Fuelled by alcohol she was bullish, arrogant and aggressive, oh and completely irrational.

When the next stand-up section of the show happened, I didn’t stand immediately. Neither did many around me. Neither did the woman in front of me. She turned to her friends and said clearly, loudly, and with considerable sarcasm that she couldn’t possibly stand up, as it would block the view of those behind. Enraged, I tapped her on the shoulder and said “Look! You can stand up now – no one will mind, BECAUSE LOTS OF OTHER PEOPLE ARE STANDING UP TOO! Just PLEASE sit down when everyone else does, then everyone can see the show they have paid to see!”. She didn’t – she stayed sat down, as if to make a point.

After a couple of minutes she turned round to me and asked what my problem was. She asked why I needed to shout at her, with the confidence of someone who knows she is in the right. Why was I spoiling her show? You know what? I was doing it all because I was selfish. That’s what she said. From her point of view, I was the only person who had a problem with her actions, and it was me being selfish. Shying away from a further confrontation, I shook my head, sighed, and took the fortunate opportunity to stand up and dance that had just presented itself in the show. I didn’t dance of course, I just stood there glazed and anxious, but it did get her out of my face.

She appeared to calm down a bit after this, but spent most of the rest of the first half of the show chatting with her friends, or sulking in her seat when other stood – the sort of behaviour I would expect from my three year old daughter after a telling off. Remarkably, for someone so keen to stand up, she was spending very little time actually watching the show. She did, however leave me alone. The first half of the show went on for another twenty minutes or so, but when I left for the interval I was still very tense, and not really enjoying myself. I chatted a little about it with my wife, over a drink. The drink helped – it took the edge off things. My wife hadn’t heard what had been said between the woman and me, and she said she was glad she hadn’t – she’d said she’d probably have ended up hitting her if she had, and my wife is not a violent woman.

We took advantage of an empty seat to the right of us for the second half of the performance, which meant that I didn’t have to sit behind the drunken woman. Instead, she had an empty seat behind her. She rolled in five minutes late for the second half, and when her friends arrived back five minutes after that, she refused to stand up, which meant her friends took some time getting past her to their seats, leading to extended blocked views for use and others behind. All of this, I am sure was done deliberately and for effect.

But finally, I was able to relax and get into the show. By the end, at the final reprise of Timewarp, I was able to join in and do all the actions without feeling tense or that I was doing it wrong.

It wasn’t the end of the story for the drunken woman though – she decided that she would stand once more, and at various times during the second half of the performance, she once more decided not to sit down when others did, to more angry choruses of “SIT DOWN!” from behind and drunken “NO! FUCK OFF!” responses from her. I was very glad to be out of the firing line.

All in all, it was a very stenuous night for me. The late arrival, the missing of the start of the show, the altercation with an aggressive drunk, and the general loudness of all of it had all taken a large toll on me.

Sunday was filled with a mix of emotions. Flash-backs to the aggression, and to the delayed journey. You’ve seen from my writing here that I remember it all in huge detail. Well, perhaps I’ve needed to write about it here to get it out of my system a bit – to stop that huge detail from playing and replaying in my head time after time.

Did I enjoy it? Well in some ways, yes I did. I like the Rocky Horror Show. I like the music, and I like the themes. It’s fun – even if you are an Aspie. But what was always going to be a difficult night for me was ruined by a stressful journey and the effects of alcohol on someone else. I’m still paying the price today, and that’s no fun.

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The Timewarp

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Ring-Ring. One…

You don’t like calling people on the phone, and have just spent ages trying to pre-play the conversation in your head.

Ring-Ring. Two…

Anxiety is sloshing around.

Ring-Ring. Three…

It’s ok, people rarely pick up on three rings, unless they are sitting by the phone.

Ring-Ring. Four…

Ok, I admit it. I count the rings before people pick up the phone.

Ring-Ring. Five…

It’s partly to do with knowing when to put the phone down when the phone isn’t being answered.

Ring-Ring. Six…

It’s also to do with my love of patterns. I find myself counting involuntarily these days.

Ring-Ring. Seven…

Come on – where are they?

Ring-Ring. Eight…

Hmmm… Maybe they aren’t there. But eight rings isn’t all that long. (It’s actually around 24 seconds…)

Ring-Ring. Nine…

I can visualise them running towards the phone now.

Ring-Ring. Ten…

Pick it up! Oh no. They didn’t. Maybe they weren’t running after all…

Ring-Ring. Eleven…

Maybe this time! Oh – no.

