Misguided lobbying

Perhaps I’ve been deliberately avoiding it, albeit subconsciously.

Perhaps it’s just something of a fluke.

Whatever lies behind it, it’s fair to say that I’ve never read the various sites on the web that advocate that Autism is a curable disease, and that vaccines cause autism.

That’s changed today, and has proven to be something of an eye opener. At the tail end of last week, I supplemented my Google Reader list with some custom streams from Google News, gathered from some ASD-related search terms. This threw a number of pages at me this morning, some of which were on websites I’d not seen before.

I’m not going to name them, because I’m a strong believer in free speech, and they are entitled to their opinion. I have to say, though, that what I read horrified me.

My own investigations of my Asperger’s have lead to something of an inevitable conclusion – that Autism Spectrum Disorders are genetic, and that they flow through families. I say inevitable, because I can see signs of other family members having ASDs. In addition, my different ways of thinking are so deeply ingrained and natural to me that I can’t believe that they are purely a learnt behaviour, nor the effects of some vaccine gone wrong.

Living in the UK, it is impossible to have escaped the Vaccines cause Autism debate over the last few years. Indeed, in the years before my own discovery of AS, my wife and I chose to have our son vaccinated privately so that he could have separate Measles, Mumps and Rubella jabs. I’d researched what little there was of the pros and cons online, and personally didn’t believe in the suggested link; but my wife did, and I was happy to do what was needed to put her mind at ease.

In the years since then, it seems that a whole industry of new sites has been born which are far more organised and more professionally run that the information that used to be available. The sites I saw today argued very strongly that both MMR and other vaccines were behind autism, and that we were on the verge of an epidemic of autism that was caused by the vaccines.

Wow. These websites appear to be thinly disguised lobbying tools. The apparently well-meaning adults who write for the sites appear to predominantly be parents of children who have been diagnosed with ASDs. They feel that their viewpoint – that vaccines caused the autism in their children – is right, and they passionately want to change the world view. They are on a crusade.

Well, the purpose of my site has never been one of lobbying nor a crusade to change anyone’s mind. I present the facts as I see them – just as their sites do – but I hope that those who visit mine will make up their own mind. I speak as someone who is affected by Autism, not as a well meaning, but neuro-typical adult. I seek the understanding of others. I don’t want to change the world, and I certainly don’t want the websites I’ve seen today to claim to be speaking for me.

Incidentally, as a parent, I find it very easy to see how you could think that vaccines cause autism – I really can.

After all, vaccines are given to children at around the age where symptoms of ASDs often start to show.

Every child develops in different areas at different speeds. My son, who is now five, has always been great at motor skills, such as riding a bike without stabilisers before his fourth birthday, but got his colours wrong until very recently. My daughter, who has just turned three had already got colours mostly sussed, uses a broader vocabulary than her brother did at the same age, but is less good at the motor skills. This is normal. My daughter has the occasional toileting accident, despite having been potty trained during the day for well over six months. Again, this is normal. I think you have to look at the big picture. Both of my kids are coming on in leaps and bounds.

But could I see this when they were a year old? If you really think about it, it’s only at that sort of age that children really start to communicate with you in any way that isn’t smiles or crying. They’d learned to sit up and crawl, sure. They also made repetitive single syllable sounds. But beyond that? It’s much more difficult to see real progress. So I personally find it difficult to see how someone can really see regression in a one-year old, who has just had the MMR jab.

If you were brought up without the strong grounding in science and logic that I have, it is easy to turn better detection of autism disorders into an epidemic that doesn’t exist. After all, when I was growing up, there was no diagnosis of Asperger’s Syndrome. School teachers weren’t on the look out for kids that had ASDs – indeed the autism label was really just applied to kids on the very profoundly affected end of the range.

That doesn’t mean that it didn’t exist though. I had Aspeger’s when I was a dazed seven year old at school wondering why everything was so confusing. I had it when I was born. But I wasn’t one of the Autism statistics in those days. And guess what? I’m still not. I don’t have a formal diagnosis, yet I still have Asperger’s.

Like me, many tens of thousands of adults are realising they have an ASD every year. Not because they have been vaccinated then developed a condition, but because they’ve always known they have something different about them, and they are now empowered to find out what it is due to the wonders of the Internet and books that have been published. These are not new cases of Autism. These people have always had it.

It is also absolutely true to say that more children are being diagnosed with autism than ever before, but logic says that anything other than this would be absurd. Far more is known about autism now than even fifteen years ago, so more and more of those like me, who would have slipped through the net when I was a child are now being diagnosed at a young age.

