Googlesurance



Me at Roker Park in 1996 with the
first division championship trophy
,before beer and curry took
 their wicked toll on me.

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).

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 (above right) 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.

The Past

                                                                                  

My Dad and I in 1979/80.

I hate the fact that so many people claim to have Asperger Syndrome or Autism just because they have one or two slightly obsessive rituals or are maybe prone to remembering one or two geeky facts.  I will give you an example of this.  I was speaking at an event for Research Autism at the 02 Arena in March.  I heard two people talking on the train as it was leaving my home City of Newport for Paddington.  One woman was claiming that she had to check and recheck the door every time she went out somewhere.  She followed this statement by booming to her friend ‘I am telling you, that is Aspergers’, repeating it over and over again.  And she pronounced Aspergers with a soft ‘g’ instead of a hard ‘g’, yuck!  Why do I care that so many people claim to have Aspergers you may ask?  Am I being pedantic?  There is a very real reason this is problematic for me and for others with Autism, which I will explain in this blog.


Now don’t get me wrong, this isn’t an exclusive club, the auties versus the rest, as far as I am concerned Asperger Syndrome is nothing to be proud or indeed ashamed of, it is just a fact of my life.  The reason it annoys me is the way such statements trivialise our condition.  Being on the Autism Spectrum is not like catching the common cold, it is not something that everyone can relate to and by the time you listen to people speak, it feels like it is the neuro typicals who are in the vast minority and those with Autism are in fact the majority.  Sometimes I think maybe we should be supporting them.   

One of the questions many people ask me, the one which is the most difficult to answer, is what is Asperger Syndrome?  Or how does it feel to have Asperger Syndrome?  Describing Autism or Aspergers is very difficult.  Whenever I try to put it in a nutshell and talk about obsessions or anxiety, thinking in black or white or indeed lacking empathy, people often look at me in a  puzzled manner and say to me, ‘well I do that, how does that make someone with Autism any different to those without autism?’  I believe this is a very good question, and one which has a very simple answer.  My answer is that most of these aren’t autistic traits, but human traits.  This is why so many people can relate to experiences people with autism have and then underestimate the effect the condition has on our lives.  Any human being under a certain amount of stress can engage in obsessive and ritualistic behaviours, it is a human way of coping and managing anxiety.  What makes it different for someone like me is the amount of stress and anxiety we go through, which makes us more prone to these behaviours than those without our condition.  And besides I would argue that the O.C.D and other traits associated with our condition are secondary symptoms to a more important experience; the experience of being consumed by fear, uncertainty and confusion caused by an inability to understand the world around us.  I can give many anecdotes about times when I have taken things literally, seen issues in black and white, had strange obsessions and rituals, which exceeded the experience of the ‘norm’, and I intend to elaborate on them in future blogs.  But in this one I want to try and communicate my experience of the past, and why it has such an overwhelming bearing on the present and the future.

For those of you who have been watching Emmerdale, you will be familiar with the current story about the character of Ashley bullying his father Sandy.  For those of you not familiar with the story line, Ashley the local Vicar and pillar of the community has been putting pressure on his father to move into an old people’s home because he felt he was intruding on his family life.  Things came to ahead when he eventually assaulted his father and is now being ostracised by the local community.  Most people wouldn’t have given this a second thought other than to be entertained by a very interesting story.  For me it is the source of an awful lot of anxiety and confusion.  The reason it has caused me so much distress is because it challenges my perception of human behaviour.  When my perceptions are challenged my whole understanding of the world around me becomes blurry too and this makes me feel scared.  This subsequently leads to excessive revaluation of my own life.  Ashley like me is a person who has good intentions and tries to do his best for those around him.  After hearing of his wife having an affair he became angry and failed to manage this anger which led to a change in his character.  Now that his behaviour has changed he is being ultimately judged by that behaviour by a community he has been so kind to and who are now turning their back on him.  This doesn’t seem logical to me but then maybe that is the problem, I deal with issues in logic and social interaction doesn’t work that way.  It has been pointed out to me of course that the nature of a soap opera is to make the good guy bad and change the bad guy to good and back again, so it isn’t the best way to analyse human behaviour, but nonetheless I hate the fact that people judge each other on the negatives or are too narrow-minded to see the bigger picture.  I have always believed in unconditional love.

