Here in the UK, autism isn’t well understood outside of families that have been touched by it. I believe it’s still very much seen as a condition in kids that causes them not to interact with others, and to rock backwards and forwards. Many people in the UK will have heard of Asperger’s, but will have no idea what it is.

These assertions are partly borne out by the fact that I’m a well educated middle class man, and I didn’t know what Asperger’s was and indeed my knowledge of autism was framed much as I stated above until such time as it was suggested that I was on the Autism Spectrum. A spectrum? Goodness – that was a new idea to me. When I went to see my doctor last week, she said, “So of course, autism is really a spectrum, with different degrees of affectedness…” as though this was something new to her too.

This lack of knowledge makes my job of just how much to tell people about my autism quite a challenge. I’m aware that a great many people will start with the stance that I can’t possibly have autism, because, well, I’m actually talking to them, and autistic people don’t do that, do they?

But do you know what? I’d much rather have this challenge, than the one that I perceive people in the US have.

In the US, various groups lobby for their view of autism to become the accepted norm. They have a lot of power, a lot of money, and are often backed by famous individuals to lend them that extra bit of trust in the eyes of those who listen to their messages. They release expensively produced videos that are carefully crafted to further their cause.

The problem for me with all this is that the message they are sending is not actually based on the reality of autism.

I can’t imagine what it must be like being a freshly diagnosed adult with autism trying to explain themselves in the US.  As well as general ignorance towards the specifics of what autism really means, you are going to be faced with people who think they know all about autism, because they’ve seen one of the lobbying videos from these groups.

All of a sudden, you are going to be talking to someone who has just associated very negative things with you, based on something a celebrity told them on TV – so it must be true. You may be viewed as being a home wrecker, or incapable of feeling empathy for others. You will likely be seen as damaged, and you may be asked how your treatments towards a cure are going. In short, you may well be seen as being a worthless person.

A particularly nasty vision of this negative propaganda was released this week by Autism Speaks. You can see the video here, on YouTube. Words fail me as to how truly despicable this video is. Various other places on the Internet have noted how, if you mute the sound and watch the video, you only see happy and contended autistic kids and adults. Add the commentary, and well, it turns into something completely different. It upsets me, and it’s just plain awful. Period.

Autism Speaks does not speak for me.

I’m very happy to report, however, that this morning I saw another video. One that helps to redress the balance. Rethinkingautism.com does not, I am sure, have the same political clout or lobbying ability as Autism Speaks, but they have produced a wonderful video to counter the likes of Autism Speaks. I encourage you to watch it – here on YouTube. If only this was the message that was being given the really hard sell in the US…

Coming out to the world as autistic is never going to be easy, regardless of where you live. But I’d rather that the population knew nothing about autism than they were being fed very slick misinformation from a well-oiled political propaganda machine.

What would be really wonderful was  if autism was as well understood and tolerated  in the population at large as, say, cancer is. The irony of this statement is of course that cancer isn’t really well understood by people, but people generally do know enough about it to understand how it impacts people, and to empathise. And that’s really what autism needs too.

Maybe one day…

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Awareness versus propaganda

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This article, from the BBC News website speaks for itself.

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Autism rates in adults

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Work has been busy,  as has my home life. Add to that the situation with my parents, my hosting provider blowing up, my new Netbook becoming faulty and needing replacing and a little writers block, and it has meant no postings here for more than a week.

I’ve not disappeared, nor abandoned this site. I’ve still got lots to say, so will be back very soon.

Promise!

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Too much to do, and a touch of writers’ block

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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.

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Opening up: A stressful couple of weeks

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Rachel talks about how she feels she has to correct people in organisations that she gets involved with who are making what she sees to be clear logical mistakes, and how this never seems to result in a satisfactory outcome. She writes:

In every organization, there are all sorts of social, nonverbal, pecking-order assumptions about treating certain individuals with deference, about defending the organization, and about a number of other concerns that I just can’t see and don’t understand. So, a person I contact at any organization will very likely defend someone higher up, come out in defense of the organization, ignore me, or do something else that drives me nuts.

I too fail to see or understand many of these rules. I know the rules are there, but I don’t really ‘get’ them.

Rachel continues:

Unfortunately, what I consider bullshit is just basic social reality for most people. Needless to say, sooner or later, a relentless force (me) meets an immoveable object (them), and it’s not a happy experience.

