Dancing in the Grey – Life with my Asperger’s – E5

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Dancing in the Grey – Life with my Asperger’s

© Rory Matier 2015

Note …

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.”

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Chapter 4 – Ep 5

Dumb Jokes and Boring Stories

Bitter Sweet Flaws

 
I have lived with the Aspergic inclination all of my life,
Gifted at birth, it has caused me nothing but strife!
Diagnosed fully only but a few years ago,
Armed with the insight, it gave me more of ‘the know’!
For it alleviated much of my life’s’ awkward puzzle,
Realizing my brain always looked at a loaded gun muzzle!

As a child l had always been perceived as ‘odd’ or a geek!
Worst case, l was considered some kind of strange freak!
Problem was, back in those days, it was not recognized,
Erratic behaviour was medically resolved by being analyzed!
“Your child is simply hyperactive, don’t be alarmed’
And at that most parents ‘yes’ were stressed, but charmed!

Their child was simply being overzealous, but was okay!
Opinions medically have moved on since those days!
Now children are seen to be part of the spectrum,
And ADHD is to blame for being a pain in the rectum!
However, now we have many forty something’s awakening!
Feeling completely disorientated, and full of confused pain,

Like what the hell is going on with my life right now?
Bizarre things are mentally shaping beneath my brow!
Acknowledged, as Aspergic is all well and good!
Exception being that we are horribly misunderstood,
Many continue on with their lives simply thinking,
That it will ‘go away’ if l keep on blinking!

However those of us, higher on the Autistic scale,
Intelligently are not so keen to quickly bail,
We need to know, understand and even obsess,
On the culprit that was always perceived as stress!
Asperger’s Syndrome has so many special benefits,
But is an intellectual enemy, like an arrogant ad blitz!

So treated as such it is indeed a worthy opponent,
And is so complex, with its many components,
That to simply walk away, and not delve and explore,
Is ‘not acceptable‘, soon this problem will be too hard to ignore!
Affecting our lives so significantly, and without grace,
Hindering relationships, enjoyment and the work place!

I am slowly coming to terms with being classed as eccentric!
As well as many oft seeing me as egocentric!
That l have taken to studying it fully, and expressing
In poetical form emotions that for year’s l have suppressed!
But l cannot deny that it has taken its’ toll upon me,
And many a time deprives me of being blissfully happy,

l am supposedly an above average intelligent man!
Means nothing when you are struggling with inward pain,
Of not knowing who you are, or what or even where!
You are on the path of life, or finding a woman to care!
With all the attributes of this ‘gift’ there is no get out clause,
As such, it means life is full of bittersweet flaws!

Don’t read this as me being overly bitter,
I can accept that life for many is also a right shitter,
We are also said to suffer from a lack of empathy,
So l don’t need anyone’s’ protective sympathy,
I am about as happy as l guess l can be!
But would be happier, if finally l could see the real me!

© Rory Matier 2010

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Dumb Jokes and Boring Stories

Aspergers – A Different Way of Life

Since 2007, l have sifted through mountains of articles, researched till l could no longer keep my eyes open and read many books on the subject of Aspergers but now l have slowed my study of the disorder, l have come to terms with the presence, l accept that l will never be a full on Neuro, and to be honest l have no wish to be, NeuroAspie status is more than ample. When l started the very first book, l had not read any of the books available on the subject; l was purely guided by my own mind and not outside influences, just gut instinct and the rawest of emotions which were coursing through me at the speed of light at the time.

There are some very good books out there in the market today, my partner is also very well read on the subject, indeed we are both passionate about Autism awareness as a topic.

When she and l first began talking, l was very negative about my abilities to function ever again in a relationship of any sort, in truth was not that confident about me as a person. I did not want a relationship, and thought l was only suitable for friendship perhaps maybe. And so we became friends, but as was in Suzanne’s nature, she wanted to know everything about Aspergers as a disorder if she was to be a true friend to me. I challenged her to research ASD, and said that if any woman took the time to read up about it and still wanted to know me, then that was the woman for me. I had said it in some humour and never thought she would actually perform the task!  At that point in my life, two relationships had failed on me with Aspergers being used against me like a weapon. My ex wife, like me who had not even known of the presence of the disorder but just found me extremely odd in behaviour and emotion, and my partner previous to Suzanne had known about it, but used the disorder ‘as’ a reason to break up with me, as in her eyes l was mentally ill.

