The new breed of self-diagnosed researchers

One day, I realised I had Asperger’s Syndrome.

How did I reach this conclusion? I read an article on the Wikipedia, and saw how the traits that are common in the condition were a good fit for me. I made a leap of faith, and I’ve not looked back since.

Once I’d done this, I started to gather other sources of information from the web. First came factual articles from professional bodies that had an interest in Asperger’s, and then came the rather more personal blog accounts from people who wanted to share their thoughts on a condition they lived with. AS became a Special Interest of mine.

Writing is my favourite means of communication, the one that I’m most comfortable with and through which I find it easiest to express myself. Writing is my thing. I guess it was natural then, that I too ultimately chose to blog my thoughts and findings about Asperger’s. I started out doing this  because I thought that others might be interested in what I had to say.

And it was at this point that something unexpected started to happen. I started to make connections.

In the first instances, writing about how I saw my condition allowed me to have revelations about how the condition actually worked. By exploring traits and how they applied to me, I was able to see new and unexpected aspects about how they and I worked. I wrote these down, and published them for all to see. From the comments I’ve received, some of these have clearly caused similar thoughts and feelings in others, which is great to see – it makes me realise I’m not alone in feeling like this.

Eventually, I started to make connections through what others were blogging about AS too. My blogging peers all say things in slightly different ways, and often that now acts as a trigger for seeing some aspect of how the condition affects me in a new and exciting way. I blog about these connections too.

What I’ve realised in the few short months since I started writing here is that I seem to have something of a talent for seeing my own condition in a huge amount of detail. If I think, and get my thoughts on paper, then I can often see some really quite striking things about how Asperger’s really works. It’s far from being just me that seems to have this ability – those who write the other AS blogs that I read almost all seem to have it too, which I find fascinating.

I’m starting to think that the ability to see how our own condition works in the minutest of detail is quite an overlooked Aspie skill.

One article in particular has stood out to me this week, that I think illustrates this phenomenon very well. Rachel Cohen-Rottenberg did a review of the Theory of Mind test, and reached what I thought was a quite surprising, but astonishingly insightful conclusion. You won’t find Rachel’s theory in a book to the best of my knowledge, but it really rings true with me. Go and read it if you haven’t already – you won’t be disappointed.

As Rachel says in the above article:

I would much rather hear an autistic person describe his or her own experience than hear a neuro-typical researcher making statements about how autistic people view the world.

How wonderfully well said. I have a great deal of respect for those researchers who are dedicating their working lives to help understand our complex condition. Ultimately however, unless they have an ASD, they can’t fully understand how it works, and this must colour their judgement to a degree.

I genuinely think that the professional Asperger’s researchers would do well in subscribing to all the AS blogs they can find – because they will find a wealth of information that they won’t find elsewhere – information that they won’t get simply from the therapists chair. This is information that has often been formed via a melding of thought and writing – two things that foks with AS often have a skill with.

We can see things that they can’t, and what’s more, we are already writing about these insights.

The professional researchers really should be listening, yet sadly, I suspect they’re not.

If I’m wrong, perhaps you could let me know, by writing me a comment.

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