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?

Waiting for, well, something that never comes

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

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

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

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

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

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

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

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

Do any of you have any anxiety busting tips?

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

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

Not such a great social engagement

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I’m glad I went.

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

Long days and food

A little under two weeks ago, I was on holiday with my family in Edinburgh, Scotland. It was the end of the afternoon, on what had been a long day. We’d spent some time at the Museum of Childhood, seeing children’s toys down the ages. We’d also seen some street performers taking part in the famous Festival Fringe – including a couple of chaps who juggled firey clubs between themselves whilst one of them was balancing on a ladder and the other balancing on a six foot unicycle. As an armchair juggler, I can tell you it was impressive stuff.

After lunch we’d caught a bus that took as to the Ocean Terminal to see the Royal Yacht Britannia – the former sailing vessel of the British Royal Family.

By late afternoon we were still at the Ocean Terminal, the kids were hungry, and we were on the other side of town from my mother in law’s, where we were staying. We decided to buy the kids their dinner in a restaurant, and that we’d eat later, after the kids were in bed.

My brain was screaming at me – “eat something!”.

I didn’t though – my wife and mother in law were adamant that they weren’t eating at the restaurant, and so my instincts told me that it was best to follow the status quo, rather than potentially appear to be rude.

After we fed the kids, we caught the bus back towards Princes Street, in the vicinity of which we hoped to get a second bus back to the house.

Edinburgh’s roads are all being dug up at the moment in preparation for a new tram system that will be up and running in a couple of years time. We battled the traffic until we were about half way up Leith Walk. Then the bus stopped in road works, and well, didn’t move at all for the next ten minutes. When it then did move, it moved about half a car length each time, often several minutes apart. I felt exhausted and my brain was telling me that I should eat, and that I was a fool for not having eaten with the kids. By now, about half the passengers on the bus had got off and started walking the half mile or so back towards the centre.

I suddenly felt we had to do this too, and in a grumpy and clearly stressed manner told my wife. So we walked. The bus overtook us about half way. Bah.

It took us well over 90 minutes to make the five mile journey back from the Ocean Terminal to my mother in law’s house.

When we got back I collapsed in a chair. I felt dazed and exhausted, and my brain was screaming at me. “You’ve only eaten about 900 calories today! What are you playing at?”. It was at about this time that my wife started talking about dinner again. She wasn’t feeling very hungry. She and my mother in law would have a bit of a salad once the kids were in bed. Would that do me?

NO! It jolly well wouldn’t! I need proper food! I should have eaten at the restaurant!

Now – I don’t know if you are seeing a pattern here yet. My symptoms were all of sensory over-stimulation. It had been a very busy and long day and we had seen and done a lot. My senses had taken in more than they can manage for one day. But my brain was telling me something rather different. It was telling me that the problem was that I needed to eat.

Why might it do this? Well, I think it’s a learnt behaviour that is wide of the mark. I have of course experienced these sensations of feeling dazed and exhausted following busy days my whole life. Long before I learned about Asperger’s, I had to put some sort of a label on why I ended up like that, and what the cause was. I decided that the problem was that I hadn’t eaten or drunk enough over the day, and that my blood sugars were low. From my reading of Wikipedia, I can see that this sort of extrapolation is pretty common in people who think they know what low blood sugars means. At the time I acquired the label, and until very recently, it felt like this scenario fitted very well. After all, the exhaustion would come towards the end of the day, and if I stopped, sat down and ate, then after an hour or so I would feel much better again. It makes sense, doesn’t it?

So, on that day, as on many others, my brain was telling what I thought I knew – that I hadn’t eaten or drunk enough, and now my body was crashing because of it.

Wrong wrong wrong.

The real reason for my feeling dazed and exhausted was simply the AS-related sensory overload that I was experiencing after a full-on day.

It’s interesting to note that despite the way I was feeling, I could have walked miles effortlessly if I had needed to. As it was, we briskly walked a good half a mile up hill to try and outrun the bus, without it feeling a strain.

Of course I feel better after I’ve sat down for a while and eaten some food and drank some water. But it isn’t the food and water that are having the magic effect – it’s the proper rest. I wrote recently how on another family holiday I started to sense how I was over stimulated at the end of each day, and how time was the healer – an hour or ninety minutes restored me. Well, this is the same thing.

The problem is that I’ve been wrongly viewing my feelings of exhaustion as a signal to eat for many years, and in that time I’ve put on quite a lot of weight.