An autism epidemic? Give me a break. It’s just more comprehensive diagnosis.

What I’ve read today has shocked me. These people seem determined to persuade the world to adopt a misguided view of Autism disorders. What’s more they seem to be sending a message that vaccines in general are bad, which is likely to lead to more deaths of children in the long term, as measles makes an unwelcome return.

And what about their poor children? Instead of being accepted for who they are, it would seem that they become part of a freak show, with the drug companies as the bad guys. Asperger’s isn’t a terrible thing to have – it just means you are different from the norm. I remember how I felt growing up. I can’t imagine what it must be like to grow up like that but to think that your differences were caused by an injection you had when you were a year old. How depressing – you will forever think that you could have been ‘normal’ if it wasn’t for that injection, and you’ll always have hope that the next special diet or treatment you try may remove the autism.

What I’d like to see is better understanding of those who are affected. I’d like money to be spent to provide help to those who need it. I sure as hell don’t want sites like those I saw today claiming to represent people like me.

I think, however that they might just have pushed me into action. I’ve seen a few autism advocacy sites, and I’m going to read more and look to offer them my support in some way.

Incidentally, by the time my daughter was due her MMR, the big holes had appeared in the Wakefield report, and we elected to give her the tripple jab. My son has also since had his MMR booster, as the tripple jab this time.

Labels and preconceptions

Are labels important? Does applying a label of Asperger’s Syndrome to myself help or hinder me?

I spent thirty five years without a label to describe my differences, but at the same time I couldn’t escape labels. Those years were hard at times, and confusing too. Without a name to attach to how I was, I was left wondering if I really was different from the norm. I certainly perceived differences between myself and my peers, but maybe I was just lacking in intelligence, or had an odd sense of humour. You see – there we go already – lacking in intelligence and odd sense of humour are really labels that I was applying to myself to see if they fitted. They never quite did.

I think we all need to be able to define ourselves. This labelling of characteristics not only confirms who we are and what makes us tick, but it also tells others a lot about us in very few words – he works in IT, she’s a mother to five kids, he’s single and keeps cats, she’s a doctor. Not only do these labels pinpoint one fact about a person, they also open up a set of preconceptions about other aspects of their lives. These may be right or wrong, but it seems to be a trait that we all – aspie or not – share, to parcel assumptions around the labels we know. I bet the doctor is comparatively well off financially. Is the keeper of cats lonely? Does the IT person have social interaction issues? Is the mother of five children catholic?

When I attached the Asperger’s label to myself, I felt complete for a while. Suddenly a large set of the characteristics that made me who I was could be parcelled under one label – and not only that, for the first time in my life, it was a label that was comfortable – it felt right, and it fitted.

The internal dialogue that the simple attachment of a label has opened has been immense, and very satisfying. In six months or so I’ve explored areas of my behaviour and my interactions with people that I had never seen in any detail before. I now understand a great deal about Asperger’s, and far more importantly, how it colours my life, and I continue to learn more each day. I can’t state enough just how important I feel this is in allowing me to accept who I am, and give me the best possible chance to move onwards in my life in a positive way.

So – the attaching of a label of Asperger’s to myself has been both a powerful and positive catalyst towards understanding and change.

The flip side of this coin, of course is how others perceive this label that I have. I’m much more wary of this side of things.

As I mentioned above, people tend to parcel assumptions around labels, based on their preconceptions of what a given label means. With a label like doctor, then everyone has an idea of the sort of lifestyle that typical doctor has, and therefore whilst still being a generalisation, it’s probably not wild of the mark to assume that any given doctor is financially well off. However, with a label like Asperger’s or Autism, then there is far more of a problem.

I can only speak for the UK here, but the understanding of Autism Spectrum Disorders in the general populace is very low. Everyone has heard of autism – the vaccines scare of a few years ago has seen to that. But ask someone what autism is, and I doubt you’d get a very clear response. I suspect you’d get told more often than not that it makes children withdrawn and uncommunicative. That’s some of it, of course, but far from the full picture. Ask what Asperger’s is, and I’d guess that most people in the UK wouldn’t know. I didn’t until I read up about it and realised I had it.

Saying to someone here in the UK that you have Aspeger’s is quite likely to lead to you having to qualify it by saying that you have a form of autism. This in turn is quite likely to fall prey to the wrong or very incomplete picture that people have of autism.

And this is why labels can prove to be unhelpful, and probably why I’m not running around making my own label public to those close to me just yet.