Ring-Ring. Twelve.

Handset  down.

I don’t know why I picked twelve rings to be the cut off point if I’m honest. If I really think about it, most people have picked up by half a dozen rings if they are there. But twelve it is, most of the time. If I’m phoning a utility or some other sort of service I’ll hold on for longer. But with people, I count to twelve and then put the handset down.

Do any of you have a hidden and slightly odd use of patterns like this one? I’d love to hear about it!

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One, two, three, four…

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–

Imagine if you will, a hypothetical mother. She has an autistic son. She believes that her son was developing normally, but that sometime around the time of his early childhood injections, he started to regress with the signs of autism. She associates the two things, and now absolutely believes that the injections caused her son’s autism. This mother cares deeply for her son, and would do just about anything to reverse that regression, turning him into a normal child once more.

Her son is now seven, and has been receiving an array of treatments, including chelation and the use of a hyperbaric chamber over the last five years. The mother sees some signs of treatments working every now and then, but her son is clearly still autistic. She has learned not to trust mainstream Doctors, after all, they believe in the shots that gave her son this condition. Instead, she is more inclined to believe unconventional specialist Doctors who have brought their own treatments and potions onto the market, with very encouraging results promised by them. To hell with the cost – if it helps her son, it is worth every penny.

Now, this really isn’t meant to represent anyone in particular. It is just meant to give something of a picture of a mother who is prepared to go to any length to reverse a condition that she perceives her son has developed rather than inherited. If you are reading this, and think I’m talking about you, then I’m not, I assure you. I’ve just created a stereotype based on what I’ve read. It may well be an inaccurate stereotype, but I’m sure there are some parents out there who the above fits very well.

–

I don’t identify at all with what the above mother holds to be true.

I see autism as an inherited condition. I’m sure that the environment in which you grow up has a bearing too, but fundamentally, I believe that neurological differences are the causes of most of the differences in being that I experience compared to a typical person. I don’t believe that autism can be cured. The brain scans showing atypical brain activity that I’ve read about are one good reason why I believe this. The other, of course is that once again, I believe this is inherited, not acquired – and if it isn’t acquired, it can’t be reversed.

But do you know what?

I really think that our hypothetical mother and me actually have a lot in common.

Firstly, there is a small matter of relentlessness. Our mother will do anything to reverse what happened to her son. To this end, she has spend a huge amount of time researching anything she can find in book form or on the Internet that may offer a hope – no matter how small – of her son improving. Whilst the scenario is different, I know this trait well. It’s the one I indulge in my Special Interests. Let’s take Asperger’s as an example. In the last year, I’ve read and read and read about Asperger’s, until information is spilling out of my ears. I want so much to know and understand how I work, that I’ll spend long hours reading obscure texts to decide whether they apply to me. Along the way I have become very knowledgeable about the information I’ve read, and can talk at length about it. So can our mother. But there’s somethign that we’ve both missed here. Context.

I usually refer to this as seeing intricate detail, but missing the bigger picture. I do this a lot. I can talk at length about how Asperger’s impacts people, but I fail to see how it impacts my wife, and what more I might do to help her, or indeed what I might do to help myself for that matter. None of this often gets a look in. Instead, I continue to fill myself with information about my Special Interest. Our hypothetical mother clearly has a similar problem. She’ll spend hours reading about an obscure new procedure that is largely untested but might just help revert the damage to her son, but she’ll fail to see the well respected reports like this, that show that autism isn’t an epidemic, and that in fact there are just as many autistic adults (albeit many of them undiagnosed) as there are children.

In short, we both see very specific things about autism, but fail to see the bigger picture at times.

We both see intricacy of detail in things too. She sees how a new treatment has lead to a little more eye contact or more words from her son over the last week. I see how I’m a little more anxious this week, after writing about certain topics.

But maybe here we are both missing the bigger picture again. Hypothetical mother is failing to take in how even autistic children develop over time – it is just often delayed or a slower progression than with a typical child. I’m probably reading too much into my anxiety levels too.

We are quite similar, in many ways. But why?

Well, it occurs to me that when children get diagnosed on the autism spectrum these days, it is not uncommon for one or more of their parents or for other family members to start their own journey of autistic self-discovery. Unless of course you are hypothetical mum, because she knows her son was damaged by injections, he didn’t inherit the condition.

But what if he did inherit it? What if he inherited it from his mum?

