Aspienaut - WIRED differently

The child picked up the yellow toy car with his little chubby fingers, placed it carefully on the flat of his other out stretched hand and with a high degree of attention and no less effort, pushed it briefly the short distance to the end of his plump fingertips, all replete with the appropriate car noises. Then the car, like all the others, was placed carefully, with all the others, in the freshly raked lines of the brown shag-pile carpet.

He walked slowly, surveying his work with a keen eye, like that of a site foreman checking the trueness of a line. Until he was sure. Sure, that all his cars were laid out in order of colour and size and all perfectly within the lines of the freshly raked carpet. With that he smiled and felt the calmness that only comes with the knowing, knowing that now, with everything in place, nothing terrible would happen. Well….at least not today and not to his family. After all, that was as far as his powers went.

©Paul C Siebenthal May 2012.

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When talking to someone, there’s this gap. A little canyon of misunderstanding that opens up in response to the incongruence of my reply or facial expression. It’s a social hole down which I so often fall. Then struggle to get out quick enough, so not to be thought of as a little odd by the other person. Of late, I seem to spend quite a bit of time in this hole. If I’m honest, I’m rarely out of there at the moment. In-fact, I’m thinking about buying a head-torch, cushion and flask, so at least I’ll be able to see better, be comfy and have something to drink. I guess it’s always better to be comfortable, in whatever hole you find yourself.

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It is only when I am reminded, because often I clearly haven’t remembered, other people have thoughts and feelings that are not the same as my own. Now, I know that to many this will sound like a strange thing to say, but it is true. I have to intellectually process this concept of others minds and consciously remember it in order to not make quite massive assumptions and huge social faux pas. It seems unbelievable to me at times that my view of a situation isn’t everyone’s. In the past I have completely given up on a strong belief when I discover that its not shared by those around me. As this makes me feel that I am, in someways, wrong for thinking differently. This is an over reaction which seems to be connected to my, ‘all or nothing’ thinking style. This can make for a very unstable sense of self that can be shaken and turned in different directions at what can seem like a whim. This uncertainty is in part, I would suggest, why I often need interests that are all consuming and feel at the time, unshakable. They give me a strong sense of myself, so often lost in the world of others thought’s and opinion’s, rather than in facts and figures. I change my interests quite regularly and often when the outside world has come in and challenged it. Often by being told that my interest is affecting my relationship or life in a significant way. I feel that my interest has been, in some way tainted and devalued. It is then I am cut adrift until I find another thing to focus on. If this period is extended I can become quite depressed and anxious, as I am left trying to make sense of the ever churning sea of other people and their complicated minds which seem so confusing to me. Then, when I find a new focus everything settles again and I feel able to breath and be myself. Safe in the knowledge that there is at least one thing I can understand and a safe place to anchor myself.

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It has been a strange week. I have had some difficulty in adjusting and processing a piece of critical feedback I received for my last post. A post written to encourage a young Aspie to feel better about themselves by seeing their Aspieness as an extra strength rather than an extra hindrance. This may strike some people as naive but this is my blog, where I share my feelings about a subject of my choosing, namely Asperger’s. But in the same way that, ‘one swallow does not a summer make’ it holds true that ‘one piece of extremely negative feedback on your blog does not mean you should stop’. If anything it just shows the need for more people to write and share their experiences of being human and all that this means for them. Indeed, the person who left that comment was doing just that and were invited to do so, it was just a shock to be referred to as having a Aspie superiority complex to the degree of verging on the Fascist. The degree of offense that this caused me, is not something I will begin to expand on here. However, I’m sure anyone who had the intention of trying to support those on the spectrum in feeling that some of the natural aspects of their thinking style related to attributes of creativity, would be shocked at that comment. I know I was, and hence I sought feedback from my Twitter and Blogging peers. I started to doubt myself, had I over done my pro-aspie rhetoric to such a degree as to infer that those on the spectrum where in some way, ‘a master race’ of genius loners, and was my blog in-fact a propaganda machine for a dangerous underground political movement? Thankfully, a resounding, ‘No’ came back, with an out pouring of support and encouragement to continue to share my blog and tweets in just the same way as I have been. Something I have every intention of doing.

