The levels of ‘why?’

Yesterday I was talking to a friend who also has Aspergers, and we were discussing the purpose of diagnosis.

I was saying diagnosis only has meaning if you can get support as a result. For myself, although I’d felt sure for years that I had Aspergers, I never felt the necessity to get a diagnosis until a couple of years ago, when I needed specific support at college and a diagnosis was the only way to get it. So my diagnosis was a means to an end.

For my friend, however, her diagnosis meant more than that. She explained that she’d always known something was wrong, and she’d wanted to know the cause of her problems – she’d wanted an answer, an explanation.

‘But then no one knows the cause,’ I said. ‘There is no explanation.’

‘Yes, there is,’ she said, looking surprised. ‘Aspergers. My diagnosis gave me the answer.’

‘Yes, but I mean no one knows what exactly is going on in the brain. Aspergers and autism are just labels for a set of behaviours, rather than an explanation. No one understands exactly what Aspergers really is. So there is no answer.’

We were both approaching the question from different levels. For my friend, knowing that she had a certain condition gave her the answer she was looking for.  For me, knowing I had a condition simply presented more questions. I want more than a label. I find it frustrating to know that I have a neurological disorder/difference that researchers don’t understand and don’t even agree on! I want to know exactly how my brain works, and what is going on in my brain that is different from non-autistic brains, to enable me to find strategies to deal with the difficulties Aspergers presents, and to make the most of my strengths.

One interesting piece of research I became aware of a few years ago is a brain study by Uta Frith, focusing on executive function (this is about the ability of the brain to organise and control one’s behaviour – to start things, to switch from one thing to the other, etc).  As organisation is a major difficulty for me, I was pleased to find something concrete on it. The results of the study showed that people on the autistic spectrum have disruptions in neural connections, particularly between the part of the brain that looks at the big picture (top-down processing) and the part of the brain that looks at the details (bottom-up processing). I have found a short YouTube video where Uta Frith talks about this research here:

This immediately made sense to me, because I can look at the big picture, and make an intricate plan of action, and I can also focus on details, but I have great difficulty doing both simultaneously, and also switching from one to the other. So once I’ve made a plan, I find it very hard to switch from ‘big picture’ mode to the nitty gritty details of carrying it out. And conversely, once I’m focused on the little details, I lose the sense of the big picture.

Lately I’ve been thinking more and more about Aspergers in terms of neural connections and integration. It seems to me that all the behaviours of ASDs could be explained in terms of connection disruption. For instance, take difficulty multitasking – connection disruptions in the brain prevent the autistic person being able to focus on more than one thing, or to switch easily and rapidly from one thing to another. And then take sensory integration difficulties – connection disruptions in the brain mean the brain can’t integrate sensory information smoothly. I realise (with frustration!) that ‘connection disruption’ is very vague, but to me it at least provides some kind of basic framework for understanding myself, and is more specific than a label of Aspergers.

Anyway, what I want to do in this blog is to talk about my own experience of Aspergers. In the absence of any real understanding of what is going on neurally in the brain, I can talk about what is going on subjectively in my mind. And I can relate this to the idea of neural connection disruptions and consequent multitasking difficulties, and various theories and research that I read about. And perhaps I can address the question of ‘why’ on some level – the level of ‘I behave like this, and have this difficulty, because this is what is going on in my mind.’ It is at a subjective ‘mind’ level, rather than at a more scientific ‘brain’ level. But perhaps in some ways the mind level is more useful from a more practical perspective of understanding what it’s like, subjectively, to be on the autistic spectrum.

I know there are other levels of ‘why’ too – the ‘why me?’ level, and the existential level of whether there is any higher purpose in the fact that someone is on the spectrum. I don’t think this blog will deal with such questions, because I don’t really see it in those terms. Not that I don’t think in spiritual terms – I have a strong faith in God, and I do think a lot about spiritual things, but I don’t see it in terms that God specifically chose for me to have Aspergers for a particular reason. I just see it that he makes everyone different, and that each person has their own particular strengths and challenges, and that given a situation is what it is, it is up to me to make the best of it, and find strategies.

I actually don’t see Aspergers as an innately bad thing – it’s who I am and I like who I am. I would like to have better organisational skills, and I wish I didn’t become dizzy under fluorescent lights, but I enjoy my focus on detail and my quirky perspective on life. You know, I lined my toys up as a child, I spent hours looking at books that had pictures of all the types of flowers, or trees, and I memorised huge chunks from movies – all these ‘symptoms’ of Aspergers – and I enjoyed every moment! Those things are really not the same kind of ‘symptoms’ as, say, getting unpleasant blisters with chicken pox! I did also find people very confusing, found school pointless, got into trouble because I spoke to teachers as if they were my equal, and would easily get very angry and confused and upset. So my childhood was a mix of good and bad. But then I see life as a mix of good and bad, and the older I get, the more I see this is the same for everyone, and I really don’t feel disadvantaged. Well, in some areas, I am at a disadvantage, but then in other areas, I’m at an advantage.

However, I am very aware that the majority of people don’t really understand what it’s like to be on the autistic spectrum. An advantage that neurotypical people have is that they are the default – the norm – to which the world is catered, and by whom the world is interpreted. So I’d like to be able to explain what it’s like to be on the spectrum, from my perspective, just as other people on the spectrum explain it from theirs. I’d like to be one of the Asperger voices explaining what it’s like from the inside.