Monday, 17 September 2012



Me at 15, before I discovered Beer and Curry.
One of my biggest fears has always been the fear of being different.  I know many people see it as a strength in people with autism that they are original and don’t just follow the crowd and don’t get me wrong, that does have its advantages, but whenever I do something I shouldn’t, either getting into trouble, spending too much money or thinking in a way that I maybe feel is inappropriate I am always terrified that I am the only person in the world who thinks or acts this way.  I think this is where my lack of empathy comes into play.  As a child growing up, whenever I got into trouble I would ask my parents for reassurance that I wasn’t the only person to have ever behaved in the way I did.  They used to be quite shocked, thinking I was trying to justify my bad behaviour and this often got me into worse trouble.  Since the advent of the internet, my social understanding has improved immensely.  I can now check out how others feel and their experiences, and see just how they relate to my own, in a safe and protected environment.  Many people say they find people with Autism fascinating and love to learn more about the condition.  I personally find neuro-typicals equally fascinating, and I have been unconsciously researching them for quite some time.

I knew a man with Aspergers once who told me (when going off to study in a new University and live-in the halls of residence) that he was going off to ‘navigate the social universe.’  I thought this was a remarkable quote but also one that maybe fits into the stereotype of the autism experience a little more than my own.  To be fair, I think this person probably was more debilitated by our condition that I was, but I knew what he was getting at.  The shear confusion in so called ‘real life settings’ can really make me feel so sad.  One of the places I really notice my differences is at University.  I try to say hello and am always polite and considerate but I never really connect in the way the other students do.  I have a theory that at University and in further education settings a person often reverts back to the kind of person they were at school and for me that has to be the shy geeky kid, more so in that environment than anywhere else.  The more I think about it, going to University is probably one of the bravest things I do, and have ever done, especially when I think of how terrified I am in the group and workshop settings.  Going to University can be a very lonely and painful experience.  At times when I walk around the building, and say hello to people, they ignore me, knowing full well I am there and knowing full well I have Aspergers and it can really hurt.  It makes me feel like I am a convicted sex offender or heinous villain.  Except a sex offender of heinous villain can relocate to a new town or city, take on a new identity and has no need to disclose the details of their sordid past.  This is far more difficult for someone like me.  At times I come home and curl up on my bed and just think about melting away.  It sounds so negative but it actually helps me to relax.  I usually then fall asleep and feel a little better when I wake up.  I then start a session of ‘googlesurance’, to see if I am the only person who feels like this, or if I am to blame for my situation, hoping sincerely it is not my fault and is not because I am a social failure.

What I have learned is that most of my feelings and experiences are rarely, if ever unique amongst both ‘neuro-typicals’ and people with autism.  I think what defines me as a person with autism is not only the intensity of these feelings but the narrow inward focus which makes me feel isolated and like the only person who feels the way I do.  I find it so hard to accept that ‘neuro-typcials’ feel the same way as me, but put a lot of their stress on the back burner in order to cope.  I am getting much better at this, but in the past it exacerbated my anxiety levels to unprecedented amounts. 
One of the most common questions I enter into my search engine begins ‘is it normal…’ and I end the question with whatever is on my mind that day.  For example on one occasion I ‘googled’, ‘is it normal to feel hate’ or ‘is it normal to feel aggressive towards someone who has hurt you?’  Until I googled this, I hadn’t realised that these emotions are not only healthy (at certain times) but they are also completely normal and understandable when we feel a sense of injustice.  As long as we don’t act inappropriately on those emotions or behave in a way that may harm others they are completely understandable and normal.  This came as an enormous relief.  Previously I would have either bottled my emotions up or deluded myself that I wasn’t feeling them.  In the worst case scenario the guilt about feeling these negative emotions would trigger off my O.C.D fears that I was a bad person who was losing control.  

   ‘Googlesurance’ has been great for my independent living too.  If I need to mend anything around my flat or I need to do something around the house, a good session of ‘googlesurance’ helps me sort it and I have learned so many independent living skills that way.  The good thing is that I can ask as many questions as I like on the internet and it saves me wearing down my family’s patience.  As much as my family love me, it is understandable that at times they suffer from compassion fatigue when I ask the same questions over and over again because I only ever temporarily understand the answers they give me.  What amazes me when I google a question is the fact that not a single question I ever ask is unique.  Somebody has always asked them before.  It can’t all be Aspies asking these questions.  Maybe neuro-typicals need ‘googlesurance’ too.

