A not-so-mild form of autism

I’ve read many times that Asperger’s Syndrome is a mild form of Autism.

In really simple metrics this is true, but at the same time, that is an entirely unhelpful comment.

My reasoning here is that if you tell someone that you have a mild form of autism, then they will likely think that it has little impact on you, especially as those of us with Asperger’s are often good at hiding most of the visible signs of it. Unfortunately, whilst the condition may present as mild, that’s a long way from the truth of how it affects those of us with it.

I’m happy to state that my Asperger’s doesn’t cause me a lot of the problems that more profound autism does – I seek out social interaction at times, and can communicate well with people a lot of the time, especially in writing – but it does still cause me a lot of problems, in practically every area of my life.

Over the years I have adapted and learned techniques like mimicry to help me deal and fit in with the normal world, yet just because I appear to fit in most of the time doesn’t mean that my life is plain sailing.

I don’t think I’m overstating things to say that my life has frequently been hard going, and I expect it to remain so. I’m not saying this to elicit responses of ‘poor you’ – it’s not about that at all. I’m just trying to point out how those of us with Asperger’s tend to have to fight our way throughout life just to live a reasonably normal existence. It’s hard work a lot of the time.

There are many things that make it hard work. Here are a few examples:

People are unpredictable to me, and they often act in ways I don’t see coming. You could view this as an over-trusting type of nature if you like – to me it’s simply that I don’t have much of a natural ability to read people. Sometimes they can read me all too well, and take advantage of that. This unpredictability has caused me considerable anxiety and depression over the years.

Work is difficult – it is expected that I’ll be flexible and work on various different projects at the same time, and be able to literally drop something and immediately run with another if the need arises. I find this very difficult to do, as I’m much more naturally oriented to work on a single thing in immense detail. Time runs away with me, and my forward planning skills aren’t great either.

Phone conferences and meetings with more than a couple of other people in them stress me enormously, as I can’t follow input from multiple people well, and I suffer from the slow and immediate data processing style that many Aspies seem to have. This means that I may be slow to come up with timely input into meetings, and tend to get left behind when meetings move onto new subjects, as I’m still processing what was being said a minute or two previously. Allow me go away and think about what was said in a meeting however, and I’ll often provide valuable input as an afterthought.

As forward planning is a constant battle for me, providing a fun and relaxing home life for my wife and kids is something of a constant battle. It’s extremely unusual for me to think ahead and book a night out with my wife – even something straight forward like going to the cinema or out for a meal. What are we going to do this coming weekend? I don’t know, and I still won’t on Saturday morning, most weeks. Family holidays don’t occur to me either, so it usually falls to my wife to pick up the pieces and be the constant social secretary of the family. Doing all of this work on her own annoys her, and rightly so. It frustrates me, as I don’t neglect these things on purpose, they simply don’t occur to me.

My lack of natural social flair and the anxiety that has sprung up around it makes my life difficult too. I go through short patches of trying to force myself to be more sociable, usually by accepting invitations to social events via tools like Facebook. I typically don’t enjoy them though. The social world is very alien to me, I feel dislocated much of the time, and tend to get drunk far too quickly in the hope that it’ll remove some of the feeling of otherness from me. It rarely does. I feel the normal feelings of needing to connect with others – the need to have friends, yet in reality I don’t have any. Barring my wife, not one true friend. That hurts, yet despite many efforts over the years I’ve not succeeded in keeping friendships going over any length of time.

Whilst the above gives a flavour of some of the ways that Asperger’s has impacted on my life, there are many many more examples.

With all the above doom and and gloom, you might expect me to hate Asperger’s, and to jump at the chance to look for a cure.

Not a bit of it.

Firstly, I don’t believe there is a cure for Autism Spectrum Disorders – I think they a genetic cause.

Secondly, and most importantly, Asperger’s makes me who I am. It doesn’t define every aspect of me, but it has had a large input on making me the man I am today. And despite of the problems I face, I like me. I’m a worthwhile person, and my life has purpose. I have a lovely wife and two great kids.