Maybe we are not so different…

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Maybe we are not so different…

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In a blog article I wrote a week or so ago, I lamented about how few hits the blog was getting. I felt that over the last nine months or so I had grown into a confident blogger, and now I wanted my words to be read by more people. To try and put this into practice, I restarted my AS twitter account, and also started commenting on more blogs – some of which have been on my feed reader for a while, others of which were new to me.

Commenting on other people’s blogs is something that I started out doing, but which I have become more and more tardy with in recent months. Those blogs that I have tended to comment on over time are from folks who present to the world in broadly the same way as me, and whose blogs also have a distinctly this is what it is like for me tone to them. This type of blog, of course, is only a subset of the autism-related blogs out there on the Internet. Many others take a news-like approach or advocate autism, some rather militantly. Perhaps, it turns out, there is a reason why I’ve steered away from these sites.

Left Brain Right Brain describes itself as an autism blog. It presents itself as an autism news and comment site, often digging out little-seen articles and research from elsewhere on the Internet. I’ve been following it for a while, occasionally dipping into some articles in more depth. The articles are usually well written and thought provoking. In short, I rather like it.

So when, on Wednesday last week, a new article entitled Truth and Consequences – The Anti-Vaccination Movement Exacts a Price appeared, I was intrigued enough to read. What I read made me squirm, and feel very sorry for the mother and child that the article was about. With my newly made decision to comment more in the autism community, I set about replying. You can see what I wrote about six or so comments down. It is very me.

Perhaps I should have paid more attention to most of the comments above mine before I did so, as it turns out that they very much set the tone of what would happen to the thread of comments on the article.

As it happens, I didn’t check in again until the next morning. Suddenly there were a total of 198 comments. Goodness! I wasn’t expecting that. I started to read them, and found myself getting more and more drawn into the arguments and counter arguments that were being made. You see, the comment thread had got hijacked by two very different sorts of autism activists – those that feel that autism is a problem caused by vaccines and who also think that a regime of often questionable drugs and therapies (often referred to as biomed) can cure it; and those who think that the curebies are deluded, stupid and damaging their kids.

As I read, I felt my head swimming, and panic rising in me, but I couldn’t quite put a finger on why. When I reached the end, I wrote another comment saying how sad I felt about it all, but it didn’t hit the mark with me, or, frankly, with those commenters from both camps who were foaming at the mouth about each other. I felt awful – very down and agitated, and the feeling lasted for several days. My wife questioned what my problem was, and I explained about the article and its comments. She read it all herself and didn’t understand why I was so down about it – after all, the negativity wasn’t aimed at me. I didn’t understand it either, but it really had affected me badly.

It has taken a few days of contemplation to get over the feelings the comments stirred in me, and to really understand why this lively debate had such a debilitating effect. In the end, I’ve realised that this is interwoven with some things that I’ve written about before.

If you can tell me a good story, make it sound plausible, and put passion into it, then I will believe it. Let me see both sides of an argument, and I will empathise with both, and will end up sitting on the fence as I can’t determine which I agree with more.

You may call it naivety, or gullibility, and maybe it is. Whatever it is, it is an intrinsic part of me, and I can’t escape it. Apply this to the comment war in the LBRB article, and maybe you can start to see my problem.

Much of the time, I would read a comment from one camp, and think that it made sense. I’d then read a rebuttal from the other camp, and see how that too made sense, and overrode the original comment.  After a great many – no – a huge number of rounds of this, I was left feeling thoroughly perplexed. Everything and nothing made sense any more, and I felt completely panicked by it.

I come from a science background, so you’d think I’d plump for the side that were denouncing those who tried to cure their children of autism, wouldn’t you? Well clearly, my natural leanings are in this direction – I don’t think autism is caused by vaccines, or via an overloaded immune system. I don’t believe that you can cure autism either – I think it is a genetic difference.

However, faced with a mother who has an autistic child with some other medical symptoms that I coincidentally also have – such as a frequently bloated stomach, or frequent fungal infections – and I can’t help but take notice. When she talks about these being part of her son’s autism, and various biomedical treatments that have improved these conditions in her son, I start to get drawn in, and wonder if she might just be right. She is telling a good story. As usual, I see the minutae of the detail she talks about, and completely miss the bigger picture. So what if her son’s bloated stomach is better – who, other than she, actually said that a bloated stomach was a sign of autism…? If only I could have seen that kind of issue at the time – but I didn’t.

