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?
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4 Comments to “How difficult it is to explain”
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I found your blog last night. I’m a tiny bit younger than you and female but I identify with you tremendously.
I’m self-diagnosed with Aspergers. I suspect that my case isn’t that serious as I don’t have the difficulty with visual sensory overload. I also don’t do stimming or make funny noises (as far as I know). I am very sensitive to things moving around in my digestive system and I like to wear the same clothes all the time.
However, I have had huge problems with the way I think about the world. That’s why I call my blog “An Ordered Mind.” I’m not narrow minded in the sense of prejudiced, but I don’t have a very flexible mind. I like to fit things into categories, and when they don’t fit I can become very anxious.
I think “normal” people are quite good at taking things one day at a time. I tend to plan too much. Until recently I was unable to really enjoy my hobbies because I felt that they had to have a purpose and a function. I couldn’t process the idea that they were worth doing because they were relaxing.
I’ve made slightly unwise career choices because I have a very either/or mentality. I’m liable to set my heart on doing a certain thing. I then struggle a lot to get over it when it doesn’t work out.
At the moment I’m trying to find ways to move away from this way of thought. I know it’ll always be within me, but I believe that some lifestyles encourage it more than others.
I am very sociable (admittedly not with people of my own age group) and I find that when I’m very involved with other people’s lives it takes my mind off my anxiety. I’ve also just started to take an interest in gardening and domesticity. I find that physical work helps me to live in the moment.
Hi Soph,
Isn’t it wonderful to find that there are some people in the world that think and act very much like you do? It took me many years to realise it was the case.
You seem to be at a similar place to me – trying to adjust your life to how you now realise it works. Trying to do things in the same way that normal people do them doesn’t always work, does it?
I hope you find my articles interesting. I’ll be checking out your blog too.
Hi James! I found your blog through Rachel/Asperger Journeys.
This article is interesting to read. I really know what you mean. I often shy away from taking to “normal” people and other parents about myself or my daughter because I so often get told how normal everything I say is. Only I know that it isn’t. I know that I’m not, and I never have been.
I think one thing we never manage to convey adequately is that AS is pervasive. It affects all aspects of our lives (some more than others) and is present throughout our lifespan. It doesn’t go away with a bit of therapy. We can only learn how to live more effectively in a world that doesn’t always embrace us for who we are.
Hi Quirky Mum,
Welcome, and I hope you find some of the articles here help to give another perspective on things. I’ll be keeping an eye on your blog too now.
Pervasive is an excellent word to describe how AS impacts on our lives. It really is the bit that normal people fail to grasp, in my experience. I guess I need to find a brilliant example that explains the pervasiveness of AS, to use when I start to tell those around me about how the condition affects me.