I may have had to battle through life, but so far I’ve won. I may not be financially rich, but I feel rich as a person. I see the wonderful tiny repeating patterns in leaves on trees, and the beautiful colours in spring meadows, and all sorts of other things that most people seem to overlook.

Asperger’s may be mild when compared to some other forms of Autism, but it’s affect on those who have it is far from mild – it’s all encompassing and causes life-long challenges. At the same time it bestows unusual and useful skills which can provide a lot of pleasure both to ourselves and to others.

I wouldn’t change my Asperger’s even if I could.

I wouldn’t call it a mild form of autism either, it’s too pervasive for that.

The Aspie style of writing

Can you recognise an Aspie from the way they write? I’m fairly sure you can, if you know what to look for.

My own style of writing has always attracted attention. At school I did well in English classes, especially where creative writing was required. My homework assignment stories were often longer than those of my peers, and I suspect they were more elaborate too. Written assignments in other school subjects tended to produce reams of writing too, as did exams. I remember using two or three extra sheets of paper on some exams, where most of my peers wouldn’t need any extra.

So, my writing is wordy. I notice that I put in lots of detail, and I try and clarify everything so that you couldn’t possibly misinterpret what I’m saying. I’m also very careful to put extra words in to make it clear that something I’m explaining doesn’t happen all the time – only typically, or some of the time. Look – I even did that on my last paragraph:

Written assignments in other school subjects tended to produce reams of writing too, as did exams. I remember using two or three extra sheets of paper on some exams, where most of my peers wouldn’t need any extra.

It feels to me like my writing is very exact, yet at the same time is quite wishy-washy – I’m almost weaselling my way out of committing to hard limits.

Then there’s the passion. I feel my writing is passionate – it is one of the main ways that I express emotion. I feel very passionate when I write, and when I revisit something I wrote a while ago, I can usually still feel the passion that I had when I wrote it. I wonder if it comes across to those of you who read what I’ve written?

Another thing I’ve noticed is how my work flows. I usually have an idea about the general direction that an article will take, but the words almost write themselves as I think them – I don’t plan out the article before I write it. I think this makes quite a distinctive trail though the article – you can almost see the different directions that my thoughts take simply by following the words. I like the word flow to describe this – it seems to fit well.

At work, my writing still attracts attention. I’ve received many kind comments and expressions of surprise over the years about how well I’ve described a particular work issue, or how my change request documentation covers all eventualities.

I’ve also attracted the wrong sort of attention for my writing at work too – I tend to turn to writing when I get to the point that I’m frustrated with the way the business is run, or how the product is being developed. In these cases I tend to be far too honest about how I see things, which has on occasion lead to friction with management, who needless to say don’t like having the faults with their systems and products pointed out to them in such an unexpected and abrupt yet precise fashion.

Clearly the complexities of my writing style are unique to me, but do the general points that you can pick out apply to other Aspies too?

Well, I RSS quite a few blogs written by other Aspies these days, and I think I can see a pattern.

Many posts that I read are long. They end up using a lot of words to describe what is often a simple notion or a small piece of a bigger jigsaw puzzle. I suspect, that like me, other Aspies often naturally wish to put a lot of detail into what they write – they don’t want to be misinterpreted.

I said that I feel passionate about my own writing, and I get the impression from their writing style that other Aspie writers often do too. Of course, this isn’t solely an Aspie trait – I’ve read plenty of non-AS writing that clearly expresses passion in it too, but I have a hunch that the number of passionate Aspie writers is higher than the general average.

Finally, some other Aspie writers that I read obviously use the same sort of flow technique as me when they write. Like in my own work, I can follow their thought processes in the words they write, often quite obviously.

Do non-AS bloggers that I follow use any of these techniques? Well, maybe one or two use a selection from time to time. I do, however think that there is often a general pattern to the way that those of us with Asperger’s express ourselves in writing. It’s a distinct and recognisable pattern, and it’s different from the patterns used by non-AS writers.

Or maybe it’s the subjects that we write about that give it away…

Have any of you noticed this too?

Anxiety, my companion

There’s a medical word for it – comorbidity. I dislike the word, so I’m not going to use it. Instead, I’m simply going to talk in terms of additional diagnosable conditions that run alongside Asperger’s.

