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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Help.

I’m sorry to start with such a stark word, but I truly feel like I need some help right now.

Life with Asperger’s is at times full and happy, but I also find it to be filled with big periods of confusion, stress, anxiety, and unfortunately, hopelessness. These feelings have been so repetitive through my thirty-seven years, that they feel normal when I’m experiencing them. They are literally a normal part of my every day experience of life, and they are filling it right now.

A bit of painful truth: I’m destined to be alone. I seem to be unable to keep relationships strong. Specifically, I have never offered women what they need to remain happy in a relationship with me. The big hole in my relationship with my wife is now and always has been romance. She needs it, and – fairly – expects it from me. I appear to be unable to offer it.

Over the years this has caused a lot of unhappiness and resentment in our relationship which ultimately boils over into arguments. The phrase “Why are we here again?” is now forever etched into my brain, along with the feelings of shame and guilt that it conjures in me.

And so to the title of this post. My initial that explains everything moment started it all. I intuitively understood the relationship between Aspergers and me from the start. It really did explain everything as far as I was concerned, and that provided immense relief. I started the blog, and everything here, from the initial tentative sharing of my previously internalised thoughts, through my formal diagnosis last year, to today, with all the difficult times and good that there have been along the way – everything here has really been for the benefit of my wife. I didn’t know that when I started. It has has only really occurred to me this morning that it truly is the case.

It’s true. You see, I’ve failed to get my point of view across verbally. My wife and I speak different languages although the words are the same. I have tried to get my point of view across many times, and yet somehow the words I say mean something different to my wife than the way they were intended by me. In the last two years I’ve invested a lot of time and poured a huge amount of emotion into my words here. From the blog comments and the private emails it is clear that much of what I’ve written has struck a chord with those of you who’ve paid me the very great honour of reading what I’ve written.

Whilst that is comforting, the one person that I really hoped would find a new understanding from it all hasn’t. My wife reads this blog, but yet I feel like my best attempts to explain myself are still being misinterpreted. To my wife, this blog – and indeed the aspergers itself explain nothing.

So on this bleak morning after yet another “Why are we here again?” evening, I’m genuinely asking for your help. That means you if you are my wife, you if you are a long term reader and you if you just stumbled upon this article by accident. I’m interested in NT thoughts, but perhaps more than anything else I’m interested in the thoughts of those of you who are on the spectrum yourselves.

How do I make romance work?

How do you make romance work?

To me, romance feels like a concept that applies to other people, not me. It is abstract, and as I’ve written before, I have real genuine trouble with abstract concepts. I have no inbuilt definition of how it works and what I need to do to apply it. To me it is devoid of logic – a mystery that I don’t know how to even begin to solve.

Can I learn it? If so, what do I need to know, and what do I need to do?

Where do I start?

Please help if you feel that you can. You can comment privately via the contact form if you prefer.

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That explains nothing

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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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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.

Post from: That Explains Everything

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Subtlety

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Ah yes – Peter Pan, the boy that never grew up. I was left feeling like Peter yesterday.

It all started when we rushed out the door on Sunday morning. I took the kids to the rugby ground – my son for his weekly training session, and my daughter to stand and watch with me, whilst my wife went to the supermarket just down the road from the rugby club to get the weekly food shop done. I say supermarket, but it’s actually two right next to each other – Aldi, the lovely and decidedly quirky German import, and Asda, the local giant which is now owned by America’s Walmart. Asda’s name, incidentally, comes from a contraction of Associated Dairies.  I mention this because it is one of those odd little bits of information that frequently pops into my head when Asda is mentioned – there is clearly an association there in my brain, and my AS helps to push me into mentioning it. Only after I’ve told this to people will I start to feel embarrassed for having done so.

Anyway – Asda isn’t the star here, it’s Aldi. Aldi is great – it doesn’t stock the huge range of Asda, and it isn’t big on well known brands, but the things it stocks are usually of excellent quality, and many – such as cold continental meats – are better and also much cheaper than at their giant next door neighbour. Aldi also have a clever trick of having some non-food specials in twice a week at unbeatable prices. Everything from power tools to computers, light bulbs to bathroom furniture. At the start of the summer we bought a giant four berth tent and lots of camping equipment from them when they opened one Tuesday morning (just in case they would sell out before we got there), at prices far better than any of our local outdoors shops could manage. We like Aldi. Anyway…

Whilst I supervised the kids at the rugby, my wife went to Aldi first, and then across to Asda for the few items she couldn’t get at Aldi. We met up at the end of the training, and she told me that she’d seen some winter coats at Aldi – both for my son and me. We wandered down the road to take a look. My son liked his jacket, and I thought the one my wife had found for me was great. They were silly money too, so we bought them. For £18.99 I got a waterproof coat with an unzippable fleece lining. It’s nicely finished, is deliciously warm, and has plenty of pockets. My son’s is like a slightly brighter scaled down version of mine. The fleece lining doesn’t unzip on his, but hey – for £7.99 you really can’t complain – and it is still waterproof.

