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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19 Comments to “Sitting on the advocacy fence”
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Thanks for this thoughtful post. I often feel the way you describe. It’s great to be able to look at both “sides” and empathize with each, while recognizing when empirical claims are being made, there is a “right side.”
Empirical claims are one thing, but the right path to take is a much more nuanced question, and while I don’t believe my son needs a cure, and I have problems with a great deal of “curebie” activity, I can’t bring myself to judge parents who choose a different path from mine too harshly. I do feel quite sorry for parents like the one described in the LB/RB post, and I fear greatly for her son, because I think a few parents go beyond what can be rationalized as potentially helpful for the child; for them, the cure becomes a quest that eclipses the child’s real needs. Just my opinion, of course.
Anyway, I think it’s a shame if you refrain from speaking your piece in comments, but I understand and empathize with your reasons.
Cheers!
Hi and welcome, Squillo.
I too find it hard to be critical of those who choose a path that is different from my own – hence my sitting on the fence, I guess.
I have come unstuck unintentionally too many times not to be, perhaps.
There is a big thing surrounding the understanding and expression of emotion about all of this that I need to capture, I think. I’ll see what I can come up with.
Hope you find the blog useful,
James
“an autistic child with some other medical symptoms”
ISTR reading that autistic children are more likely to get a lot of ear infections.
http://www.ncbi.nlm.nih.gov/pubmed/3680158
James, I feel as you do when I read any blog in which there are warring factions. If I try to get involved in the argument–or even try to speak to my sadness over the whole thing, as you did–I just end up agitated.
I can’t say that I empathize with both sides of an argument, because I generally lean in one direction or another. The difficulty is that I empathize with the *people* on both sides of the argument. When an argument gets vociferous, you’ve got suffering people on both sides, and my poor Aspie mind keeps trying to find the way to say something that will speak to the suffering rather than to the argument. Of course, it’s futile. If the people were capable of knowing how to deal with their suffering in a constructive way, they wouldn’t be fighting on a blog.
It’s also very disturbing to me to follow these kinds of arguments because most people have already made up their minds before they even begin. So what’s the point of arguing, exactly?
Anyway, debate is not my strong suit. My mind can do it, but my nervous system does not come along willingly. I’d rather just share my experience with others so that we can all feel less alone. That’s the only kind of advocacy I really want to do.
Hi Rachel,
Oooh. That’s it. That’s what it’s like. I do lean towards what I consider right, but empathy means that I see the other standpoint too, and don’t then feel able to discredit it. I do, in a sense, empathise with both sides of the argument, but ultimately it is the people making the arguments that I’m empathising with.
Your whole comment is quite brilliant, in fact. I agree totally with everything you are saying.
I have a strong sense that I want others to understand and see me. Not the me that they usually see, but the real me that I hide underneath. This blog and my interaction with people like you is me starting to do that, I think.
I’ll sometimes jump in and comment on something then get stomped on by a whole bunch of other commenters.
It’s a rude wake-up call but sometimes I need that to see past my own limited experience.
Of course, the advocacy sites are the worst of the worst and many people on them speak without thinking.
The recent Autism Speaks video is a really good example of this. The first few comments I read were very positive and I realised that the early commenters (who were from Autism Speaks) were only thinking of their main message and not about the rest of the video.
The main message in that video is a good one… “Autism sucks but we’re fighting the problems together”.
Unfortunately, the way it’s presented is so overwhelmingly negative that it ends up insulting the people it’s trying to support.
It ended up being a “comment war” but there is a lot of good coming from both sides – if only we could be open-minded enough to see it.
Gavin,
Glad to hear that it isn’t just me that comes unstuck when commenting on other sites.
I have to say I really don’t like Autism Speaks, because they view autism as a curable illness that should be eradicated.
Sure, autism sucks from time to time, but I wouldn’t want it removed from me. It is a fundamental part of who I am. Losing it would be like losing my sight. And besides, it can’t be removed, so I’m not sure why I’m even making this crazy analogy…
I hear you James! You are witnessing a lot of people in a discussion and they are all distressed by distress in others and on top of that they are challenged when it comes to Gestalt thinking (seeing the big picture). It’s the perfect recipe for escalating anxiety. I come from a large family (I have 7 brothers and 6 sisters). Whenever there was a fight between two siblings, I would feel a panic that didn’t dissipate when the fighting stopped. Unless somebody apologized, I felt that lack of resolution as a kind of crushing discord. Inevitably, my best memories of childhood are the times when things were quiet, those rare moments when it seemed everybody was content. I have great memories of the beach, since there was enough space for everyone to be together without being crowded. I still live near the shore, and the sound of the ocean calms me like nothing else. When your anxiety gets ratcheted up as you described, you need to find your “happy” place.
