The cuckoo in the nest of life

One of the really great things about the Internet from my perspective is that you can learn from others. Each morning I eagerly look at my Google Reader to see which of the blogs that I follow have new entries. I follow lots of content about a lot of different things, and I learn a lot from the experiences of others, but perhaps my favourite blogs are those written by others on the Autism Spectrum.

This morning I read a short but rather striking piece by Sophia Battenburg on her An Ordered Mind blog. I say striking, because as often happens with AS blogs, the writer has put things in a slightly different way to me, and from that I’ve seen new connections to how I behave and interact that I’d not seen before.

Sophia says, in the context of having her routine interrupted by noisy people in her living space:

I am coming to terms more with emotions, as I’m conscious that I block a lot of the negative ones out.

This rings true for me. What it has also done is make me think about why both I and Sophia block out the negative emotions in situations that we are not comfortable with. I think I know why.

Both Sophia and I did not discover our AS until we were adults. This means that we’ve grown up having to make sense of the world from an angle where it actually doesn’t make a great deal of sense a lot of the time.

In my case at least, social interaction has most of the time come from repetition of what I’ve seen others do, through a bit of guesswork, and from learning when my reactions have seemed to be inappropriate. In other words, it’s lacked the intuition that most people use. In order to survive, I’ve had to blend in, using mimicry.

You have to remember that this was the thing that came naturally to me, not the intuitive interactions that my peers used. It seemed like the normal thing to do, even if it was a little confusing, as it didn’t seem to be quite the same as what my peers were doing.

With all this in mind, you can see how a situation such as that described by Sophia ends up with her bottling up her negative emotions. When I feel uncomfortable with a situation such as invasion of my space by noisy people, I too will bite my tongue.

Why? Because I have observed over the years that no-one else comments on it.

These days, I can see that no-one else sees it as a problem – they simply don’t have the same sensory overload and broken routine issues as me. Until it became clear how my Asperger’s affects me, I assumed that others too felt the same discomfort, but simply didn’t feel it polite to comment on it. As my social responses are primarily learned from others rather than being from original thinking, I’ve always towed what I think is the correct line. I say nothing, because that is the response of those around me. I bottle up the discomfort and negative emotions, just like Sophia.

Those of us who grew up with undiagnosed Asperger’s are cukoos in the nest of life. We mimic those around us to get by. If that means keeping quiet about situations that cause us discomfort, then that’s what we do, because that’s what those from whom we learned appeared to be doing.

Can I break this behaviour now that I’m aware of it? I think so. Ask me in a year.

Yoko Oh No!

It was World Autism Awareness Day last Thursday. I was very busy at work, and unfortunately didn’t find the time to comment on the day itself.

I did read this article though, about Yoko Ono auctioning off a work of her art as jigsaw pieces in aid of Autism Speaks – an organisation that I know very little about.

Initially I thought it was a wonderful way to help raise awareness of Autism Spectrum Disorders, but this feeling didn’t last long:

Speaking in front of a crowd at the unveiling, she said, “Once the solution for autism is discovered, we will see the sky shimmering in its original beauty, with no holes.”

Oh dear. A solution for autism? Bad use of metaphor that not even I would use?

Now – I am well aware that well-tailored therapies can help those of us on the Spectrum enormously. Even without therapeutic intervention, many of us can lead full and satisfying lives.

What therapies can never do is cure autism. I don’t want to put words in Yoko’s mouth here – she didn’t use the word cure, and indeed solution may not equal cure in her eyes, but it sure as hell sounds like she thinks that ultimately autism can be eradicated.

To me, she also suggests that to have an ASD is to have a life that isn’t complete. I find that insulting.

I understand that you want to help, Yoko, but I won’t be buying a piece of your jigsaw. The sky does not have holes in it, and my life is no less beautiful simply because I have Asperger’s. Indeed I often think quite the opposite – I can see a side of life that most people cannot, and that in itself is beautiful, and can be a very useful skill.

How I was taken in by press distortion

The New Scientist has just published an interesting article by Simon Baron-Cohen about how his latest research into autism got misrepresented in the UK press earlier this year.

