My life - a treatise

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I wanted to post this because I needed to get it out of my head to somewhere. This is a bit of an essay so I hope people will read it and maybe help me sort this out in my own head. If you don't want to read someone elses experiences, please don't read past this point. I am going to be talking about myself, so I may as well warn you ahead of time.

These are my experiences and not representative of people with ASD as a whole. I remain unsure as to whether I even have the disorder - my mum tells me I shouldn't label myself and I happen to agree. However, there comes a point where you have to sincerely evaluate whether it is worth avoiding the label.

After being asked below, SEN means Special Educational Needs.

My Life

I am 29 years old and I predate SEN at schools by around 8 years. Most schools didn't take SEN very seriously - mostly attaching Teaching Assistants and providing counselling to those either suffering home difficulties or violence. High functioning, intelligent individuals who got on with work were basically left to their own devices. As such, despite one brief incident of violence (I attempted to strangle a girl who bullied me on my first day of school because of the stress) I was more or less left to develop at my own pace. Intellectually I was leaps and bounds ahead of pretty much everyone else, though that is no fault of the people around me. As they developed socially and completely into fully fledged individuals, I didn't.

Of course I was a model polite, happy child who did everything they were asked to do except make things neat (I didn't understand why it needed to be neat), was always extremely well behaved (I didn't see any reason not to be - I wasn't punished for behaving after all) but never fully understood the complex social arrangements other people functioned within even in those years.

There was little formalized SEN practice in those days. If you go into a modern comprehensive or grammar school, they have a formalized SEN support system and detailed files on every SEN need they have as well as extensive powers to relay people for diagnosis. As such, despite the attempts of several people (my first ever teacher and my mum's best friend who knew what autism was and told my mum I was probably autistic - this resulted in the end of their friendship) I remain undiagnosed to this day. I was loathe to self diagnose for reasons relating to the whole internet trope of the self diagnosed aspie who just insults everyone but uses that as an excuse to do so.

However it has become increasingly obvious that autism is what I have and too much of what I do makes sense only in the context of autism. I will put my symptoms on the table.

- To use your terminology, my stim is my skin, which I pick obsessively to remove bits of dead skin often to the point of bleeding. I had someone notice this for the first time last night. Most people ignore it, which I am thankful for. I am glad I do not have a more severe one, but I have had red patches and half ripped skin on my thumbs and feet now for as long as I can remember.

- I struggle enormously to adapt to change, often going through severe depression in the process of adjusting. I am actually surprisingly good at dealing with it - more so than I ever thought possible - but if I cannot maintain an order to my day I shut down completely.

- I am obsessive about finishing what I start, often going to the point of exhaustion. I have been described as having a "scatterbrain" method of learning. If I am interested in learning something, I do it obsessively until I know everything I can know about it and get annoyed with myself if I can't do it quick enough. This in particular is becoming a problem since I ABSOLUTELY HAVE TO KNOW WHAT I AM TALKING ABOUT. Easy if you're discussing problems your friends are having (though the context of their problems are always troublesome). Harder if you are discussing quantum electrodynamics.

As a point, I wrote this at work when I should be working because I couldn't function until it was done.

- Social anxiety disorder. I have been told I have this and was formally diagnosed with it around 4 years ago. This was a late diagnosis which came about after I virtually begged my doctor for help. The anxiety is mostly gone - my social habits have even improved a little. I will come to this later.

- Development of social skills. I didn't develop them at all. I learnt from books, learnt from scientific observation and learnt from experimentation. The irony that this gives me an advantage in public speaking over virtually everyone I know is not lost on me. They have to put on an act to do public speaking. I don't. I do it all the time. I just have to overcome the stares and the pressure of a time limit

- Clumsiness and awkwardness. I don't really have a full understanding of where my body is in space. This is annoying because I like doing kickboxing. I have had to train myself on a lot of ways to avoid things happening to me. As such I have what I like to think of as a manual throttle. I am never functioning at more than 60% of it. I can easily go past that, but I risk hurting myself.

- The inability to relate. I could never understand and still cannot understand why people like cards. Why phone calls are important to people. I sometimes feel like the only thing in the universe that actually gets me is my dog and I only see him once every few months due to living in another country now. He wears his thoughts on his eyebrows and his tail. I can read his tail and tell whether he is happy. He is simple and he obviously cares because he shows excitement and doesn't make me jump through hoops to figure out whether he is that way.

- Personal space. I require time to recharge after social interactions. Social interactions are just another task that I do to function. I don't particularly enjoy them unless they have a specific point. I much prefer socializing if there is something being done (like a film) or after a debate (so we can talk about it!). I just don't get the whole getting together, standing around doing nothing bit.