Hi eaucoin,
I think I probably need some more therapist time to work on anxiety issues – I don’t really have a concept of a happy place to fall back on.
My goodness – you really do come from a huge family. That must have caused a lot of tensions. Your description of the panic that arguments caused in you is almost exactly the same as the feeling that I get in similar situations as well.
It’s horrid, and I can see the lack of sense in it. The argument isn’t with me, and yet I feel this powerful panic – just as though I was involved.
As per my reply to Squillo above, I think there is an article brewing about trouble dealing with and understanding powerful emotion, that stems from this sort of reaction. Will be interesting to see how the article ends up writing itself.
I’ve noticed that I’ve really begun to avoid any sort of web ‘discussions’ because everyone is so fixed in their opinion… myself included. So it’s actually a conflict, and my anxiety levels are through the roof right now, so more conflict is the last thing I need.
I’m more naturally an ‘I’m right and everyone that disagrees is an idiot’ Aspie… working on that attitude. {{sigh}}
It’s just that MY reasoning makes so much sense! LOL
DonkeyBuster,
I hear you loud and clear on this. I also tend to feel that my version of events is right, and that everyone else must be wrong.
This tends to express itself in areas where it shouldn’t too – I can talk at length about something that I’m really not that knowledgeable on, yet make it sound like I know it in detail. Of course I’ve come unstuck at times doing this, which is very embarrassing.
Your experience of anxiety and conflict sounds very much like my own. You have my sympathy if you are suffering with at at the moment. It’s a horrible thing, and so frequently out of control.
James
Thanks, James. I’ve just found out someone I thought was a friend is not, so life is a bit fractured right now.
Yes, I can also sound quite knowledgeable about something I actually know very little about, and I’ve occasionally been caught out.
What is even more distressing in a way is when I’m not found out and people take my word as authoritative and act on it when all it really was was my reasoning on the matter, maybe coupled with a tiny bit of info.
I just want to remind them to do their own thinking, not ride on my brain’s coattails. It’s not like my life is such a bang-up success. Gah!
Yes, that can be problem for me too. All of a sudden I go from feeling sure about something to realising that actually I’m not really sure, and was just providing my own reasoning.
Oh and congratulations! Your comment was the 500th legitimate comment on the blog!
James
Hooray! {{hand clapping}}
But now I wonder about the illegitimate comments… =o)
{{joking}}
Well, The Akismet plugin in my WordPress install claims to have stopped 3652 spam comments thus far….
Do you have the tinned meat “Spam” over there? I’ve got a whole recipe book for it… a recipe for every day of the year. LOL
pity one can’t eat ‘net spam… LOL
Ha! Yes, we do have spam in the food sense here in the UK.
I really can’t imagine any recipe using it, let alone one for every day of the year – the mind boggles!
Oh yes… today’s recipe is “Garden Fresh Pasta Parmesan”.
Spam is like the national food in Hawaii… they have some really yummy ways of fixing it.
It’s my dirty little secret that I LIKE Spam. I know it’s very Politically Correct to shudder when it’s mentioned as a food, so I made a Spam dish for a Halloween potluck once… but lots of folks in my small rural town like Spam, so it didn’t have the desired effect.
Made a delicious Spam dish for another potluck in a big city. A friend came up and complimented me on the dish, said she ate 2 helpings, wanted the recipe… but when she found out it used Spam, she turned green and nearly bolted for the bathroom. ROTFLMAO
If I’d made the dish out of organic free-range kielbasa, it’d have tasted the same, but been culturally acceptable.
What the mind can do….
I just found your blog today, and I’m seeing a lot that interests me. I’ve added you to my blogroll. I don’t have a lot of time to write today, but I wanted to mention that I’ve just within the past couple days come to the same conclusion regarding commenting on these types of issues tht stir up so much debate. I have always found myself able to see valid points on both sides of important issues, and supporting one view always seems to mean opposing another. I also tend to get a bit overwhelmed by the arguing, because it frustrates me that other people can’t see multiple points of view no matter how things are expressed to them.