Subtlety

I have always been astonishingly good at faux pas. Since my self-realisation eighteen months or so ago that I have Asperger’s, there has of course been a reasonable explanation for this.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Maybe we are not so different…

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

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

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

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

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

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

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

Flashbulb memories

I’ve been wondering on and off for a couple of weeks now about my memory. In particular, I’ve been thinking about how I store information about events that have happened in my life. The scientific name for this type of recall is Episodic Memory.

I used to marvel at one of my friends at school, who had an amazing ability to read and memorise practically every detail in books. I termed this to be photographic memory at the time – in the sort of way that an Aspie would – in other words at that age I would have heard vaguely how some people have ‘photographic memories’, but I would not have read anything about the subject. Which means this was basically guess work on my part based on a loose concept that I didn’t have much actual knowledge of. I do that sort of thing all the time even today as an adult – but I’m getting off track here, so I’ll have to talk about my presenting of guess work as fact another time.

What has really been fascinating me about my memory is just how visual my episodic memory is. Today I’ve stumbled upon this page in Wikipedia, that describes so-called Flashbulb Memory – the way that people will remember some events in their life in a lot of vivid detail. Where were you when you heard about 9/11 or when man first landed on the moon? It seems that these sorts of momentous emotional occasions form very detailed memories in people, and you’ll often be able to describe things in some detail, even many years later.

Where was I on 9/11? I was on a (completely out of character) lad’s holiday in Ibiza. We’d been out for the day, and just as we arrived back at the hotel, one our group got an SMS from his mother saying a plane had hit the WTC and that one of the buildings had fallen down. I was in a hotel corridor when this got read out to me. I remember lots more detail of that evening and the following day. Going to the bar across the road to watch their CNN feed and being amazed that someone caught the moment the second plane hit on video. I saw the tower fall replayed time and again. That night, in the early hours, a drunk man, high on the emotion shouted “Nuclear war!” out of their hotel window. I can hear him, and the echo of his voice to this day. The next day was spent reading newspapers on sun loungers. It was hard to take in what had happened. I was in Ibiza, and had spent the previous week getting very drunk. This kind of sobered me up. Flights were grounded and I was due to go home the following day. What would happen? Would I get home the following day? Anxiety was building up.

I can see all of this.

I see the view from the sun loungers. I can see the newspapers scattered all around us, and the two litre bottles of water we were using to try and rehydrate. I remember the vegetation around the wall-hung TV in the bar. The curve of the wall of the hotel and the noisy nightclub across the way with it’s flashing lights – the neon was light blue in colour.

None of this is surprising – this was one of those world defining flashbulb moments, and I’m sure that a great many people could recall that day in just as much detail as I could.

But it’s not just that day. I remember a visual snapshot of the bar we spent our time in at the airport on the flight out. I remember the boat trip we took and being told to be careful which hand I held my beer in (the wrong hand meant you had to down it – ah the joys of package tours for young people). I even remember many of the sights on the long drunken walk up the bay to our hotel after a night out. Many many aspects of that holiday nearly eight years ago present themselves as quite vivid pictures and videos in my head. But do you know what? I don’t remember is the names of most of those I was on holiday with.

It’s not just that holiday. Lets use my school days as an example. I can see myself churning butter at nursery when I was four. I can see me walking to junior school and swapping football stickers with a friend. I can see his face to this day, but I can’t remember his name. Maybe, just maybe, it was Mark.

I can see the whole route from my house to the junior school as a little real-time video, where I can pan the camera around and zoom in on things at will. I know how many houses there were down the side of the road, where the junctions were, how steep the hills were, how deep the gulley was where the stream went – pretty much everything. I haven’t lived in that house since 1992, and I haven’t walked that school route since 1986, but there it is, still vivid in my head.

I note that a lot of this information is spacial as well as visual. I know how the building blocks of houses and roads and walls all fit together. I don’t remember the names of roads, though.

If I think about it, I can probably do the same visual video trick for most journeys I’ve made repeatedly throughout my life. If I have to give someone directions somewhere then my internal video starts, and I give them the directions by navigating my way visually in my mind’s eye.

Everything that I can think of that I would class as an episodic memory presents itself to me in some form of visual way. The clearer memories are little videos, and those that are fainter are a series of pictures. Occasionally I’ll remember smells and emotions too.

But is this unusual? Clearly I’ve never seen it as such – it’s just how it works for me. The admittedly limited reading material that I’ve digested thus far (three online articles, and a few Wikipedia pages) hasn’t used the word visual at all to describe episodic memory.

So maybe it is unusual.

How about you? Do you see your memories in much the same way as me, or do you experience them in some other way?

Oh – and this, of course, is where my tangent at the top becomes relevant again. Instead of hitting the publish button, I could go away and read up a lot more about memory, and about episodic memory in particular, and then publish, with real facts to back me up.

But I won’t. I’ll leave you with my current decision, based on little evidence that perhaps perceiving my memories in this way is unusual. And doing this says as much about me as telling you how my memory works.

Genetics news brings mixed feelings

It’s big news this morning in the UK that scientists have found strong evidence that genetics have a key role in Autism Spectrum Disorders.

If you ask me, it’s bloomin’ obvious that genetics has a key role – I’m a strong advocate of autism being an inherited condition, having reached this conclusion through simple observation.

It’s good to see that steps along the way to understanding this link by science are being made – for I think it’s important. Indeed when I first heard the news on the radio this morning, a source was quoted as saying that the breakthrough was as important as those made in cancer research. I agree.

Whilst I feel strongly that understanding the genetic mechanisms behind ASDs is important, it also worries me.

If, in ten, twenty five or maybe fifty years time we understand the genetic make-up of ASDs, will we use this information to allow in-utero genetic testing for the disorders? Would this testing lead to the aborting of foetuses with the genetic markers associated with ASDs?

This would be highly controversial, because a great many people of the spectrum lead full and (mostly) happy lives, despite having this perceived disability. But testing of this sort is routinely done for Down’s syndrome these days, so why not for Asperger’s syndrome too?

If I wasn’t born 35 years ago, but in the near future, where genetic screening for autism was possible, would I even make it as far as birth? I find this a worrying thought.

Each and every birth is a miracle of a million genetic coincidences coming together, but I, for one am not bitter to have the genetic make-up that life has given me. I wouldn’t change it, and I would sincerely hope that the future-me with similar genetic make-up would be allowed their chance at life.

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.