Instead, I’ve decided I need a plan. When I do make my label public, I want some way to allow those that I tell to easily overcome their preconceptions of what my autism might mean. This blog has a lot of useful info on it, but I can’t ask them to read it – it’s far too long. My ability to verbally explain isn’t wonderful, so that won’t work well either.

What I intend to do is this: I’m creating a concise version of this site. It’s a single page into which I’m going to try and distil what I’ve learnt about Asperger’s. I want to create something that someone who knows nothing about Asperger’s can spend no more than five minutes on, and leave with a good grounding. This way, I can point those that I tell at the page, and hopefully they’ll choose to visit, and leave with some understanding.

I’m not great at keeping my writing concise, but I’m going to treat it as something of a list and make a concerted effort. You can help too – visit the page, read what I’ve written and tell me what I’ve missed. How could I improve some of the points?

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.

Getting things done

I used to be terribly disorganised, and failed to get things done that I really had to do. My memory for tasks appears to be very transitory – no matter what I do to try and consciously remember things, the list slips quickly out of my mind, and I have no clue what I was supposed to be doing, often despite much thinking.

I thought there would be an easy solution to this – create and use some form of written to-do list. I figured this out many years ago in my early years of work, and over the years, my process of list writing has evolved and been refined many times. I’ve flirted with computerised lists and various book methodologies, but have always ended up back with a daily hand written list that I create each morning, because it works best for me. The list is very regimented in the way it is written down, yet changes subtly every few weeks as I decided to use some new tweak that I think will help me.

So, I get things done these days, yes?

Well, kind of.

There is no denying that having a to-do list has improved my ability to concentrate and complete work enormously, but actually it’s ended up highlighting another issue too.

I have a terrible problem with procrastination.

With my to-do list constantly with me, I know what work needs to be done over the course of my work day, and I also know which the higher priority items are. So I tackle those first, don’t I? Well, sometimes. If there are high priority and easy items, then I will certainly do those first – right after I’ve spent some time on the Internet, checking the blog traffic, and reading some items from my RSS reader. I am, after all, a man of routine.

Then I’ll try and force myself to do the more complex high priority issues. Sometimes I manage, and other times I fail.

Often the barrier is obvious – perhaps I need to phone someone about a subject I’m not hot on, or to ask someone to do something that they aren’t going to like. I find scenarios like these difficult, and will actively try and avoid them.

Then there is the big problem of not being interested in the task. This, I think is the crux of the issue, and I also think it’s part of my Aspie make up.

If I’m not interested in a piece of work, I will find one hundred and one reasons not to start doing it. These reasons seem important and valid, and are very difficult for me to overcome. They are in reality neither important nor valid. For example, I’ll reason to myself that I need to do another task first, as it’s actually more important. Hmmm. Then why did I give this task a higher priority than the other on my list this morning? I’ll even go as far as to change the priorities I’ve written down, as though to justify to myself that my task avoidance is legitimate. Or perhaps I’ll decide that I can’t start until I’ve confirmed some aspect of the task with someone else in the office. In this case, I’ll then start to fall back on worrying about what I’ll ask them. I’ll need to get my story straight before I approach them. Then I’ll check my email. And browse the Internet a bit. When I finally get round to doing the asking, it’s not uncommon for hours to have passed.

I used to think this was normal. Everyone does it, don’t they? No. I’m an observant chap, and whilst my colleagues will flirt with a little procrastination, they don’t have a problem of my magnitude. They can all get on with tasks, regardless of how hard or boring they are – they chip away until they’ve broken things down into chunks they can manage. When they hit a bit they find difficult then they ask the relevant person. Everyone has jobs to do at work that they don’t look forward to, but people still do them.

It’s probably worth pointing out at this juncture that eventually, I do start, get on with and complete the tasks that I put off. I can only put off jobs for so long, and then I’m forced to tackle them, because not doing so would get me into trouble at work. Over the years I’ve become quite good at judging just how far out I can push tasks I’m not keen on before I have to start or risk trouble.

Interestingly – and this is something that’s just occurred to me – this tactic could almost be seen as a coping mechanism. By putting off a boring task until I can put it off no longer, I’m then forced to do the work, which ultimately immerses me into it. Once I’m immersed, I can get it done – the job suddenly seems like a challenge, and often it’s quite fun too. It’s no longer hard or boring. It’s almost as though I use my procrastination problem to my advantage, to push me into doing the very work that I’m procrastinating my way around in the first place.