I had painted a very dark and morbid painting of who l believed me to be, because of these two women and several years of living as a hermit.

I was only just starting to come to terms with Aspergers, not proudly aware as l am today, not as confused for l knew it was who l was, but l had lost a lot of my younger years confidence, was nervous around women on a serious level and had become fearful that l was turning into my Father. I simply could not picture the possibility of ever experiencing a loving, enjoyable or fulfilling relationship again. She even took a copy of the first finished book with her for her research into me, a bold and brave move l thought, as it painted a very darkened portrait of the man she wanted to get to know! In truth, the fact that she was reading that manuscript, even today fills me with awe.

I can be incredibly verbose and that book was verbosity itself with a giant capital V so l never expected her to chomp her way through the countless pages, and if she succeeded at that, l was convinced that the morbidity would scare her off. I remember saying to her ‘think like an Aspie, but don’t become one!’ But Suzanne, can be, like me, doggedly persistent – not only did she read it from start to finish, but she was not put off by my personality portrayed in the book! More importantly, she still wanted to get to know me – she said she wanted me to live again and she wanted to be the person to show me how to achieve that!

Let me tell you what an amazing feeling that was, it was exhilarating!  Someone believed in me again, l was still a little wary admittedly and at first l did not believe what l was hearing, but slowly she and l became friends and within six months we were a couple. But not like normal couples, l was determined to not make the mistakes l had made before, and was constant in my need and desire for us to ‘get to know each other’ properly. I wanted above everything else to be friends first.

During our early days as friends, we were reading books on the disorder. She did so to understand a broader picture; l did so because l had never read any books on the subject before meeting her. Of the many l did read, one stuck with me as it was very close to home to my experiences with my Father, and it was after reading that, l decided to rewrite my original book as it was quite simply way too dark.  ‘Alone Together’: Making an Asperger Marriage work’ by Katrin Bentley, made me think back to my own growing up years with my own Mother and Father, and knowing what l do now, that despite his constant denials at having the disorder my Father is an Aspergian, and that my Mother for all her wiles and ways must have had remarkable tolerance for the man she loved. So many of the Alone Together author’s husbands’ traits l could see in my Father, and saw that both the author and my Mother had probably had symptoms of CADD.

Would a diagnosis of AS have helped either of my parents?

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No, l think not, unlike Katrins’ husband, my Father was an aggressive man, the violence displayed and acted out upon my Mother by him was long in the tooth, and his many quirky traits in addition to Aspergers were too much eventually for my Mother to continue living with. She stayed in principal for the children, my Sister and l.  But would a diagnosis have helped my Father? No, l don’t think so either sadly, he was too old fashioned and would have criticised those that awarded him that title with comments of weakness. Ironically l have to ask myself also, if my ex wife and l had known of the AS diagnosis would this too have helped our own marriage? No, we were together for some 14 years, and that was a partnership in all honesty that should never have started in the first place. But l can also recognise now, that she also clearly showed signs of CADD, and that does not exactly warm my cockles. It is perhaps balanced out by the fact that we were simply not ideally matched, but had fallen into the matrimonial routine that so many couples experience, Aspie or not.

As it was the AS diagnosis came much later for me, and l was already in the throes of my divorce proceedings when it did arrive, and was involved with another who although knew what my ex wife did not in so far as the presence of the disorder, but had managed to wheedle her way into my life through careful manipulations via another form.. Both my marriage and my next relationship ended under hostile and acrimonious tidings, and as such left me feeling emotionally drained of all motivations and energy, with a distinct cynicism towards any future relationships of loving emotion.

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My Dear Friend,

I have come to realise that you have been attempting to contact me, and are concerned at my lack of presence within the usual haunts. Don’t panic, sadly this lack of interaction comes with my territory, and Aspergically l am just off on one of my complexity jaunts! Looking into this thing you lot refer to as ‘sociality’, this is always a bit of a mind boggle for me, as you know, and this is why l am simply not available to you so freely, for the research into this abnormality must be thorough.