So, if my pro-aspie, pro-autism, pro-the differently Wired rhetoric offends anyone, may I suggest they stop reading my blog and un-follow me on twitter as there will be a lot more of that to come, and I for one, do not like to cause offense.

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When I was a younger I hadn’t even heard of Aspergers. I wasn’t diagnosed until I was 25. I just knew that I was different. Other people made me feel like I was wrong in some way for just being me. My sensory sensitivities and all the other aspects of having Aspergers made life extra tough. Having Aspergers is extra tough. But the important word in that sentence is EXTRA. By having Aspergers you have something extra. You have innate capacities for noticing things that just pass others by. You have the ability to see the world in amazing and novel ways. Sometimes that extra sensitivity can make life extra hard but sometimes it can make it extra amazing.

If is wasn’t for Aspies and our extra ways of seeing, society would be a different place. Many of the advances in Science, Art, literature couldn’t have happened without us. We are the extra, we have the extra needed to excel and to see further than others. We notice patterns, we see new ways of doing things. We can focus for long periods of time and have the capacity for narrow fields of knowledge and expertise. It is no coincidence that these are just the talents needed to excel in science and is the core of true creativity. Our extra gifts are often a problem when we have to try and fit ourselves into the world of people that don’t think and see the world like we do. They find it hard that we can be different. It makes them uneasy. Be patient with them. It really isn’t their fault that they can’t see the way we do. They struggle to accept difference,and in-turn, to accept us. This is often why we suffer so, its often not our Aspergers as such, its other peoples ignorance. In time you will see just how amazing you are and just what extra things your Aspieness has given you. If you begin to look on the internet for those Aspies that are successful and those Aspies that are historically significant, you will see that we are often at the edge of change and at the front of human understanding. Also remember, If the world has seen further, its because they’ve stood on the shoulders of Aspies.

Take good care of yourself.

Paul C Siebenthal (Aspienaut) 2012

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I have of late written about the difficulties and struggles of being an Aspie. I have spoken about the communication problems, the sense of isolation, sensory sensitivities and much else. This is very important and crucial in helping others understand us better. Particularly to help those that work, educate and live with us, to gain a sense of who we are and what we need, in-order to function at our best.

What I want to talk about, is the courage it takes and the bravery needed to be able to be open and honest about what it is we need, to be at our best. I have up to this point used, ‘we’ but I am, of course, talking about, ‘me’. I need to be brave and I need to have the courage to be open about my Aspieness.

I am 38 yrs old and only in the last 2 years and particularly in the last year have I begun to fully process and accept myself and my Asperger’s. I have been diagnosed twice, once at 25 and again last year. Sadly, between the 12 yrs of the two assessments, I stopped being able to pretend everything was ok. I was still struggling with change, still struggling with my relationships, work, sensory issues, every aspect of my life. I was self-medicating with alcohol, as it numbed all the sensory issues and quietened my mind. I was, frankly, a mess. Until I started to look honestly at myself I wasn’t going to be able to find some peace, or a sense of who I was. I was conflicted about my diagnosis, in part, because I had a tough childhood and put my struggles down to that. It was only after years of therapy that I was able to move past this, to see clearly that under the psychological pain was a fundamental difference in my neurology. So, after hoping that I would, in some way, become a happier person by engaging in therapy, I discovered who I really was. There was no other way for me to make sense of my Aspieness and it was essential, in my case, that I had therapy but I was left knowing that I needed to get re-assessed for Asperger’s. This time, by a clinician that I trusted and who, if they told me, I did or didn’t have Asperger’s, I could accept it and deal with it accordingly. So I went to see a clinician of 18 yrs experience in diagnosing Asperger’s in adults. A clinician who’s books I had read and who I respected.

