Wednesday, 30 November 2016

What's Going On Inside?

One of the big debates which happens in the autism world is: what is my child really experiencing/understanding/thinking?  Especially if your child has difficulty communicating, it can be impossible to guess what's actually going on in his or her head.

People tend to assume that the child thinks and experiences the world basically the same way as everyone else, with a blockage of "autism" making some senses more intense and keeping the child from sharing those thoughts.  There are always a few inspirational stories floating around the Internet of a severely autistic child who suddenly finds a way to communicate and the family discovers that he/she is basically normal inside.

I don't share that belief.  I look at my son and I believe he experiences the world in a very different way than I do.  I can only guess at what he experiences, but I suspect it's a world where shapes and patterns that I don't perceive stand out in sharp relief for him.  I suspect it's a world where sounds are muted and blur together, like listening to a radio in the next apartment.  I suspect that his brain puts together memories and experiences in a way that I can't even guess at, perhaps as a series of disconnected images.  But I don't know, and I'll probably never know.

We've been cautioned many times by therapists not to assume that Alex understands what is going on around him in the same way that we do.  He's very intelligent so there can be an assumption that he only needs to pay attention and he will grasp something.  But it's not a matter of paying attention.  I think that at times, we are asking him to participate in an entirely alien way of dealing with the world.  It's unfortunately necessary if we want him to have even a basic level of independence.  Otherwise we will have to be his interpreters for the rest of his life.

I'd love to know how he experiences the world.  There are days when I think that is the real blockage facing us: the fact that I can only guess at what is inside his head.  

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