Better to know?

If you’ve been reading this blog for a while, you’ll know that I discovered my Asperger’s  in the autumn of 2008, when I was thirty five years old.

Until that point in my life, I’d been plagued with feeling different from everyone else, getting into many scrapes of my own making that I didn’t see coming, and generally living in a high stress mode all of the time.

My discovery of Asperger’s, and my subsequent matching of its characteristics to my own personality was my real That Explains Everything moment.

I frequently wonder how my life might have been different if I was growing up today, with the reasonable chance that my differences might have been identified and diagnosed when I was still in childhood. Would my life have been easier or harder?

Let’s look at how it has been for me first:

My life has been lived under the almost constant feeling of high stress. As life has progressed and got correspondingly more complex, so my background stress level has increased. Tasks that a typical person would find to be not stressful at all – such as making a phone call – add intense peaks to my daily stress. Backing up my stress is anxiety. I’ve experienced this since at least my early teens, and it comes and goes in waves. This week I have it quite badly, but last week I was mostly fine. When bad, the anxiety can be crippling. A combination of it and the stress often leave me feeling dumbfounded just by regular life. I sit like a rabbit in the headlights of life, existing, but not really knowing what to do or how to behave.

You need to understand, however, that until a year or so ago, this felt normal for me. Whilst I knew that I was a little different in some way to most other people that I interacted with, I didn’t appreciate just how different I was. So, stress and anxiety felt normal – it’s all part of every day life for everyone. Isn’t it?

Life at work has always been a mixture of success and failure for me. When well guided, I work better than your average person, tend to get on with things without a fuss, and I’ve been well liked by various people that I’ve worked for for these reasons. When I work in a disorganised place, or for bosses who are underhand then I fare far less well. I’ve never been fired, but I’ve come close, and I’ve upset senior people at several companies with what I can now see were inappropriate outbursts. The problem is that I didn’t see them like this at the time. I’ve never seen the potential consequences of my whistle-blower-like activities in companies. I’m speaking the truth – what’s wrong with that? Bad times at companies also increase my stress and anxiety. So it goes.

In my personal life, I’ve been a serial monogamist. Without realising it, I’ve always dated women who could help take control of the areas of my life that I wasn’t very good at.

When I was younger, I held on for dear life to the romantic relationships that I had, and was desolate when they broke up. As I’ve matured (perhaps rather more slowly than a typical person would), I’ve become far more accepting of my responsibilities in relationships, and what I can realistically expect from my partner.

My dating methods have been unusual. When I was younger, it was always the girl that asked me out. I have always been sweet natured and queit and kind (although perhaps in an unusual way). I met my wife via an introduction from a friend and we text messaged first, before graduating to phone calls and then meeting. This took a huge effort on my part – effort that I assumed most other people had to use too to find a suitable partner. Without that introduction, there is a good chance, I think, that I’d still be single now, seven years later. I’ve never gone looking for love in bars, or using other typical methods that people use to meet other people.

I’m thirty six. I went to university, I have a wife, two kids, a house, two cars, and a job. I have a great deal to be thankful for.

How my life would have progressed if I’d been diagnosed with AS as, say, a young teenager:

Well for a starter, I doubt I’d have gone to university. University was expected of me, and hence I went. I didn’t enjoy it, as I failed miserably to make friends, and got though it only with the substantial help of a long term girlfriend.

I’d have decided that university wasn’t for me. So. No degree.

That would have meant that I wouldn’t have joined the graduate recruitment program of a large UK IT company, nor moved to London.

What would I have done for work? I really don’t know. I fell into the computing course at university more out of luck rather than good judgement. I toyed with chemical engineering and architecture first. IT suites me – but would I have seen that if I had been diagnosed with AS at a young age?

I suspect I’d have got a low paid, low status job – maybe a librarian or somesuch. Perhaps my work would have consisted of lots of reasonable short jobs.

I’d be stuck at home with my parents well into adulthood, because I doubt very much that I would have had the confidence to move out. After all – I’d been diagnosed with this big scary condition that made me vulnerable and easily led. My parents wouldn’t have wanted me striking out on my own in that condition, I suspect.

Relationships? I doubt there would have been many, if at all. A man in his twenties, living at home, with no friends, who perhaps doesn’t have a job, and who doesn’t socialise is going to find it difficult to find love. That isn’t rocket science.

And now, at thirty six, where would I be?

My best guess is that I would be living in a rented flat, with no career, and possibly not much regular work. I’d have made a few friends in the autism community, but I wouldn’t be married, and I’d probably have been single for many years. I’d be anxious and depressed, and frankly quite downtrodden and pissed off with the hand that life has dealt me. I would most likely get about by bus, having never learned to drive.

Frightening, isn’t it?