I’ve digested a lot of information about Asperger’s – from online resources, and from some books too. Something that stands out is that folks with Asperger’s have a high probability of having some other diagnosable condition as well. The general consensus would appear to be that depression and anxiety are the most common of these, with other conditions such as ADD and OCD hot on their heels.

I can’t say I’m surprised by this. I’ve suffered with anxiety from as far back in my life as I can rationally remember, and certainly from at least my early teens. Indeed it was my learning to understand and cope with my anxiety that ultimately lead to my realisation that I had Asperger’s.

My anxiety comes and goes in waves, depending on the degree to which I’m feeling stressed, but ultimately it’s never far away. At times I’ve been depressed too, and it’s not uncommon for me to find it difficult to concentrate on important activities.

Now that I understand the mechanisms of Asperger’s Syndrome, none of this surprises me.

Why? Well, put yourself in my shoes. The world has never quite made sense to me, and people have an uncanny ability to behave in ways I don’t expect. I’m different. I don’t feel like I fit in, and until recently I had no idea why any of this was the case. When the world is always at least a little perplexing to you then it’s not difficult to see how this might make you stressed and ultimately anxious.

My anxiety weaves throughout my whole life. It has a more profound impact on me than the Asperger’s itself does. My Asperger’s means that I have difficulty with many forms of social interaction, but add in a bad day of anxiety, and something simple like picking up the phone to call someone can be practically impossible.

So, whilst it’s Asperger’s that makes my life a little different from the norm, it’s actually the anxiety that the Asperger’s induces in me that makes my life more difficult than it needs to be.

I can happily embrace the Asperger’s, but I’d rather see the back of the anxiety. Whilst I have techniques these days that help me to reduce and control my anxiety, I can’t see me ever shaking it off completely. After all,  people are always going to seem unpredictable, and the world is always going to seem a little odd to me.

The new breed of self-diagnosed researchers

One day, I realised I had Asperger’s Syndrome.

How did I reach this conclusion? I read an article on the Wikipedia, and saw how the traits that are common in the condition were a good fit for me. I made a leap of faith, and I’ve not looked back since.

Once I’d done this, I started to gather other sources of information from the web. First came factual articles from professional bodies that had an interest in Asperger’s, and then came the rather more personal blog accounts from people who wanted to share their thoughts on a condition they lived with. AS became a Special Interest of mine.

Writing is my favourite means of communication, the one that I’m most comfortable with and through which I find it easiest to express myself. Writing is my thing. I guess it was natural then, that I too ultimately chose to blog my thoughts and findings about Asperger’s. I started out doing this  because I thought that others might be interested in what I had to say.

And it was at this point that something unexpected started to happen. I started to make connections.

In the first instances, writing about how I saw my condition allowed me to have revelations about how the condition actually worked. By exploring traits and how they applied to me, I was able to see new and unexpected aspects about how they and I worked. I wrote these down, and published them for all to see. From the comments I’ve received, some of these have clearly caused similar thoughts and feelings in others, which is great to see – it makes me realise I’m not alone in feeling like this.

Eventually, I started to make connections through what others were blogging about AS too. My blogging peers all say things in slightly different ways, and often that now acts as a trigger for seeing some aspect of how the condition affects me in a new and exciting way. I blog about these connections too.

What I’ve realised in the few short months since I started writing here is that I seem to have something of a talent for seeing my own condition in a huge amount of detail. If I think, and get my thoughts on paper, then I can often see some really quite striking things about how Asperger’s really works. It’s far from being just me that seems to have this ability – those who write the other AS blogs that I read almost all seem to have it too, which I find fascinating.

I’m starting to think that the ability to see how our own condition works in the minutest of detail is quite an overlooked Aspie skill.

One article in particular has stood out to me this week, that I think illustrates this phenomenon very well. Rachel Cohen-Rottenberg did a review of the Theory of Mind test, and reached what I thought was a quite surprising, but astonishingly insightful conclusion. You won’t find Rachel’s theory in a book to the best of my knowledge, but it really rings true with me. Go and read it if you haven’t already – you won’t be disappointed.

