There’s a lot going on in my head right now, and I’m not only struggling to make sense of it, but also to turn it into something that can be expressed in some way. I have no idea which way this post will turn. Lets find out.

My background anxiety levels are through the roof, and small things are causing them to peak. Big things are causing them to peak too, obviously, but when I get to the point that little unimportant things are causing me such a problem, well – I’m not in a good place.

Everyone has problems. I know that. In that respect I’m absolutely no different to a considerable portion of the population of the planet right now. We all have our personal struggles. I want to make this clear, because I also want it to be clear that this is not a post asking for sympathy – not at all – it is a simple dump of where I am and how I’m feeling, and maybe even some of the reasons why.

A couple of weeks ago, my wife booked us a joint appointment at Relate. Those of you in the UK will know this is a relationship counselling service, where someone who is suitably trained will listen to the viewpoints of both people in a relationship and will try and facilitate harmony in whatever direction that happens to go. My wife has used the prospect of Relate as a threat before. Perhaps that is a little unfair. I have perceived her calls to go to Relate – which are usually made during one of our arguments, and once I’m well and truly within meltdown – as a threat. We last talked about it, and this time rather more soberly a couple of months ago. Neither of us actually made the call at that time.

But a couple of weeks ago, she did. She quietly dropped it into conversation once the kids were in bed one night. I was shocked and a little hurt that she’d just gone ahead and not actually spoken about it with me first. Its not as though I actually would have disagreed.

We’ve had an introductory session, and more are scheduled for the weeks ahead. I found the first session quite difficult emotionally, but as I’ve always found, opening up to a stranger is actually quite simple to do. Somehow, I find it easier to turn my thoughts into words. Perhaps I know that I’m not going to get them thrown right back at me, and then struggle to find a suitable response. In other words, the Relate setting facilitates a non-confrontational way of me to express my feelings. That’s a good thing. However, I worry about what I’m going to say on Friday morning, when we go back for the next session.

You see, I’ve been thinking a lot, and very open-mindedly. I wouldn’t normally do that, perhaps because I would be scared of what the outcome would be. Ordinarily if my thoughts took me to a place where I decided that actually everyone would be better off if my wife and I separated, I would not be able to face actually having the conversation with my wife about it. I fear the confrontation so much that I’ll go as far as not thinking about certain possibilities to avoid having to actually go through it.

But Relate has altered that balance. If I need to have that conversation, it can be done with a neutral third party present, and somehow that removes the threat of confrontation for me. This change in balance has been surprisingly liberating. I have found myself thinking through possibilities for the future that really would be off limits normally.

Let me share one with you. It may appear gloomy and depressing, and in a way it is – however it feels quite rational to me right now.

If I look at my extended family, then I don’t see a very happy nor comfortable picture. My dad is the only one of four siblings every to marry or even maintain any form of long term partnership at least during my adult years (and thus the scope of my knowledge). My dad’s brother and one of his sisters died over the last decade on their own. Alone. My dads other sister is a spinster too. My parents have a 40 year marriage, but it is not what you would call conventionally successful, and it is clear from things that my mum says, and letters she has written me in the past that my dad drives her near to insanity much of the time. They stay together, but that seems to be much to do with a fear of living alone in their old age. My brother, aged 36, is to the best of my knowledge single, and does not appear to have had a long term relationship in around ten years. He lives alone, in his own flat.

That really isn’t a rosy picture of happy relationships. I for my part am in the ninth year of the relationship with my wife. I don’t make her happy the majority of the time. She doesn’t trust me to get things done (despite the fact I am quite practical and do get things done), and frequently refers to me as the third child in the family – often in front of the kids. We argue frequently, invariably about how I don’t make her happy. I have been told in all seriousness by her on a number of occasions over the last couple of years that she feels trapped in the relationship due to the kids and her lack of independent means to extract herself.

I feel that I try very hard to make things work. My wife for her part states the same. I feel unloved, unheard and that I’m not understood by anyone. I also feel that it is getting harder and harder for me to maintain my act of normality – the thin veneer that I exude in front of everyone to try and show that I’m not as different from them as I actually am. I’m tired, not sleeping properly, stressed and very anxious. I dare say I’m depressed too.

But I feel quite rational.

And the rationality in all of the above right now says to me that the best outcome for everyone – me, my wife and my kids – is for me to leave. It wouldn’t be an instant cure by any means, but perhaps six months down the road things would be heading in the right direction. You see, a separation would ultimately remove the primary cause of the unhappiness experienced by my wife, and the constant disappointment of me failing to meet what she considers to be easy-to-meet needs. It would make me happier too. My stress and anxiety levels would drop due to me not being constantly on edge at home, scared of confrontation, and I would undoubtedly end up with more me time on my own – something that I need in order to be happy, yet don’t feel exists for me right now. The kids would be happier too once things settle down. The unhappiness of both of their parents is rubbing off on them, at times very obviously. They are unhappy and I would bet quite confused right now as to why both their parents keep flying off the handle with them.