By this time I was quite depressed and had left a nursing career. My wife and I had also separated. I needed to make sense of why I was feeling so out of place in my own life and in my own skin. So my wife (she was happy to give her support and opinion to the assessment) and I spent three hours going through the assessment process. I then went back on my own and spent another 2 hrs discussing and clarifying the process and the diagnosis.

There were two key points, in-fact, I now see them as turning points in my journey to make sense of who I am. First, was completing the, ‘minds eye’ test. A test in which you look at expressions in photos of peoples eyes and select the matching emotion from 4 choices provided. I thought I be good at this. Instead it took me a very long time to do as badly as anyone the clinician had ever seen in 18 yrs of practice. This shocked me. Despite thinking that I would find it easy to accept a diagnosis of Asperger’s, I still questioned it. I questioned it, in-part because of my Asperger’s. I couldn’t understand why I felt so much emotion and yet, when I read books about Asperger’s or the diagnostic criteria there was all this talk of deficits in empathy. My, ‘black and white’ thinking wouldn’t let me see the, ‘grey’ of my own thinking.

By explaining the difference between sympathy, empathy and reading others emotions and thoughts through facial expressions, I began to understand. Finally, after 5 hrs I asked the clinician, “Do you still think I have Asperger’s?” To which they replied, “I don’t think you have Asperger’s, I know you have Asperger’s”. It was only then that I began to accept myself and learn to be brave enough to discuss the things I find difficult.

It was hard not to try and do what I’ve always done, which is to try to fit in and not to let my difficulties show. It was almost better that people thought me disinterested and rude, than to explain why they may have thought that, when in-fact I’m not those things. I just see the world differently and express myself differently.

Creating @aspienaut on twitter and this blog is a big part of me accepting my autism and discovering what it means for me to be at my best.

As many of you know, adults diagnosed with Asperger’s have been through a lot. I hope that by being brave enough to share and discuss our experiences; the teachers, families and friends of young Aspie’s, not to mention, the young Aspie’s themselves, will realise just how amazing their best can be.

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There is one aspect of my own Aspieness that always creates in me a degree of reflection and puzzlement. Namely, my apparent inability to see a future. This creates at times, a sense of being very much stuck in the position that you are in, and can create its own special type of unhappiness. It is not that I don’t plan or book dates into my diary, I do. It is that on a profound level the future means nothing or rather it doesn’t register in my conscious mind at all. This may sound like semantics but it is not. Many NT’s I know find solace in the thought that tomorrow is another day. Things will be better tomorrow. Often when someone speaks to an NT person and gives them advice about what to do in the future or how things may turn out for the best, they can create and hold that image of a better future in their mind, find solace in it and work towards it. I do not do this.

This function of how my aspie brain works has many profound implications. It would appear to be connected to the aspect of cognition that lets NT’s predict human behavior, as well as others thoughts, motivations and plans and of course their own. As an aspie I miss this and it can create a high degree of anxiety and even paranoia. When I was younger this was much worse and when combined with my, “all or nothing” thinking, it meant that I was unable to be comforted by the words and support of others. Their kind platitudes meant little to me. They required of me to create an image in my mind of a better future that the person trying to make me feel better could see, and clearly predict a better outcome than I could, as I wasn’t able to see the whole picture. All the aspects of my predicament that were connected to other people or that were related to other people doing certain things, made no sense to me. Even their words seemed to bare little or no resemblance to what they actually did and so I felt completely lost and anxious. Stuck in a world that I could not understand, with people who tried to make me feel better by telling me what made them feel better without ever realising that I couldn’t process what they were saying. Instead, I would cause a great deal of frustration for teachers and my parents, as they tried to work out why I was so unable to take on any of their attempts to calm me, cheer me up or support me. Their words meant nothing to me and that made us all very sad and worried but for very different reasons.

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I touched on, in my last blog, some of the difficulties that are on-going for people on the spectrum. That post related in-part to eye contact, facial expression and communication issues. It touched on the non-verbal communication that is really quite a challenge for us.