How true this is. Failing to handle situations like this in a neuro-typical way is one of my most common causes of faux pas, and it gets me into a lot of trouble. You see, the organisations that I like to give a piece of my mind most frequently are those that I work for.

I guess that little annoyances at work get shrugged off by typical people. When they don’t, they tend to have a quiet word with those around them, or their boss to try and get things resolved. Unfortunately, my anxiety and problems with verbal interaction mean that I rule myself out of taking these approaches. Instead, I tend to let things build up to the point where I can no longer keep the issue inside of me.

Eventually, like Rachel, I feel that I have to point out what’s wrong. Whatever the issue is seems so logically wrong to me, that I can’t understand why others wouldn’t see it, or would choose to ignore it. So at that point, where my frustration is so great that I can’t keep it inside me any more, I write an email. The email is, in my typical style, brutally honest, long, detailed, and doesn’t hold back in saying what I think about situations and people. If someone is doing something I perceive to be wrong or dishonest, I say so. If that person happens to be the boss I’m writing to, I’ll still say so.

Writing the email is a great experience, in much the same way as writing for this blog is. It’s cathartic, and I pour huge amounts of emotion into it.

And of course, that’s where it should stop. I should write the email outside of my email client, and never send it. Unfortunately, my executive disfunction means that I don’t see this common-sense conclusion at the time. I bang away at the keyboard for an hour, honing everything I want to say into an email that usually reads much like an article here, and then without a second thought, I send it.

I’ve never been fired, but I’ve ended up in trouble with management at most companies I’ve worked for in one form or another, and typically it’s my use of email in this way that gets me on the trouble radar – I’m not playing by the rules.

It’s not just work, of course. Another of my bug-bears is recruitment agents that call and email me about work, and put zero effort into their sales pitch. At least spouting off at Job Agents doesn’t cause me any trouble. Every month or two I explode in annoyance and write a snotty email back explaining just how useless their communication to me was, and how I’m sticking them on my black list of agents that I won’t deal with when I’m next looking for a job. Indeed I did something very similar this afternoon, which along with Rachel’s article prompted me to write.

Here’s the email that the agent sent today:

Subject: URGENT! Please Get In Touch!

I have tried without success to reach you by telephone, so hope that you
receive this email.

I have a potentially interesting opportunity for you and would be
grateful if you could call me on the number below to discuss the matter.

I look forward to hearing from you.

Regards,

[Agents name]

Wow. How can I fail to be impressed by this. Remind me how this works again? Oh yes, that’s it – the agency put me in contact with a company looking to employ someone with my skills. I then attend the interview and put in the hard work that secures me the job. The agent acts as a conduit to get me the interview, for the contract paperwork, and well, not much else. For their brief involvement, the agency make about 20% of my starting salary, which amounts to many thousands of Pounds.

And this sort of email is frequently their opener. At least this one didn’t have the very wonderful ‘Dear Candidate’ at the start of it – I’ve often responded snottily to these by starting ‘Dear Agent’. But come on – there is nothing about where the job is located, what skills they are looking for, whether the job is permanent or contract, what level of seniority they are looking for or what sort of pay range they are looking at. Nothing at all that I can use to make any sort of judgement. It’s just pathetic.

Grrr.

Clearly, I need to find some way to deal with annoyances like this and those at work when they first crop up. I’m not sure how to do this right now, but I can see that it needs to be done. If I don’t tackle this, then I’m going to keep on sending inappropriate and pointless emails, and keep on getting myself into trouble.

Does anyone have any suggestions about how to tackle this?

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And another thing…

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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.

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Misguided lobbying

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A wrote a couple of days ago about how I’m sometimes at a loss for words when I’ve experienced too much sensory input. I used a throw-away metaphor in the article about how my brain goes away and decides whether it needs to use a stock answer:

This is the pattern matching bit of my brain that says, “So the question was this, do we have an easy/obvious/logical answer to use, or do I need to fetch something out of the stock cupboard?”.

I like metaphors – they have a wonderfully simplifying effect on me. I usually coin them to make something easier for me to understand, and I often find it easier to describe a tricky concept using metaphor rather than describing the concept itself.

It looks like other Aspies find this sort of trick useful too. Anna expanded on my metaphor:

I think it is the same for me. The more tired I am, the longer the walk to the stock cupboard seems, and sometimes I just can’t walk that far at all, and so no words are forthcoming. Does that make sense?

