Socialising

V
 

The best kind of Socialising, me at Lamplighter
Pub, St Hellier, Jersey in 2010.

When I first received my Individual Budget in 2008 one of the strategies in my new support package was the employment of a Network Facilitator to help me to build up social networks in the local community.  This was both to help increase my quality of life and to make sure there would be people in life who would look out for me once my parents were no longer around.  The job of the network facilitator was the most difficult role in my new Individual Budget and I pitied the person who had this job, because it is the one (to this date) that we never got right, and whilst I haven’t given up, I strongly suspect that this may be something I never achieve.  This month’s blog will hopefully give an insight into those experiences.

Network Facilitator

            My network facilitator and I investigated a lot of opportunities to build social networks.  We looked at taking part in the local Dolman theatre (an amateur theatre in Newport) either to try acting, help out with the stage/ lighting etc., and whilst I quite enjoyed watching the actors rehearse I found it very difficult to get motivated.  We looked at me possibly helping out at Newport County football club on match days, helping either as a steward or in the club shop (whatever needed doing) but even that didn’t thrill me a great deal.  It was a nice day out but again couldn’t motivate myself to take it any further.  Ju-jitsu, Pontymister Football Club, Ninjitsu, Karate, Kung Fu, all the same, it just didn’t inspire me.  The man who did this job really had the most challenging job on the entire team and since he has left his position, my remaining life coach Bernard Pearson and I have taken over this search for social networks and although we are a little further on I am still not enthralled.  Socialising causes me so many problems, the biggest of all is the fact that I really struggle to see the point of it all.  I find it incredible that there is such a thing called a pass-time in which people find things to do solely for the purpose of wasting-time.  I find that incredible.  Maybe this is where being on the autism spectrum does really show itself in my nature.  But how much of this is because I am autistic how much of it is my personality and how much is it as a psychological response to past difficulties with socialising.  Am I hiding to avoid past pain?

The Autism Quotient.

            There have been times in my life when I have doubted whether I am on the autism spectrum.  This is for two main reasons, firstly, I am me and my experience of the world I live in and who I am are very unique to me (as they are to you) and like all of us, we don’t see ourselves the way other people do.  We don’t always see our defects or our differences in the way others do.  Once of the other reasons is the fact that autism is so strictly stereotyped (and my autism is particularly so complex) that it can be difficult to always recognise myself in how autism is supposed to be.  Two things always remind me of my autism, one (most importantly) was the autism brain scan I had as part of work Research Autism did with Professor Declan Murphy and Dr Christine Ecker as part of their autism brain scan technology.  My brain scan clearly showed that I was firmly on the autism spectrum (I have never doubted my autism since that day) and also when I look at Simon Baron-Cohen’s Autism Quotient.  I just have to read the questions on there and it really reminds me of how different I am.  One question more than any other really reminds me that I am autistic and it is this one: -

13. I would rather go to a library than to a party.

Logic

            I think my logical brain is one reason for this.  They say there are several types of intelligence; two of those are the academic and the social.  I believe the more a person lacks social intelligence the more they have to use the academic/ logic side of their brain to make up the deficit.  For some people it makes them look so rigid and stereotyped, I don’t believe it is that bad in my case (although I don’t believe I look particularly natural) but it is mentally exhausting and maybe this is the crux to why I don’t like socialising.  I also believe too – that logically it doesn’t make sense to socialise.  Why would a person waste time burning up time, drinking several pints of beer, when there are so many things a person can do with their time.  We live only once, I want to make sure that I do something with my time which justifies my existence.  For many other people, a good life is working to earn enough money to enjoy themselves, to live for today, to pass time before they die.  I actually think that is such a waste of a life.  Each to their own I suppose.  I think another reason I find socialising difficult is because people annoy me enough anyway, and placed in a social context without any real purpose or structure, they increase their capacity to annoy me.

Skittles.

            One of the first activities I did when leaving social care in Manchester and moving to Newport was to join my Dad’s local skittles club, to help me mix in with ‘ordinary’ people in society and increase my social skills.  It definitely helped me up to a point and it was a real education, but again up to a point.  It was a night out, I could have a pint and let off steam but most of the time it was a real chore.  I hated being tied down to do something which just didn’t make sense to me.  Why would blokes play skittles in a pub?  Why would grown adults get smashed and enjoy it?  And why do people take these things so damned-seriously.  But most all I think skittles reminds me of how human people are and maybe that is my real problem.  People are analogue and not digital, they are flawed and (whilst I am flawed too) the flaws of the general population are so very different to mine.  I know I am not perfect but I really don’t believe I would ever do anything at others expense.  I don’t want to control anyone, manipulate anyone or get one over on anyone.  Maybe I am being cynical but this is how I view humanity.  Human beings disgust me far more than they ever inspire me.