The comments completely overloaded me, and left me confused as to which was was up and which way down as regards autism. I could see how everything that everyone on both sides of the argument was saying made sense. And yet I knew that wasn’t – couldn’t be – right. I felt completely lost – like I no-longer understood myself or my place in the world. All from a couple of hundred comments arguing with each other.

So now I can see why I’ve been steering a wide berth from the advocacy sites over this last year. It isn’t the arguing that’s the problem, it’s my ability to see everyone’s point of view as being equally valid, and to then miss the bigger picture that tells me where I really should place my allegiances. I’m just no good at that side of things, and falling into the trap breeds fear and anxiety in me.

I am going to keep opening up this blog, just as I intended to do a week ago, but I’ve decided not to jump in and comment on any more advocacy blogs for the time being. Besides, I have enough on my plate just writing here, replying to comments, and commenting on a few other blogs.

Do you experience any issues such as this? I’d love to hear from you if you do.

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Sitting on the advocacy fence

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I was concerned as to whether a GPs referral was strictly necessary, so in addition to giving a short(ish) background about myself, I stated my concerns and asked I what needed to do to get the ball rolling. As I was emailing a generic address at the clinic, I didn’t get my hopes up of a quick reply, but to my immense surprise some forty minutes later, a reply was sitting in my email inbox, not from the clinic administrator, but from the good professor himself.

A GP referral was necessary, and perhaps for the first time, I appreciated why. A diagnosis doesn’t necessarily come unaccompanied. There may be recommendations for further treatments to feed back to my doctor following the assessment.

So, after lunch, I phoned my GPs surgery and asked for an appointment. Here, things didn’t go to plan. My usual GP, it seems, has retired. Oh. Thinking on my feet, I realised it just meant that I’d need to explain a little bit more history. An appointment was offered, with a woman doctor that I’ve not met before. For the next morning. I wasn’t expecting that – next day appointments are usually like gold dust, and a wait of several business days is not at all uncommon. I was a bit phased by this, and accepted the morning slot. I booked a double appointment, just to be sure that I’d have time to explain myself, without feeling rushed.

It was only after I was off the phone that it hit me that I was going to go and ask for a diagnosis the following morning. All of a sudden I was filled with doubt and thoughts of cancelling – after all, I wouldn’t have the time to prepare what I was going to say, and to print out supporting documentation. My wife came to the rescue. She told me that I didn’t need any supporting notes and that I knew what I was talking about. I’d be fine. I knew she was right. It’s how I tend to approach job interviews – I don’t prepare as fully as I might, instead relying on an ability to pull the knowledge I need out of my head when asked.

I slept well. Amazingly.

This morning, as the minutes passed, I grew more and more nervous and anxious. My mind was full of questions and of trying out answers. I made it to the surgery ten minutes early and then sat and tried to calm myself. I remembered the seven-eleven breathing technique I’d been taught when I went for counselling to help my anxiety. It didn’t feel to be helping at the time, but I’m sure it did in reality.

Whilst I was waiting, the doctor appeared in the waiting room, and grumpily called someone. Uh oh. That didn’t sound good. I tried to calm myself with the observation that the doctor had rung her intercom bell to alert the receptionist that she should send in the next patient, but that the receptionist hadn’t responded. Just maybe that was why the doctor was grumpy – she’d had to come and find her next patient herself.

All of a sudden it was my turn. I wandered dazed down the corridor containing the consulting rooms, and at first I couldn’t find the right room. It turns out that they are numbered in a strange order, and after a short false start I found the door I was looking for.

The next twenty minutes passed in something of a blur.

In short, the doctor was sympathetic and listened carefully both to my concerns and to the descriptions I gave of some of the ways in which AS affects me. After about fifteen minutes, she made it clear she wa happy to refer me for a diagnosis, but at this point she stumbled at little. She realised that she had no idea where she could refer me to. This was my cue to chip in and say that I’d found a clinic in Sheffield, which went down well. She then wondered out loud if the clinicians did NHS work, and explained that they could put a case forward for me to be seen on the NHS out of area, if the clinic or those working there undertook NHS work. I explained that I was fully prepared to meet the cost of the consultation privately, and thus the NHS and special cases wouldn’t be needed – so long as she was happy to do the referral. She agreed – she’d write to the clinic to refer me early next week.

I let out a very audible sigh of relief, and felt close to tears. The doctor smiled.

I realised that in many ways I’d been working towards this moment for a year. If you count the time I spent understanding my anxiety then the road to here has been more like two years.  To be sitting with a doctor who has just said that she understands how Asperger’s affects me and is happy to refer me to get a formal diagnosis was just wonderful.