Life has been hard work to get to here, but it felt normal, because I had no expectations that there was really anything fundamentally out of the ordinary with me. I was different yes, but not that different. I got on with life, because that what you do – that’s what everyone does. I had expectations of living an ordinary life, and that’s what I set out to do, and ultimately did.

I genuinely believe that my life expectations, if diagnosed at an early age with AS would be very different. Everyone’s expectations of me would have been far lower, as would my own expectations. Even independent living would be a serious and hard to achieve goal. Life would be a struggle in a very different way to the way in which I’ve found it a struggle in reality.

–

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?

Announcements

I flicked through our local free weekly paper last night.

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.

Life derailed

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

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

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

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

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

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

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

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

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

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

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

Where had my middle class dreams gone?

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

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

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

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

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

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

Ironing my way to happiness

I’m sure you all have your own version of this – a task that has just the right elements in it to soothe you and make you feel good.

For me, ironing is one of these tasks. Give me some clothes to iron, and I’ll come out of the other end of the process feeling relaxed, soothed and happy.

Why? Well ironing has a couple of features to it that are great for aspies. Firstly, there is the attention to detail. There is a skill to ironing – making sure you push the iron the right way whilst often pulling the fabric in a different direction. You get instant feedback by looking at the detail of what you are doing – constantly adjusting the strokes of the iron to achieve the best results. Then there is the repetition. If you iron half a dozen shirts, then you are essentially repeating the same job six times. Each shirt will need different tweaks to the technique, depending on the fabric, but each will require the same routine.

With shirts, I iron the underside of the collar first, and then grab an arm which I iron both sides of. I’ll then tackle the other arm, before working around the trunk, from the button side to the other. This is how I’ve tackled a shirt for as far back as I can remember, and I feel comfort in using this same process each time.

Then there is the time to think. There’s something about the repetitive aspect to the process that allows my mind to unwind, forgetting about the troubles of the day, and allowing it to then concentrate on something else. I get some of my best thinking done whilst ironing.

I feel a great satisfaction in producing nicely ironed shirts, and other clothes too. Somehow, the following of the process, and the attention to the detail smoothes the creases out of my mind as much as it does the clothes. Perhaps it’s the concentration on the task in hand and the repetition. Whatever it is, it produces real beneficial effects.

Do you have a similar task that allows you to soothe yourself? I’d be interested to hear what it is.

Opening up: A stressful couple of weeks

I’m sure you know how it goes. You don’t find a release for your frustrations, and they very quickly build up, giving you an uncomfortable dose of anxiety.

Well, that’s certainly what has been been happening with me these last couple of weeks.

There are a number of things at play. Firstly, I’ve decided that the time is right to let my parents know about my Asperger’s. Secondly, work has, for one reason or another proven to be quite stressful over the last couple of weeks. Thirdly, I’ve not been writing here.

Why have I not been writing? Well initially it was just the way that the dice rolled – it was a long bank holiday weekend here in the UK, and I rarely write outside of work, through habit rather than anything else. I’ve also been quite busy at work, and also busy with point number one this week, and so didn’t write on Tuesday either. I then decided that maybe it would be nice to take a little break from writing for the rest of the week, to recharge my batteries as it were. This, it would seem has turned out to be a mistake, but perhaps only because of points one and two above also being on the go.

So – I told my parents I has AS. In many ways, the direction of this blog has been working towards this since I set it up. I needed to get my own head straight about AS before I could tell others, and in particular my parents. That’s because I’ve always known I would have a hard job selling my self-diagnosis to them, and in particular to my mother.

And I was right. I send a long but well considered and tweaked email to my parents at the start of last week. It barely scratched the surface of AS and me – how could it? AS is a big and all encompassing condition, and I’d need to write a book (or a blog!) to capture it all. A couple of days later I got an emailed response, that spent some time trying to point out how various aspects of my life meant that I couldn’t possibly have AS, as someone with AS wouldn’t have been able to achieve what I’d achieved, or wouldn’t have acted as I did. To cap it all, my mother flat outright rejected in writing that I had AS, after two whole days of consideration.

I was disappointed, but not at all surprised. This was the sort of thing I expected. Instead of a considered response that this was all a bit of a surprise, and that they didn’t really know enough to form an opinion, I got a flat rejection. I couldn’t possibly have AS, and I shouldn’t be so silly as to suggest it.

I wrote an angry email back, that argued that a snap judgment based on a couple of days of research and a small amount of background knowledge formed over the years that my mother served as a teacher (she retired seven years ago) was simply not valid, and further more was extremely insensitive. I’ve since followed this up with a series of emails that point out how the examples she gave of why I couldn’t possibly have AS actually missed a huge amount of subtlety in the situations that did show underlieing AS; or in some cases how the judgments were just plain wrong. I’ve not had responses to these as yet, as my parents disappeared abroad on holiday at the end of last week, and won’t be reading the correspondence until today at the earliest.