As Rachel says in the above article:

I would much rather hear an autistic person describe his or her own experience than hear a neuro-typical researcher making statements about how autistic people view the world.

How wonderfully well said. I have a great deal of respect for those researchers who are dedicating their working lives to help understand our complex condition. Ultimately however, unless they have an ASD, they can’t fully understand how it works, and this must colour their judgement to a degree.

I genuinely think that the professional Asperger’s researchers would do well in subscribing to all the AS blogs they can find – because they will find a wealth of information that they won’t find elsewhere – information that they won’t get simply from the therapists chair. This is information that has often been formed via a melding of thought and writing – two things that foks with AS often have a skill with.

We can see things that they can’t, and what’s more, we are already writing about these insights.

The professional researchers really should be listening, yet sadly, I suspect they’re not.

If I’m wrong, perhaps you could let me know, by writing me a comment.

Could I explain face to face?

I’ve taken a look back at what I’ve written here over the last couple of months and I’m a little amazed at myself. There’s a lot of powerful and profoundly personal thoughts expressed, and some pieces of writing that I’m very proud of.

My little retrospective through what I’ve written has left me wondering if I could have explained the same thoughts and feelings face to face with someone. With anyone.
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Man of Science, man of Art

I grew up as a man of science.

Both my parents worked in the sphere of science – they met when they both joined a large corporate producer of chemicals as their first jobs out of University.

My mother later retrained as a teacher – more specifically a chemistry teacher, and my dad stayed with the same chemical company his whole working life.

So, I guess it felt like science was in my blood. I enjoyed the science disciplines at school, and got good grades in all of them. Chemistry and physics made sense – they were logical and predictable. They explained how things worked, and what’s more you got to demonstrate that this was the case. That suited me.
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Bulldozing new neural connections

The ever thought-provoking John Elder Robison has an interesting new article on his Look me in the eye blog regarding some research work that he is involved in as a test subject. The experimentation involves looking at brain plasticity, which is the ability for your brain to make connections – to learn things – and whether this ability differs between those on the Autism Spectrum and not.

I found the article, and the research behind it fascinating.

The Harvard team behind the test are finding that indeed there does seem to be a difference, with those on the Spectrum better able to make new connections than those who are typical. John uses the analogy that he has a bulldozer for clearing new paths through his brain, where as those without Autism have machetes.

This rings true for me, and coincidentally I touched upon my ability to learn new things easily in an article I wrote just a couple of days ago.

If you give me something to learn that enthuses me, then I will learn it backwards and inside out in a surprisingly short period of time. Clearly, the mechanisms that surround special interests come into play, and I will consume and store many facts about the subject very easily.

This is a skill that comes in very useful at work, where I can be given something to investigate, and I’ll do a good job of it quickly, without fuss, and with a detailed written report at the end. I may even appear excited as I dig out details, making all sorts of little noises and giggles. It’s a skill that I’m valued for at work, and it’s one that in my experience people without Asperger’s seem to lack most of the time.

The other thing that grabbed me was John’s description of how his son can learn things easily, but if he concentrates on more than one thing at a time then the data gets mixed up and confused. It’s great to hear that others experience this too.

I’ve always described this attribute of my character as being ‘linear’. I do things one at a time. I learn about one subject at a time, and I experience and express emotions one at a time too. When I tackle a new project at work, I find that it very quickly tramples on my ability to access data from the previous project. Someone will ask me me about something that I knew in detail the previous week, and I find I have to refer to notes I took to jog my memory. It’s not that I’ve forgotten the information, it’s just that I’ve lost the ability to recall it easily – the pathway to accessing it has become disrupted by my new project. Once I’ve looked it up in my notes then the information comes flooding back. This feels very like the confusion and disorganisation that John describes in his son.

It’s wonderful news that people are researching differences in thought processes like this, and that they appear to be finding real evidence of how the differences work.

If you’ve not read John’s article, go and do it now – it’s a great read.

Tiredness

I dare say that thinking makes everyone tired.