Brilliant. I really couldn’t have put it better myself. And then she said this:

Do you suppose that for the more severely autistic people who don’t speak, it might be because they reach sensory overload much sooner than us, and their stock cupboard of words is even further away than ours?

Well. I think it’s great when we amateur psychologists come up with little leaps of logic like this.

I can’t say whether the trait behind this metaphor actually works like this in those with more pronounced autism. It sounds however, to be both a logical and plausible extension of what happens in those of us with the more high-functioning variants of autism.

This is one of those “you won’t find this in a book” leaps of logic that I’ve written about before. But then again, could you write about the way this sort of trait works without resorting to metaphor? I’m sure I couldn’t, and metaphor isn’t used much by those non-autistic people who write the books.

Great stuff, Anna – thanks for the insight.

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Metaphors, and a leap of logic

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I enjoy writing about AS, but I also enjoy writing about more technical things at work.

Food for thought for me.

If I’m ever going to get myself into a job that both suits me and keeps me involved and happy, then thoughts like this are important, and shouldn’t just be ignored.

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A short, but important thought

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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.

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Genetics news brings mixed feelings

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Popularity is an odd phenomenon. I’ve never sought it, perhaps because I fear it would show me for the social charlatan that I am. Instead I tend to seek obscurity, and in social gatherings I’m the aloof one in the background somewhere.

Some unexpected things have happened to my blog in the last couple of weeks. Firstly, people have started to actually read it. What’s more, they are commenting on what I write. This wasn’t what I expected when I started the blog.

It’s great – and entirely a surprise – that people are reading what I write, and that they are coming back for repeat visits. I had a lot to express when I started the blog – I still do – but I wrote thinking that ultimately the only person that was likely to be interested was me. That didn’t matter one jot – I needed to express things, and writing it all formally gave me a framework within which to work that was comfortable for me. Making it public on the Internet forced me to think about what I was writing, to a degree.

I’ve worked in online retail, have published my own writing on the Internet before, and am familiar with the various methods of tracking site traffic, so when I set up my blog I added Google Analytics tracking to it. I may have had low expectations as to other people visiting, but I still wanted to see the figures. I’ve also done some other tricks, such as trying to optimise my site keywords to help make the entries show up better in search engine results. The first three months went pretty much as I expected. Visitor numbers could be counted on a couple of fingers most days, and page impressions across both hands, often easily. The line was flat – my blog was, predicably, going nowhere fast.

However, I got my first comments really quite early on and was over the moon. Someone had not only read what I had written, but they had empathised too! Fantastic!

Then a couple of weeks ago the slow creep of comments started to speed up, and finally overtook the number of articles I’d written. At about the same time, the page impressions per day were starting to ramp up. On April the 7th, I had my first day where page impressions excluding my own visits and spider traffic went over 100. Add in the pages viewed in RSS, and I hit close to 150 page views. In the last month 132 different people have viewed pages on my site, including visitors from five continents, and places as far apart as New Zealand, Mexico, Poland, India and Russia. Most visitors are from the US, and the UK.

Is my blog popular? Of course not – not in the grand scheme of things. A grand total of 11 people subscribe to my RSS feed, one of those is me (to check it’s not broken), and I suspect most of the others are amongst those who also visit the site itself regularly. Popular blogs will do many tens of thousands of page impressions a day, and will also have thousands of RSS subscribers.

I feel popular, however. And for someone who courts obscurity, that’s an odd thing. I think, perhaps I feel safe hidden behind my false name on a website that can’t easily be traced back to me. I also feel safe because those of you who do read what I have to say understand me, most of the time. You understand because you have Asperger’s or a similar condition. I can’t tell you how unusual that feeling is. I’m usually the one in social settings that feels they don’t fit in, and that they don’t have anything useful to say – hence the aloofness off in the corner. It doesn’t work that way here though, and so to each and every one of you that has read what I have to say, and especially to those who have taken the time to comment, I say thank you. I hope you’ll continue to come back and provide me with interesting comments.

There is of course another reason for writing this article. It demonstrates quite effectively one of my Asperger’s traits. I can chat away in detail for hours about information that I’ve gathered that only has any significance to me. That famous Aspie trait works in writing too!

Why on earth would you want to know how many visitors my site has had? I still felt I had to tell you though…

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An unusual feeling

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