How difficult it is to explain

A friend pointed me in the direction of an article she’d heard on BBC Radio 4′s Woman’s Hour yesterday. It discusses an up-coming Autism Bill in the UK parliament that aims to make UK local authorities provide better access to help to those with Autism Spectrum Disorders.

Using the BBC’s excellent Listen Again feature, I was able to catch what was said, and for the next week, you can too via the link from here.

It’s an excellent piece, and I’d not previously heard about this Autism Bill. I’ll keep an eye on how it proceeds.

The most interesting part for me was at the start of the piece where the interviewer spoke to a young woman called Robyn who has Asperger’s. Robyn describes how she has problems with anxiety, and with over-thinking about things. I was struck with just how similar her perception of the world was to mine – a rare thing for me to find. She explained how she was receiving some unpaid help from a life coach specialising in people with AS, and how she felt that organised short term intervention from local authorities would be of benefit to many people with an Autism Spectrum Disorder.

The interviewer commented on how articulate she was, and wondered whether Robyn could appreciate why local authorities found it difficult to deal with people such as her who whilst having difficulties stemming from their ASD, clearly did not have learning difficulties nor straight forward mental disorders. Robyn said she could easily see the problem, and so can I.

Indeed, this problem has got me thinking. I can easily understand and empathise with Robyn’s difficulties in interacting with the world, but I wonder whether many people without AS or other spectrum disorders could.

If you just listen to Robyn’s words, she says that she has problems with anxiety, and with making and keeping friends. To someone who doesn’t intimately understand AS, this just sounds like someone who needs a bit more self confidence and perhaps some counselling to help her with her anxiety.

But that’s not it is it? Robyn is saying far more than this, but you have to read a little between the lines, and could easily miss it. If you understand AS, then you hear the underlying patterns in what Robyn is saying. You know that these are issues that Robyn is always going to have, even if her anxiety is effectively tackled. She’s always going to think intensely about things to the point that it prevents her from doing anything else. She’s always going to have trouble making and keeping friends. It’s the words that Robyn doesn’t quite say that are the really important ones.

I’m not surprised that Robyn found it difficult to find words that described her AS well. I have the same problem when writing this blog. I know how AS works and what it does to me, and despite being fairly articulate, I have a hard time describing how AS actually works to other people. When I re-read the articles I’ve written, I often get a sense that whilst I’ve managed to touch upon something, I’ve failed to explain it well enough for others to get it. It’s almost like AS can’t be fully described in words, because the words we have describe a non-AS world. Maybe that’s why I rely on metaphor to get my points across so frequently. Does that make sense to anyone?