What’s more, the track record of my extended family suggests that I will lose in the end at any rate. Regardless of the outcome of these Relate sessions, there would appear to be a very good chance that I will eventually end up on my own. I don’t want to do what my parents have done, and stay together but unhappy – that wouldn’t be fair on my wife.

I don’t think this will be what my wife is expecting as the outcome of the sessions, however we have only been to one, so I may yet be wrong. I suspect, that she feels that the counsellor will be able to unlock some magic communication method that allows us to understand each other in a way that we’ve never done, and in a way that will ultimately allow us to sort out our unhappinesses and live happily ever after. Maybe that will happen. Maybe something else will. Maybe my point of view will have changed completely by Friday. Only time will tell.

But at least I’m considering all the options now, rather than suppressing anything that could lead to a difficult confrontation.

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The rapidly approaching T-junction

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So here’s the deal: I find it difficult to plan and execute things.

My inability to get started causes issues in all areas of my life: What shall we do at the weekend? What shall I buy my relatives for Christmas? How do I start this work task?

I don’t have answers for all of these problems, but at work, where I’m good at drawing up a list of the tasks that need completing, I’ve found a trick that more often than not gets me results. It involves writing.

I write a work diary. Sometimes I write it in insane detail, to the point where others literally scratch their heads and express incomprehension at the depth of information it contains. But I’m well known for being quirky at work, so I tend to get away with oddness like this.

Whilst others may see my frantic note taking as odd, it really does serve a hugely important purpose in my time at work.

It is an enabler for me. The simple action of writing down what I am doing has the effect of translating the task into something that I can understand.

In short, it decodes my life, one sentence at a time.

Here’s how it works:

• I outline.
• Put simply, I use an indented bulleted list, one sentence per bullet point.

• A point that is logically a child or continuation of the previous point, is further indented, like this
• Outlining presents me with a list

• Lists are easily decoded by me
• Lists provide the right sized chunks of info for me to decode in one go
• Lists give a logical structure to what is often unstructured information
• Bulleted lists allow detail to be added out of sequence

• When something occurs to me, I can go back and add it in the right logical location
• I can do that without breaking the flow of the list
• I did just that in the writing of this list

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Decoding life, one bullet point at a time

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‘Tis the season to be jolly according to the words of the well known carol.

The festive season has arrived and gone, and I have survived – but it has taken its toll. This year, our family festivities worked in a different way. Earlier in the year, my parents bought a second home in the next village up the valley from us, partly in an effort to be closer at hand without imposing on us all the time. This, on the whole, has been a positive thing – family relations are more cordial than they have been for a while, and things seem less strained.

Christmas has been a sore point in our family for a number of years. My parents main home is a 300 mile drive away, which in the UK is about half the way from the top to the bottom of the country, and a car journey, not one taken by plane. For the first couple of years after our kids were born, we stuck by tradition, and made the long drive to my parents house for Christmas week. However, my wife and I then decided that we’d prefer to stay at home over the Christmas period in subsequent years, at least while Christmas was still a magical experience for the kids. We don’t have the room to put everyone up, so for the last few years we’ve had a much smaller family Christmas celebration, without my extended family present. This has worked well, as we have not had to cook for a large number of people, or even be very organised – all of which suites me fine. Of course, this didn’t go down quite so well with my parents, and my mum in particular. She likes the family to spend Christmas together. As we live in different areas of the country, and don’t meet up very often, I can understand her point of view. But ultimately, you have to do what is right for you, not for everyone else.

With the new house in the neighbouring village, this year’s Christmas was always likely to be different. My wife and I agreed to allow a larger family Christmas, with us providing lodging to one relative, and my parents putting up my brother. My wife and I would cook the Christmas meal, from food provided by our guests. All in there would be six adults and two children eating together on Christmas day. Entertaining on the surrounding days would be shared between the houses. Doesn’t sound too bad, does it?

Well, we all survived, and there weren’t any arguments. My wife was ill with a nasty flu-like bug that has been doing the rounds, so I had to do a bit more thinking ahead and rushing around than I was expecting. I cooked most of the meal, which went fine until the point that the turkey was starting to run late. We only have a small kitchen with a single oven, so my planning all revolved around the roasted vegetables going into the oven once the turkey was cooked. It became clear that the turkey was going to take rather longer than estimate, and at this point, faced with a written list of jobs that couldn’t be started, I started to get very stressed. In the end, the dinner was on the table an hour later than planned, the roasted veg weren’t as good as I had hoped they be, and I was feeling very very stressed indeed.

