One of the things I'm still learning about is the language of autism and how it's used. One of the earliest examples occured when I was corresponding with a fellow blogger, mom-nos about the way she was describing her son. She always wrote when mentioning autism that her son is autistic, but what I prefer to say and write about my daughter M is that she has autism. It's a very fine distinction that makes a big difference about the way we think of autism and the people who have it. Mom-nos pointed me at one of her posts which explained why she wrote and thought that way and also pointed me to a post written by an autistic person, Jim Sinclair, who mirrored her thoughts.

In a nutshell, it's about how autistic people view themselves, some take the position that autism is so intrinsic to them, so much a part of themselves, that it makes them the way they are, the way we view them and as such are more comfortable being called autistic as this defines their character, which can't be separated from them. What Jim would like me to say is "Jim is autistic" and I respect that and would happily do so, but what I'm really longing to say is "Jim is a person" and by calling him autistic, it's distracting me from the main game - his personality, who he really is, of which autism is just a part.

With autism there are several defining traits that need to be present in order to arrive at a diagnosis, some of them are easy to spot, speech delay, lack of eye contact or the inability to socialize with others. But some behaviours that are identified as autistic are also common to all people. Have you ever seen someone nervously rocking their leg up and down or another who likes to have their possessions lined up and ordered just so? What about someone who becomes obsessive about a hobby or interest and how do you feel when someone sits in your favourite chair, slightly uncomfortable?

There might be little bit of autism in all of us, which should come as no surprise, autism is the result of the brain being wired up a certain way and causes some behaviours and thought processes to be modified or amplified, the acme of which can be seen in autistic savants, people who have an extraordinary gift or abilities, the most famous of which would be Kim Peek, who was the inspiration for the movie Rain Man, with his eidetic (photographic) memory. But all us can recall detail to a lesser or greater extent and there is some evidence to suggest that you can train yourself to have total recall, so the latent ability may well reside in all of us, it's just that Kim's brain was pre-wired for total recall, he didn't have to work at it. But if you were to work at it, you could in theory get a part of your brain to wire itself up just like Kim's.

So if it's the brains internal wiring that is responsible for autism, yet it might be that all of us possess some of its traits, how is it possible for autism to define who you are? All of us a wired differently, no one is the same as the other; all people with an autism diagnosis are considered somewhere on a spectrum - precisely because they are not the same as each other, which is exactly like every other person on this planet, so when you tell me you are autistic, you are telling me nothing about yourself, other than you may have some qualities that are unique to you, just as I have qualities that are unique to me, some of which we might share. It's as if autism is hiding you in its shadow. But when you tell me you have autism I immediately see you as a person who has disclosed a part of who you are with me, you are saying to me that you have autism, it doesn't have you. That's what I want, to see you as a person.

Thinking like this was central to how I viewed my own daughter after we had received her diagnosis. It didn't change a single thing that I thought or felt about her though it certainly helped to explain a few things, but M was exactly the same person after the diagnosis as she was before it, nothing changed to make her different and I treated her no differently because of it. Sure, we had to learn a new way to approach certain things, for instance we used picture scripts of what we wanted her to do and she used those same scripts to tell us what she wanted, the pictures being easier for her to understand than language, but her essence, her character, her being, nothing changed.

When I look at M, I don't see autism, I see my daughter.

Labels: understanding autism