Friday, 8 November 2013

You don't know what you don't know

Sometimes, you don't know what you don't know.  And in when that's the case, it's really hard to find any useful information.

Take, for instance, my long slow process of figuring out what my body's telling me.  It took me a long time - into my 30s - to work out the difference between the sensation of hunger and that of anxiety.  (I still get the two mixed up, and suspect I always will.)  One of the reasons it took me so long to get my head around this was that for much of my life I've been unaware that the way my body experiences both physical sensations and emotions is different from other people.  Only once I knew that was I in a position to start trying to work out what individual sensations meant, or separating similar-but-different sensations like hunger and anxiety which I'd previously thought were one thing.

But what if you don't know that your body is different from other people's?  How would you even begin to work that out?  Before I started properly getting my head around this Aspergers business and listening to other people on the spectrum, I'd never heard the remotest suggestion that everybody's senses weren't identical.  The discovery that sensory dysregulation is a thing which exists was a massive key for me, which unlocked all sorts of self discovery.  I would never have stumbled across that key if left to my own devices, no matter how long I spent scouring the internet or contemplating my navel.  Because I just didn't have enough information to work with.

Another more basic example is the concept of Aspergers itself.  My own diagnosis involved a great deal of luck and co-incidence, and I probably never would have worked it out myself.  A lot of people do make meaningful self-diagnoses, but I doubt I'd have ever made that connection.  I had a very 1980s Readers Digest idea of what autism was, all tragedy and horror and small boys, and would never have realised there could be a me-shaped space on the spectrum.

That's one reason why it's important that lots of Autistic voices are heard, from all sorts of very different Autistic people from all over the spectrum.  The countless unknowingly Autistic people who are still out there, wondering what's wrong with them and why they're so utterly, utterly alone in the world, deserve to know they're not wrong and they're not alone.  They deserve to know there's a reason they are the way they are, and a global community of others like them.

They deserve a key.