Dancing in the Grey – Life with my Asperger’s
© Rory Matier 2015
This chapter is in two parts.
Please Note this book was written in 2015.
The views within these chapters are mine and may not necessarily resonate with others on the spectrum – however bear in mind the quote by Dr. Stephen Shore .. “If you’ve met one person with autism, you’ve met one person with autism.”
Chapter 16 – Ep 27
Hidden Chapters of Yesterday
You will have read at various points during this book, that the first ever manuscript penned was very a dark portrait of my personality indeed. When l wrote it, l was not completely in the right frame of mind to start the task. However l felt compelled to noting my poetry and trying to make sense of everything going on around me. I was so very angry at not just myself, but family, friends and lovers and of course life itself.
I believed for a long while that this damned disorder had ruined my life, but over time came to understand and accept it as part and parcel of who l was, it is after all a major part to my personal identity. Aspergers from an early start shaped and moulded me, my Father and Mother both continued to mould me over the years and not just in the home, and they did so because of their own continued upsets, disappointments and emotional turmoil’s, but above everything, their mixed feelings and confusions over what went wrong, how did it happen and why did it happen?
They are too bitter these days to move on successfully with their lives and whilst they achieve it to a certain degree, they have still not moved on properly because of their own yesterdays! I am not saying that if my Father was to accept a diagnosis now it would change him, the narcissistic trait within him would simply not accept anything of this nature. And if my Mother was to have it confirmed would it change her beliefs and make her come to terms easier? No, for as much as she maintains she is forgiving, she isn’t. The man who was her husband for many years, Father to her children caused her too much inner discomfort and she sadly will never move forwards.
My Mother forgets something in all of this as well, she too suffers from selective memory issues – both of my parents always forget that l in fact have two issues, comorbid to each other and these are Asperger’s Syndrome and Bipolar disorder. I was diagnosed with Bipolar first in 2004 and Asperger’s in 2008. Many people say that the two cannot exist side by side, but they can and they do. With everything l have studied and researched over the years since 2009 and have looked back at my own family history and that of my family – ‘quirky’ is present. From both of my parents sides.
My Mother was diagnosed with Munchausen or what is now known as Factitious disorder when she returned to England, if memory serves, we arrived back in 77, and she was diagnosed in 82, it was then further identified that she had been guilty of Muchausen by proxy with me. I strongly suspect that my Mother has/had./suffers from Bipolar. Munchausen and bipolar are also comorbid to each other. These days l recognise many of the symptoms of Bipolar were present in my Mother when l was growing up with my family. She was constantly swinging in temperament and whilst yes it could be suggested that was because of my Father’s behaviour l do NOT forget my Mothers own violence towards me anymore than l forget my Father’s. I think it went unnoticed in her by the medical profession. Years later when l was diagnosed with BD the doctors suggested that one of my parents had it, and l was stuck as to which one, as they were both odder than odd to begin with!
Under no circumstances, can l ever defend my Father’s aggressive behaviour displayed to my family as we all grew up together. Whilst l may have forgiven him, l only did so that l could get on with my own life. Whether he was a struggling confused Aspergian or not was no excuse for his mental and physical cruelty aimed at his wife or his children. I will never forget moments in my young life when the man l loved terrified me to my very bones, l can forgive, but l can never forget, even if at times l wanted to.
When l left the family home l was under no delusions of life being easy, l already had bitter experience to prove otherwise. I had to contend with issues that l was never able to address with my parents to satisfaction. I left on a cloud of relief, and whilst l did have concerns over my Mother and Sister l simply had to detach from that emotional conflict. [In many ways and not known until years later both of my parents behaviour and not just one had scarred me].
I also had no idea that l was like my Father in so far as shared many of his personality traits and l was totally clueless that we shared the same disorder. In the years that followed l would experience more than my fair share of confusions, l would encounter bullies and manipulators and l would encounter horrors of my own.
In 2010, l was cynical and broken and bitter, the writings of the time reflected that honestly. But that manuscript was not right, and so with the second rewrite was l able to address certain issues with more objectivity and still it was not right. This book of today, is now my final rewrite, l am done with it and want to move on with my life. But now l can write with a calmness, that is not saying that l have not travelled down into some darkened areas again, that l wished to never revisit. For l have, but what l need to say needs to be written and the result is this book. Aspergers syndrome is not a walk in the park for those affected by the disorder, diagnosed or undiagnosed knowing or unknowing, it is an unpleasant journey taken into acceptance or in some cases not. It is their life, it is the story of their lives, they are born with it and they most assuredly will die with it. There is no cure, it is their disability and it is their burden.