And do you know the real big give away that should have told me long ago that the problem wasn’t hunger? I frequently don’t feel hungry even when my brain is telling me that I need to stop and eat. How can I possibly have missed that?

This week I’ve started trying to pay more attention to what I’m eating. I’m trying to trust my own judgement about when I’m actually hungry, and not just to stuff my face when I feel overloaded. It’s difficult, but on a couple of of days worth of evidence, it’s working so far.

Whether it will continue to work remains to be seen.

Better to know?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Frightening, isn’t it?

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

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

–

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

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

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

What to do next

For as long as I have been in the IT profession, my best work has been produced from the ideas of other people. Tell me what needs doing, and I’ll do it. Typically I’ll do it well, and with a great attention to detail.

Leave me to my own devices, and I’ll struggle to determine what needs doing, and then what the priorities are.

This morning I found myself thinking that I could do with someone to tell me how to live my life. Discovering and embracing an autism spectrum disorder may well be wonderfully liberating and it has certainly answered a lot of questions, but it is leaving me feeling as though I don’t know where my life is going all too often.

Today is one of those days. Wouldn’t it be great if someone would come along and just tell me that now I have to do this. And when I’m finished with that, I should then do this – and so on.

Instead I feel stressed, anxious and bewildered. My to-do list tells me the things I have to try and get done today, but what do I need to do to get my life on track next week, next month, next year?

I don’t know.

Oh no, I’ve done it again!

It’s my first day back at work today, after a week of holiday.

I arrived at work a little after 0930, switched on the various PCs on my desk, and started to work through the large volume of email that had built up over the week.

And then it happened. It always happens.

I read an email that suggested that a fix that I had proposed for something that I was working on before my holiday was wrong. I was suddenly filled with self doubt. How could I have been so stupid? What must these people think of me for suggesting a solution that was wrong? Can I go home and curl up in a little ball now please?

I say this always happens – but of course it doesn’t always happen like the above. It is very common, however for me to arrive back at work from an absence and struggle to confidently pick things up from where I’d left them. It doesn’t take much to knock my confidence. I also find that in the short time that I’ve been away, I’ve forgotten the detail of the items I was working on.

So when I was confronted by an email that said my proposed solution was wrong in a number of ways, my natural reaction, countering my loss of detailed information about the issue was to assume what they were saying was right. A very familiar problem for me.

Lucky then, that I have something of a solution for this problem these days.

Instead of firing a quick email reply back apologising profusely for my mistakes, I held tight and went back to basics. Firstly, I wrote down what I thought the solution would be – that I’d made a bit of an error, but that it wasn’t as large as the email had suggested. This was an initial brain dump for me – a starting point of what I did remember about the problem.

I then went away and spent an hour researching and thinking about the problem once more. Then I wrote my email reply. I didn’t really know what it’d say before I wrote it – my thoughts didn’t fully make sense to me until I’d done the writing. How very typical – I can order my thoughts on paper, but not easily in my head or indeed verbally.

How well did my reply match what I thought the solution would be before I started researching? It didn’t. Not at all.

You see, I wasn’t wrong in my original solution to the issue. The colleague who had questioned it had some wrong assumptions.

Until recently, I’d have trusted the other person’s assertions, and would have written a very apologetic email back straight away, before later having to retract my apology when it became clear that I wasn’t after all wrong. That was terrible for my self esteem both at the point where I’d apologise, and also at the later point where I’d have to go back and say that sorry, I wasn’t wrong after all. Horrible.

So if I used to trust other peoples assertions in these matters, do I now trust my own? No – as you can see from my above writing, I still thought I was in the wrong. The assertions of my colleague made so much sense to me, and came from someone I trust and respect. They couldn’t be wrong, could they?

I can’t change my neurology. I’m always going to lose sight of detailed information of technical work issues after only a short period of time. I’m always going to be able to see the inherent logic in those who say my solution is wrong. Hey – if I trust the person and I no longer have the detailed information at hand to show they are wrong, who am I to argue?

Perhaps this subtly shows a larger picture of how I interact with people on a day to day basis. I either trust someone or I don’t. If I trust them, and if what they are saying sounds logical, then I assume they are right and that they are telling the truth. This is why sarcasm is often lost on me, and why I can be gullible. This is just how it works for me – it isn’t optional, and I don’t do it out of choice.

I can’t change my neurology, but I can change my response. Holding back on immediately replying in situations like this – regardless of how compulsive it feels to respond immediately – can and does often work. It doesn’t stop my initial feelings of stupidity from happening, but it does at least offer the possibility of me saving some of my precious self esteem.