Our guests left in the middle of the week between Christmas and New Year. My wife was still ill, the kids were fighting a lot and I was very much out of my comfortable routine and feeling very stressed out and anxious. There was nothing in particular that was causing it – more like everything was causing it. Nothing in particular was wrong, but yet nothing was right either.

I longed to get back to work after the new year, because I hoped that would provide me with my regular routine once more, and allow my feeling of wellbeing to return.

It didn’t. I have found it very difficult to get back into the swing of things at work. I think the problem is my underlying stress and anxiety that have been so robustly shored up over Christmas. They feel to be acting as something of a barrier preventing me from starting tasks. I’m trying hard, but faced with a long list of tasks that need doing at work, I’m feeling rather overwhelmed at times.

Stress and anxiety can affect anyone, of course. Indeed I’m sure that a huge number of work days are lost every year to them. Christmas time with family can be stressful for anyone too. I understand all of this, and yet at the same time I feel that the problem I’m facing here is inextricably bound up with my Asperger’s too. My lack of social intuition, need for routine and tendency to get overloaded by sensory input all quickly lead to stress and anxiety. My Christmas was characterised by a complete lack of usual routine and long periods of social interaction, along with trying to keep the kids amused and stop them from fighting. I longed for some time where I could just go somewhere quiet to be alone and do nothing for a while. That would jave been bliss, but it didn’t happen. Instead, the stress and anxiety that was the output of my busy and disorganised week was multiplied by the stress and anxiety that most people feel in hosting a Christmas week for their families.

And so here I am, one week back at work, and nearly two weeks since my guests went home still felling highly stressed and highly ineffective at work. I’ve produced lists of tasks. I’ve tried to write them in different ways and in different formats. I’ve done my best to prioritise them, and to tell myself that I can sort this all out.

It will all get sorted, of course – at least those bits that are important. But I know that it’ll be some time yet before I feel relaxed and in control.

–

I wish all of you a happy new year.

Thanks you so much to those of you who have taken the time to write to me recently – either here or via email. I apologise for not replying – perhaps the above explains a little about why that is. As ever, writing is ultimately the media that works best for me, and I’d really like to spend more time doing it this year. Being honest and open with you here – albeit anonymously – has helped me enormously over the last two years. I hope there is much more to come.

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The season to be jolly

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It came like a bolt from the blue.

It always does.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Out of the blue

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Thoughts and feelings. Self expression. It’s vital. Yet how do you express yourself when you don’t have friends? And what happens if you don’t express yourself?

These thoughts have been on my mind recently, so I thought I’d write about them a little.

I have considerable trouble expressing myself clearly to other people, particularly when feelings are involved. There are a few problems at play here, that conspire together to make something that should be straight forward just too difficult a lot of the time.

The first big problem is who to express myself to. My observation of the world over the years suggests that my answer to this question is rather different to that of most people. My best guess is that the usual answer is that you should speak to the person that is most appropriate. That may be your spouse, close friends, family, more casual friends, business colleagues, your doctor, your counsellor, the girl behind the bar. The answer really depends on what you need to express and why.

The answer that works for me, however, is to talk to my wife. I rarely confide in anyone else. Why? Well, as you’ve quite likely read before on this blog, friends are something of a problem and an enigma to me. I’ve never really managed to have good friends from my early teens, when life started to get beyond friends being there to play simple games with. I dont have an inner circle of trusted people in my life, or even an outer circle for that matter. I have my wife.

Secondly, there is a language problem. I’ve tried to explain this before on the blog, I think. I often find it difficult to translate my thoughts and feelings into words. Its like I speak a different language inside my head, one based far more on visuals than on words themselves. Sometimes, I can’t find the right verbal words to express what I’m thinking or feeling. I know how I think or feel, but I can’t express that to you in any sort of meaningful way.

Another issue at play is really a consequence of the other two, and of a lifetime of faux-pas. My self confidence is shot. A lack of self confidence compounds the above two problems, and means that I often don’t trust that my thoughts and feelings are worthwhile or even correct.

When added together, these problems make a potent block on self expression.

What happens when you don’t express your thoughts and feelings? In my case they get bottled up. I have bottled up my feelings for years, and the more this happens, the more they create a pressure that needs to be relieved.

The sort of self expression that ends up happening via pressure relief is often unpleasant. It frequently shows via anxiety or depression or both. Confusion and desperation can also put in an appearance, turning something that may have started out as a minor annoyance or even as a pleasant thought into a seemingly bleak hopeless spiral, which is often ends up expressed horribly inappropriately.

Clearly, bottling things up is not a good option although I do an enormous amount of it.

What I try and do these days to counter this problem is write.