I am lucky, very lucky – l am a diagnosed Aspie, and l am proud to be so labeled, but not for the reason many think, but only because had l not been recognised or even diagnosed l dread to think where l might be today, still fumbling around in the dark!
l may not have the answers to all of the burning questions l once had buzzing around in my confused head, but l have sufficient knowledge now to better arm myself against this world and more importantly to work within our society! To reach this destination, has taken me a good many years, long before the faintest glimmer of recognition.
Not many people can honestly say they are at peace with who they are, where they sit and where they belong, finally l can, and whilst l did much of it on my own, l did not always do it on my own. The biggest problem we encounter in life is not simply knowing who we are; it is knowing we are not always alone.
I don’t have experience of loneliness, but l do know what it is like to be alone – l have spent much of my life alone. I have had friends and partners and have felt very alone at times. I had my dogs, and whilst only one of my original pack is left today, she has shown me more friendship at times than any of my family, friends or ex partners was ever able to.
But, l also have Suzanne in my life today and she alone made me believe in not only my self again, but also in life.
Before her, my life was not easy however!
Behind the mind – the darkness within
Some riddles do not have answers …
There are many dark sides l believe to the Aspergers disorder, and from what l have read during research, also much in the way of controversy and argument. I have not encountered much in the way of literature that is not clinical or scientifically based that covers the negative aspects of this syndrome, and although some touches upon it, as said many do not.
I have said that l did not specifically have an unpleasant childhood, but home life whilst living with my parents was not always rosy, there were many arguments and l can remember many of these from as young as five, my Mother was never happy being married to my Father and her unhappiness only continued as her children became older, and my Father seemed to always be in a constant state of anger, and other times confused to my Mother’s requirements and desires seemed to elude his logic.
My Mother would often confide in me during her saddest moments and would often comment on how bizarre she found my Father’s behaviour to be at times. This was not something that was new to me, apart from the blatantly obvious signs that l could see that he displayed, as a youngster l was terrified of him, my fear of this man stemmed long into my adult hood, and l can say that by the time l was in my mid 30’s the fear was gradually starting to slide away, but only by the time l hit my early 40’s did that fear completely disappear.
Growing up in my family was never easy; there was a lot for each member to put up with, conflict, anger, violence, confusion, arguments, uprooting, many different homes and schools before settling, l don’t think it would be unfair to say that each of us was troubled in some way. Stress, tensions and anxieties were much higher than most normal family house holds.
I saw things that l never wanted to see, and even had l not been Aspergic, life was already disturbing enough. Witnessing aggressive behaviour between your parents is always unsettling. I remember clearly the time once at breakfast, my parents goading each other on like a pair of school kids when suddenly my Mother snapped and stabbed the back of Father’s hand with a fork, it penetrated his flesh like butter so hard was the strike, and stood upright like a flagpole! I thought with the look he gave my Mother that he was going to kill her there and then, and instead he left the table, removed the fork and returned to the table, continued eating and did not say a word. There were many instances like this at home, too many.
To then add to the ingredients we must look at the disorder present in at least two members, maybe even three because some of my Sisters actions ring warning bells with me, and then a Neurotypical Mother whom is constantly feeling the strain of everything and trying to hold the unit together, but who is harassed by poor health – imagined or real. In her younger years she had suffered many miscarriages due to my Father so she says, and although he classed her as a hypochondriac perhaps it was not simply that but she may well have been slowly deteriorating.
But also one must not forget that she was under the brutal gaze of my Father for many years both physically and mentally, and if he had the disorder as l believe him to, then this would have added considerable weight to everything else going on, as this would not have even been remotely recognised let alone diagnosed. Making matters worse was his unusual behaviour, his own confusion and to boot his drinking.
As a boy my own personal stresses, strains and unusual behaviour led my Mother to believe l was ill, but more importantly she believed there was nothing wrong with me on a deliberate basis but only that l was reacting to my Fathers’ actions and this would not be against logic to assume, if l had been an NT l would have been reacting to everything going on around me, as it was l was also an undiagnosed Aspie, and whilst l remember trying to keep myself isolated from much of what was going on in my house, it proved very difficult at times when my parents mostly my Mother would insist on including the children in the frequent arguments, looking back it may have been the only weapon she believed she had against my Father.
But by including the children, predominantly me in her arguments against my Father, in his eyes, she was alienating us against him. Something even to this day l often wonder if he still holds against me, especially in his favoritisms towards my Sister – in his eyes she can never do anything wrong, when even with those same eyes if she does wrong, it is forgivable!