            For instance at the skittles, people seem to get on well with me and they comment to my Dad that they think I am a nice lad.  I do appreciate that and because of that I feel bad about what I am going to say, however I am going to be honest.  I do find the way some of them behave appalling, if not bullying.  People shouting each other down, talking over people to prevent them having a say (my Dad is particularly talented at that), people bitching about each other when they get a bad score, ignoring you when you say hello to them or just grunting (because they aren’t on top form themselves) or scoring points against each other when they don’t get their own way.  These are people mostly in their fifties upwards and it still amazes me that they can be so ignorant.  Why would I want to put myself in that situation week after week?  Nobody wants to be our team’s secretary or our captain and when somebody reluctantly takes on the position for the sake of the club they can often be the subject of abuse and ridicule because they weren’t played in the position they wanted.  A good excuse to blame others if they get a low score.  Yet the people who take this abuse keep going back for more (when it clearly upsets them).  For someone like me who tries to be polite and amiable and doesn’t have any issues around ego it can make me vulnerable, which heightens the anxiety and nerves I have around conflict and subsequently makes me less prone to mixing.  Because social skills are more than just being polite and courteous, sometimes you have to make sure that others don’t take advantage of you too.  If that is the way the world is then why get involved any more than you need to?

The Pub Quiz

            One of the events which has been more successful is the pub quiz which I attend with my life coach Bernard Pearson.  It is a far nicer and less aggressive atmosphere than Skittles and everyone is generally very warm and friendly.  There are still times (like in all walks of life) when I feel offended by the odd thing someone says etc. but on the whole it is a completely different social experience.  This makes it a lot easier for me and my attendances there are far more regular than skittles but there is still one major problem for me.  And that is I still feel like I am killing time for the sake of killing time, sometimes that is most gratifying, there are times when I actually need it, but I don’t feel this way that often, and I like to pick and choose the times I do it.  Most of the time I spend worrying about the things I would much rather be doing.  Practical things, useful things. 

How do I chill out?

            Maybe I am a born loner, maybe I am hiding from past difficult experiences, maybe I find social experiences so stressful that I like to limit them as much as possible, but I really find being at home the most relaxing and invigorating experience of all.  When I come home from University, work or anywhere I love to be back in my own home around my own environment.  I will elaborate on individual social experiences such as University etc. in future blogs but at times when I am out in public I feel so inadequate it hurts like hell.  When I get home, I really do shut the world out.  And I really need to get away to help me survive.  The fact that my home is so isolated, really aids that effect too.

            Chilling out to me is cleaning and tidying, with Talksport on the radio or playing my music.  Getting my flat tidied.  Getting all of those jobs that are building up out of the way which really lift my spirits, that to me is relaxing.  A very quiet and boring life by most people’s standards but in my case very necessary.  People are my Kryptonite and sometimes I can be so easily distressed not only by the things that people say but sometimes the things they don’t say, the times they don’t make things clear or reassure me when I need it.  People are so damned complicated to me.  I am conscious of the fact that this experience is so typical of what we’d expect from a person with autism, but it is really difficult to find a different way to say it.  Whether I need people in my life but need to find a better way to make this happen, or whether people and I just don’t mix, I have no idea.  I suppose only time will tell.  I do feel however that some of my experiences may stem from the fact that we are still living in pioneering times and many people with autism (like me) are still fumbling our way in the dark.  How much (as human beings) is socialising good for me and when does it become a hindrance?

 

 

 

Candidate No. 17.

IV

Labels are sometimes positive things.

                Being autistic often means your life is judged by a set of statistics, many of them being negative statistics to highlight to important decision makers the fact that so many people with Autism are still disenfranchised and denied real opportunities to build sustainable lives for themselves.  However on the 9^th October 2012, I became part of a different statistic, a rare statistic that I thought I would never be a part of.  I became one of the 15% of people with autism in this country who was able to access employment.  And not only has it already made a positive difference to my life, It reminded me of why so many people with Autism are still denied opportunities to access the workplace and how ludicrous the work and benefits system we have, which makes things unnecessarily problematic.