It is not that l don’t try to understand you, seriously l am not lying its true, but there are just so many things l don’t fully get, filling me with some confusion and regret. You see, it’s hard for me to regulate, emotions and l cannot demonstrate, properly how it is l truly feel, it’s either nothing, not enough or with way too much zeal! I am happy, yet not and always in search, of the answers l seek to find solace in the purge, can be bored and not bored in the same breath, and not lonely, but so lonely, no doubt with me till death. Content l can be on my own, yet miserable too because at times l am alone, hard to explain this to you, you see, it’s just not easy being comfortable as me …  don’t like to grumble and complain aloud, being Aspergic and apparently l am endowed, higher intelligence and all things logical, gifted to me from birth, quite comical!

Yet l can laugh, and not enjoy the fullest of mirth!

Because of this supposedly blessed dearth, disorderly yet highly functioning is strange, for there is no denying the mental strain, it places upon ones logical frame, configuring the pathway and not passing blame, for technically there is none to award, upon accidental and potential genetical fraud, sadly just one of those things, l am just the resulting offspring. But you asked how you could help me, and l am trying to answer you see, friendship is something l so desperately seek, yet know not how to simply keep, if they are not there, within my sight, just don’t worry do l, it’s all right, for l simply move on, as if they never were …

… Which is probably not the best answer, but truth is all that is being told, which is why it’s hard for me to hold, control upon the social intentions of some, too much hard work, and very little fun. Many see me as selfish, or within my own stance, because they don’t get to know me, and trust one glance, it’s not just me that is in the wrong, just l don’t sit easily within the throng, never quite sure how it is l should react, and not one of my talents is the ability to interact!

Perhaps it is easier for me to simply say, offer me patience and understanding anyway, l am not that bad and that‘s a fact, after all it is only misinterpretation suggesting l lack tact, just be you, and try not to become frustrated, when l am good, your efforts are never wasted ‘tis similar to being stuck within a continuous dream, not knowing if one fits into the overall scheme, chronologically we look as old as we are supposed to, then confusion settles in and everything goes askew! Mentally and emotionally we start to fall apart, struggling to understand and even where to start! Others looking in or from afar, stressed to the hilt with our antics, thinking we are bizarre, failing to comprehend our very own concerns, simply lost are we, knowing there is no return, relationships turning from joyousness to disaster, unable to remedy simply with a plaster!

Higher in the intellect and intelligence capacity, than most credit us with due to their stupidity! Lack of understanding from those not in the know, attaching a stigma to us and placing us up on the plateau, of ’best left alone’ and ’leaving them to it’ making us angry, having to put up with the shit! Holding many faces within one personality is not a catwalk life for our complex mentality, childishly earthbound we are forever and a day, liking it or not, sadly we have no say! Predetermined like this from before our birth is like God sharing some humourless mirth!  Like you in so many ways, yet never the same, constantly lost within the burning flames, of the darkness that riddles our minds, genetically created from before our starting time, blind complexity that never allows us an inner peace, and continually to get worse and to never cease!

Socially and emotionally delayed in our maturity, is a testing time for us all continually, not always easy being mentally aged ten, once was enough, but over and over again!!? Can be such a seriously stressing strain, upon out complex filled brain! if it was not so damningly serious, l would laugh out loud deliriously, all day long and every day for the rest of my life, problem is that it is a life filled with strife! Constantly wandering amongst fragments, of ago, lost in solitude, making so sense! Tormented by myself in the continued search, for answers as to the, what’s and why of this dreaded scourge!

Sure, there are times when l feel gifted, but of late, this is replaced with the title of misfit! Never quite fitting into the scheme of things, and always lost in complexity of misgiving!

I hope this finds you well as usual, and now you will understand, why l am not there, but l simply must puzzle out this doodle, and hope that my answer did so share, the mind shattering confusions l am under of late, but please panic not, l will of course return, so you need not become upset and irate, l just need to understand more in order to learn!

Aspergically Yours

May 2009/11

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This rhyme [in letter form]  is written in the way that l think, so where as half a dozen verses may have been sufficient to get the message across, it shows quite clearly how we’ very much like’ to get the point across so that observers understand what it is we mean. Or as it would be interpreted by the Neurotypical writer, we tend to be verbose, or in even simpler layman terms, we use too many words.