And so l was a victim of stress from a young age, as to how old l can not pin point exactly, l have an excellent long term memory, but even l can only go back to scattered images and scenes when l was really young. My Mother told me many years on that when we left England and arrived in Australia for the first time and l was around two years of age, l refused to speak for nine months, even though l had been speaking before l left. The doctors at the time suggested this might be a form of trauma and said l was simply adjusting to my new environment. She also confided in me that when l was young, l would go to bed at night in my pajamas’ but the next morning sometimes the trousers were shredded and it appeared that l had caused some harm during the night as l had scratches on my legs.
My stimming started when l was around eight, and l was a constant whir of facial tics, over active hand movements, constantly fidgety, rocking when sitting and a host of other odd behaviours. Some of these l recall, and some l remember thinking l am not sure why l am doing this but it calms me so don’t worry about it, but it used to anger, frustrate and annoy my parents and at times as l got older my Mother would berate me for them in front of the other family members and sometimes in public, which left me many a time feeling awkward, embarrassed, humiliated but also very angry at her.
By my early teens, l was really starting to feel the affects of long term stress, l had problems at school, was open to bullying because l was different, especially in Australian schooling, where when l was eleven l was considered a day dreamer and not very bright, and so ended up attending Monterey Technical School which was my worst nightmare even then, as l was in no way practical minded, but this was the only safe bet according to both my teachers and parents because obviously l was not an academic student.
But then l was subjected to serious bullying from fellow students made even worse by the fact that in their eyes l was not just weird but a poof and a pommie to boot, in the so called pure bred ‘aussie’ eyes! I was not homosexual, but was incredibly shy around girls, and made matters worse by saying to a teacher that l was more like Dick Emery, and this then got out of hand. What l had meant was that l tried to use comedy to get along with others, but it backfired badly and l had to live with that for the remainder of my time there.
So school was not a happy place for me l have to say, and made worse by my own Father’s expectations of me and failure to deliver simply resulted in mental abuse from him, the fear of him alone was enough for me to not always worry about the physical abuse from students. As hard as l tried to please everyone else, l forgot to simply enjoy myself and basically became even more stressed with everything going on. Escapes at the time were very few, but l was always a book worm and had comics, cubs and war gaming.
By the time l moved back to England, at around thirteen’ish, l deep down knew that there was something amiss with my personality, but it was many a time best not to say anything to anyone lest it be taken on board that l was mentally ill. Schooling was again hard work, when l became a student in a secondary school in Woking, Surrey l then had to contend with again being the new boy and being placed a year behind my own age group because in British eyes, l was behind the basics of English education due to my Australian schooling, so then had to put up with comments of being stupid by peers.
It was not helped by the fact that when l first ever arrived back in the UK from abroad, for the interim period l lived in Wales and had to attend a Welsh school for six to eight months whilst my Father found work down south – so found myself at the mercy of bullies in the Llanrwst Secondary School who reacted to my strange accent to their sing song dialects, was not used to the bitter cold and constant snow [it was winter] and having to learn a language which l really was never going to ever use but was part of the curriculum and had no choice with. The language learning was made worse by the fact that the Welsh language learning books all used Mexican cartoons which added even more to the confusions!
Life with the arrival of puberty was really becoming painful in more ways than one! Painfully shy around girls, spotty due to the arrival of acne, trying to fit in with the crowd and having to put up with an unwell Mother and an oddball Father – sure what else could life be at home but normal? With everything going on around me, it was hardly surprising that l started to really become very angry with my lot.
My partner says to me often that l am more emotional than she has read other Aspies to be, this may be so, l have met a range of fellow Aspies and have found them all to be as varied as each other when it comes to emotions, so am unsure if l am more understanding or not. Of the books l have read l do see where she is coming from. However because of the way my home life was as much as l tried to distance myself from the troubles, it was never an easy task to be too far away from an emotionally Neurotic Mother due to her husbands’ stranger behaviour, and as such l had to learn at a young age to be supportive even if at times it defied my black and white logic.
I would say to her when she was upset, ‘Then leave him if he causes you this much pain’ and her answer was always the same ‘that she could not leave because of us, the children’. Many a time, l simply wished that they had divorced, just so that some peace could be awarded to me.
Needless to say that during these times, l would become quite stressed and when l used to try and address my problems with her, she was usually so worried about everything else that it usually ended up nowhere as a complaint. I could never discuss anything of an emotional nature with my Father because most of the time he would say ‘l am not very good at these things, talk to your Mother’, so it was really quite the catch 22 situation.