At home, after lunch, I found myself doing something that I remember doing when I was a child.

I took my new coat, and spent a good ten minutes pouring over it in great detail. I unzipped each of the pockets in turn, and explored them with my hands, seeing what size they were, and wondering where to put each of the things that I carry around with me. I marvelled at the stitching, and carefully cut off the couple of stray thread ends. I examined how the fleece was zipped in, amazed at the trickery used to hide the metal zip ends behind folds in the softer material where it might make contact with my neck.  I tried it on and then took it off again, and then put it back on and did up the zip right to the top. I unfolded the hood from it’s hidden compartment, and then carefully folded it back up. I felt the fabric of the fleece lining and of the outside too. I listened to the sound that my hand made on the outer fabric.

This is something I can always remember doing with clothes, but especially with coats. Coats tend to be quite complicated garments with lots of pockets, so there is much to explore. I can still remember a summer coat (this is the UK after all) that I got when I was about ten. It was green and blue and yellow – very garish in today’s terms, but quite fashionable back in the mid eighties. It had a pouch on the front for your hands, much like a hoody sweat top, but you had to peel the pouch off (it fastened on at the top and one side with velcro) to zip and unzip the jacket – really very unusual. I loved it for it’s unusualness, and for the lovely way it had been stitched together. To me, it was a coat to be proud of. I guess I feel much the same way about my new coat. It is a no-name brand, and in all likelihood the material probably isn’t wonderful quality, and maybe it’ll lose it’s waterproofness quickly. But it is well engineered in a very German way, and well finished, and it was an astonishing bargain to boot.

I keep wanting to put it on – in fact each time I’ve popped out of the office this morning, I’ve put it on. This is unusual – I usually brave the trip to the coffee shop or the post office in just my shirt sleeves, even at this time of the year.

So, I feel like Peter Pan, the boy that never grew up. I feel ten years old again, pouring pride and affection into my new coat. I can’t help it – it’s just me.

Yet whilst my actions may be very much like they were when I was child, I’m concious of the fact that they are not the actions of many, probably most kids. My son is only five, so I can’t compare directly with myself at ten, but his reaction to his new coat was, I think, fairly typical of boys in particular. He liked the colours, pronounced it as  cool and said he’d wear it. When we got home, it got discarded on the kitchen floor and forgotten about until this morning when it was time to leave for school.

Will he react that way at ten? I can’t say, but I suspect he’s more likely to continue to react that way than to have my fascination with the mechanics and design of it.

In lots of ways I’m like Peter Pan – many of the things I do now are the same as when I was a child. However, the child in me is still really rather different from your typical child, so the comparison feels strained to me. I’ve read many times over the last year about immaturity and naiveness in adults with Asperger’s, and associated behaviour being described as child-like. But it occurs to me that I’ve not seen it pointed out that the behaviour is child-like in a peculiarly ASD way – but it most certainly is. And remember how kids with ASDs get described? That’s right – as little professors.

So maybe I’m not like Peter Pan at all. Maybe I’m actually like a little professor, in an adults body, with a strange fascination for winter coats.

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Peter Pan’s new coat

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

–

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

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

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

–

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

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

But do you know what?

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

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

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

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

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

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

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

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

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

Maybe we are not so different…

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Maybe we are not so different…

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One of my tasks at work right now is to pick up new cases that have been logged on behalf of our clients, and raise cases on our internal ticket system to deal with them.

Once such case was waiting for me when I got back from lunch today. The basics of the case were obvious, and I created a ticket for it. However, one of the specifics wasn’t at all clear to me, although it looked to me like what the client was intending was implied, but not actually stated

Not wanting to misinterpret what the client was asking for, I pushed the case back to the call handlers, and asked for clarification on the item I was unsure of. I got an immediate reply. It was almost rude.

The reply stated in no uncertain terms that the original information in the case clearly stated what was being asked for, and of course the client was wanting the item that I was clarifying. The email essentially said, “What? Are you stupid or something? Did you not read what was written?”.

And in retrospect I could see that perhaps it was obvious what was being asked for. The problem is that unless someone says, “This is what I want,” I find it difficult know just what it is that people are asking for. I’ll have an idea of what they want much of the time, but because I’m not sure, I’ll end up asking for clarification. This produces reactions of surprise and astonishment from people. How could I possibly have not understood what they were asking?

There is a degree of reading between the lines of what people are saying that is just lost on me.

Can you read between the lines?

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Not reading between the lines

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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.

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Long days and food

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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?

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Better to know?

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