Tuesday 12 May 2015

Still a way to go...

Earlier this week I had a nice phone call with my brother - he's non-verbal, so our phone calls usually consist of me enthusing over the things his carers have told me he's been up to and speaking to him happily about my day. Usually he only listens for a few seconds, maybe half a minute if I'm lucky, before he pushes the phone away. This time after he pushed the phone away the carer who came back on told me that he was clapping, which he does when he's really excited, so I'm feeling great that speaking to him left him feeling this great!

I was relating this to someone earlier today, who I thought I'd told about my brother. It turns out that, at least to this person's memory, I hadn't explained much beyond "He has profound autism." I'm happy to explain more about him, so then I told her about what he's like day to day. Then she asked more about the theories of autism - is it something different in the brain, are people with autism aware of having different thought processes, so what parts are autism and what parts are other disabilities or personality, so how do people with autism concentrate on one thing when they're overwhelmed by stimuli, so how is my Asperger Syndrome different to his autism and to other family members' autism... It's been a while since I've had to give such an explanation and had to clear up some misconceptions (including that autism isn't an illness, for starters), and annoyingly since the conversation was in Spanish (I speak pretty well, but my vocabulary on autism is very limited) I doubt I explained things that well.

After the event it feels similar to when I've had Asper-communication fails, where my point hasn't come across because I've not quite understood the meaning of what the person's saying, because I can't find the words to express what I want to say, or because the words I use come out wrong and can mean something different. Speaking Spanish that I've learned through listening (I studied Spanish formally for 6 months aged 16, then for 8 months aged 19) is a lot like trying to speak English when my Asperger plays up. Hmm, I'd not considered it like that before. Maybe that's one way to describe what it can be like having Asperger?  Trying to learn another language by ear, since there aren't verb tables for how to 'be'. I wish I were better at picking up languages.

When I have Asper communication issues, I feel awful, but with Spanish communication issues I'm now feeling annoyed and a bit bad about it but I don't see it as my fault for not knowing how to do something. I wonder if the times when I have felt bad (beyond annoyed, that is) for not knowing something in Spanish is more due being stressed and feeling Asper? Or maybe I'm just trusting more that people can on the whole understand me even though I make mistakes, and that it isn't too bad that I don't speak perfectly.

I've gone off-topic, I'll redirect.

A few years ago I took part in a documentary to try to clear up some of the misconceptions about Asperger Syndrome, which I've blogged about before. The conversation I had earlier highlighted to me just how much more awareness-raising there still needs to be. I think that the documentary's tagline says it all, really - "If you have met one person with Asperger Syndrome, you have met one person with Asperger Syndrome."

The link to where the documentary was previously hosted is out of date, so here's the new link.

I really dislike watching videos of myself when I was younger, so today I only rewatched the first minute to check that the link worked. Even when I watched the final version of the documentary I didn't feel that I'd explained things as well as I could have, but it gives an idea of my thoughts at that time. 

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