                I will begin by telling you about my job.  The All Wales People First movement (a self advocacy group in the UK) decided that they wanted to appoint a person with a learning disability as their National Director.  I and several others applied and were invited to attend a series of two day interviews in Cardiff.  On the first day we took part in group discussions and individual presentations about how we would use social media to communicate to the media about what we would do in our position as National Director.  Then after being assessed and marked on our performance (how we contributed to group discussions, mixed with others and performed our presentations etc,) we were then told the next morning which of us had been selected to go forward for a formal interview. I and four others were selected for a formal interview.  I was the third to be interviewed, in a room called ‘Bernard’, which seemed quite apt seeing as my life coach is called Bernard Pearson and he has played an enormous part in picking me up after leaving social care under very distressing circumstances and the fact that he has always been so encouraging about my place in the workplace and the value I could bring there.  Bernard like so many people have far more faith in me than I have often had in myself, and he has been keen to encourage me to gain a new set of experiences which would validate my positive place in the world to replace the negative ones.  I am not religious but I do believe in fate and omens and whilst I didn’t assume the role was mine just because the room was called ‘Bernard’, I was confident that I ought to have been there playing a part in the process.  Feeling positive that I had taken part in a process, that I was a candidate and that I was ‘in with a shout’ gave me an enormous sense of purpose and fulfilment, getting the position would’ve been the icing on the cake.

                That evening I went shopping and noticed a missed call on my mobile and landline.  It was Yvonne Boxall from All Wales People First informing me that they would like to offer me the position.  I of course accepted and it was the most wonderful feeling.  Scary, exciting, exhilarating and nerve wracking, but all positive nerves, the type which help you to focus on the future, to believe you have a future and the kind of opportunity which allows a person to come out of their comfort zone and build onto their life, rather than living in fear that the past treatment in social care may come back to haunt me and dwelling on the negative experiences there.  My parents were thrilled and I went to Quiz with Bernard and our friend Neil Binnell and I was on cloud nine.  It was the best feeling I had in years, the antipathy of all those times I had suffered disappointments in my life.  One of the most wonderful parts of it was in seeing the joy it brought to others, especially my parents who met up with Bernard and I on the way to quiz and were overjoyed and proud to bursting point.  They gave me twenty pounds to enjoy myself and I certainly did, though I didn’t drink much alcohol, just being out and about knowing I was paying my way in the world and contributing to society, was the most wonderful experience.  Wales has been a wonderful place for me, although I am not Welsh, I associate the progress and the new life I have build here since 2002, to Wales, and it was wonderful to have a position in which I could serve the Welsh nation in some way, to thank it for the wonderful opportunity it gave me for a new life, all those years ago.

                Getting back to work has however been problematic and it has brought it home to me, just why it is so difficult (for anyone) let alone a person on the autism spectrum to get back into the work place.  Firstly (in my case) I was due to be assessed by Atos after the interview process had taken place.  The thought of returning to the work place, unsupported was very scary for me and I strongly suspected I would lose a lot of my benefits and be forced to access work.  Working was something I had always wanted to do, but without the right support it would have been hell.  The job wouldn’t have caused me problems, but people, people and the work place politics are what would cause me problems and as I mentioned earlier, I suffered enough of that bullying in my care services and that became my only real perspective on how ‘life’ out there would be.  Fortunately getting my job has spared me the Atos process; they have written to me and told me I need not attend.  That is one big headache out of the way.  I do really fear for others on the autism spectrum who do have to face this process however, especially with the horror stories in the national press about people with terminal illnesses etc being forced back to work.  How much of this is ‘typical’ or sensationalised, I don’t know, but certainly the rumours about Atos and the whole process has terrified me and so many people I know with learning disabilities and Autism.  The whole ambiguity of what will happen and how the new system will work is really not ‘people’ friendly let alone ‘autsitically friendly.’  It does seem unfair how people with autism (like many with disabilities), were on the scrap heap with little prospect of work are now an essential cog in David Cameron’s ‘Big Society’.  Research Autism and other organisations have always pushed the importance of allowing people with Autism to access the workplace, but it seems bitterly unfair that it is only happening now when it’s convenient and  with little support.