I have recently got myself into a little pickle on the football banter pages.  Stupid thing for me to do in many ways but I have actually learned so much about human behaviour by doing this.  The reason I got involved in this was to test out and improve my social skills and to see if I was able to stick up for myself in a safe and appropriate environment.  I did very well in many ways, got a lot of laughs and I think turned a lot of people inside out, but I also got burnt too.  I did learn a lot about human behaviour though.  I went on a few Newcastle and Sunderland football banter pages and I entered them initially in good humour and was very self deprecating (as I find this kind of humour hilarious) and I consider myself someone who can take a joke.  But despite that people still have a go or they still jump on you the one time you defend your team, forgetting the one hundred times  you’ve slated them, calling you a deluded Mackem etc,  usually in a far less polite way than that.  It made me realise that people generally can be egocentric and it is not necessarily an autistic trait.  People can also be ignorant and thick and being an adult doesn’t mean people aren’t bullies, it just means they do it in a more sophisticated way, except on a football banter page when calling each other offensive names and threatening to beat each other up is coined as ‘banter.’  If you point out that this is not banter then you are called pompous (or much cruder words to that effect).

The 'Terry Duckworth' photograph.
My undoing came when I challenged someone for being racist over a comment he made about Sunderland’s new sponsor ’Invest In Africa.’  He like many racists was furious about being called a racist (which I find incredible, if you’re going to be racist then at least admit it and stand by your principles) but he called me thick for thinking this.  I thought this was a cheek as I felt clearly more intelligent than he was but then I realised, that we all perceive the world in different ways.  Whether a person be intelligent or bright we all perceive things differently and if we don’t understand another’s argument (even if it is a lack of understanding on their part) then in their mind that person may appear unintelligent.  To cut a long story short this persons friends ganged up on me and I was left arguing with four people at once.  Whether I was right or wrong wasn’t an issue, they were all Newcastle fans and I was a Sunderland fan.  All Newcastle fans stick together and all Sunderland fans stick together regardless of who is right or wrong.  I can’t do that personally.  If my team should be criticised then I will do that, but in these forums you are not respected for it.  I crossed the line and said something I was deeply ashamed of and I apologised to them later.  I referred to one of the banterers as ‘Shrek’, which was tame compared to what they were saying to me and the things people usually said to each other.  One of them put my picture on the page and took the Mick out of how ugly I was.  One of them said I looked just like Terry Duckworth from Coronation Street.  I was aware enough to understand that they were doing this to turn the tables on me for my ‘Shrek’ comment and I was aware enough to understand that however I looked they would say I was ugly in order to equal the score.  I had clearly got to them and some people even commented how I was making mince meat out of them.  But on the other hand, I was aware that I am not in my best shape.  I am a comfort eater and there may be a lot of relative truths in what they were saying.  I then wondered if it was ok to be ugly, if it was my fault I was ugly or was it just people being cruel in banter.  I also remembered times when others referred to me as handsome.  Is it just a perception issue (beauty is in the eye of the beholder and all that) or was it just to gain revenge for their mate.  And again my biggest fear wasn’t that I may be ugly (although no one likes to think they are) it was the fear that I was the only ugly person in the world and I needed googlesurance that I am not the only person who comfort eats or has let their appearance slip as they’ve aged.

I realised of course that my comments were wrong and I wanted to be better than that.  It didn’t matter to me if they did worse than me.  The bottom line as far as I was concerned was that I was out of order and didn’t want to sink to that level.  It all ended up amicably after I apologised and I said I was going to deactivate my facebook account because I didn’t like what it reduced us too (we were all like bitchy pack animals).  Later I discovered despite us making up they were saying I had a nervous breakdown and that I couldn’t take the banter, all because I realised that I was acting like a fool and apologised.  If I hadn’t have apologised and continued to argue with them, they would’ve had more respect for me.  Weird!  They didn’t apologise despite saying far worse than I did (not that I am judging them on that or expecting an apology) I just find it strange that they see this as a weakness.   I have always believed that recognising our mistakes, apologising and taking steps to improve our conduct as a real character strength.  It is certainly the main component in the progress I have made as a person with autism to fit into social settings throughout my life.  It seems to me that most people I come across in life don’t share this viewpoint.  Maybe because they don’t have my disability they don’t have to self reflect as much as I do and maybe that is one of the benefits of having my condition.  The fact that I need to reflect in order to survive means I am able and willing to improve.   Most people seem (and I emphasise the word seem) to dig their heels in and not back down even when they know they are wrong.  It occurs to me that people are animals in that respect, more sophisticated perhaps than wildlife but in principle made of similar primitive basic instincts.  I feel I am above that and I find it so hard to understand that intelligent humans can be that base.  It can either make me misanthropic about humanity or too naïve and trusting and therefore vulnerable.  When do I trust and open myself out to others and when do I put my guard up and protect myself against them?  It is a constant life dilemma for me.  There aren’t many social skills curriculums around for people with autism and certainly none which go into the subtle and more advanced social skills nuances.  Until such a social curriculum exists I suppose my sessions of ‘googlesurance’ will be a necessity in navigating my own social universe.


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