The Timewarp

I’ve been left with a familiar feeling. So much so, that I nearly entitled this piece Groundhog Day. But to call it that that would just be showing another of my traits – the one where I present my own interpretation of things as fact, without having all the information needed. Passing off BS as fact in a confident way. To be clear, Saturday wasn’t a day I’d had before. The feelings I felt were very familiar, however.

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.

One, two, three, four…

You know how it goes:

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!

Maybe we are not so different…

This, in a sense, is a follow up to the article I wrote earlier about my experience with dipping into autism advocacy. If you haven’t already done so, it would make sense for you to read that article first.

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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.
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Sitting on the advocacy fence

I got a shock last week, and it has made me realise that I have been subconsciously keeping quite a tight control over what I read and how I publicise my blog.

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.
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A new chapter

Yesterday morning, I emailed the information email address of a private counselling clinic in Sheffield, near to where I live. The clinic offer a Developmental Disorder Assessment for those who suspect they have an Autism Spectrum Disorder. The man behind both the clinic and  assessment is a very well respected psychotherapist and professor, which ultimately helped give me the confidence to write.

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.

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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.

Diagnosis

Books make a big thing about getting diagnosed. If you believe what you read, then getting a diagnosis for an Autism Spectrum Disorder is a very important and positive step.

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.

Is this what we’re all living for today?

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?

Waiting for, well, something that never comes

The last few days have been somewhat plagued by this feeling. I’m anxiously waiting for something that never arrives.

What is it that I’m waiting for? Well over the last few days, it’s been a number of things.

Calls to third-parties at work result in “I’ll call you back”. I then sit there waiting for the call back. Someone emails me asking a question. It looks urgent. I respond immediately, but ask a question of my own for clarification on some point. I then sit and wait for a response, which never comes. I check the stats on my blog. Then I check them again. Then again. Then again. Have they gone up from the last time I checked?

These are all manifestations of the same sort of issue. I’m expecting some sort of immediate response, based on criteria that I’ve set myself. I then sit there anxiously waiting for the response to arrive, unable to do anything else in the mean time, in case I then miss the response.

Part of this is a logic problem, I think. When someone says, “I’ll get someone on that right away – they’ll give you a call”, I take it to mean that some one will be calling me imminently. I don’t want to miss the call, so I sit there waiting for the call. Doing nothing.

Part of it is also that I can’t really hold much info from a variety of jobs in my head at the same time. If I persuade myself that I’m not going to be getting the phone call any time soon and then go and work on some other task, chances are that when the person does call me back, I’ll find it difficult to switch back to that original task. I find that awkward and embarrassing, so I try and avoid it.

The website stats issue I mentioned may look like something different, but I don’t think it is. When I find myself repetitively looking at the stats, it’s like I’m waiting for something. I don’t know what. But those familiar feelings of anxiety and of having to concentrate on nothing else are there in spades. Perhaps knowing that people are reading that I’ve written makes me feel like they are communicating with me in some way – a little like the guy eventually calling me back at work.

What I really need, of course is to shift the anxiety. None of the above are anything like this much of a problem with my anxiety levels are lower.

Do any of you have any anxiety busting tips?

Update: It’s a few hours now since I published, and non of you have been visiting to push my stats up! Have you any idea how badly that affects my anxiety?!?

…and for the avoidance of doubt, that was a joke.

Not such a great social engagement

You might have spotted that I’ve not been too up-beat of late. In the middle of last week, right in the middle of feeling not-so-great, I had to attend a social function that I’d accepted before I started to feel that way.

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.

Better to know?

If you’ve been reading this blog for a while, you’ll know that I discovered my Asperger’s  in the autumn of 2008, when I was thirty five years old.

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?