So actually, despite having a self-confessed terrible track record at knuckling down to work, I still get my tasks done without them being late.

My procrastination and also my frequent browsing of the Internet and viewing of email are all compulsions, and I struggle to manage them. Yet somehow, they all seem to balance with my sense of responsibility and thus work in my favour, meaning I get my work tasks done on time, and with a level of care and detail that my bosses seem to be pleased with.

I can’t help thinking that those around me at work think that I just spend my day browsing the Internet, however.

Do any of you have a similar problem? How do you tackle it?

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.

The cuckoo in the nest of life

One of the really great things about the Internet from my perspective is that you can learn from others. Each morning I eagerly look at my Google Reader to see which of the blogs that I follow have new entries. I follow lots of content about a lot of different things, and I learn a lot from the experiences of others, but perhaps my favourite blogs are those written by others on the Autism Spectrum.

This morning I read a short but rather striking piece by Sophia Battenburg on her An Ordered Mind blog. I say striking, because as often happens with AS blogs, the writer has put things in a slightly different way to me, and from that I’ve seen new connections to how I behave and interact that I’d not seen before.

Sophia says, in the context of having her routine interrupted by noisy people in her living space:

I am coming to terms more with emotions, as I’m conscious that I block a lot of the negative ones out.

This rings true for me. What it has also done is make me think about why both I and Sophia block out the negative emotions in situations that we are not comfortable with. I think I know why.

Both Sophia and I did not discover our AS until we were adults. This means that we’ve grown up having to make sense of the world from an angle where it actually doesn’t make a great deal of sense a lot of the time.

In my case at least, social interaction has most of the time come from repetition of what I’ve seen others do, through a bit of guesswork, and from learning when my reactions have seemed to be inappropriate. In other words, it’s lacked the intuition that most people use. In order to survive, I’ve had to blend in, using mimicry.

You have to remember that this was the thing that came naturally to me, not the intuitive interactions that my peers used. It seemed like the normal thing to do, even if it was a little confusing, as it didn’t seem to be quite the same as what my peers were doing.

With all this in mind, you can see how a situation such as that described by Sophia ends up with her bottling up her negative emotions. When I feel uncomfortable with a situation such as invasion of my space by noisy people, I too will bite my tongue.

Why? Because I have observed over the years that no-one else comments on it.

These days, I can see that no-one else sees it as a problem – they simply don’t have the same sensory overload and broken routine issues as me. Until it became clear how my Asperger’s affects me, I assumed that others too felt the same discomfort, but simply didn’t feel it polite to comment on it. As my social responses are primarily learned from others rather than being from original thinking, I’ve always towed what I think is the correct line. I say nothing, because that is the response of those around me. I bottle up the discomfort and negative emotions, just like Sophia.

Those of us who grew up with undiagnosed Asperger’s are cukoos in the nest of life. We mimic those around us to get by. If that means keeping quiet about situations that cause us discomfort, then that’s what we do, because that’s what those from whom we learned appeared to be doing.

Can I break this behaviour now that I’m aware of it? I think so. Ask me in a year.

Wasn’t it obvious?

If you’ve read a few of my articles, you may be left thinking that I surely must have noticed that I had Asperger’s, or at least that I had something that was causing me problems in my life, and that I should thus have been able to tackle it.

Well, yes and no.

As I’ve written in other articles, I’ve always been aware that I was different. However, I had no well-defined point of reference with which to compare myself. This may sound a little odd, as like everyone else I live in and amongst other people. Don’t they provide a good point of reference?

No.

If you think about it, all you have to go on is what other people do and say, and for the most part this doesn’t give very much away. Also, everyone is unique – that’s easy to see, and frankly, clouds the view. If everyone is unique, and I can see that I’m different to everyone else, well, that makes me pretty normal, doesn’t it?

What’s much more difficult to see from simple observation is that there is an underlying neurological make-up that works in pretty much the same way across all ordinary people, and that it is this that is different in those of us with Asperger’s. You can’t see this through simple observation, and if you don’t know what you are looking for, how are you going to find it? I’m not typical, so how would I know how someone who is typical works? The only accurate point of reference I have is me.

I’ve only recently, at the age of 35 discovered just how different my make-up is compared to a typical person. I’ve discovered it by reading specifically about the differences, and then observing them in action. If it wasn’t for the work of those who have thoroughly researched Asperger’s, I wouldn’t know – they have provided me with the well-defined point of reference that has been missing all my life.