In this post, I would like to explain a little about how I am trying to cope with these difficulties by re-framing how I see myself and my Asperger’s. I realise as I get older that my Asperger’s remains quite constant, as do the difficulties I have. What has changed is how I frame these difficulties and in turn how that makes me feel about myself.

Writing my blog and using twitter has helped me gain a sense that I am good at something. I can, through writing, explain what it is like to be me. I have always written and have always wanted to find a way to value myself. Writing about my Asperger’s has helped me make sense of who I am. By sharing I am learning to value myself more. Asperger’s as we know, can make us feel isolated. Writing and most importantly the feedback and comments, has helped me to realise that it is ok to be open and honest about how I see the world. When I write and someone is kind enough to comment, it means a great deal to me. When they say they can relate or that it has helped them to understand themselves or a loved one better, I feel a sense of acceptance and achievement that I haven’t felt before. The value that others appear to have in reading my posts and tweets is magnified ten-fold in how it makes me feel. I am finally beginning value and accept myself. It isn’t that I am just accepting having Asperger’s rather I am accepting myself, for all that I am.

For some reason, and I would suggest that it is, in-part due to my thinking style, I take any negative comment relating to my Asperger’s and use it as a stick, with which to beat myself. As though these difficulties negate any positives. This, ‘all or nothing’ thinking is so much part of who I am, it can be hard to see through this view to find that acceptance. I realise that my own sensory sensitivities are a little like NT’s sensitivities to the subtleties and nuances of non-verbal communication that I struggle to notice. In the same way I hear, see and notice things NT’s appear blind to. Without sharing these differences in a kind and compassionate way we will always struggle to understand and accept ourselves and each other.

If we do not share with others how we experience the world, we cannot accommodate each other equally and in-turn truly accept ourselves. It is our unique view of the world, from the position where we stand that have enabled us, as the Differently Wired, to create great art, make beautiful and useful things and go on to develop much of the science and technology that has changed the world. It is not my fault that I don’t see many of these subtle nuances in communication, no more than it is yours, that you seem blind to many of the sensory wonders, amazing interconnections and patterns that we see.

If we do not tell people what it’s like to be us, they will not know. So, I for one, plan to continue to try and share as openly and as honestly as I can what it’s like to be me. I am learning finally to accept myself, both the good and the not so good. I hope that by sharing with others they can begin to do the same.

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We look different, you and me. I know physically we look different but as an aspie we also look at things differently. This is most true when it comes to faces and particularly eyes.

Someone I work with asked me the other day, “do you think I’m stupid?” To which I replied, “No!” Not because I did and didn’t want to say. If I did, I would have told her but I really didn’t. In fact, she is possibly the most intelligent person I have met for quite some time. So confusing to me was this question that I couldn’t help but try and work out why she had thought I did. It turned out that it was because of how I looked at her when she spoke. The day before she was talking to us as a group. I was looking at her as she spoke in a way, that to her, she couldn’t make sense of. Her conclusion, after dwelling on this for sometime was that I thought her stupid.

Another person I work with recently told me that I ‘really’ look at her in the face and particularly the eyes when she’s talking but not like other people do. Apparently other people look at you when you’re talking but with a passive intensity. This puts the person talking at ease and the facial expressions of the person looking are congruent to the subject and to the expressions of the person talking, when the exchange reverses, visa versa. So within this NT interaction only occasionally are there problems. Of late I have had a run of being told that I have been creating little pockets of concern and confusion within the work place. In the last month I have been told or heard the following about me: I am odd. I have a blank face. I give no facial feedback. People can’t tell what I’m thinking and this worries them. They think I’m not interested in what they are saying. That I am rude. That I am aloof. That I think they are stupid. That I am intimidating. This is in the last month. It has not been a particularly unusual month for me and this is a regular experience of many Aspies and also those that spend time with us.

When you combine this with sensory issues, difficulties with change, social misunderstandings and empathy you begin to see just how difficult it may be for the Aspie in your office, classroom, or home. So, what is happening. I can only speak for myself but I shall explain how I experience this.