At school l was no different, l could use 15 words to describe what someone else might do in 7, it can be very hard for me to control, although l am getting better. A simple phrase can be turned into a sentence of long windedness. Ask me a small question and l will provide you with a lengthy answer making l feel sure the asker wishing to God, they had never asked in the first place!  And in many ways that is what Aspies are like, the good many l have met are very similar, it is not a specific deliberation to dazzle you with our intellect, more a case of – if we cover all bases – then you will have your answer albeit a somewhat comprehensive one at that.

There are many quirks or oddities if you wish found in our behaviour. We like details and lots of them, our average day is made up of thousands of details, it is not that the NT is unable to see the same details more of a case of they tend to filter them out, dilute their picture down or concentrate upon what they consider is important or sufficient to get them from A-B-C, where as we tend to see with a clarity the same pathway  but it resembles more of an A-A1-A2-B-B1 – you get the picture. More information is simply Black and White, less information dances in the grey and also opens up way too many new questions, so if we provide a very detailed answer then why the need for other questions? 

I get very irked at times, when l explain in a detailed manner and some come back and again ask me a question that there is no need to ask because l have already answered that in the initial answer – but alas many people do not listen, they hear the bits they wanted to hear in the first place and have already filtered out the rubbish bits as they class it, only to then think of a second question not realising that l have answered that question already and quite possibly three or four premeditated questions in my initial long winded reply.  Alongside my irked behaviour it becomes frustrating, when l then listen to their questions and think ‘WTF!? Were you not listening?’  Answering the way l do defines clarity and logic, l have in many cases cleared their pathway of further questions, so what more does one need to know? Their response is that l provided way too much information for them to deal with and all they wanted was a basic answer, my mental note at that point is then buy a dictionary, a thesaurus or hey l know, google the damn answers yourselves then.

You can see, how it could be perceived that people think l am a know it all?

The biggest problem with many NT’s is that sadly they do not think the way l do or we do, not saying l am genius, far from it, but they have come to rely on a world that needs logic but they only get along with a very basic form of societal thought. In many cases they simply think like the herd, when they have the capabilities to think as an independent.  It is true, Aspies think differently, but if NT’s were to just use an ounce of their untapped brain resources at times they too would see very clearly also. However because they run with the herds of society they have forgotten how to utilise everything at their disposal. We see this very clearly with technology, for me l use a desk top computer, l own a very basic mobile phone – that is full extent of my gadgetry [although l have a Kindle on loan]. Not all Aspies are the same as me and some are very technical indeed, true geeks in my eyes. But l can survive on just my few items.

Most of the NT society does not understand, comprehend or perhaps even care that they are brainwashed by their own society’s technology. They take on board all the ‘must have’ advertising, marketing and promotions advertised by manufacturers, they simply ‘HAVE to HAVE’ the latest in mobile phones and a trillion useless applications, computers, laptops, iPods, notepads – anything that makes their lives easier, everything that thinks for them. Children and adults these days use abbreviations, predict text etc, and in so doing rape the English language and forget how to actually speak. However when questioned on why they have all these ‘things’ the answer is profound, ‘well it’s what everyone else has and needs, innit?’

Oh right silly me, it all comes down to ‘innit’, perhaps l should have titled the book Innit, and in so doing could have captured a whole nation with my new bestseller, never mind the market l am targeting. I am not saying l am not slightly guilty in this area also, but not to the same extent, l am a modern thinker but set in old fashioned ways maybe. I use predict text, but l know how to spell and l understand basic grammar in the first place, l use certain shortened words such as OK instead of Okay, but l see people use frequently KK, and l think so you are saying okay twice? It baffles me when many people use ‘yeh’ and yet if they switched the h for the s, it would be correct, or even if they spelled the word ‘yeah’ slang perhaps but correct.  The problem is that our nations of young are growing up in a world where it appears that yesterday’s teachings and learning’s are forgotten, or maybe it is just laziness.

I have occasion to use a kindle as said, l still prefer both hard and paperbacks, as l like the feel of the volume in my hands. People use ‘gadgets’ to help them think more clearly, l don’t need specific help thinking clearly, l sometimes need something to help me stop thinking. I over think, where as many need help thinking?

I was once asked what it was like to be me. What a bizarre question l thought. Did l see the world differently? And l had to stop and think, did l? I see the world the same as everyone else, perhaps with a bit more definition, l see the world logically, not so emotionally, of course l have emotions and am not without empathy to most situations, l was a confused NT long before a confused Aspie after all.  Of the few fellow Aspies l have met and know, they see the world pretty much the same as l do, it is only our thinking in many cases which separates us from everyone else. And in some cases each other also!