Me, South Shields Park, 1978.

The story of Ashley in Emmerdale is just one example of many life scenarios, which can drag up unresolved issues and cause me anxiety.  The reason the Ashley storyline causes me anxiety is because as a person with autism I do have a history of challenging behaviours.  What contributes to those behaviours and indeed the ability to forget and move on from those experiences is the way that my brain works.  I have difficulty processing and understanding information and a difficulty in shelving the past and moving on to the future.  My memory is like a memory foam mattress; if an issue is not understood or resolved it stays in the shape of the last stressful experience associated with it.  This makes it as fresh in my mind today as it was, maybe years ago when the original issue happened.  This is why I need closure.  Many people would say this is because I am autistic and I am obsessive, and whilst there is a relative truth to that I believe a much more pertinent explanation exists.  And that is the way my mind understands and makes sense of the world around me; this is the essence of my condition the resulting behaviours that follow and the inability to shelve and move on from negative or indeed ‘human’ experiences.  My obsessions and rituals are a consequence of this, and whilst they cause me a large element of distress, they are insignificant compared to that feeling of being confused, vulnerable and not having a place in the world.  This is why I take such an exception to people saying they have Autism or Aspergers just because they share one or two of those traits.  This can lead to the condition being trivialised and developing an ‘oh we all go through that’ attitude which is the reason so many people with autism remain isolated or victims of bullying.  Because we all supposedly go through it, we should just get on with too and that to me is frankly absurd as well as making people with autism potentially very vulnerable (again I will elaborate on this a little further in future blogs).

Many people have said to me that I should forget the past and move on.  That advice is no doubt very good, sound and necessary.  The problem I have had in my life is knowing what I am moving on from.  If I don’t understand why something happened to me and the motives behind peoples actions then it is very hard for me to say ‘stuff them, they’re not worth it’ and I subsequently look to myself for the blame.  Even when it is explained to me I often don’t understand or I remember the explanation temporarily before asking the same question again.  Because of my logical thinking it is often hard for me to understand that people have character flaws and their behaviour has nothing to do with me.   I assume I have done something wrong I keep trying work out where I have gone wrong to put it right, and often you’ve done nothing wrong other than being an easy target for a bully.    This confusion and the pressure to pretend I can cope make it difficult to know when I should stand up for myself and when I am over reacting.  My stress levels rise and as much as I try to hide my emotions it eventually becomes too much and then I blow.  Losing my temper is easier for me than confronting someone because losing my temper does not require the same social interaction skills of looking someone straight in the eye, and telling them I have had enough.  The problem with that of course is that you end up going from being gentle to volatile in one step, without showing any warning signs in-between.  I am judged on the behaviour and become the bad guy.  People often forget how nice you’ve been and how much you’ve taken before it has gone that far.   I get so frustrated then that people don’t understand that Joe Powell in the words of King Lear, is most definitely ‘more sinn'd against than sinning.’  But then I think differently from most of society, so often people wouldn’t understand the logic behind my behaviour, exacerbating my anger at mankind and my frustration at a society that misunderstands me, which makes it hard for me to avoid misanthropy.  Bernard my life coach is helping me to understand that whilst it is good that I am more aware that some people do take advantage, there are many wonderful people out there who would benefit from my kindness and who in turn would enrich my life, if I was to let them in.   I am still struggling to come to terms with this but I am trying.  Whenever I see people, I see a potential advantage taker, a potential confrontation with someone I really don’t want to be involved with, a potential regret and a possible source of humiliation, a reminder of that unresolved incident that happened years ago and a reminder of how vulnerable and socially incompetent I really am.

As I am getting older I am coming to the conclusion that whilst the past is not always a healthy place to be (especially when trying to manage my mental health issues) sometimes the past is necessary in order to make progress in the future.  This is why the ability to self-reflect is one that has been essential for my development.  The challenge I have is to access the past when I need to, learn from it, forgive myself and then use the experience to move on and not let it hold me back or prevent myself from building the best life possible.