When someone is talking to me there is a lot going on. To start with, almost all the unconscious processing of facial expression, tone of voice and gesture and subtle speech nuance are missing. As we all know nature abhors a void so what fills it. Intellect and information processing and conscious thought fill this void for me. That is why Aspies look so distracted and so tired. You are talking, I am, with full conscious awareness (lack of sensory filtering) going through all the information I’m being given and trying to work out what I need to pay attention to. Clearly the words you are saying are important so I try and anchor myself to them, as your lips move I watch them, I then remember that I’m supposed to look you in the eye so my gaze lifts, first your right eye and then your left and then your right again. I struggle, find it almost impossible to look at them both together as this is a soft focus that just doesn’t feel right. I sense your speaking louder and I don’t know why. At the same time the lights are too bright and are flickering, the printer over the other side of the office sounds like its jammed again. I am having to listen (can’t filter) to the conversation that is happening behind us that you don’t even seem to be aware of and yet I hear it at almost the same volume as our own. Soon the pressure of this interaction builds I become distracted, you become angry because to you I am rude and disinterested. You may even feel that I think you’re stupid and don’t feel you warrant my attention. I carry on anchoring myself to your words, the best I can, as you talk louder and louder and I flit my gaze from eye to eye noticing the sight colour difference between them.

You then say my name loudly as I had just started to go into, “stand-by” mode having just reached sensory overload. I then look at you again square on, I blink slowly and you storm off. Later, in my management supervision I discover the full implications of this exchange on your view of me. I in turn prefer (at this point in my life I wasn’t strong enough to explain my Asperger’s and not sure I even knew how) that I am thought of as rude and aloof, as in a strange way this seems like a better and more socially acceptable explanation of what happened, than for me trying to describe for them the experience for me.

I know now that I must explain. That if I am to ever find peace and somewhere it’s ok just to be me, I must tell other people what it is like for us. Because of how we are and how we see the world and the people in it, we have a special contribution to make to human understanding. We always have and always will. We see things that others can not. It is our ability to turn this amazing view into the beautiful and the useful that is the foundation of creativity and why so many amazing people are Wired Differently!

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I have been doing lots of writing this week in my journal. It is not, by any means, for public consumption but eventually the thoughts there may coalesce into future blog posts. I have been thinking a lot this week about creativity and the, ‘Differently Wired’ brain. I feel that my being on the spectrum gives me a cognitive position that, in part supports my own creativity. This position has both positives and negatives. Many of the negatives have already been discussed within my blog, so I would like to write briefly about the positives.

We understand the world through our senses. This is an obvious thing to say but important for those of us on the spectrum. Not only are our senses how we experience life , they also serve the important protective purpose of sensory filtering. This aspect isn’t something that many NT people are conscious of, but for those on the spectrum it is clear. We tend to receive much more information on all sensory channels. We just have too much other stuff going on to be able to do it all. Because there is this hyper-sensitivity to stimulus and a difficulty with the wiring around the empathy those of us on the spectrum develop into people who have a certain view of the world and a certain position in society, namely, on the outside.

This position can be quite a difficult one, but for myself I can say it has begun to feel like an advantage. Yes, I often feel at odds with much of what I see going on in social settings and I feel there are aspects of NT life that I am not really part of. For many these aspects are important and to some essential, I even thought so for a while, but now I disagree. It just is, what it is.

So I move through the world, with this head on these shoulders, experiencing and processing the world as I do and you are there, doing the same, your head, on your shoulders. For me, creativity is about sharing with others what it is like to have this head, on these shoulders and in being who you truly are and then sharing that with others, is the creative process. So I sit here slightly on the edge of things, experiencing the world as I do but I still want to reach out, needing to reach out, needing to show you what I see. This is the innate human drive for connection and understanding. By telling you, I am as much as anything, telling myself, I’m here!