There is a lot of literature out there for the likes of youngsters, teenagers and young adults that enables parents to understand more [hopefully] into the minds of their children, yet what is sadly lacking is qualitable information concerning the aging disorder itself. For let’s us be honest, not many people really want to know about the seriously damaging qualities and attributes of a disorder. So the literature available concentrates upon the young of today and the elderly of tomorrow, but not on the poor sods who are stuck in the middle, in the limbo lands of the lost where technically l sat for very long periods myself, before l was able to comprehend the realities of this disorder.

Prior to the recognition or diagnosis l was just in a constant flurry of confusion, l did my best to survive day to day in work, friendships, relationships and in truth anything that contained ‘people’, anything where a requirement of social communication and interaction was needed. Luckily, when younger l had pools of abundant energy both mentally and physically, my capacity for taking on damage for want of a better word was higher than it was as l aged.

I became engrossed with work, and used that as a form of escapism from the pressures l felt with everything else going on around me. As l got older, those pools and the capacity shrank, but l was establishing my life style to suit my needs and requirements for existing. Setting up permanent routines, structures and patterns and taking time out when everything became too much helped me, but was not appreciated by those around me, notably my ex wife. But if l kept my mind busy and absorbed with information gathering or ‘gaming’ l was able to ignore the build ups and relax.

If l could not exorcise the demons within, l would find myself constantly not just tired but mentally exhausted from exertions received when dealing with people. During my marriage it got to the point that l at times literally simply could not function if l had had too much ‘people traffic’ in my day, and time out or as l came to understand it, ‘downtime’ became more and more frequent. Stress for me was a constant companion, we walked hand in hand whether l wanted it beside me or not, and anger, l had so much frustration that it led to volcanic anger bursts! I am not going to say that come the diagnosis this changed overnight, but leading to the recognition, life was simply not easy.

I remember very clearly the day l awoke and felt so very different, it was in my fortieth year, l just knew that whilst l was stressed this time something else was afoot, stress but not stress, very difficult to explain in truth. It was like l felt as if my identity was falling apart, l was at that point waking up almost daily not knowing who l was, and lay in bed trying to remember my name, my age, my address and more importantly, where was l supposed to be in my life.

Marriage to the woman l was with felt wrong, not just like opposites to each other [which we were], but that l was not living my life, but the life she wanted me to live to ‘fit in’. Everything was always about fitting in, to her circle of friends, her family, her way of life – everything! It was wrong for me to simply be me, l was an us and should behave like l was an us, not just a so called selfish him, that needed time out, became immensely absorbed in his business, his hobbies …

Looking back l can say that of the Aspies l have met since l became more aware, they all tell me of similar feelings, emotions and stories. Their lives filled with stress and disorientation. A life of constant confusion as to who they were, upset daily  because they felt as if they had a mental blockage, a strange sense that something was …simply … not … right!

Many Aspies l know are not diagnosed and don’t ever wish to be, some l have met have said that they fear the process of achieving a diagnosis, as it is damningly awkward in the UK. It is hard enough finding support, sometimes just from your family. Because of poor national awareness concerning this disorder, Autism and a host of other mental health issues, many view the whole procedure as introducing an unwanted enigma into their lives. The young of today have a slightly easier time of receiving a diagnosis; with persistent and caring parents, but l personally do not feel as if there is sufficient aid and support to those in the older bracket. The phrase of ‘well you have got this far in life, why let it worry you?’ you know, l just feel is somewhat insulting to our intelligence.

Parents are awarded with a wealth of new and increasing knowledge on how they can help their little Aspies get through life or manage with the step by step transition processes, so that they too can become as best described as normal as possible to their Neurotypical counterparts. They will learn how to best cope with life, but it would appear that by the 25-30 marker age group, that this help is reduced. I wonder why? Perhaps it is quite simply because there is very little information concerning the disorder itself above that age bracket?

You Have Got This Far, Why worry about it?