                Going back to my situation, one of the most difficult parts (and most exciting) was coming off benefits.  It was wonderful to think I would stop claiming benefits but I hit a major hurdle in the transition from benefits to work.  Obviously my benefits would stop and it would be a month before I got my first wage, meaning that for a month I would have no income in which to pay my bills.  I was told by the Department of Work and Pensions that I would get my Income Support for a month after I returned to work (and not have to pay it back), would get a one hundred pounds bonus for returning to work and then forty pounds per week once I started work for fifty two weeks as an incentive to return to the workplace.  I was also told that I would still receive my housing benefit and council tax payments for a month and would not have to pay them back afterwards.  With that, my wages and working tax credits, everything was looking superb, but there were snags.  Firstly the D.W.P, had dropped a clanger, I would not get Income Support for a month after starting, but I would get the one hundred pound bonus and the forty pounds per week.  A mistake with my housing benefit meant that this was not paid to me either.  I chased this up; they acknowledged their mistake and promised to make me an emergency payment which would arrive the next day.  But it didn’t.  I was then told they made a mistake and it would take several days to clear.  I couldn’t claim working tax credits because they couldn’t identify me, but didn’t make that clear to me until I called them and asked why it was taking so long for my claim forms to arrive.  I had to then go to my local Inland Revenue office and identify myself before I could put in my claim form, which I am still waiting to be processed, and am still not sure if this will be granted or if indeed the form will be returned to me, through not filling it in properly etc.  Fortunately my D.L.A. has not been affected, although that will inevitably change next March when the government introduces its Personal Independent Payments, whatever they are.

                And that’s the problem, the ambiguity.  The D.W.P website has reassuring messages to those with disabilities about the new system but it is written in generic terms.  It says the system will be fairer and that it is focused on making sure those who deserve benefits get them and those who don’t are removed, but that is open to interpretation, for my viewing it doesn’t properly identify who will be affected and who won’t and it doesn’t reassure me that they understand disabilities such as autism and other so called ‘hidden’ disabilities or learning disabilities.  To be fair to Atos the application form does enquire about all disabilities including learning disabilities but with the sensationalist headlines and political spin from the opposition, it is very difficult to really know where people stand at the moment. 

                On the whole, it has all been worth it.  Coming off benefits, signing up to a pension scheme and the pride of going off to a job, has had an enormous impact on my self-esteem and my feelings of self worth and this makes me more determined to advocate that all people with autism should have the same opportunities.  However as I work for an organisation who are sympathetic to Learning Disabilities, it has been far more accessible than most other jobs I could’ve applied for.  If it wasn’t for my parents lending me money until my wages arrived, there would be no way I could’ve taken this job.  The benefit cuts are cruel particularly because not only could some people be forced back into work without the right support; some people may not have the right people to advocate for them or parents to sustain them whilst their financial situation is settled.  I have spoken in front of many senior politicians thanks to the opportunities given to me by Research Autism, and they all speak so eloquently about disability and they speak as if they really do get it.  This brings me to one conclusion.  And that is that organisations like Research Autism are being heard and they are getting their messages out there, but obviously disability issues are not as important to the government as issues surrounding the economy and trident for example.  I don’t want to scare monger but I believe we are living in some of the most challenging times in the history of disability and it is at this time we are really being tested in how we think about, promote and empower people with autism.

                I would like to end this blog by saying an enormous thank you to Richard Mills (R.A. and N.A.S) and Assumpta Finn, (Jersey Social Services) for agreeing to be my referees in my job application and an enormous thank you to Geoffrey Maddrell and everyone at Research Autism for the marvellous opportunities which allowed me to develop as a public speaker and to gain the relevant experiences to submit a strong job application.  I have no doubt that these experiences have played a large part in preparing me for the interview process and has given me some important skills to help in my new job.

Hospital

III

(Apologies to all who have read my posts and have liked/ joined this group.  A technical error has meant I have to relaunch the site, therefore I would be grateful if all members rejoin.  Apologies for any inconvenience this may have caused, the pictures on the posts The Past and Googlesurance will be re added in due course.)

Terrible being labelled.

In my blogs, I often talk about my autism, the insights certain life experiences give me about myself and my condition and how they remind me of how debilitating they can be at times too.  Last month, (for the first time in my life), I was admitted into Hospital and this experience was no different, except this experience also showed me the human frailties others have, the areas where being on the autism spectrum are not necessarily barriers to the social world. 