And so l started from a relatively young age to learn to not talk to anyone and continue on with my life, sometimes friends could offer some help, but at the end of the day, it still ended up with my own sometimes perilous logic.
The best tactic was to ignore all the problems and just get on with daily life, many a time during these years l learned to simply accept that this is what being in a family was all about and in truth l think it was here that l first started wearing masks full time. If l could pretend to be like the rest of the sheep then did it really matter if l fitted in or not? Most of the time with humour and mischief attached l could cope, there were plenty of other shy guys around me so we could relate to each other. I sorted of fitted in, but more like the square peg to the round hole.
And so life continued ….
Hans Asperger himself remarked that the disorder would indeed be displayed differently amongst individuals, that life shapes the disorder, that although we all share similarities under the syndrome, we are uniquely different according to our intelligence, our personalities and character, problems we encounter during our lives, our upbringing and so on, so it is clear here, that whilst we are uniform in our overall suffering, that we will all be affected differently. Perhaps this is why it is sometimes referred to as the ‘puzzle of a lifetime?
I have said that l personally believe that this disorder is way too dark to be taken lightly
My Mother would have me believe that l am not Aspergic nor suffer from any type of personality disorder, she would place all of my stress and troubles upon my Fathers’ shoulders and allow his actions to take the blame. Of the way we moved around as a young family, and no solid foundations of friendship could be formed, to not have a proper home till much later in our lives, that his mental and emotional cruelty and his violent behaviour aimed at his family were the prime motivators in my behaviour today. Yet from experience and learned research, l can see that my Father was an Aspergian, yes he did shape me and my life to come, but genetically he had already shaped my life.
Why was l so concerned with bullying at school? If my aggressors had talked to my Father of back then they would have had a much greater advisor than their own school yard antics, and whilst at school, a so called escape albeit still filled with confusions, what seriously could they do that would cause me to become anything other than mildly agitated?
My teenager years as l slowly progressed into becoming a young man were filled with an antagonist who seemed to enjoy his role of tutor to the extreme, l am unsure if perhaps his parenting was a learned technique of his own growing up days or it was a behaviour he had modified to suit his own needs. I do not know if his parents called him, gay, lazy, mentally unstable and backwards, and that he would amount to nothing of any merit, but if they did then all my own Father did was pass on this well meaning advice to his own son. And as such this caused even more stress, and more anxiety and l should imagine that my own disorder was taking a subservient role. I was not anything – not an NT, not an Aspie, God knows what l was becoming.
Life was not easy living with a perfectionist who to boot was also a strict disciplinarian, we tended to be semi relaxed when he was not home, but the moment he walked through the door all three of us knew we were at that moment onwards going to be living on tenterhooks and that the way forwards was to imagine the pathways were made of eggshell. If he was in a good mood, then great, yet if he was not, then – well l am sure you know the answer.
When living at home l have to concede to the fact that l actually believed l was ill, not physically, but sadly mentally, there was just so much going on all at once it became over whelming too frequently. I couldn’t cope; l used to use my imagination to escape into constantly and at times had to develop worlds of pretence and fantasy to survive. In my own bubble worlds, life was easier, not so fast paced and not so damned noisy; my worlds were much cleaner and were not dirtied up by confrontations and conflict.
I was very eager to leave home, and one of my new founded hobbies which was ‘work’ opened the doorway for that to occur. Having said that l worried about my Mothers’ health and sanity, but more importantly, l also had to worry about my own mental health first. I had to leave the home, because if l failed to do so, l honestly believed l would end up hating my parents instead of loving them as l did albeit at times that too was strained.
With my work mask l could blot out everything, l could just concentrate on the routines and the patterns and the logic; l hid my emotions and bottled them allowing them freedom only occasionally. It was not that l was not able to love or care for people, l could still do that, but it was much easier than dwelling on things. Over time until l think somewhere in my forties [after the diagnosis in truth] l opened up those hidden chapters, those darkened vaults and readdressed them, and yet from certain age points l simply could not pull back, they were under almost pentagon security and still they remain there till this day, unattainable and inaccessible to even their owner.
In my early twenties l experienced grief of major proportions for the first time in my life, l lost a partner and a son to a tragedy that l will not discuss any further as it still causes me pain. It took me a great many years to let go. I make mention to this now, principally because l did not wish for this to taint the reader and take them away from the Aspergers. Doctors for many years diagnosed stress and a form of post traumatic to me, and l can not deny their diagnosis of that in me, it was true, l could never forgive me even though l was not to blame. But as they say, it is very hard to forgive yourself. This incident hit me very hard in life, and from this in addition to my family life, an ever increasing stress load building as well as everyday confusions, it took me down a very rocky path. I took many chances with my life and entered a very dark phase filled with reemerging self harm of many types and suicide attempts.