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Relatively insulting a statement if you stop and wonder about it, receiving the diagnosis turns your life around literally, hardly simple. Sure AS is not Cancer nor Aids or any other life threatening disease that is going to kill you – or is it? What happens when the pressure of the disorder consumes you or over whelms you to the point of suicidal thought? And maybe you might take your life, sure the disorder has not killed you directly, and you have taken your life by your own hand, but if you had the help of understanding how to cope, would you become remotely hell-bent on suicide in the first place? It is a documented fact that those who are not unfamiliar with depression and self harm, are in the higher bracket of actual suicide at their own hands. Much of this is placed upon unhappiness, the inability to cope, depression, confusion, being unstable of the mind. Medically speaking, cures are being investigated and researched thoroughly for the likes of Cancer and Aids, yet there is no known cure for this disease of the mind. It is sometimes called and known as the Lonely Disease.

With my previous history, of both a constant form of sadness and melancholy l find this realisation quite sad. For many years l looked deep into the eyes of damnation, and walked a lonely path of continued unanswered questioning. I used to wonder if that perhaps the screaming within would finally force my hand into taking my own life. But you may wonder what this screaming is; l sometimes will refer to in this book? It can be hard to describe to readers who may never have encountered seriously detrimental and over whelming stress loads. Imagine a giant mechanised wheel that has gained a sudden momentum and the breaks have failed, so you are left with a loud grinding whining noise as they try to take control of the mechanism again.

Created by the mind in over drive, a thousand thoughts all rolling into one, when you literally have lost the ability to concentrate, relaxation at this point is a thing of the past. You can almost hear at times the whirring and clicking of the brain trying to make sense of the commotion! Admittedly l used to suffer bouts of this behaviour mostly when l was living the life of pretence, wearing numerous masks to cope with the insanity of society as l saw it through my own eyes. In order to combat the problems l found myself retreating backwards in so far as where l lived, limiting my interactions with people, how l operated and so on. I started to live the life of a recluse as this made everything so much easier.

The problem was this lifestyle also made things harder on a different level. For l personally hold the opinion now, that whilst you can live your life like some religious monk on sabbatical, it only aids the disorders’ craving for isolation, and as such takes you away from the interaction that forms an important part to living. When l lived in the caravan, more or less in the middle of nowhere, with just my dogs and the landlords’ horses for company, l did not have any constant or regular flow of visitors, life could be uncannily quiet at times, so whilst l was out of the way concerning the hustle and bustle of society, l was in truth too far detached from normalcy!

I have never been one that needs the attention nor sympathies of others, l never get lonely, sure l can be alone, but l have no overwhelming desire to be with other people, like so many others do. I have friends who shudder at the prospect of spending too much time in their own company, of not speaking to another human being not just all day, but perhaps all week. And yet when l lived my life like this, it never bothered me. In fact it probably bothered my friends and family more than it did me.

Living a solitary life never really concerned me; it did award and offer me a great deal of personal satisfaction and peace. I had my two dogs, l had space around me, and l could just get on with my life.  I had my computer and an Internet connection, so in truth when l wanted to socialise l could do so online. I did know that my life was not brilliant, but l had no real expectations and my confidence was so low l thought it mattered not what happened to me. However the moment l entered society again, my stress levels would start to build, l would hyperventilate, my heart would race and l would start to shake involuntarily especially if in a crowded place. If the traffic was lower in an open space, l could cope more effectively.

It was not a case of disliking people, although l do openly admit even these days that they are not my favourite species, but back then l was just filled with dread on some outings. Eventually it got to the point that if l needed shopping and the local village shop did not have it, and then l simply shopped online to avoid all contact with them. It got to the point that l became so afraid of actually meeting people that any venturing outside simply ceased. The disorder had won, it had convinced me that being with people was just bad news. I had gone past the point of eccentricity for l entered the realms of extreme paranoia. My lifestyle for almost 18 months was a disaster, l would walk my dogs, perform basic living requirements, work with the horses, write the book and game online, l slept for around 3 hours per day and started to look like a zombie. I lost weight, started to become ill and seriously started to contemplate suicide. It was not a healthy way of life.