Despite the fact that I was expecting this sort of response, and was well prepared, I still felt as though the whole experience was a kick in the teeth. My stress levels are correspondingly up, as is my anxiety, and it took a few days from the first response for me to recover my composure and confidence enough to put up a well thought out and thorough rebuttal to my mother’s dismissals.

So when you add work stress to all of the above, it hasn’t been a great week. There are various mind games going on at work, with individuals such as myself, who are contract rather than permanent staff being subject to veiled threats regarding the stability of our jobs. It’s not much fun.

In hindsight, I picked a bad week to decide to open up to my parents, but I wasn’t to know that the work stress would start. It’s also been a bad week to decide not to write much here, as bottling up my thoughts has just lead to further stress and the associated anxiety.

So today has been different. I have worked hard to clear my to-do list of the most important work related tasks, and have cleared a half hour of schedule to write this, so I can get some of it off my shoulders. It feels good.

The next week or two are clearly going to be difficult, but I hope that a bit of time and patience on my part will allow my parents, and my mother in particular to accept that I do have AS.

Time will tell. Wish me luck.

Feeling the fear

If you are on the spectrum, then you probably know this feeling. It’s the one where you look like a rabbit caught in car headlights just before it gets hit.

Fear is never far away for me. I’m sure it is connected to my background stress and anxiety in some way, but frankly the feeling of fear is distinct from that of feeling anxious.

The odd thing for me is that frequently there is no good reason for the fear to be there at all, but it still is. Is life that terrifying that it causes me to walk around feeling frightened? Well, maybe there is something in that. After all, I’ve said in countless articles on this site that I find the world a confusing and unpredictable place. In the past I’ve used this to justify the anxiety I feel, but could it also cause a frequent background fear, that on occasion flares up into terror?

I’ll explain what this fear feels like: It’s like when you were a kid, and you wanted your parents to leave the hallway light on at night (which mine did, incidentally). It’s an irrational fear that often appears to have no cause in particular, but it’s chilling all the same.

When I was a child, at least part of this night time fear was one of security. With the light on, I could see my surroundings, and this was comfortable. With the light off, I couldn’t see where I was, and then small creaks in the house would make me jump and my heart pound. Perhaps there is an over-active imagination at play here, or perhaps it’s just to do with the way I’ve always processed sensory inputs – in real time, with pattern matching. When you can’t see what you are doing, your other senses become hightened, and you start to hear every little sound. In the UK, our houses are built with wooden rafters and floors, and these creak when the house heats up and cools down in the daily cycle of life. To a young man, processing the noises in real time, and trying to understand and pattern match them, the creaks can sound like someone walking towards your room. When your parents are asleep in bed, this sort of thing can be very frightening, especially when your eyes can’t confirm or deny what you are hearing.

I wonder if my background fear as an adult is a similar mechanism at play?

If the input I get from my senses matches in some way to a previously scary event, do I then subconsciously start to feel scared? I’ve many times in the past suffered from unexpected outcomes in social situations. Outcomes where I’ve inadvertently provoked an aggressive response from someone. These leave me surprised and quite genuinely instantly frightened at the time. My social faux pas don’t happen often on this scale, but in a life time I’ve unintentionally provoked aggression on many occasions. I think there is a good chance that my brain has these stored away for use as pattern matches – after all, I know I have a great many past events stored in just this way – I make use of them daily to help navigate my lack of social intuition. So – what if my brain pattern matches something about a current innocuous situation to one of these old scenarios, and turns on my fear?

What I’ve just described is what would typically be called post traumatic stress disorder, but would I be at all justified to claim that this is what I am experiencing?

To be honest, I’m not sure it’s all that wide of the mark. The world is continually perplexing and unpredictable to me, and at times my apparent naivety has burnt me badly. I observe that I don’t learn from these sorts of mistakes over time, and continue to make them. Why then, wouldn’t my brain pattern match fear, when it thinks it sees another scenario that might provoke the same response? I may not have suffered from trauma in the way that people usually define it – as in a single horrendous experience – but I have suffered a catalogue of broadly similar moderately scary incidents over the years. Incidents that I’ve not learnt to avoid. Could they add up and reinforce the message over time in my brain? Maybe. It sounds plausible to me.

What do you make of this? Do you suffer from the fear too? If you do, what do you think causes it?

Loud noise feedback

Maybe this is normal. I don’t really want to go round asking people though, because they’ll most likely think I’m mad, regardless of which outcome turns out to be normal.

