Out of the blue

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.

Subtlety

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.

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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.

Peter Pan’s new coat

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.

Maybe we are not so different…

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

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

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

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

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

In a blog article I wrote a week or so ago, I lamented about how few hits the blog was getting. I felt that over the last nine months or so I had grown into a confident blogger, and now I wanted my words to be read by more people. To try and put this into practice, I restarted my AS twitter account, and also started commenting on more blogs – some of which have been on my feed reader for a while, others of which were new to me.

Commenting on other people’s blogs is something that I started out doing, but which I have become more and more tardy with in recent months. Those blogs that I have tended to comment on over time are from folks who present to the world in broadly the same way as me, and whose blogs also have a distinctly this is what it is like for me tone to them. This type of blog, of course, is only a subset of the autism-related blogs out there on the Internet. Many others take a news-like approach or advocate autism, some rather militantly. Perhaps, it turns out, there is a reason why I’ve steered away from these sites.
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Saying one thing and doing another

“Hi James,” said a voice behind me in the baker’s shop this morning.

I turned, and there was the new manager from work. She’s based at the other end of the country, and visits us for a couple of days every other week or so. “Oh, hi Lynne,” I said. As I paid for my breakfast and she bought a Latte, we exchanged very basic small talk. I asked if she was here for a leaving do that’s happening after work tomorrow – Lynne is replacing one of those who is leaving.

Perhaps you may have taken from my last sentence that I was asking if that was the primary reason she was here. I wasn’t meaning that, but I think that’s how Lynne took it, judging by the slightly confused look on her face. She was going to attend, yes, but she was here for other things as well. Of course I hadn’t meant the question the way it had sounded, but – oh well.

By now I’d finished paying and was wondering if I should politely wait for Lynne, as she would be heading back to the same office as me. In the blink of an eye, she clearly sensed this too, and said,”Oh, don’t bother waiting – you get off.”

“That’s fine, I’ll catch up with you later,” I said, and then headed back to the office, feeling confident that I’d made a good impression.

A good impression, eh? Hmmmm. The passage of time, and the application of some rumination means I now feel rather differently.

The problem here, is that my facsimile of chatting is just that – it’s guess work rather than having anything solid behind it. I’ll catch up with Lynne later will I? Erm, no. I won’t. My comment appeared to demonstrate that we had things to talk about, but we don’t. It’s just what I imagine people say, and in a moment where I had to find something appropriate to end the conversation, my brain chose that phrase.

There is a bigger problem here too. By interacting with people in a way that mimics what I think they would be expecting to hear rather than a way that is actually acheivable by me, I often send the wrong signals or leave a sense of inconsistency with people. I must be frequently confusing to deal with.

“Can you do this for me James?”

“Sure”

Except that having confidently said yes to a piece of work without even finding out what it involves, I’ll often find that the work is outside of my sphere of knowledge or it simply doesn’t grab me and I struggle to complete it. Confident and happy to undertake work, yet not good at completing it. That’s a bit of a conflict, isn’t it?

Life is a constant battle to obtain the right script for James the actor, and unfortunately the script writer fails to see twists and turns in the plot of life.

A metaphor, yes, but not all that far from the truth either. My tool box of stock phrases, gleaned from years of observing others are something of a script that I act out. And as I am the script writer, and I don’t often see things coming in life, I’m frequently stuck with a script that doesn’t fit the situation very well.

If half the battle is finding suitable words when communicating with others, then the other half of the battle is realising that the things I say need to be doable. Maybe saying no once in a while would help, no matter how big and scary that sounds.

Because if I said no to something I couldn’t deliver, at least I would be being consistent.

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.

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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?

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.

Life derailed

I’ve written before about how my daily routine is on railway tracks, and that when something comes along that alters the course of my day, I’ll find that I want to continue down those tracks rather than modify my routine to the new schedule.

Well, I’ve recently figured out that the whole bigger picture of my life is like that too.