            I was out shopping in Newport on bank holiday Monday.  I walked around town getting the bits and bobs I needed, shopping and co and returned to my flat to prepare for an upcoming job interview.  As I bent over to take off my shoes, I felt an enormous sharp pain across my chest, it felt like it was being crushed and it was agony.  I was in so much pain, I could hardly breathe and speaking was so difficult.  I had often joked that I should support charities like the British Heart Foundation (as well as Research Autism) because my poor diet meant I could one day need their services.  This day I feared a visit from the Grim Reaper, and as scared as I was, I also broke out in a fit of giggles (which hurt the chest even more) at the thought of Mr. Reaper, being so disgusted at the state of my flat that he would walk out and come for me another day.  When he saw the empty curry and takeaway cartons that hadn’t been put away, I knew he would have no sympathy for me.  Whenever I am busy, my flat goes to pot and unfortunately this was one of the worst states it has ever been in, what a time for the ambulance crew to walk in and what a state to show my life coach Bernard Pearson.  Bernard doesn’t judge me on this, but I didn’t want him (or anyone) to have to endure that.

            After feeling tingles in my wrists and legs and feeling like I was going to pass out, the ambulance crew wheeled me into an ambulance and did and ECG test on me.  It was all fine, but because I was still having crushing chest pains, twenty minutes afterwards, they decided I should go to the hospital to have it checked out.  How embarrassing!  I was wheeled into accident and emergency, my worried parents were waiting for me, as I was wheeled out, my shoes still not on properly and hanging off my feet.  I was then wheeled into an assessment bay whilst they checked me over.

            The first thing they did was take my blood (well they tried, they couldn’t get any from me) and this started my fit of giggles.  When I am nervous and squeamish these giggles really come into play and if there is anything I am really squeamish about it is blood and the heart.  I jumped out of my skin whenever the medical staff touched my skin or tried to put a stethoscope near my chest.  They gave up trying to take blood in the end and did another ECG test on me and it was fine, yet the crushing pain was still there.  My Mam helped put my shoes back on me and was making a pig’s ear of it.  I was joking how she would dislodge my kneecaps and there would be blood all over the ceilings and walls and there would be plenty not just for my blood test but also for anyone who needed it that day.  My Mam and I were in fits of hysterical laughter whilst my worried Dad looked on in disapproval.  My giggles weren’t helped by the fact that one of the ambulance crew was singing the Middle Of The Road song, ‘Where’s your Mamma gone?’ which I didn’t think was the most appropriate thing to be singing in an A & E department.  I also had images of my Dad walking past the bed with one of the limbs from the limb bin, doing a Jake the Peg to cheer me up.  My chest was heaving as I had another inappropriate laughing fit, which always happens at the most unfortunate times.

            To cut a long story short, they did eventually get blood from me (apparently blood test shows hormonal fragments from the heart which shows whether a heart attack had taken place etc) but this and several other ECG and blood pressure tests were fine, a scan of my chest proved normal too (amazing when you think of my disgusting diet of lard, more lard and nothing green).   As the chest pain was still crushing they decided I must stay in overnight for observation and because they needed to do another blood test at two in the morning because sometimes the signs of heart attack don’t show until much later. 

What a drip.

            It felt strange being in hospital.  I have never been there before and I was kind of curious if I am honest what the experience was like.  I have to say the staff were lovely, and really tried to be reassuring to me (they knew I had Asperger Syndrome) and they told me that visiting hours didn’t apply to my life coach Bernard, he could come on the ward whenever I needed him.  Although they didn’t know a lot about me, my condition and although they clearly had little experience, what I thought was fantastic was the fact the tried so hard, were kind and in my book that goes an awfully long way.  I was so impressed and moved at how hard they tried.

            Socially I struggled.  They asked me the medication I was on, I told them about my anti depressants etc and that I wasn’t allergic to paracetamol.  They gave me some paracetamol to help ease my pain, but because they put them down in front of me and didn’t tell me, I didn’t know they were mine, and that I should take them.  I was also very confused about the rules about whether I could pull the curtain around me or not when I went to sleep, I didn’t know if it would offend, appear weird or rude, but to be honest, I was shy about people seeing me in bed and shy about showing people my old mans pyjamas, which I have a real love of as part of my routines.  I texted my Dad and he confirmed it was ok, so that was what I did.