A friend of mine once described the situation as she saw it through her eyes:

“The way I see your Aspergers is that you are in an abusive relationship with ‘her’. You are the battered spouse, she is the sadistic wife and she has beaten you down into a corner where you have little notion of how to escape. ‘She’ has isolated you from friends, family and society to such an extent she now is almost all you have, apart from your dogs, who you love more than yourself and more than any other living thing, and me, who can only be there for you via electronic means as my life and yours conspires to keep us apart. I am unable to move up there, you are unable and unwilling to move down here, so it is you and the dogs. ‘She’ tells you you’re better off being rejected from the normality’s of society, and that your life is worthless and without merit. You reject the notion of living as it isn’t something you want, or see the point for! You hate yourself currently equal to how much you love the dogs or me, remove one or more of us (or at least the dogs, you wouldn’t kill yourself over me I know that much) and the balance becomes too unequal to support what’s left of your will to live. Your ‘being arsed’ to fight it has gone, you are waiting to be allowed to die.

Yes you are ill.

But I love you dearly and wish it wasn’t so, and wish that wishing was enough as it breaks my heart watching you prepare so calmly for a death that is of your own choice”.

J/C 2011

Her husband is an Aspergian, her daughter diagnosed bi-polar and their young son is more than likely ADHD and Aspergic, she is the only Neurotypical in that family and l believe these days she too was suffering with the symptoms of CADD. She struggled to cope with the presence of so much of the spectrum, to be honest who wouldn’t; l think l might even have had problems there. She knows of the dark side to AS and how it can seriously affect those with the disorders.

Those days l tend to not think on for too long, for back then l literally just survived, lost all interest in life and it was only my dogs and my book which kept me going, l had detached from life itself. I have the ability to detach from situations when everything becomes too much, a sort of active shut off mode. It is strange to revisit that time in my life – for even now – l too shudder – at just how close l was and had become to finishing my life. I seriously struggled with Aspergers as a disorder back then, l could not talk to many people about it, my family were in denial to my problems, my friends were unsure how to assist and to make matters worse l lived under the dictatorship of my landlords who bullied and manipulated me with as much evil as they could. It was a very brutal time for me and l did not know where to turn for support.

I struggled on.

I came to believe that the life l was leading was perfectly acceptable and as such l had no reason to reach out for help. I do not think for one moment, not once that l was the only one who had ever experienced a situation like this. It is probably more commonplace than many people know – the problem is that no one knows unless you know someone in it. As more and more information becomes available, it is now much easier for concerned parents to find help for their youngsters, but what of those born in the fifties and sixties, when information was not readily available? When Hans Asperger may have been easily mistaken for Hans Christian Anderson? What of us? What of our lives pre-recognition days? Oh yes, the arrival of the diagnosis awards some comfort but not a great deal. The young Aspies of today are being geared up to cope with tomorrow. But yesterdays’ Aspies are just being left to struggle on.

Did the diagnosis change me?

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The reader might be forgiven for thinking ‘well that is a silly question isn’t it?’ The answer is straight forwards – of course the diagnosis changed me. At first l was relieved to finally be awarded an answer that meant l was not going mad, and that as close as l had been to insanity or so l believed, it was only because of the development phases of the disorder.

I experienced a sense of profound relief, almost elation at first. This was then taken over by research, reading everything that was available, talking to those who had Aspergers or had Aspergic children.  Fascinated by results and seeing parts of the puzzle start to slot together. And finally being able to associate with other features, the recognition of both my Father and Grandfather as Aspies, as well as having a Mother who would quite readily claim the rights that her ex husband was one, but her son could not possibly be one at all, and that in truth sadly her son was just ill or that it was all in my head. To this day many years after my diagnosis, she still refers to me as ‘not being right or exaggerating the diagnosis!’

You start to step back and reformulate your memories and moments of discomfort in your past life, and suddenly the pieces start dropping into place again, and again and again. You look at your schooling and your report cards, your work experiences, your hobbies, your circle of friends or lack of them, your relationships, sexual encounters, as well as the years of being diagnosed for stress and depression. And you start to accept who you are, who you were, and sadly who you will now forever be.

Whilst there is elation at first, it is soon replaced with sadness as everything dawns into realisation. And with that comes the anger, the disappointments, the upsets, the memory of self harm, the nightmares, the black rages you experienced when screaming from within, the hurt and the pain.

The annoyance that for years you were misdiagnosed as being a stress head, misunderstood, treated like a fool by both peers and those in authorative positions. You suddenly realise that quite simply, you are just not who you thought you were. But also the more you not just research and as such understand, the more you come to accept what works for you and what does not. You now have several tools of the mind that can aid you in the reduction of stress, anxiety and depression. 