Without a point of reference to lead me in the right direction, I’ve been left for the whole of my adult life with a slight sense of something being not quite right. I’ve made many attempts over the years to figure out what was causing it, but it wasn’t until last year that I had my that explains everything moment.

My usual stock thoughts on my problem have been that I’m shy, and a little under confident. When other explanations have failed to fit, this is what I have fallen back on. Over the years I’ve thought I was suffering from depression – I have been from time to time, but this has been a symptom, not the cause. I’ve also wondered if I had an unusual mix of male and female characteristics – whether I was a lesbian in a male body if you like. It’s not difficult to see how I reached this conclusion – I am very sensitive, emotional, gentle and caring – all of which are attributes I associate more with women than men. Interestingly, my trait of feeling over-stimulated from too much visual and audible input also feels like a female characteristic too. I’m not sure why it feels that way to me, but that’s the way it’s always been.

I’ve had therapy for depression, which focussed on my lack of confidence and tried to teach me techiques to stop ruminating over things. What it didn’t do was address why I was depressed and ruminating in the first place. That remained a mystery. There was nothing that had happened in my life that appeared to account for it. Years later I received another round of therapy to tackle my anxiety. That too didn’t tackle why I might have cause to be feeling anxious, but it did provide useful techniques to help control it. In the end it also proved to be the gateway to discovering I had Asperger’s.

I can’t emphasise enough just how enlightening it was to read about Asperger’s for the first time. It really did feel like it explained everything.

I know why I’m different now. Vivre la difference!

Have I done well?

I don’t know if I’m doing a good job unless you tell me.

Indeed, I’m likely to think I’m not doing all that well if you don’t say anything.

You could argue that this has nothing to do with my Asperger’s, and you may well be right – it may simply be a lack of self confidence. I think it’s important to note, however that if it is purely down to this, then the lack of self confidence itself stems primarily from the AS.

Whenever I complete a piece of work, I know how I feel about it. It could be something for my employer, or work on the house of garden, or writing an article for this blog. Everything gets a little mental evaluation at the end of it. Often, if I’ve been in the zone whilst doing the job, I’ll feel very satisfied at the end – that I’ve done well. But if no-one else comments on this, then I’ll be left questioning whether I’ve reached the right conclusion. Self doubt creeps in. Can no-one other than me see how well I did that?

As I look at the world around me, and how people without Asperger’s interact in it, I notice that saying ‘good job’ to someone rarely happens. In fact I see very little to suggest that the recipients of decent work from someone even acknowledge it, let alone say it was good.

Or maybe I’m missing something here. Are non-verbals used to say thank you where the words are missing?

Perhaps if you don’t have Asperger’s you could let me know…

Food and textures

I grew up a fussy eater, but also as someone who enjoys food. If you feed me something I like, then I’ll enjoy it immensely. Feed me me something I don’t like, and well, I’ll be trying to disguise my horror.

Vegetables. They have been a big problem, cooked or raw. Cous cous, mushrooms, nuts and seeds. Fruit. Salad – in particular things like peppers and radishes and cucumber. Many vegetarian dishes cause me problems, especially if they have items like lentils or chickpeas in them.

So – I must have tried these foods that I don’t like at some point in the past, to reach the conclusion that I don’t like them, right? Well, maybe. I suspect, however that that isn’t the case a lot of the time. I think I’ve reached some arbitrary decision that I don’t like things.

When I was a child, I’d sit and pick out the bits I didn’t like from whatever meal I was presented with. Often I’d end up with a pile on the side of my plate that was almost as big as the food that I would eat. This was normal for me, and I couldn’t see what was wrong with it. Doing this as a child is perhaps not so unusual, but I carried it through into adulthood as well.

In the years since I met and married my wife, something interesting has happened. I’ve grown less fussy, and now eat many foods that I wouldn’t have entertained five years ago. My wife has been called a miracle worker by my mother, for managing to do what she failed to do whilst I was growing up.

So what was the problem, and how did my wife help me deal with it?

The most important revelation about my dislike of many food items came well over ten years ago, at some point in my twenties. When I dislike a food it is almost always because of it’s texture.

As a grown up man in his twenties, it was far more difficult for me to decline to eat food that others were providing for me, so I’d mentally grit my teeth and try and eat what I was given. It was the texture that more often than not caused me the problem.

One particular meal sticks out like a beacon in my memory. I was eating with my parents and brother at my aunt’s house. The first course was a large field mushroom, cooked and with some sort of topping on it. Mushrooms are a particular problem for me. I ate it. Well, I tell a lie there, I ate about half of it. I even got a quiet ‘well done’ from my mother (I was probably about 25 at the time!). What really sticks in my mind about it, however was the texture of the mushroom when I was eating it. There was no escaping it – it was the texture that I didn’t like.

