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

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

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

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

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

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

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

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

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

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

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

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

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

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

–

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

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

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

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

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

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Subtlety

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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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–

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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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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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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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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Like free newspapers everywhere (I suspect), it is a mixture of the major local news and sports stories from the last week, which previously appeared in the local daily paper; adverts, and a couple of pages full of births, deaths, weddings, memorials and coming-of-age announcements.

I always look at these family announcements with a sense of bewilderment and a little horror. They are so completely not what I would do. In a very real sense, I don’t understand the rationale behind people placing these messages for thousands of people to read.

If, in life, you were very popular and well known, I can see why your family might place an advert in the local paper to inform people that you’d died. So too  can I appreciate why you might want to remember someone who died on that day in a previous year, although I can’t imagine why you need the world to know that you are remembering that person, and clearly the person concerned isn’t going to be reading the paper and looking pleased that you’ve remembered. Those with large social circles may want to advertise the birth of their child too so that everyone gets to hear about it, but in a sense this feels to me like they are being rather boastful.

But why tell people you’ve got married? Surely those that want or need to know will already know, because they were at the wedding? And do parents really place adds to state that their children have turned eighteen for any reason other than to embarrass them? Not if the childhood photos used are anything to go by. I find that frequently these coming-of-age announcements tell a sad but all too modern story too. First there is the boxed advert from mum and siblings. Then there is the nearly identical second box from dad and step-siblings. This feels wrong – like the clearly now divorced parents are trying to get one up on each other. Competitive families seem to mention pets too (unless they have named their children oddly), and sometimes have boxed ads from various sets of grandparents. Why? What does it achieve?

All of this rang a bell with an article I read earlier in the week on Saja’s blog. Saja says:

I don’t miss people. For most of my life, that’s been my dirty little secret. What kind of horrible, cold, selfish person doesn’t miss the people she loves?

Well, me for a start. I found Saja’s sentiments to be spot on. This is how it is for me too.

I miss the things that people do when they aren’t around, but I don’t miss the person – not even those close to me.

I think this might explain why it doesn’t occur to me to phone people to stay in touch, or to arrange to go out and socialise. It’s part of that different experience of social interaction that I have versus non-autistic people.

There’s more too. I don’t miss people, and I don’t celebrate them either. I send people birthday cards because it is expected, and I’ve programmed my on-line calander to remind me to do so. I’m not sending birthday cards to celebrate the persons birthday, nor to say that I’m thinking about them.

It really does sound cold and selfish, doesn’t it?

But it isn’t – not to me. I’m not being deliberately selfish or unfeeling. I’m just being me – that’s just the way it works for me.

And maybe it explains my lack of understanding of the newspaper announcement pages. I wouldn’t make announcements in this way because I don’t naturally miss nor celebrate people.

But most people do. I shouldn’t frown on those who place the multiple announcements from their fractured families. Yes, they are telling the world that their family is broken into pieces, but they are also all stating that they care about someone and want the world to know it.

That’s quite touching, even to my autistic brain.

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Announcements

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I shouldn’t be. My body reacted no differently than it ever has done. What was different this time was that I was seeing it through the eyes of Asperger’s. My old explanations for the ways in which I reacted were cast aside, and I was able to apply some of what I’ve learned over the last year or so, and reach new conclusions.

All at once it was both satisfying, and a little alarming.

So what was I doing to push myself hard? If you don’t have autism, then this isn’t going to sound very strenuous. I was on holiday with my wife and two young kids.

I’m hoping that if you are an autistic parent, you’re nodding in agreement with me now.

I’ve learned over the years that life is exhausting. It hasn’t occurred to me very often that others don’t seem to share the same level of exhaustion as I do in fairly normal situations. When I have seen it, I’ve picked a ready made excuse – I’m unfit, or I’ve been working really heard at work over the last week, and this is just my body reacting to that – I’m sure you get the picture.

Don’t get me wrong – a week packed with activities and two small kids is hard work – no two ways about it, but I wasn’t tired at the end of each day, I was exhausted.

And perhaps for the first time in my life, I really thought about what my exhaustion was. Exhaustion falls into a category I have problems with – it’s really just a concept, and you have to create your own definition. I find concepts in general to be woolly and difficult to define. I found that over the years I had created a definition of exhaustion based on my own experiences, and that my definition wasn’t quite what I thought it was.

