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.

Left Brain Right Brain describes itself as an autism blog. It presents itself as an autism news and comment site, often digging out little-seen articles and research from elsewhere on the Internet. I’ve been following it for a while, occasionally dipping into some articles in more depth. The articles are usually well written and thought provoking. In short, I rather like it.

So when, on Wednesday last week, a new article entitled Truth and Consequences – The Anti-Vaccination Movement Exacts a Price appeared, I was intrigued enough to read. What I read made me squirm, and feel very sorry for the mother and child that the article was about. With my newly made decision to comment more in the autism community, I set about replying. You can see what I wrote about six or so comments down. It is very me.

Perhaps I should have paid more attention to most of the comments above mine before I did so, as it turns out that they very much set the tone of what would happen to the thread of comments on the article.

As it happens, I didn’t check in again until the next morning. Suddenly there were a total of 198 comments. Goodness! I wasn’t expecting that. I started to read them, and found myself getting more and more drawn into the arguments and counter arguments that were being made. You see, the comment thread had got hijacked by two very different sorts of autism activists – those that feel that autism is a problem caused by vaccines and who also think that a regime of often questionable drugs and therapies (often referred to as biomed) can cure it; and those who think that the curebies are deluded, stupid and damaging their kids.

As I read, I felt my head swimming, and panic rising in me, but I couldn’t quite put a finger on why. When I reached the end, I wrote another comment saying how sad I felt about it all, but it didn’t hit the mark with me, or, frankly, with those commenters from both camps who were foaming at the mouth about each other. I felt awful – very down and agitated, and the feeling lasted for several days. My wife questioned what my problem was, and I explained about the article and its comments. She read it all herself and didn’t understand why I was so down about it – after all, the negativity wasn’t aimed at me. I didn’t understand it either, but it really had affected me badly.

It has taken a few days of contemplation to get over the feelings the comments stirred in me, and to really understand why this lively debate had such a debilitating effect. In the end, I’ve realised that this is interwoven with some things that I’ve written about before.

If you can tell me a good story, make it sound plausible, and put passion into it, then I will believe it. Let me see both sides of an argument, and I will empathise with both, and will end up sitting on the fence as I can’t determine which I agree with more.

You may call it naivety, or gullibility, and maybe it is. Whatever it is, it is an intrinsic part of me, and I can’t escape it. Apply this to the comment war in the LBRB article, and maybe you can start to see my problem.

Much of the time, I would read a comment from one camp, and think that it made sense. I’d then read a rebuttal from the other camp, and see how that too made sense, and overrode the original comment.  After a great many – no – a huge number of rounds of this, I was left feeling thoroughly perplexed. Everything and nothing made sense any more, and I felt completely panicked by it.

I come from a science background, so you’d think I’d plump for the side that were denouncing those who tried to cure their children of autism, wouldn’t you? Well clearly, my natural leanings are in this direction – I don’t think autism is caused by vaccines, or via an overloaded immune system. I don’t believe that you can cure autism either – I think it is a genetic difference.

However, faced with a mother who has an autistic child with some other medical symptoms that I coincidentally also have – such as a frequently bloated stomach, or frequent fungal infections – and I can’t help but take notice. When she talks about these being part of her son’s autism, and various biomedical treatments that have improved these conditions in her son, I start to get drawn in, and wonder if she might just be right. She is telling a good story. As usual, I see the minutae of the detail she talks about, and completely miss the bigger picture. So what if her son’s bloated stomach is better – who, other than she, actually said that a bloated stomach was a sign of autism…? If only I could have seen that kind of issue at the time – but I didn’t.

The comments completely overloaded me, and left me confused as to which was was up and which way down as regards autism. I could see how everything that everyone on both sides of the argument was saying made sense. And yet I knew that wasn’t – couldn’t be – right. I felt completely lost – like I no-longer understood myself or my place in the world. All from a couple of hundred comments arguing with each other.

So now I can see why I’ve been steering a wide berth from the advocacy sites over this last year. It isn’t the arguing that’s the problem, it’s my ability to see everyone’s point of view as being equally valid, and to then miss the bigger picture that tells me where I really should place my allegiances. I’m just no good at that side of things, and falling into the trap breeds fear and anxiety in me.

I am going to keep opening up this blog, just as I intended to do a week ago, but I’ve decided not to jump in and comment on any more advocacy blogs for the time being. Besides, I have enough on my plate just writing here, replying to comments, and commenting on a few other blogs.

Do you experience any issues such as this? I’d love to hear from you if you do.

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