This blog is more about self expression than anything else. It doesn’t really matter whether anyone reads what I write, although I’m continually amazed and flattered that people do, and from time to time find it useful. What really matters to me, is that this blog gives me an opportunity to express myself in an unhindered way. What you read here is pure me, with all of my faults. Indeed, my openness has grown over the time that I have been writing here. Unfortunately though, I can’t express everything that I would like to. There are some areas that are just too personal to cover. Whilst I write pseudonymously, there are people who read this blog and do know me in real life.

Writing works, though. With writing, I have the time and ability to express what I want to say clearly. I can (and do) go back and revise what I’ve written, sometimes several times, before I publish my thoughts. I like that – it works well for me, and I end up feeling like I’ve expressed my inner thoughts quite well. It is satisfying, and is also often something of a pressure relief valve.

How do I deal with those other thoughts and feelings that I can’t express here? At the moment, I don’t. That’s really not good.

I’ve paid for counselling in the past, and found that with the right counsellor, I can and do open up and express the sorts of thoughts and feelings I can’t express in any other way. I can’t afford to pay for a counsellor for the rest of my life though, which leaves me wondering if there is a solution.

Do you have any suggestions? How do you cope with this sort of problem?

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Self expression

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Where do I start?

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

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

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

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

So. What happened on D day?

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

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

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

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

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

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

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

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

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

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

So there you go.

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

–

So, where next?

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

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

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

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Diagnosed: Part 2

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On Monday I flew to Amsterdam on business, returning yesterday evening.

I work in IT, and this trip was to visit the data centre we use to house our computer servers, with the main task being to fit out and commission a whole new cabinet with 20 servers and all the associated wiring and everything else that is needed to make things work.

I wasn’t on my own for this trip – John, my colleague was flying with me.

We worked hard, putting in ten hour days without a break for lunch, finished yet more bits and bobs of work after dinner in the evening, and tackled unexpected adversity along the way. At the end of it all, I described my overall feeling about the week to John in one word – brutal.

It really was hard work, but whereas John is just suffering from being rather tired today, I’m suffering from a great deal of stress and anxiety, as well as feeling completely overstimulated and exhausted. Am I being overly dramatic about this? Well, I certainly don’t feel like I’m making more of this than is really there.

Over the course of the four days, I was focussed and got things done. There was no other option, and I felt like a lot of weight was on my shoulders to achieve the goals that we’d set ourselves. When things went wrong – and they did in a fairly major and completely unanticipated way – I just had to suck it up and make things work again. Whilst that was clearly stressful, my body and mind stepped up a gear and let me take control. I felt stressed, but at the same time I was ultra focussed to, so it was manageable.

To further complicate my week, I agreed to drive John and me around. This being just about anywhere in the world outside of the UK meant that of course I would be driving a car on the other side of the road than I’m used to. I’ve never driven abroad before. I was extremely anxious on the first drive from the airport to the hotel, but it passed without incident. As the days passed, I grew more confident with the driving, and my brain adapted to the gear stick being on the other side, although it never quite grasped that the handbrake was on the other side too.

By the time of my final drive back to the airport, I was in control enough to not only take in the road ahead and the other traffic, but also the sat nav too, so I could see in advance where I was going, and even to chat a bit with John. On the first couple of days, John had to resort to telling me where the sat nav was suggesting we go at each and every junction – he was Sat Nav Plus.

When our plane landed back in the UK yesterday afternoon, and we’d worked our way through the slow snake-like queue to get through passport control, something in my mind changed.

I got in my car, and started the drive home. I was suddenly feeling very stressed and anxious. The traffic was bad, and so was the weather – a total contrast to what I had experienced just an hour or two earlier in Holland.

My mood plummeted, and I felt very jittery indeed. Anxiety bubbled out of every pore. Not anxiety about anything in particular. Just anxiety.

I think that when I landed back in the UK, my mind stopped holding everything in. I’d slurped up a lot of stress and anxiety over the course of the week, and it was now taking the opportunity to force its way out of me.

I still feel that way today, although the edge has been taken off it a little – it feels less raw and uncontrolled.

My mind is unusually blank today, and I keep finding my eyes unfocussing. Indeed I’m so blank that I’m actually finding it quite difficult to write this. I had so much to say, and yet the visible chunks of sentences in my head are drifting off into the distance before I get a chance to get them written.These are the signs I usually associate with sensory overload. I’m not sensorily overloaded right now, but I guess that this too is something of a delayed reaction to sensory input I’ve had earlier in the week.

Something unconscious in me allowed me function above my abilities for most of this week. Now my mind and body are saying it is pay back time.

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Pay back time

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I’m sure that everyone finds it difficult to be positive all of the time, no matter how high their self confidence is.

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

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

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

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

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

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

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Glass half full

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I have always been astonishingly good at faux pas. Since my self-realisation eighteen months or so ago that I have Asperger’s, there has of course been a reasonable explanation for this.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

–

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

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

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

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

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

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Subtlety

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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?

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Fallout

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