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.

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7 Comments

  1. I would have to agree with your friend that having a “label” for which to call the “disorder” (if you want to call it that) one suffers from seems largely helpful.
    However, I can also see that it could definitely lead to a lot more questions. Do you think that if they ever came up with a very specific reason of why it occurs, that you would be completely satisfied, or would you still want to know more?
    I think that what you’re saying about it not being a bad thing is also correct. It’s just “different” from what most people are like, so it’s a “disorder”, but it’s not wrong behavior.

    • I think if I had specific reasons, it would enable me to understand the nature of the disorder, and I would be able to plan my strategies with more understanding, rather than randomly experimenting with all kinds of strategies to see what works and what doesn’t!

      I think too, if the specific reasons were known, then specific medications could perhaps be devised to counteract the unpleasant aspects. And also, once something is defined and pinpointed from a biological perspective, then people take it more seriously. At the moment, the medical professions don’t know how to categorise it, don’t provide services, and have very varied understanding of it – for instance, I have a doctor who tells me quite frankly that he doesn’t believe in Asperger Syndrome!

  2. For me with my son, the diagnosis started as a search for answers. Being given the diagnosis validated my suspicion that something was wrong. I didn’t have a “bad” child. However, after that hurdle was crossed, the label became simply a means to an end. It gives us access to specific assistance and narrows the search when looking for coping mechanisms and ideas for navigating life with Daniel’s specific brain configuration.

    Like you, I don’t see Asperger’s as bad. I see it as a word that describes certain strengths and weaknesses. Everyone has their specific strengths and weaknesses. Aspergers may be more exaggerated but that does not make it bad.

  3. *nods thoughtfully* Admittedly, a fair amount of research is going in to the differences in the brains and genetics of those with ASD (at least, as far as I’m aware; I’m hardly an expert, here!).

    For me, getting the official diagnosis was a relief in two ways. First of all, it gave me a medically validated “opinion” with which to get access to support services, some of which I desperately need (and don’t have yet!); secondly, it let me say, “Yes, I do have Asperger’s. I have (some form of) an explanation for why I’m different, why people can’t understand me, why I feel like I’m on one side of a chasm and everyone else is on the other. And it means *I’m not alone*. There are other Aspies out there. There are other people with ASD out there. There are people who are trained and willing to help out there (if only we’d gotten to see some of them *earlier*…). And it means that there *are* people out there who can understand me.”

    *That’s* what the official diagnosis meant to me. Yes, we knew I was an Aspie (unfortunately, only from when I was in my mid-twenties or so). It became fairly obvious as time went on. But having the medically validated decision that yes, I was, took a load off my back. I was less willing to apply for services and tell people I was an Aspie without that paper to back me up. Now that I have it… well, that was my reaction.

    Anyway, just thought I’d provide an additional perspective.

    😉 tagAught

  4. I’m an aspie and ironically my dad is a professor is psychiatry. If I plagerised this entirely, he would believe it was me. I have much the same problems. Intensely analytical or emotional but have great difficulty being both simultaneously. My theory is that in aspies, intra-connection dominates interconnection between functional regions of the brain.
    I have a a genius IQ but am a social moron. Neurotypicals can’t seem to compute that, and consequently accuse me of using aspeger’s as an excuse for any social firpaux.
    I’m ok alone but as Jp Satre put it… he’ll is other people. After trying to drown away asperger’s with alcohol, acceptance saved me I think. I too can’t understand neurotypicals. If being different amounts to neurosis, humanity is neurotic given that we are all different.
    But didn’t god give different colors to the rainbow to make it beautiful? Our differences then make humanity a vast rainbow under God’s great heaven. Don’t the neurotypicals say that variety is the spice of life?

  5. At last I have found somewhere that helps me to make sense of how I am and that in the parts of me that I thought were weird or wrong are probably in fact attributable to the fact I may be a female with Aspergers. I can understand both points of view: I follow your friend in the first instance – seeking a diagnosis for the answer, the validation, but then that analytical and logical and immensely detailed me will come into play and want to seek every little piece of information to help it all make sense – which if I understand you correctly is how you feel. Thank you very much for writing this blog.

  6. I have not been tested for Aspergers, but I have so many attributes I feel certain that I am affected. It seems to me that wanting to know more is a symptom – ‘more detail’ as other existing information seems too short or misses the mark. I keep finding pieces, and it helps me understand. Recently I was curious about the ability to imagine (or non-ability), and from that I thought about the one time a counselor tried to hypnotize me – it failed. I felt that she was upset with me, as if I were resisting. That was some time ago, but it stays on my mind. I have wonder about the relation between my inability to be hypnotized and other inabilities. Anyhow I recently did some research about whether everyone can be hypnotized and I found that about 25 present cannot – and that it is related to the ‘executive command’ area of the brain. …I guess that I continue to search because so many of my friends do not understand my position, and why I so often feel that I just don’t fit in. Just do ‘this’ or ‘that’ my friends advise, but it is like hitting my head against the wall or I feel like ‘the lights are on but nobody’s home,’ while they continue to misunderstand me. Sometimes I feel that it is a gift, the Aspie attributes, and that my real successes will arise from it. I am now retired and I feel that the Aspie qualities made me a good draftsman. …I will continue to research. Thanks.

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