You see, I grew up in a neurotypical world, with neurotypical expectations, hopes and dreams. I knew I was a little different from the norm, but I really didn’t see how big this chasm was in certain areas until very recently. Thus, neurotypical expectations felt normal and right for me. I had places to get to and things to do. After leaving school there was University to look forward to, and then a life of work, making my way up the career ladder. Somewhere along the way I expected to gain a wife, kids and progressively bigger and more comfortable houses to live in. I was expecting to lead a typical middle-class British life.

In some ways I did. I went to university, and got a good degree. I migrated into the world of work without too much pain either, and made an impression on people for providing the results they asked for. Indeed, it took several years before it became apparent that not everything was as plain sailing as I thought it would be.

I guess the wheels started to come off the wagon when, three years into my work life, I broke up with my girlfriend of six years. Sadly, the relationship had deteriorated in a way that left us as friends and little more. I decided it was over, and we parted company – the one and only time in my life where I’ve ended a relationship. In a neurotypical way I  imagined that once I was out of this relationship, I’d meet someone else in due course. But I didn’t – not for several years. Instead I failed miserably to get my act together.

And then there was work. I’d been getting into trouble either for being too outspoken (something that I’ve written about before), and occasionally for not knuckling down and working hard when it was needed. I had developed an eye for seeing the ridiculous and unjust in the work environment, but had poor control over voicing my opinions. I was no longer the model employee that people turned to to get things done. I was the loose cannon that took a bit more managing than my peers, though with management I still produced good results most of the time, and was still valued.

Instead of trying to understand why life wasn’t going as planned, and trying to sort out my working problems, I pulled a trick that you can get away with when you work in IT in the UK – I moved jobs – sometimes within the company, and at other times to other companies. I was in a repeating cycle of joining a team full of enthusiasm, taking on responsibility and delivering on it initially, then starting to see the problems in the company, getting stressed, moaning about it inappropriately, failing to deliver what I said I’d do and then moving on once more.

After six years and six jobs in three companies I was a senior technician, well paid, but out of control. In the last months of my third job I was given a junior management role that involved looking after a track of work, and four technical staff. It went badly wrong, and I left the company, and ultimately my whole working life in London behind.

A big problem for me was that I could see my peers doing well. Many of them grew up with the same middle class values and aspirations as me, and I watched them climb the corporate ladder. That step into junior management that I found impossible was typically tackled by my peers with ease. Why couldn’t I do it? Why was the whole process of people management so intolerably stressful to me?

In the months leading up to work exploding, I’d been introduced by an old friend to a lovely woman who lived and worked in the town where I had grown up in Yorkshire. Our relationship was going well, so I left London behind, and followed my girlfriend (later to be my wife) back to Yorkshire. After six months of doing very little, I took up work again, in a much less senior technical role. That worked better, and for a while I consoled myself that I ‘just wasn’t ready’ for a management position, but that in time I would be.

A little over a year ago the chance arose for me to become departmental manager for the company I was at the time working for – to fill the boots of someone who was leaving. I walked away and left the company. I knew that I wouldn’t be able to hack it.

Where had my middle class dreams gone?

Well, these days, of course, I know the answer. My aspirations of climbing the corporate ladder, and everything that goes along with that typical middle class existence are the dreams of a neurotypical person. I’m simply not neurologically cut out for management, and – lets be honest here – I never will be. I don’t understand office politics and I come across as being hopelessly naive and optimistic a lot of the time, and lazy and rude at others. I now know and accept this.

Why then can’t I accept that my dreams of having a typical middle-class lifestyle simply aren’t going to happen? Well, it’s like I said at the top – my aspirations have been derailed, but my train wants to keep on going in that familiar straight line, chasing the dream that I can’t possible achieve. I’m finding this dream surprisingly difficult to shake, and reality difficult to accept.

The gulf between dream and reality shows itself frequently to me in every day life. I work with smart people, who run their own businesses, and know others, younger than me, who are doing very well in management. I live in an affluent village, and see other parents dropping their kids at school from large new expensive cars. I see the large new cars parked outside large houses too. This is the lifestyle that I was brought up to expect, and yet I can’t realistically hope to have it.

Does that matter? Yes – it feels as though it does.