Simon points out that whilst the authors of the article, which appeared in The Guardian in the UK, did a reasonable job of reporting the actual facts of the study – how it measured a correlation between testosterone levels  in the amniotic fluid of 235 children who do not have autism and various character traits – the article badly misrepresented the results of the study. Simon feels that the editors of the article distorted the facts by attaching misleading and wrong headlines and by using an emotive picture. The article also linked the research to pre-natal testing for autism – something which Baron-Cohen points out wasn’t a part of the research at all.
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Bulldozing new neural connections

The ever thought-provoking John Elder Robison has an interesting new article on his Look me in the eye blog regarding some research work that he is involved in as a test subject. The experimentation involves looking at brain plasticity, which is the ability for your brain to make connections – to learn things – and whether this ability differs between those on the Autism Spectrum and not.

I found the article, and the research behind it fascinating.

The Harvard team behind the test are finding that indeed there does seem to be a difference, with those on the Spectrum better able to make new connections than those who are typical. John uses the analogy that he has a bulldozer for clearing new paths through his brain, where as those without Autism have machetes.

This rings true for me, and coincidentally I touched upon my ability to learn new things easily in an article I wrote just a couple of days ago.

If you give me something to learn that enthuses me, then I will learn it backwards and inside out in a surprisingly short period of time. Clearly, the mechanisms that surround special interests come into play, and I will consume and store many facts about the subject very easily.

This is a skill that comes in very useful at work, where I can be given something to investigate, and I’ll do a good job of it quickly, without fuss, and with a detailed written report at the end. I may even appear excited as I dig out details, making all sorts of little noises and giggles. It’s a skill that I’m valued for at work, and it’s one that in my experience people without Asperger’s seem to lack most of the time.

The other thing that grabbed me was John’s description of how his son can learn things easily, but if he concentrates on more than one thing at a time then the data gets mixed up and confused. It’s great to hear that others experience this too.

I’ve always described this attribute of my character as being ‘linear’. I do things one at a time. I learn about one subject at a time, and I experience and express emotions one at a time too. When I tackle a new project at work, I find that it very quickly tramples on my ability to access data from the previous project. Someone will ask me me about something that I knew in detail the previous week, and I find I have to refer to notes I took to jog my memory. It’s not that I’ve forgotten the information, it’s just that I’ve lost the ability to recall it easily – the pathway to accessing it has become disrupted by my new project. Once I’ve looked it up in my notes then the information comes flooding back. This feels very like the confusion and disorganisation that John describes in his son.

It’s wonderful news that people are researching differences in thought processes like this, and that they appear to be finding real evidence of how the differences work.

If you’ve not read John’s article, go and do it now – it’s a great read.

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?

Seeing both sides

Well, I’m glad it’s not just me. Rachel Cohen-Rottenberg on her Asperger Journeys blog has written a lovely article about how she sees both sides of the story.

Rachel writes:

When I told the OT about this experience, she nearly started to cry. She said, “This is part of your sensitivity to the world. You can stand in everyone’s shoes. It’s a gift, but you have to balance it by reading about something positive and uplifting, too.”

I’ve always had this ability too.

I have to be honest, and say that I find it difficult to see it as a gift. The problem I’ve found is that by seeing both sides in a conflict I then find it impossible to side with one person over the other. I end up sitting on the fence, as anything else would cause me too much internal conflict.

Over the years this has caused considerable friction with friends and work colleagues. With my Aspie nature of being easy to talk to and confide in, I’ve often been told of some perceived injustice by friends and peers alike. The teller of the tale is after empathy and probably sympathy too, but I’ve usually not offered it. Instead, to get the logic right in my head, I’ve asked for more info about the situation, and ended up being able to see both sides of the story. Armed with this knowledge I’ve found it impossible to take sides.

I can see how those who confide in me find this annoying. If you feel that you can confide in someone, you expect them to empathise with you when you do. Until I discovered my AS, the friction I’d end up causing in these situations caused me considerable surprise and anxiety, pretty much every time it happened. I couldn’t see why my response caused the trouble it did.

These days of course, I have a new frame of reference, and I can take more care. I can’t say that I’m likely to sit on the fence much less frequently – doing that would cause me profound discomfort – but at least I see why it happens, and can take Rachel and her therapist’s advice and de-stress myself afterwards by looking at something positive.

