Fallout

I’m continuing to experience fallout from my stressful evening at the theatre last weekend.

The flashbacks and replays of the events have stopped, thank goodness, but the evening has served to heighten my background levels of stress and anxiety considerably, and these have yet to abate.

Whilst not causing a downward spiral by any means, the increase in anxiety has had a very noticeable affect on my ability to function in every day life. Since Saturday night there have been many examples of this – here are a few:

On Sunday, I was a bag of nerves, and had a very short temper. In the early evening my daughter pestered to play a game. I felt over stimulated, and disinterested. We all played as a family, but luck wasn’t on my side. I helped my three year old daughter with the game, and she ended up doing twice as well as I did. Finishing last was just the way things turned out and had little to do with skill, but it made me feel lousy and even more grumpy.

On Monday, I got very little done at work. I wrote my previous article here to try and clear my brain out, but my stress and anxiety were terrible regardless. I found it very difficult to concentrate on what I needed to do, and spent much of the time just browsing the Internet. I simply didn’t feel capable of working.

My daughter has a cold. She was coughing in the night last night and up several times. My wife got up to deal with her first, but I got the nudge in the ribs the second time. Instead of being gentle and sympathetic, I was enraged. I stomped about, and in no uncertain words told my three year old daughter that it was the middle of the night, and that we should all be asleep. “I’ve got a runny nose”, she answered unhelpfully. I stomped around until I found a box of tissues, and then grumpily wiped her nose and almost menacingly told her to go back to sleep. Not a great example of good parenting.

It got worse this morning, when my wife pronounced that our daughter wouldn’t be in nursery today, because of her cold. Our daughter is only in nursery part time, and this gives my wife two days during the week where she can make appointments and get things done. “You’ll have to work from home”, my wife told me ten minutes before I was due to leave for work, “because I have an appointment I can’t cancel this morning”. Nooooooo! This sort of derailment to my schedule sits very badly with me. Not only do I want to ignore the change in plan and push on with what I was supposed to be doing, but in situations like this, I always feel guilt – like I’m letting work down by not being able to make it into the office. Add in the fact that since Christmas I’ve spent a lot of time working from home due to poor weather conditions, and my increased background anxiety too, and it meant that the prospect of working from home felt truly awful. What would I say to my boss? I worked from home two days last week due to ice on the roads (everyone else made it in), and I left an hour early last Friday because my wife was ill. I really did not want to face the prospect of explaining this one.

The crazy thing is that I know my boss will be fine with it, and I know that my many recent days absent from the office have been due to the weather which is out of my hands. I even said this to my wife, as I sat with a sulky face trying to persuade myself that working form home would be fine. She didn’t look impressed.

What happened next just made everything worse. My wife’s decision not to send our daughter to nursery was made whilst my daughter was still asleep. She woke up just before it was time for my son to go to school. She was fine! Change of plan again. I stayed at home with my daughter whilst my wife took our son to school, and then I left for work. And herein lies the next source of stress. I leave early for work – arriving around 8am usually, so that I can get a parking space. I know from experience that if I arrive after 9am, I am unlikely to get a space. This then means struggling to find a space somewhere else that doesn’t cost me £7.50 for the day. This in another of those situations that makes me anxious at the best of times. I took a deep breath and resigned myself to pay the huge fee for the car park that always has spaces. At least I had coins in the car with which to pay.

As it turns out, even at 9.30am, I managed to find a space in my usual car park today. Well, it’s not really a proper space, but spaces aren’t marked in this car park, and as long as you don’t block anyone in, it’s fair game.

So here I am at work once more, and still struggling to get going. I know that eventually my stress and anxiety levels will go down, but I have no idea really how to help that along or even how long it might take to feel better. You see, this sort of background stress is pretty common with me, but I’ve never really paid attention to it in the past – I’ve just assumed it is normal, and there is nothing I can do about it.

Do you have any suggestions for things I can try to help reduce my background anxiety levels?

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.

Awareness

It’s been a while, hasn’t it?

My new job is going well – very well. That is the biggest reason that I’ve not been writing here.

It’s not that I couldn’t find the time to write, it’s a little more subtle than that. My new job has become my current special interest, and has taken on all the properties that that title bestows on it. Focus – that’s the main thing. By focus, I don’t mean that I’m getting lots done. I don’t mean that I’m obsessing about work when I get home either. Both of those attributes are what I would associate with a regular person who was committed to their job.

When my job becomes my special interest, something a little different than the above happens. Whilst at work, I am supremely focussed. Focussed on whatever it is that I’m doing at the time. I may have a to do list the length of my arm – indeed this is often the case, but I’ll struggle to get half of it done, despite working really hard. This isn’t due to a lack of productivity, in fact it’s quite the opposite. I complete the task I’m working on very thoroughly, and with great attention to detail, at the cost of the other tasks that need doing.

I won’t realise that I’m doing this whilst it is happening. To echo one of the great AS cliches, I lose track of time, and suddenly find myself near the end of the working day, aghast that I’ve not tackled several of the high priority items that I put on my list that morning. I will have had a blast of a day however, getting lost in the intricacies of some problem, and quite often bathing in the satisfaction associated with having nailed whatever the problem was.

It’s not just my other work tasks that get neglected, I’ll often have a few bits of personal logistics on my daily list – paying bills, finding a little something for my wife, that sort of thing – and much of the time I’ll not have tackled these either. I find this very frustrating, and over the years, no matter how I’ve tried to structure my day to allow me to complete more tasks, I’ve invariably slid back to a position where items get missed for the above reasons. I find that with great effort I can carry off some sort of structure that forces the execution of my list for a short time only. Invariably the effort required to make it work is just too great. I am not blessed with much of an ability to structure my life in a way that gets important tasks done in a reliable way. Call it executive dysfunction if you like.