- Food habits. I literally feel sick if I eat something I didn't know. If I didn't know what it was I can go off it almost immediately even if I liked it. I have to train myself to eat new things. One of the best things I did in the last two months was train myself to eat yoghurt. It took a while to get over the weird feel of it on my tongue and to ignore the lumps, but now I quite like it!

- Hypersensitivity. Hypersensitive to touch and hearing. I can't tune out conversations in a room unless I have something to absolutely focus on. As such I can only really socialize in quiet spaces. I also can't hear people talking to me if I am trying to tune out those other conversations. I don't have uncomfortable hypersensitivity to touch which makes me fortunate.

And that's my life


My Life - The Fraud

One of the prevailing trends of recent years has been the one I alluded to above. The professional aspie, getting away with offense by simply claiming autistic privilege. How do you deal with this? What do you do?

Are my symptoms real? Are they the result of years upon years of laziness on my part? Did I just not bother to develop? Was it my fault that I ended up like this? Maybe others had difficulty too. Maybe others didn't develop the same, but bothered their backside to do it. They all suffer rejection - maybe it doesn't gnaw at them as it does with me, but perhaps, just perhaps, they exposed themselves to it often enough that it doesn't effect them as much anymore.

My food thing. Am I just set in my ways? Is it really autism or is it just a personal preference? Do I feel sick not because I actually feel sick, but because I tell myself that's what I will do if I am eating something new?

My social anxiety disorder. I don't suffer the typical aspie or ASD trait of a lack of empathy - if anything I am over empathetic because I don't really understand what they are feeling, but desperately want to know.

Personal space - loads of people like their space. Maybe I just like it more than others. Lots of people are clumsy and so on.

I could analyze each part of my personality (I originally thought flaw which tells you how I feel) until the sun tries to fuse carbon, but I come to the same conclusion. I can't know if I am simply the sum of my own laziness and inability to adapt, or if something is genuinely wrong with me.

This doubt is the worst I have. So why am I posting this now?


Relationships

I have attempted to let people into my life recently and found so many of these issues arise. What do you tell someone that you are getting closer to? Do you tell them your self diagnosis? Do you go through each fault individually and hope they don't write you off? I know I'm not normal - I know my pickiness is not something I seem able to control. Sheer empirical evidence tells me that I am not like the rest of them.

It is not something I wish to be. Given the choice, I would trade every mote of uniqueness I have in all of these areas for just one moment where I felt like I wasn't a perpetual outsider, staring eternally upon the dance of the rest of the world. Watching their gyrations and graceful arcs with an appreciation of the beauty but no understanding of the art.

I sometimes wonder if this is the price the cosmos exacted for my understanding of physics. Yet I look around me at my other PhD peers and I see plenty of normal, adjusted people with good social lives. They have it, I don't. I am an outsider to them as well.

They are all assemblies of atoms. I know what makes them up. I know why they can't walk through walls. I even know how the very inner trickery of their core functions - why each pulse of energy that livens them from birth until death does as it does.

What trick of fate forced mine to find the emergent phenomena they exhibit so hard to understand, when it is so much more predictable by comparison?

Can I suggest you edit your post, and early on (like after your disclaimer) define what the F "SEN" is? Started reading, and encountered it so many times that I gave up reading. Usually I can figure these things out from the context, but when the content is based on people understanding the undefined idea, it's a bit tricky to do.

I would assume that SEN would mean "special education...something" since it refers to what I assume to be an institutional program.

I see ASD as a group of neural processing and sensing differences that may or may not be related to autism. I think that each of us has to experiment to discover:

1. That with which we can be comfortable.
2. That which we can learn to accommodate.
3. That which we can learn to tolerate.
4. That which we cannot accept.

These understandings can be a sort of "moving target" in that we can be learning new skills and expanding our comfort zone into areas which were previously uncomfortable.

Consider the person who avoided social conversation because he was so bored with the mundane. He would never become engaged in a conversation with someone like the person who picks up garbage. However, if he learns how to look for things that are interesting, he might engage the garbage collector and ask him what sorts of CDs he finds that people throw away most or which neighborhoods have which political garbage to throw out. If instead of seeing a garbage man, he might consider that he has the opportunity to talk with an urban "archeologist", he may have found an ability to expand his social horizon.

You may want to look for things that are repetitive that you can experiment with to see if you can develop skills for dealing with the various aspects of life you find confining.

As far as relationships go, you may want to proceeded carefully and slowly warning the other person that you are quirky and they may discover that you are too much trouble to know. If they still stick around, you may find that you can build something that works.