The trouble with Asperger’s is that a lot of what makes a typical day for everyone – meeting people, having conversations, driving places etc, doesn’t work quite so automatically for me. If you don’t have Aspergers, then instinct and intuition govern many of the conversations you’ll have during the day, and the daily drive to and from work is done on automatic pilot.

I find that with Asperger’s it’s not quite like that. I don’t have as much natural ability to guide my conversations, and I need to concentrate and observe to drive well. These sorts of tasks require brain power on my part – more so than for someone without AS. Come the end of the day, this becomes very apparent. A typical day at work, with a 25 mile commute either way will leave me feeling very tired, and I’ll often be uncommunicative for a while after arriving home.

This has always happened to me, but I didn’t really notice it until my wife and I had kids. In the immediate aftermath of our Son’s birth, we were both very tired, and understandably so. However, I never really shook the tiredness off. I kept saying that in a few months time I’d have more energy, but I never did. Eventually this started to seem odd, and I wondered why I was so tired all the time. It wasn’t until I started to look at my Asperger’s that it made sense.

My parents live at the other end of the country, and since we’ve had kids we drive to see them maybe once or twice a year. I find that when I arrive after 5 hours or so of driving I’m not just tired, but exhausted. I can barely string a sentence together for several hours. My daily commute takes it out of me too. For the first 30 minutes or so after getting home in the evening, I just want to sit down and not talk to anyone – I feel like I need to recover. In the days before kids this went largely unnoticed, as there wasn’t anything like the early evening routine of baths, stories and bed that we have now.

It’s clear to me, that the interactions of the day at work – meeting people, talking on the phone, social chatting etc – all take it out of me. I have to think about the flow of the conversation, and frequently find myself trying to think ahead about how the conversation will go. What do I say next? What are they going to tell me next? How do I respond? Would it be right for me to say something at this juncture?

The tiredness that the driving causes is a little different, but has a similar source, I think. I have to concentrate and be observant to drive. I find that my eyes are forever focusing on different things. I look at the mirrors a fair bit, and the road ahead, of course, but I also find myself following the patterns produced by other cars – the routes they take when changing lane, the differential in speed between the lanes on the Motorway, and even silly little details like what spec the cars I pass are, and what their obscure personalised registration plate might be trying to convey. So I am using a lot of brain power again – this time to process a constant stream of important inputs such as the speed of cars ahead of me on the road and whether they might intend to change lanes, and also large amounts of irrelevant information that I naturally gather and don’t seem to be able to filter out.

I have been wondering how this fits with an often talked about aspect of AS – sensory overload.

It’s definitely the case that the more interactions I have during a working day, the more tired I’ll be at the end of it, and if I drive a long way I feel far more exhausted than after a commute. I do think these are sensory overload issues, because I have to process all the data that my senses are gathering, regardless of whether it is useful.

Perhaps the key here is that I won’t know whether it’s useful until I’ve processed it, so everything has to be gathered and processed, on the off-chance. I get tired because of the brain power required to do this, and that leads to me shutting down to a degree afterwards, to try to recover.

Logic wins every time

My interaction with the world is governed absolutely by logic.

I know that this applies to everyone, but from simple observation I see that most people can easily override the logic they apply to things with a little common sense. I rarely manage to do this.

This was most-recently brought home to me a little over a week ago.

We live close to a miniature steam railway, and enjoy taking the kids a few times a year to see the little steam trains and to take the bumpy ride a few miles up the valley and back. So when I collected my daughter from Nursery a couple of Thursdays ago, and was handed a flyer and a couple of money-off coupons for the railway, it seemed like a great way to spend one of our days on the coming weekend. The flyer advertised that there was a special food and drink fair in the railway grounds that coming weekend, and the coupons would get the kids on the trains for free, cutting the cost of the day by about a third. Great! We decided to make a day of it.

Then on Friday I saw it. The coupons had ‘Not valid for special events’ printed on them.

Ah. So we wouldn’t be able to use the tickets that coming weekend, as it was clearly a special event. What a shame. We decided to go anyway – we hadn’t visited since last summer, and we’d all enjoy it.