My exhaustion wasn’t physical – that was quite surprising. I’d kind of assumed that it was. Yet I could still have gone on a long walk at the end of each and every day of the holiday, despite suffering from my own definition of exhaustion. Sure, I’d prefer to slump into a sofa and relax, but if push came to shove, my body really wasn’t that tired.

It was my mind that was exhausted. It was over-stimulated and stressed, and wanted to stop having to think about everything. And of course, that is how I process social interaction – I think about what is being said to me, and react in what I consider to be an appropriate way. After a full day of two demanding young kids, new scenery to take in and lots of people around me chatting amongst themselves, my brain was waving a little white flag and asking if it might have some quiet time to recover a little.

A pattern emerged. I spent the day working hard, with all of my mental resources firing on full power. At the end of each afternoon, we’d return to my sister-in-law’s house where we were staying for the week, and I’d crash. I’d just slump onto a seat and do nothing for as long as I could get away with it. My brain would do it’s best to block out most of the noise and I’d spend some time reading a newspaper, or on the Internet. A little antisocial? Yes. Necessary? Yes.

After a while, I’d either need to make myself move again, to help with food, or to bath the kids, or I’d reach a point where I felt better again, and ready to join in with the real world once more. Left to my own devices, this took somewhere between an hour and ninety minutes.

Each day the pattern repeated. And then, on Saturday, we had a final day out, and I drove us home – a not inconsiderable four and a half hours or so of driving, mostly on motorways. Saturday was a long day, and we didn’t reach home until around 9pm. By the time the kids were bathed and in bed, and the car unpacked, it was nearer 10pm.

Boy did it show on Sunday. The kids gave us something of a lie in in the morning, and the first few hours of the day went ok for me. I felt tired, but on the whole not too bad. The problems hit around lunch time. My energy dipped, and my brain was telling me it needed quiet time, and lots of it. I became grumpy and snappy at the kids.

We needed to get some food in after our week away, and my wife, who will be looking after the kids single-handed for most of this week asked if she could go on her own, leaving the kids with me. I agreed. Logic told me it was unfair not to. I spent the next two hours playing board games with the kids on the carpet in the lounge – I didn’t have the energy for much else. This worked well – the kids felt engaged with the games, and for the most part behaved themselves. I felt wiped out the whole time, and much of the interaction felt like a lot of effort. What my brain really wanted to do, incidentally, was pursue a special interest. We’d visited the wonderful Brooklands Museum one day in the week, and my brain told me it wanted to go away and research the undeniably interesting history of the birth place of both British motorsport and aviation. I craved this, I’m sure, as a means of escaping from having to interact with anyone. I resisted.

Two hours later, my wife arrived home, and asked if I would cook tea. Feeling really overstimulated, and wanting to do nothing other than go somewhere quiet, I humphed and reluctantly agreed. I agreed, because it meant that I didn’t have to entertain the kids. On the whole, a good move.

After eating, we settled down as a family to watch a film. This, surprisingly, worked wonders. Our entertainment was Disney’s Herbie Fully Loaded. Easy viewing. The light-hearted nature of the film really helped to untangle my brain enormously. I could focus on one input, and forget all the others for an hour and a half.

Wonderful.

I’ve learnt a lot over the last week. It isn’t the fact that I had a busy week at work that means I’m tired when I go on holiday. I don’t feel wiped out at the end of a busy day of holiday because my blood sugars are low, or because I didn’t sleep well the night before. I experience all of these things because I have autism, and I spend my holiday time running at 100% of brain capacity. That’s why I crash at the end of each day. And that’s also why the day after I get home from holiday is really not at all pleasant. My brain needs a proper holiday – not the sort of holiday it had for the previous week.

I need to explain all this to my wife, but I’m feeling reluctant to do so. I’ve set the scene a little over the last day or so, but haven’t really tackled the issue head on. I feel silly and a little pathetic, perhaps because my wife too is tired after our week away. Like I said earlier – a weeks holiday with two small kids is hard work, whether or not you are autistic. So I’m not looking forward to explaining all of the above to my wife.

There’s good news here too, though. In seeing my tiredness for what it really is, I can work towards solutions that will help reduce the problem. I can’t rely on getting time alone to recuperate each day – not with a young family and tired wife, but perhaps we can watch more films together at the end of our holiday days. That really did work well for me, and it kept the kids amused too.

Has anyone got any other suggestions for activities we might try that would keep the kids occupied and allow me some time to calm my overstimulated brain down at the same time?