But does it really matter? No. Look at what I have achieved. I have a lovely and very underastanding wife, and two great kids. As a family we live in a modest but large enough house in a lovely village. We eat well and can afford to run two cars (albeit old and small ones), and have enough spare cash for the odd treat. What’s more, because I understand and accept my limitations and their causes these days, I am in a good position to make work choices in the future that fit my skills better.  Whilst I can be a trouble maker at work, I’m also generally good at delivering the sort of results that people want as long as I’m well managed, and with a bit of practice maybe I can keep the trouble maker at bay now that I know what triggers his appearance.

Life is good. Now if only I could get my train to take the branch line off to the left that leads to Satisfaction rather than going straight on towards Middle-class Central…

The quiet one

I wrote recently about dinner party that my wife and I hosted last month, and about how well it went. Well, last weekend the six of us present that night had dinner together again, with another of the couples acting as hosts.

The evening didn’t go so well for me this time. It wasn’t that I was too quiet, or that I felt too overloaded – I coped with both of those things reasonably well. The problem this time was that some of the topics of conversation hit home just how much of an outsider I am. The other guests, of course didn’t know or even notice this.

The big thing that the six of us have in common, and ultimately the reason we became friends is that we each have a son who started at the same local school in January this year. We’ve known one of the couples since before our son was born – they went to the same parenting class as us. We’ve not known the other couple as long socially, although our son went to the same nursery as theirs. The mothers in the other two couples are both teachers of kids their own age, but at different schools. Much of our conversation over the evening flowed around school annoyances, and in particular the social etiquette of parents at the school gates.

At the core of these discussions were how some parents were rude and cliquey. Our sons are in a class of nearly thirty, so on a typical morning, once you’ve discounted the kids that arrive with one of a couple of childminders, there are over twenty parents dropping their children off for my son’s class. Some, of course are friendly. Others, it would seem, aren’t. The five other adults at the table that evening had all been variously blanked, ignored, or cut short by some of the other parents in the school yard. There was a lot made of how incredibly rude this was, and much musing as to why various sets of parents would talk to each other but blank parents of other children in the same year.

This all went very much over my head, with a bit of a feeling of horror. I take my son to school once or twice a week on average, depending on my shift pattern. After nearly six months of this, I recognise only a handful of the parents. Many are still unfamiliar faces to me. I’ve never been blanked nor cut short by anyone – but then again I’ve never made the effort to approach parents that I don’t know and introduce myself. As for who is the parent of which child – well I haven’t got a clue, and nor do I know what the children or parents are called. It became very clear to me over dinner that my normal mode of operation in this sort of scenario was very out of the ordinary. I felt quite ashamed and embarrassed. I’m well aware these days that I’m a little different from the norm, but I’m not used to having it pointed out (albeit inadvertently) just how unusual and unsophisticated my interaction with other people is.

I felt awful during dinner, but I didn’t let it show. It felt like I was one of these parents who my friends (ok, not sure of the best word here – friends are a tricky concept for me) were laying into. I was being overly hard on myself, of course.

Whilst I don’t talk to the other parents in the school yard much, I will say hello back to folks, and even engage in a little small talk, as long as the other person is doing the hard work of thinking up the direction of the conversation. But this is always with people I know already – the adults from the dinner party, and a couple of others who I know because my son went to Nursery with their child too. I’m not being cliquey or rude. I’m just finding the social etiquette of the school parent role difficult to master. The odd thing, from my perspective is that until that evening, I didn’t think I was finding it difficult to master. I was just doing what I always do in this sort of situation. I thought I was doing fine.

I am doing fine. I’m doing as well as I can hope to do at the moment. I’m just different from the norm.

Of course what this thread of conversation also showed is just how well I do hide my AS. Not once was there any suggestion from any of the gang that I might fall into the camp of those who don’t communicate with them. But these people already know me, and will happily start and perpetuate small talk with me at the school gates. This of course means that they don’t see how I go out of my way to avoid talking to the other people, to those I don’t know.

But maybe those who I don’t know think I’m rude because I don’t talk to them.

I’m not. I’m just coping the best I can.