I knew l was ill, l knew it. I was not as convinced as the doctors were that l was mentally ill, but stress would walk hand in hand with me from that time onwards and for a very long time indeed. I was not entirely different to my fellow man but l just felt that l did not fit in and had to either wear countless masks or simply pretend that everything was ok. During these times, l always maintained that everything was all ok, and that l had no troubles.
For many years l was not in regular contact with either of my parents and they thought l was dead, if not for the occasional communication from me l believe they would have called up a search, but l did just manage to break that situation occurring by the odd telephone call here and there. During these years l was engaged in various sexual encounters, running my own enterprises, working for others as well as homeless a couple of times and living in abandoned houses as a squatter. I ran with some ugly sorts as friends, the unsavory types my Mother had warned me of when younger, l never resorted to serious crime [albeit one error], but did come to experiment in light drug use [hemp and skunk] and had opened up my taste buds to alcohol.
Looking back it is little wonder that l actually hit my thirtieth birthday, for by that time l was so very sad and alone, never lonely but alone, had attempted suicide more times than l care to mention and had become a self harmer albeit, never as aggravated as it was to become when married, but it had started and it was something l resorted to when at heightened stress.
I had a small physical breakdown before l had hit thirty, where l had been living in Kent and recall calling my Mother to say that l was ill, could she help? My parents had separated that year apparently and were in the procedures of their divorce, but had joined forces and come down to and fetch me. Once back at the family home, l simply collapsed back in my old bedroom and fell asleep for two days through exhaustion.
A doctor had visited during this time, but l do not remember his visit, and a day later l was arrested for fraud, the day after that l broke down, became disorientated, could not remember my way home, eventually got back around 3am Mumbling about devils and what not to a somewhat alarmed Mother. I only have flash images of the next day or so, and what follows is her description of events.
I was taken by my Mother in a taxi to Chertsey hospital, the Abraham Cowley Unit for adults with mental health problems, and whilst waiting in a small anti room suddenly exploded, a nearby gurney was picked up and hurled by me into the wall and l started to scream, rant and rave. Orderlies had run in and whisked my Mother off and a doctor had demanded that my Mother authorize my sectioning, she refused and l was booked in voluntarily.
I have vague memories of that period of time, a few outbursts which made doctors and psyches believe l warranted a much longer stay, hugely medicated and a brain that started to slow down, long dazed walks in the grounds and really struggling to know who l was. Much later l was to learn that my Mother had been informed that her son was a schizophrenic with a serious personality disorder that did not feel that he fitted into society and that for that matter was not fit to be released back into society as he was a danger to himself and potentially others.
Very troubled times indeed, there was no talk of Aspergers during my discussions with doctors, they talked of schizophrenia, they talked of delusions, they talked of temporary madness and we talked of my life growing up with my Father, and if anything he was awarded all the credit of the day. The result was that my Father’s behaviours and actions were the reasons l was as l was. [Again looking back very ironic]
They wanted me to stay for six weeks plus, and whilst it had been my Mother who booked me in, it was on the one visit from my Father that l was booked out and found myself way back down in Dover with ‘friends’ or a girlfriend or something, l am none too sure. I also had a criminal record at that point, a business l had been running had gone sour and l had been manipulated by another so called friend to help me with my crumbling finances, and to use my cheque book as a means of buying security equipment which l could then sell on at a greater profit, except he ran off with the goods and l got left with the bank chasing me for fraud, ‘insufficient’ funds to cover the purchase. So l was awarded twelve months community service which l carried out in Ramsgate. Since then l have never broken the law and thankfully apart from a few misunderstandings have never had any serious run ins with the law again, my record now expunged by a good many years, yet again another shameful experience.
If l am to be honest after that l have no real recollection of my life and how l lived for a good few years, it’s blank, but as l am writing here today, l obviously survived. A few flashing and passing images are all that remain for me from that time frame. I had again little to do with my parents, until l moved to London and took up my job with High & Mighty. I was headhunted out of River Island for the post and l was involved in a relationship for a while, and l know that my Father met that woman once, because he flirted outrageously with her and made a pass at her, but also that he told her l was mentally insane and had been for years and that l was no good.
Chapter 16 – Ep 28 – Soon