            I couldn’t sleep that night despite being shattered.  I googled on my iphone looking at the symptoms of my condition to see what it could be.  At that stage the doctors had only three possibilities, a heart attack, angina or acid reflux.  Apparently heart attacks are very rare at my age but not unheard of. However all the symptoms were more in keeping with a heart attack than angina or acid reflux and although I felt scared, I also felt ashamed too.  My Asperger's logic came into play and told me it was my own fault, I didn’t deserve sympathy, I am intelligent enough to know about healthy eating and if I abuse my body then it is my own fault.  However if it didn’t prove to be a heart attack or one of the other options, they were going to perform an endoscopy which I realty wasn’t looking forward to at all.  I don’t know if was nerves or me being an idiot, but I had the most absurd laughing fit behind the privacy of my curtain and I so hoped nobody could hear me outside.

A lot of silly thoughts and scenarios were cracking me up, but one of them (my sick sense of humour) was the thought of deliberately dying in my sleep just to be awkward and then the hospital staff being furious with me for causing them such an inconvenience.  Silly humour I know, but I love that kind of stupid stuff and I have never been afraid to laugh at myself.  I had to suppress my sniggers and it was so difficult but I think I managed it on the whole as a whole manner of silly ‘what if’ scenarios crossed my mind.

Do I press it or not?

            I did however learn a lot about people and how they operate.  What became very clear to me was the fact that ‘people’, generally as a species have human flaws and that egocentricity and a lack of empathy are not always confined to autism.  It was amazing how many people expected to be the centre of attention despite what others were going through, how they expected to monopolize staff time and how two faced people could be too.  On the one hand complaining about staff, then when they came to help them, were as nice as pie ‘oh don’t you worry love, you just get here whenever, I realize your busy etc’, Catherine Tate's grandmother sketch came to mind.  One of the difficulties I also had (and insights) was in the way different people perceived life and how that affects the way you understand and gauge with the world.  Whilst my Asperger's affects me a certain way, others, of different age groups with different life experiences, growing up in a different society had a much different outlook on life than me.  One elderly man for instance (I hope this is not patronizing) was so sweet.  He was gentle, frail, in his nineties and probably in his second childhood (although I hate that expression) but he had still lived a full life and even when he was angry (and at one time told off one of the nurses) he was still so very sweet.  During the night he couldn’t find his buzzer to alert the staff he needed the commode, I froze with fear because I didn’t know what the social rules where.  My compassionate side told me to press my buzzer and then tell the nurses that the man needed help, but another part of me couldn’t work out if I was allowed to do that or if it was appropriate.  I am ashamed to say I did nothing (found out later it was appropriate) but fortunately they got to him before he had an accident. 

            I awoke the next morning (didn’t sleep much as ward very noisy) my blood was clear, the doctors did their rounds and suggested that I had probably pulled my chest muscle as they checked everything out and it didn’t look like a heart attack, angina or acid reflux.  I was discharged with great relief but also a sense of embarrassment.  I had caused all that worry, yet there was nothing wrong with me.  It did really hurt though.  My fears were allayed somewhat however when that evening (despite chest hurting) I decided to go to quiz with Bernard and (would you believe it) I did it again.  The agony so unbearable I realized why it was so important I had it checked out.  Needless to say I didn’t go to quiz and returned to my parents for some TLC.  I was hobbling for days afterwards but on the whole (touch wood) I think it is all settled now.

            I’ve always been curious to why I get so silly at potentially serious moments.  Is it nerves, a coping mechanism or as a way dealing with my anxiety or stress.  It happens to me in several situations but especially at the doctors or the dentists.  I remember on one occasion being supported by my life coach during a period of high anxiety and depression for a medication review.  Maybe it was nerves, anxiety or the embarrassment of taking about myself and admitting I was having problems, but I was due to see Dr Saleh, and as we were waiting the Oasis song ‘Don’t look back in anger’ came on the radio in reception (music fans will know where I am going with this one, those who don’t check out the song) and I suggested to Bernard that we should walk out of the clinic and walk back and forwards past Dr Saleh’s window until my name was called.  Then when my name was called we should ignore it and keep walking past until they move onto the next patient.  I then suggested we should go to reception and complain that we hadn’t been seen.  When the receptionist said, ‘well your name was called why didn’t you respond?’ I would reply with ‘Saleh can wait, she knew it was too late as she saw Bernard and I walking on by.’

Googlesurance

II

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.

The Past

                        I.          

My picture from a 'bonny baby' competition, 1976/1977.

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. 

My first birthday party, 1977.  I am at end of table
(in front of cooker) with Mam.

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 I possibly can.