–

This, of course isn’t the end of the story, by any means. It is the start of a new chapter.

Assuming the diagnosis goes the way I expect, there will be a whole new set of realities and challenges for me to face. The doctor mentioned the possibility of more counselling, perhaps as a couple with my wife, and maybe to help with my parenting skills too. There will also be that small matter of having a disability on my medical record to face up to and deal with, and the devising of strategies of when and if I need to let people know.

Of course there is still that tiny little doubt in the back of my mind that the diagnosis will not return what I’m expecting. That too would take time to re-adjust from. I’d be fibbing if I said that it didn’t worry me just a little.

Overall though, I’m feeling very positive about the whole experience and about what the future holds. A large part of this huge weight I’ve been carrying feels to have gone.

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A new chapter

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Is this true? The books are almost invariably written by people without autism, so why would they be such a great expert on this?

I’m a little troubled, and I’m going through a round of self-questioning on the topic.

Should I get a formal diagnosis? Should I go and see my GP and try to obtain a diagnosis that way, or should I see someone privately? What would a diagnosis mean for my work? Would it change my relationship with my employer? Would it change the relationship with my wife? How about with other people I know? If any of my relationships were changed by a diagnosis would that be a force for good or not?

There are a lot of questions that the books don’t answer. Indeed, the AS books I’ve read don’t really tackle questions like the above much at all, which is a shame because ultimately those of us wondering about diagnosis need to know the answers to questions like these in order to make a rational decision.

What do I think?

My thoughts all boil down to one statement, which makes it difficult for me to choose a path forward:

Autism is poorly understood in the UK.

Various articles I’ve read on the Internet over the course of the last year (sorry, no specific references for you) suggest that getting a diagnosis here in the UK via the NHS (National Health Service) and your GP (family doctor) isn’t easy. I’ve read of people being told not to be so ridiculous or being asked why on earth they would want to get diagnosed in the first place. This really does highlight just how far behind some other countries the general level of understanding surrounding the Autism Spectrum is here in the UK. If some GPs believe that you can’t possibly have Asperger’s simply because you managed to turn up at their surgery and ask for a diagnosis, then we have a very long way to go on the education front.

If I choose the NHS route, then I have to go to my GP’s surgery extremely well armed, and prepared for a fight. I also need to consider whether a formal NHS diagnosis would serve me best. If I choose the NHS route, then my permanent health record will forever more state that I have Asperger’s. I will be formally classed as disabled in the eyes of the state, and I will have to mention the condition when I go for new jobs, or apply for insurance. I’d even have to notify the DVLA (driver’s registration agency) about it.

Ah yes – jobs. If some doctors seem to have a lack of understanding of Asperger’s, how can I expect employers to view a diagnosis?

For reasons that I can’t really go into, telling my current employer could potentially lose me my job. It probably wouldn’t, mind you, but I wouldn’t be surprised if it led to me being told not to report for work, followed by a battery of tests before a decision was made as to whether I could return to work or not. This may sound draconian, but my current job requires a considerable amount of vetting (with good reason) for everyone that does it. I’ve already had to have my depression in recent years considered, with a statement collected from my family doctor to support my case.

Here in the UK we have laws that intend to prevent job discrimination against people with disabilities. This is a good thing, and I’m sure it has led to a great many people with disabilities getting more fulfilling jobs. But there are, of course ways around laws like this. Consider this:

After a series of interviews, a company narrows down potential job applicants to two. Both interviewed well, and both could do the job well. The employer knows that one of them has Asperger’s, and having read up on the condition, understands that it affects the applicant in a number of ways, including their ability to interact with colleagues and sometimes their ability to produce work under stress. Would you blame the employer for not choosing the candidate with Asperger’s? I wouldn’t. The employer would be well within their rights to take the candidate without Asperger’s, despite employment laws. If the Asperger’s candidate was clearly the best for the role, well that’s a different and tricky matter…

I could, of course decide not to tell any potential new employer that I have a disability. My Asperger’s brain can see the attraction of this, but doesn’t like it one bit. Not telling would be fibbing, and that ultimately gets you into trouble, doesn’t it? In my view, any employer of mine has a legitimate right to know about any illness or other condition that might adversely impact my work. That’s fair. Not telling them really does feel like starting off the working relationship on completely the wrong foot.