So, Saturday morning came, and we rolled up to the car park. I went to buy the tickets, and what should I see, but a pile of the ‘kids travel free’ coupons sitting by the till. I was immediately very angry with myself. Why hadn’t I brought the coupons with me, on the off-chance that they were accepting them?

When my turn came to be served, I pointed to the coupons and said, “Are you accepting those coupons today? We have a couple, but didn’t bring them as it said not valid for special events”. The woman enthusiastically said “oh yes!”, and then looked embarrassed, as she realised I didn’t have the coupons with me, and she didn’t know what to do. She called over her boss, and I explained again that we’d got the coupons earlier in the week from my daughter’s nursery, but hadn’t brought them due to the special events clause. The boss was apologetic, and said that they meant to cross the clause out of the ticket but had run short of time and had forgotten. The coupons were intended for this weekend to help draw the crowds in to the food and drink fair. He kindly agreed to let me have the money off without the coupons.

We had an enjoyable day, and the sun even put in a few brief appearances to help us enjoy the spring countryside.

This is always how it goes with me. Other people clearly assumed they’d be able to use the coupons.  It’s not a great leap of common sense to reach this conclusion, yet I didn’t, and frequently make judgements like this using a very rigid logic. Hell, even if you didn’t think the coupons were going to be valid, you’d still take them with you and ask, wouldn’t you?

For me logic wins every time, even when the application of a bit of common sense would result in a different outcome. This is often very frustrating.

Mixing special interests and camouflage

Via a friend’s twittering, I recently saw a link to a new digital camera that was coming out. I clicked through and took a very brief look. The page I saw was this.

I’m not a photography fanatic, but I do like gadgets. I quickly took in the big facts – it’s one of those ‘cross over’ cameras that looks like an SLR, but doesn’t have interchangeable lenses. It has a 24x zoom – goodness that’s a lot. It wasn’t much cheaper to buy than an entry level SLR. I didn’t read the full article, and in 30 seconds, the page was closed, and I was on to something else.

I mention this, because a week or so later this camera was to make a re-appearance in my life.

I was sitting at home chatting with my wife. Our conversation was about nothing in particular, but at one point it touched on some photographs we’d taken recently.

Ding!

My brain had made a connection back to the camera I’d seen a week earlier. Compulsion overtook me. I had to tell my wife about this new camera that was coming out with the amazing zoom lens on it. So I did – badly. I butted in with something like, “There’s a new camera coming out soon, Pentax I think it is, with a 20 something zoom lens on it”. My wife takes this sort of interruption in her stride these days, because I make them frequently.

She made a dismissive comment such as “oh that’s nice”, and then carried on with whatever the conversation was about at that time. I couldn’t tell you what we were actually talking about, because my brain was still off at a tangent about the camera.

How big was that zoom? I knew it was 20 something, but I couldn’t remember what. Was it a Pentax? I think it was, but I can’t be sure. What if I’ve told my wife the wrong make? Our current camera isn’t very good. Maybe we should think about buying one of these. Or maybe a proper SLR – they aren’t much more expensive. Then the kids could use our not-very-good compact – they’d enjoy that.

In and amongst these thoughts I held the conversation with my wife going. My camouflage saw to that pretty much automatically. I bet my input wasn’t scintilating though.

This is very typical of how I work. Much is made in AS literature about how we have ‘Special Interests’ that we can talk about for hours on end. Much is also made of how we use a social camouflage where we use a pattern match mechanism to give a canned response to a given situation or line of questioning.

I think my behaviour in the above scenario is basically a combination of both of these things, and kind of a back-firing of the camouflage mechanism at the same time.

The moment of pattern match and subsequent response is the camouflage mechanism working. The talk about photographs triggered the response about the camera I’d recently read about. The compulsion to speak and the thoughts that followed are special interest.

But cameras aren’t one of my special interests, despite the response being very typically special interest. I guess these two mechanisms are so deeply ingrained into how I work that my brain decided that this combination was the correct response to the situation. Even as I was saying it, I knew it wasn’t, but the compulsion was too strong to ignore.

Do any of you experience this combination of traits?