John Elder Robison on neuro-psychological testing

John Elder Robison recently wrote in his blog Look me in the eye about the neuro-psychological diagnosis of Autism Spectrum conditions, and how he feels this must inevitably be a positive step for those on the spectrum. He’s since followed this article up with another, that explains how in light of comments that he’s received he can see that some people can take negative things from the experience.

I think that John has great insight into his condition, and hearing the point of view of someone else with a similar diagnosis to myself is proving to be extremely useful, as it allowing me to make connections with my own symptoms.

A couple of points in the two articles really stood out for me, and I thought I’d expand on them here.

In his original article, John says:

There are some who say, “There’s no such thing as normal!” To those people, every single kid has a diagnosis waiting to be found. I don’t know that I fully agree with that, but I do think knowledge is power, and the more you know about yourself, the better off you are.

I agree completely.

I’ve always known that I was “different” from my peers, and in that sense I’m not normal. My wife has said to me recently that there is no such thing as normal, so John’s words struck a chord with me. My wife’s point of view is perhaps the opposite of Johns, however. By “no such thing as normal”, my wife means to say that no-one needs a diagnosis – you are who you are. She sees the label of not being normal as a negative thing, when in the end everyone is unique.

Whilst I understand why she feels this, I think she misses the point – it’s true that everyone is unique, but if you look at people in general then they tend to behave and react in broadly the same ways as each other. here are countless unspoken rules about how human interaction works, for instance. I often don’t fit this mould, and in that sense I’m definitely “different”, or if you prefer, “not normal”. To me the label is simply fact, and not something with either positive or negative meaning.

This is important to me, because if I considered myself to be normal, then I couldn’t possibly be on this road of self-discovery on which I now find myself. I know and appreciate that I’m different to the norm, and I’m keen to discover and understand the many subtle ways in which I do differ. Only when I have done this will I have the knowledge I need to make changes in my life that improve it and broaden my horizons.

Knowledge really is power.

In his follow-up article, John says:

When I wrote my original post, I thought how much diagnosis meant to me by helping me understand exactly how my mind differed from other minds around me. For example, the simple insight that I miss nonverbal cues was life-changing. I seized upon the specific behavioral issues and set about constructing a better life. It worked. Words cannot express how much better my life is, thanks to the self-knowledge I’ve gained since learning about my Asperger’s.

For some other people, it does not work that way because they become sidetracked by preconceived notions about “having a diagnosis.” Instead of looking at their own specific issues, they look at broad statistics associated with the diagnosis. They see phrases like, 32% can’t live independently, or 66% never get married and have a family. They become trapped in generalities rather than focusing on specific issues to make their own lives better. They interpret those general statistics as a prediction for their own future, when it’s nothing of the sort.

This sums up brilliantly my wife’s major worry about my investigation of AS. She worries that I will get caught up in the general statistics surrounding the condition, and that it’ll just drag me down until I become one of the statistics. She feels this way because the sort of statistics John mentions above were amongst the first things I found when I started researching AS on the Internet. I spent some time explaining them to her, and she can’t forget them.

There is no getting away from the fact that some of these figures are devastating to take in when you first realise you have AS. It’s easy to see how they can be devastating to loved ones too. I think it’s important to note, however, that I’ve proven throughout my adult life that I can live independently, and I have managed to find myself a wife and have two kids, so the negative aspects of these statistics don’t apply to me personally.

There’s another reason why my wife worries about me falling foul of the gloom of generalities. It’s because I have no swift answers for her. Investigating AS, and thus my differences from the norm has become one of my Special Interests, and as such it consumes a good deal of my spare time. My wife can see this, but she can’t see much in the way of answers or conclusions being reached. I’ve been on this road for four or five months now, and I’m still researching. This worries my wife, perhaps understandably.

I feel, however that I make progress almost every day. I focus on small things at a time, and then try and jot down my thoughts in this blog. Each little connection feels like another piece in the large jigsaw that describes my life. I hope that as time passes my articles here will form something of an encyclopedia of my understanding of AS, and thus my understanding of myself. In time I hope it will start to paint picures of how I’ve changed too – how I’ve been able to improve areas of my life due to the insight I’ve found.

I’ve not got a formal diagnosis, but I didn’t need one to start my journey. An informal self-diagnosis was enough to set me on my own personal road. Does that mean that I’ll never feel the need to get formally diagnosed? Only time will tell.