I am not going to write here that all of my depression suddenly vanished with the diagnosis, oh no far from it. I went through a very dark phase indeed, almost three years worth, in fact the first book of which this is being revised from, saw me during very depressing times indeed.  But those days are long gone; l did snap out of it, l came to accept who l was and what l had but it was indeed a perilous journey.

Suzanne tells me l have a lot to be proud of as l have achieved much since those darkened days and bottomless nights, many people including friends and family have no idea how much l have achieved personally, what they see is the aesthetics’ of my gains – the where l am now, and do not misunderstand me, l am only too well aware of these also. But l know how very close l came to my end, during the times of utter confusion.

She is of course right, but also for as much as l was adapting and evolving into who l am today, if not for her support, her unwavering belief and unfaltering love for me, l would not have regained my confidence as quickly as l have done over the last two years. My outlook would have improved with out her in my life, but as l have written and l always say, if you have the right person in your life, you can attain more goals and ambitions than without them. She helped me realise the importance of living again with Aspergers in my life.

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Chapter 5 – Ep 6 – Soon

Dancing in the Grey Directory

10 thoughts on “Dancing in the Grey – Life with my Asperger’s – E5

  1. So, with all of your research and experience, have you conquered Aspergers? I know my question may come across as straight to the point, but, I sometimes wonder if we fight who we are too much and we begin to hate ourselves for not being what we may think in the moment is what we ought to be?

    You’re a stand up guy Rory, and the conversation we had last week, really helped me to put things into perspective. I cannot thank you enough friend.

    1. You don’t conquer Asperger’s Poddy – you accept it and l don’t fight it, l never did.

      I didn’t know is more to the point until l was diagnosed with Asperger’s in 2009 that l was actually on the spectrum.

      Even then it wasn’t fighting it, it’ was learning how to live with it and accept it into my life.

      I can understand if l had been fighting it, like many do and pretend that everything is dandy – but l didn’t do that. Instead l stripped myself back to my core and got to grips with who l was. Acceptance is better, because with acceptance of your limits and boundaries you therefore know how to better yourself.

      If you fight it, you do yourself more harm.

      Many people refuse at times to seek help for things that might help them, through either ignorance or fear or see themselves as weak. My Father was on the spectrum without a shadow of a doubt – his refusal to accept it into his life ultimately destroyed him – he saw it as a flaw, a weakness – he thought by saying ‘Hey l have got this’ that people would think less of him, think him stupid and think him a weaker version of another human being so he didn’t fight it in the traditional sense, he chose to ignore it. In so doing and not even contemplating the possibility of it, he made himself vulnerable to his own problems.

      Towards the end of my father’s life l would have to say that for him, the Asperger’s awarded him nothing but loneliness – which could have been avoided if he had accepted the possibility that he was more like his son that he knew.

      1. Rory, it’s often sad that the apple rarely falls far from the tree. Since the apple would be nothing without the tree. Yet, the apple and the tree often cannot wait to separate themselves from each other.

  2. This was such an enlightening piece, Rory… Over the years I have had a few friends with Aspergers and the one quality that stands out for me above all others is their (sometimes brutal) honesty. I tend to take things very literally when people speak and I am always a little perplexed by people who say one thing but mean something else, so honesty is a trait I highly prize in a friend. I am so glad you found a partner who has embraced every single part of you. That is a gift…

    1. Hey Patti – thank you – l am sadly at times too honest, too brutal in that department – it’s got me into trouble before, because as you know we live in a world where upon people say they want hard core honesty but the reality is most people fear the truth, so they will accept lip service from even their closest allies.

      I am honest, l don’t like lying, l am not good at it, and l am unlucky so l get caught out, so learned long ago to just be honest whatever the consequences.

      Now when l admit to that – my lies are different to other peoples – my lying was mostly to myself – l pretended to be someone l wasn’t – but the biggest problem is is that before the Asperger’s diagnosis or even the bipolar one a couple of years previously to 2008, was l didn’t know what that truth was. In 2012 when l was finally diagnosed with PTSD l had run from that one for years as well. So it’s honesty all the way for me … it’s easier and it’s way, way easier being who we were born to be, instead of pretending to be someone we are not 🙂

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