Interestingly, my current state of knowing but not having a formal diagnosis sits a lot easier on my shoulders. I don’t feel like I have to tell anyone – like in some way not having a formal diagnosis means that I don’t have the condition. Except of course that I know beyond all reasonable doubt that I do have AS – I’m just missing the piece of paper from someone qualified to make a judgement to confirm it. The hypocrite in me makes an appearance once more.

If an NHS-funded diagnosis would lead to a formal record of disability and a responsibility to tell employers, what would happen if I went for a private diagnosis?

I’d get a piece of paper telling me what I already knew. What I then did with this piece of paper would be completely up to me. I wouldn’t have to tell my GP about it, and hence it wouldn’t have to go on my health record. Would I need to tell my employer? A difficult question, and one that I’m not sure I have a good answer for right now.

My wife’s view regarding my AS and diagnosis is one of worry. Over the last year we have talked about AS and what it means for me (and us) a fair bit. As my understanding of how it affects me has improved, so in time has hers. Being the partner of someone with AS must be difficult. It must be hard to conceive how the person can appear on the surface to be so normal, yet inside they are quite different.

My wife worries that my pursuit – with or without formal diagnosis – of AS will lead me to ‘giving up’. What she means by this is that she worries that I’ll stop acting ‘normal’ – that in some way learning about AS will change my ability to interact with the world. This feels very alien and illogical to me, yet I’ve read very similar accounts of these worries elsewhere, so I take it to be a quite normal neurotypical point of view.

I think, perhaps, that my wife is starting to see just how much of my presentation to the world is an act. Will I stop acting just because I now understand that it is an act? No. Will there be times that I choose not to act to the degree that I have done in the past? Perhaps – and I don’t see that as a negative thing. Learning about and embracing AS is teaching me that it is OK to be who I really am. I don’t have to act like someone that I’m not if I don’t want to – and yes, that is most likely the sort of phrase that scares my wife. But you know what? I do still want to interact with the world, and so I still act. If I didn’t put on my act, I’d have trouble interacting with anyone other than those that know me very well. I’d also have to spend an inordinate amount of time explaining to everyone I met that I was unusual because I had AS, and that no, it was nothing for them to be worried about. I don’t want to live my life like that, so whilst I may choose on occasion to drop my act and just be me, that will be the exception, rather than the norm.

If I’m not going to drop my act around people I know, would I need to tell them I was formally diagnosed with Asperger’s? Perhaps not. Would I feel uncomfortable if they didn’t know? Maybe yes. As I wrote above, though, telling people may be a lot of work for very little gain, and I’m not sure I want to entertain that.

Would I like people to know? Yes. And no.

I would dearly love people to understand that I was autistic and to make little allowances here and there for me to make my life easier. I’d love to be in a position where I could act a little less around people other than those closest to me. I fear the reality of that situation is a long way off. People in the UK simply don’t understand autism right now, and are often naturally suspicious of a condition that they can’t immediately see. I suspect that opening up to people would cause me considerable pain due to unexpected and sometimes negative reactions.

So where does this leave me? Without a definitive answer as to whether a diagnosis is a good idea or not.

A formal NHS diagnosis would buy me some peace with the world, but it wouldn’t make the world treat me any better. Indeed, it could potentially cost me my job, and make it more difficult for me to get a new one. It could cause alienation with people that don’t understand autism or who can’t buy into a condition that they can’t immediately see. Would the less-formal private diagnosis buy me as much peace but without the other side effects? I doubt it.

Yet there is something about obtaining a formal diagnosis that is about negotiating peace with the world. I’ve not fitted in thus far in life, but now I know why. Getting a piece of paper with that diagnosis on may be me formally saying that I accept that I know why I have never fitted in. Obtaining that peace holds a huge amount of attraction to me.

It feels like there is no middle ground here – either you go the whole distance, getting formally diagnosed, being open with everyone about it and accepting the consequences of that, or you don’t pursue diagnosis at all.

It feels like I’m being urged to jump off a cliff on the understanding that I’ll be able to fly. I want so very much to be able to fly that I almost believe what I’m being told.

I want so much to go to my GP and ask him for a formal diagnosis.

But I haven’t made an appointment.

Maybe that says it all.

I would love to hear your thoughts on this tricky subject.

Post from: That Explains Everything

That Explains Everything is licensed under a Creative Commons Attribution-Non-Commercial 2.0 UK: England & Wales License.

Diagnosis

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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?

Post from: That Explains Everything

That Explains Everything is licensed under a Creative Commons Attribution-Non-Commercial 2.0 UK: England & Wales License.

Is this what we’re all living for today?

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