At the end of the working day I drive home, and for the most part leave my work thoughts behind in the office. That’s great, but unfortunately I don’t get to enjoy my evenings in the sort of productive way that I note many of my peers do. There’s the initial feeling of exhaustion that I’ve written about before. That hour or so of feeling dazed and looking glazed that I put to down to too much sensory input at work and the forty five minute drive home. Once that’s worn off and the daily chores are done, I’m fit for nothing. I feel tired despite getting eight hours of sleep most nights, and find it difficult to bring myself to do anything productive.

But do you know what?

The above frustrations now also feel normal and comfortable. Whilst I have lived with the above challenges my whole life, it’s only really in the last year that I’ve become properly aware of them, and have had any kind of idea as to why they exist. My awareness has brought an acceptance of who I am. That’s incredibly powerful and empowering too. I’m never going to be all that good at getting a bunch of tasks done in a given day. By accepting that, I’ve removed the need to compare myself to those who don’t have AS. I no longer have to beat myself up for not managing to work in the way that I see many of my peers do.

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!

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.

–

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.

You walk funny

It’s often said – indeed I’m sure even I’ve said it more than once – that Asperger’s is a hidden condition. What is meant by this, of course is that you can’t tell that someone has it simply by looking at them.

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

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

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

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

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

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

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

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

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

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

Having no-one to turn to

One of the biggest ways in which Asperger’s shows itself with me is my lack of friends. This has always been a problem for me, and I’ve spent most of my life in a situation where I’ve had either one or two good friends, or at times none. Over the years, I’ve come to terms with much of the loneliness that this brings me, but I would still dearly love to be able to hold onto good uncomplicated friendships – something that I find very difficult to do.

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

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

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

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

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

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

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

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

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.

A hangover without alcohol

Yes really.

I woke up on Monday morning, and felt terrible. My head pounded, my view of the world felt hazy and I had pain in my kidneys. I felt decidedly hungover. I cursed myself for drinking on what had been a rare night of being on my own.

And then it dawned on me. I hadn’t been drinking. No alcohol whatsoever. I was confused…

I’ve spent some time thinking about this over the course of the week, and I wonder if I’ve figured out what was going on.

I had an odd weekend. It was a mixture of very high stress, too much sensory input and very quiet evenings of solitude. My sister in law gave birth to her first child – a healthy boy – on Friday, and my wife played the part of dutiful auntie and went to see them on Saturday morning. This left me with our two kids from then until Monday evening.

Saturday went well. I’d managed to plan it a bit, and everything slotted together nicely, albeit with high stress on my part. On Saturday evening, I drank a couple of glasses of rather nice red wine, and stayed up later than I should. This was me making the most of my alone time, and also trying to unwind a little from the stresses of the day.

On Sunday, I had some help, in the shape of my father in law. I, of course had to do all the arranging, driving, and cooking, but he helped entertain the kids, and for that I’m very grateful. I was tired, having not got enough sleep, and was feeling hungover too. The hangover was very much like it would prove to be on Monday morning, but I didn’t pay much attention – after all, I had been drinking on Saturday night.

As previously mentioned, I took it easy on Sunday night, mindful of how I had felt that morning. I knew I had the kids on my own on Monday, so alcohol was completely out of the question, and I felt really quite exhausted, and a little displeased at how I had managed to tackle the day. So I relaxed in the evening once more, but didn’t go to bed late.

Monday morning’s hangover was worse than Sunday’s had been.

I dragged the kids out to a local attraction for the day feeling lousy, stressed, and acting decidedly grumpy. I didn’t enjoy it, although the kids seemed to, which was the important thing.

I can’t tell you how relieved I was to go and pick up my wife from the railway station on Monday evening. Nearly three days of having the kids to myself had been a huge drain on my resources. So much so, infact that when I awoke on Tuesday morning feeling not at all refreshed and hungover once more, I booked the day off work to recover. My wife kindly took the kids out for the day so I got most of the day to myself to recover slowly.

So – why was I feeling hungover each morning, despite not drinking?

Well, whilst I don’t recall often having felt this way without alcohol, I can think of many occasions in my life where I’ve spent an evening out drinking in loud and crowded bars, and have come home feeling completely overstimulated. The hangover on the day after a night like this is always quite spectacularly bad.

What if this sort of hangover wasn’t completely alcohol induced?

Remember that too much sensory input leaves me with my senses shutting down – my eyes glaze and I lose focus and my brain starts to block out much of what I’m hearing. To protect me from what have become hostile inputs, my body starts to shut off the senses through which I receive the hostile inputs.

What if much of what I’ve always perceived as a hangover is actually a more extreme shutdown response? Certainly the fuzzy head I experience along with a lack of focus is rather like the visual shutdown that I get at times of over-stimulation. The grumpiness I meter out when hungover is almost always directed towards attempts to make me accept more sensory input once more. For example, I was grumpy with the kids at the weekend when I felt hungover because they were pestering me to pay attention to them. When I feel hungover, I’d rather just sit and do nothing, processing as little sensory information as possible.

Do you see the similarity there?

Maybe when I have a day or even just an evening where I get far too much sensory input, I then get a sensory-induced hangover the next morning, regardless of whether I was drinking alcohol or not.

It’s easy to see how I might not have spotted it before – after all in my day to day life, it’s only really going to be nights out drinking in loud bars where I’m going to get really badly over-stimulated. And the hangover from those nights can easily be put down to alcohol.

I think I need a few more examples of this happening without alcohol to be sure, but right now it feels like there is some sort of correlation there, and that I’m not just imagining it.

Have any of you noticed a similar effect?