It’s difficult to put into words what it is about the textures of some foods that makes me dislike them. They just have the power to send a chill down my spine and make me want to spit out what I’m chewing. Chewing is definitely a part of it, and I think that it’s a particular range of textures that have caused me the problems. If you look at the texture of cooked veg, or of mushrooms, for example, they have broadly speaking a soft texture but with a bit of bite left. It tends to be that sort of texture that causes me problems.

But as I’ve found, it doesn’t have to stay a problem.

I eat most cooked vegetables these days, and they no longer make me grimace. Cous cous is fine too, and I will eat some salad as well without picking all the bits out, but – if I’m honest it still wouldn’t be a meal of choice for me.

In the end, my wife simply wouldn’t stand for my fussy eating, and put pressure on me to eat a more varied diet. I felt silly about being fussy, and guilty that I was limiting her diet, and so braved the cooked veg.

After a while, it was fine – the texture was no longer a problem. It feels like I retrained my response to various foods.

Some are still a bit of a problem, however. I wouldn’t out of choice eat aubergine, nor tomoatoes in a salad (but of course tomato sauces are fine).

Now I’m aware of my Asperger’s, I wonder if my fussy eating was caused in some way by it. Were or are any of you fussy eaters? Are you raising kids on the spectrum who are fussy eaters? Is texture your problem too? I’d be really interested to find out if there is some correlation here, or if my fussy eating is coincidental.

Just get on with it

I’ve been told recently that “you just have to get on with it” when I’ve explained about my Asperger’s.

It’s very clear that the person meant well, and to put things into a slightly wider context, what they were really saying was that you have the cards that you’ve been dealt, and you just need to accept that and get on with things and make the most of it. They don’t want to see me get dragged down by my thinking about AS, and they also feel that if I put a bit more effort in, I could be that bit more normal. “You can learn”, I was told.

I appreciate the sentiment, but there is a clear misunderstanding about AS by the person who passed the above comment, one that I struggled to tell them verbally at the time.

I can perhaps best illustrate it by looking at my past. A year ago, I didn’t know what Asperger’s was. I was 35 years old, and had always muddled the best way I could through life. Muddled is an apt word – I have always seen the world, and how people interact and get on with things in particular to be a little odd. I always had, however, just got on with life, in the best way I knew how.

I’ve struggled at times with loneliness brought on through a seeming lack of ability to make and keep friendships with others. My social life through University and through to this day has been dismal. In a typical month I’ll socialise outside of my family no times whatsoever.

My life at work has been mixed. I work in IT, so changing jobs every couple of years, which I have done,  is not seen as much of a problem. A couple of times I’ve been made redundant, but on other occasions my leaving has, if I’m honest, been sparked by me getting a bad reputation with my bosses. Almost everywhere I’ve worked I’ve ended up causing trouble in one way or another. I don’t set out to do it, but I hate to see dishonesty and stupidity in management, and I’m somewhat infamous for writing my thoughts in an email and sending it off to management. This rarely goes down well, despite my best intentions. The guilt after the fact is intense. I’ve had a boss use this against me in the past, and in general it’s ended up hastening my exit.

Anxiety has followed me around for at least the last 25 years. At times it’s not so bad, and at other times it’s crippling. I find it difficult to communicate via the phone at work, and resort to email whenever I can. Face to face works for me when it’s just me and one other person, but larger group meetings are tricky due to sensory overload issues.

So, to make this clear, I have spent 35 years oblivious to my AS, and in effect just getting on with life. Whilst there have been undeniable personal triumphs – I have a wife, two kids, and I’ve always been employed – I think the above shows that I’ve experienced a good deal of problems that are directly attributable to my AS.

Despite making the best of things I’ve failed to make many friends, and I’ve lost many of those I did make. I’ve got no social life to speak of, and I make trouble at work for myself despite my best intentions. I have an anxiety problem that at times criples me.

I’ve spent a good deal of time over the last few months mulling over my AS, and it’s this inward looking that has lead to the comments of “just get on with it”.

Only by understanding my Asperger’s can I move on and start to find strategies that help improve the areas of my life that I find difficult.

So whilst I appreciate the sentiment in being told to “just get on with it”, you are going to have to excuse me whilst I spend whatever time I need to learn and come to terms with what makes me the person I am.

Then I can get on with it.