Whatever the case, it’s my Aspie trait of spotting the tiniest of details in things that’s lead me to spotting this, and then wondering what it was.
Read more

A dinner party, Aspie style

Last weekend, my wife and I hosted a dinner party for six. This is an unusual event in our household, but we had been to evenings at the other couples houses recently, so it was our turn to entertain.

With my new-found hyper-awareness of how my Asperger’s affects me, I wondered how the evening would go, and how my AS would colour things. As it happens, it went well.

Before the day itself, my wife and I split up the jobs. She was to sort out the nibbles and the dessert, and I was to cook the main course. We decided that as we don’t have much practice of juggling cooking and entertaining at the same time, that we’d stick to a pre-prepared dessert, and a main course that we cook regularly – a good old fashioned British roast dinner.

On the morning of the event, I did my first Aspie trick – I made a list. It was a timeline from mid-afternoon of when everything needed to be prepared, go in/out of the oven, and when we’d fit in feeding the kids and bathing them etc as well. With my list done, I was confident I knew the schedule. If I hadn’t taken the time to make it, then nothing would have been ready in time. As it turned out, the list worked wonderfully.

When our guests arrived, the kids were safely asleep in bed, my wife had finished assembling the nibbles, and I was hard at work cooking. My wife did the pre-dinner entertaining whilst I got all the final bits of the main course ready. This worked well. I was focussed, the food got delivered on schedule, and everyone enjoyed it. Great.

What I perhaps wasn’t expecting was just how little I would have to contribute after the meal was done. In usual dinner party style we adjourned to the lounge for coffee and chocolates and grown up chatter. But I had nothing left to give. Once more, I was the quiet one in the corner that wasn’t joining in with the conversation very much.

You may be surprised to hear that I wasn’t expecting this. I’m usually quite chatty at dinner parties, especially once alcohol has kicked in a bit. As someone who doesn’t discuss things verbally with people all that often or indeed all that articulately, rare occurrences like dinner parties at other people’s houses tend to provide something of an outlet for me. Alcohol helps.

But not that night. The intense focus on the list of things that needed doing, and the effort involved in preparing everything had wiped me out. I wanted so much for everyone to be impressed with the food that I had put every last ounce of effort into it, and left nothing for the social side of the evening.

This is another of my traits that I put down to my AS. Whenever I concentrate intently on something for any length of time I end up feeling tired and withdrawn. It’s a similar feeling to the one I get when I’ve experienced sensory overload. I feel vacant, and almost as though I’m looking at a video of the world around me rather than real life – like I’m detached from reality in some way. I get the feeling even after short periods of concentration – I’ll get it after publishing this article, for instance.

At least, with only six of us there, there wasn’t a great deal of time spent with people talking over each other. This meant that whilst I may not have been saying much, I was at least able to follow and enjoy the conversations. I think six people is about the right number for me for an evening like this. Any more and regardless of whether I’m the host or not, I’ll start to loose track of conversations, and the general background noise will start to annoy me and eventually overload me.

Did anyone notice my lack of input? I’m not sure, but it probably doesn’t matter. Everyone – me included – had a good time, and that is more important.

It’s interesting that we chose a roast dinner for the main course as we thought that would be an easy option. I think that the next time we entertain in this way, I’ll try and come up with a main course that can have at least some elements prepared ahead of time.

That way I might have a little something left to give in the second half of the evening.

Eye contact

I just can’t do it.

I’ll look at your shoes and maybe your trousers. I can often remember what people were wearing on their bottom half, but hardly ever the top.

I just can’t look you in the eyes.

This phenomenon is widely known as a trait with people on the Autism Spectrum, but I’ve never seen a convincing write up of why it happens. Perhaps this isn’t all that surprising – I struggle to understand it myself.

Looking in someone elses eyes feels wrong to me. By that I mean that it feels like something I shouldn’t be doing. There’s sometimes literally a thought of  “damn – you caught me looking” in the brief fraction of a second when eyes meet.

Moreover, it feels intensely uncomfortable too. When I make myself look someone else in the eye, I find myself almost physically flinching. My eyes want to look elsewhere, and it takes real effort to stop them doing just that. More than a few seconds of enforced eye contact and my brain is screaming at me, almost in pain.

And that’s just made a connection. The feeling of something akin to pain is actually just like the feeling I get when I’m tickled, or if I hear a loud noise. It’s not a physical pain as such, but it is excruciating all the same – a sort of mental pain. The feelings it stirs in me are those of getting away from the pain. With loud noises I’ll scrunch my face up and sometimes cover my ears. With tickling I’ll push people away or run. These are all reactions that happen without me consciously thinking about them.

I suppose that eye contact has an equivalent reaction too – I’ll simply look elsewhere.

So maybe the eye contact problem is caught up with the sensory over-stimulation problem in some way.

What ever it is, I simply can’t make eye contact with anyone comfortably, and I doubt that will ever change.

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.