When we engage fully in the creative process we share a part of ourselves that is our true self and it is in the process that we really meet each other. It is one of the only ways we can communicate what it really means to be us. Yesterday, someone very dear to me shared a piece of writing that in part inspired this piece. By putting pen to paper and telling their truth I could see them even more clearly. They let me in and I felt I understood and cared for them even more deeply for seeing who they are even more clearly.

As a person on the spectrum I have been given the tools to experience the world with heightened senses and a degree of focus and intellect that allows me to explain what I see. I have been given the tools to be perfectly who I am. You have been given the tools to be perfectly who you are too. How could it be any other way. This fact doesn’t mean its easy being us. Creativity is often about expressing hardship because its about sharing being alive. However, by giving ourselves and others the space and support to be creative we can understand ourselves and each other, a little better.

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This was a question I was asked this morning. What a great question after my last few blog posts, which have been on the struggles of having Asperger’s. These posts, in someway were a response to the comments that were made, about what some saw as my over positive and rose coloured view of the having Asperger’s. I hope my recent posts have gone some way to balance this out.

These last posts were good for me to write but the above question reminded me of why I started my blog. Namely, to celebrate the creativity of the Differently Wired! This isn’t just those on the spectrum but those people who see the world in interesting ways and are creative to a degree that makes them stand-out. Bjork would be a great example of a person like this.

When asked, what is it like when you feel at your best? I first think of those moments, those fleeting moments that become the small pieces of fuel that power the creative process. I have only of late, begun to realise the full extent of this. Everything, all my life experiences, both good and bad, get turned in my case into words, for others, to visual art or music.

These words are the totems of my experience. They are not the experience, in the same way that the word moon is not the moon, just our representative word. We must always remember that the description is not the thing described. This is the great challenge with writing. You too easily mistake the word for the thing described, how could you not. Yet, it is in this predicament, that the greatest thing about writing for me exists. It’s what you don’t write that is the key. It’s in this space that the truth is found and where the real beauty is. It is the readers truth as much as the writer.

In answer to the question, What is it like when you feel at your best? It is when, in the moment of writing, my mind goes blank and the words appear. It is when I realise, I have written as little as I need to, in order to say everything I want. That is me at my best.

Second to this, is the moment of experience itself. I live my life utterly in my head. Sometimes I think I only experience what I have written down. Then for me it’s made real. In someways, the key is the absence of conscious thought when creating. It is the closest thing to true experience, as in, doing something so completely that no conscious thought is involved. When we do something perfectly we do not think, perfection is not in the thought but the deed. Recounting the deed in the same way, with the same effortless ease, is the closest thing I know to being at my best. It is like finding again, the pleasure of a moment captured forever. The true joy comes in the words left unwritten, for here, in that absence, is the original perfection of the moment.

This may all sound a little esoteric or even pretentious but we all have had this experience. It is that moment when a ball is thrown to you unexpectedly and without thought, or effort, your hand just goes out and plucks the ball from the air. It is that moment, when time slows down during a traumatic event. That space of true experience where conscious time stops. An unexpected kiss or a moment of complete physical abandonment. These are those moments outside of time. It is the capturing of these, in the best way I am able, that makes me feel at my best.

I am lucky to have some very creative and inspiring friends. These people and those I have put on my blog, help me to continue to try and be my best.

I hope, in a round about way, I have answered the question. This type of written description often feels too word heavy and too descriptive. To explain better what I mean, I will leave you with the last piece of writing that I created that was written without effort and without the burden of conscious thought. I just stopped writing and this was there….

True friends ask of you exactly nothing / The ground on which I lay

They spin and they turn, they turn and they fall, fall back to the ground, the ground on which I lay. I am above and beyond, in any way that you could ever understand, above and beyond all things, I am at this point….Happy! Happy in the truly absorbing spectacle of the spinning, the spinning and the turning, the turning and the falling. Over and over, again and again. There is never too much, there is never enough of this. There is never ever too much, again and again, I scoop and throw, scoop and throw, the sycamore seeds. My perfect, spinning, turning, falling friends! Who spin and they turn, they turn and they fall, fall back to the ground. The ground on which I lay.

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