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A holiday?

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This one surrounds work.

I’ve been in the world of work  for the best part of fifteen years now, and over that time I’ve observed that many of my peers appear to be polymaths.

Nothing struck me as strange about this. All I was doing was comparing those I worked with to myself. Compared to me, a large number of the more able of my peers have excelled at a much wider range of skills than I have. I have accepted this as a universal truth, and at each new job I’ve been unsurprised to find people that were brilliant at many different technical skills. I dubbed these people as polymaths, because whilst I see their existence to be expected these days, I see their technical ability to be far wider-ranging than that which I consider average.

When changing jobs I’ve always been faced with interview questions such as “how are you with such and such a skill?” in reference to a skill area outside of my core competences, and I’ve always replied that I haven’t really had a chance to learn that skill, because it was always someone elses job, and jealously guarded. And that is how it has always seemed to me – except that if I really think about it now, the chaps that I would term as polymaths tended to have these skills despite it being someone elses job.

Maybe I assumed they’d learned those other skills in a previous job, where it wasn’t someone elses responsibility.

The problem with this picture, which is one that I’ve held my whole adult life, is that it is wrong.

Firstly, I think I need to point out that I’ve realised that my polymaths aren’t the wonderfully gifted individuals that I thought they were.

They are intelligent, for sure. But where I’ve been getting this wrong is my definition of what average is. Being unaware of my AS until very recently, I’ve always considered my own level of skill to be a good basis for establishing the average. I’m aware of my relative intelligence level from the point of view of exam ability and from an IQ test I took many years ago. I’ve used these factors my whole adult life to form the basis of where an average level of intelligence and technical ability lies.

But my assumptions have been wrong.

Whilst I may have an above average IQ and above average exam results, my ability to undertake work cannot be extrapolated from this information in the same way as an ordinary neurotypical person. I’m not neurotypical, and problems with my executive function and social interaction skills mean that I do not work to the ability of a neurotypical person with my IQ and exam results. This is new thinking for me.

So I’ve suddenly realised that I have gone through my life assuming that my ability to perform at work is that of a neurotypical person with my IQ and exam ability. And so my peers at work who clearly outperform me got dubbed as being polymaths – brilliant (from my point of view) in many technical streams at once. The truth is that they probably have a similar IQ to me and they probably did similarly academically to me too. These are smart people, without a doubt, but they aren’t geniuses – they are just neurotypical.

I can see another perspective on this too.

The reason that I have never learnt the many technical skills that many of my peers do is not because I am average and they are geniuses. Neither is it really because of my usual excuse that the job was someone elses and hence I didn’t have the opportunity.

It’s that I haven’t got room in my head to learn it. Let me explain:

My working memory isn’t like that of a neurotypical person. It’s small and very detailed.

This means that when I get down to a task – particularly an investigative one – I tend to do very well. I don’t see the big picture around it though, and when I move on to the next task, the specialist skills I have learnt for the task are mostly wiped out within a matter of weeks. Frequently I’ll be asked about some work I did a few weeks previously, and I’ll struggle to remember not only what I did, but how I went about it. This often produces strange looks from people – something which I’ve always felt embarrassed about, but I’ve never really considered why they might be giving the reaction they do until now.

They – of course – don’t have a problem with remembering the technical skills they were using in detail a few weeks ago. They have room in their working memory for many things at the same time, and can call each of these things up as and when needed. This is why they are good at many technical skills at the same time.

And this too, is why I’m struggling somewhat in my current job. There is just too much that I need to know. When I need to concentrate on one area of the system for a while, then I do just fine. But I’m expected to know and manage the whole system – and it’s huge, with many different technologies in it – and that feels extremely difficult to do. It goes without saying that the more capable of my peers manage to understand the whole system with apparent ease.

I can now see that this has been an issue at many of my jobs over the years. In the end I’ve tended to try and build a reputation around having specialist knowledge about the part of the system I’m working with, with mixed success. In jobs where this was possible then it’s worked well, I’ve felt confident and capable in my role, and managers have generally been very appreciative of the work I’ve produced. In roles like my current one, where I need to know about many diverse components in a large system, however, I feel inadequate and something of a fool and a fraud.

There is a clear message here. I need to work in jobs that allow me to become a specialist in a small area. That is what my brain is good at dealing with.

My future at work doesn’t – can’t – lie in my current role – it is slowly drowning me.

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The polymaths

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