Dancing in the Grey – Life with my Asperger’s
© Rory Matier 2015
Please Note this book wads 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 5 – Ep 8
Differing Shades of Grey
What time is it?
I made mention earlier to ‘Downtime, normal and uptime’, but what are they? To me they are modes of my personality, l have seen them referred to as ‘own time and quiet time’ in books that l have read. All in all, whatever you call them personally is quite irrelevant, for l think they all mean the same thing.
In the last fifteen years or so, l have become more aware of ‘Downtimes’, l think in truth l first noticed them during my marriage. When pressures built up and l had to retreat into my own world for periods of time to recover and rebuild my inner strength. It was during these quiet times that my ex wife first started to hurl insults at me for being selfish, and l could not offer her any reasons as to why l felt the need to take a back seat with the exception of ‘l feel drained when talking with people’. This was just seen as an easy excuse from me at not wanting to spend time with her friends and family, and to an extent this was not a falsehood, l was becoming irked by the closeness of her family, and vexed at the banality of her friends who would freely gossip and chat for hours about nothing. It bored me, and when present in their company would often fall asleep on any available furniture much to the horror of my ex wife who would consider it the height of rudeness, who would promptly prod me and pack me off with her friends’ children to keep me both awake and them occupied.
Admittedly l had more fun in the kids company in comparison to the parents! But the more l found myself having to be social for the sake of my ex wife and her leisure pursuits the more drained l became. This would then become a note of bother with her and when l had my breakdown the reasons for my quiet behaviour were blamed upon this. I had never carried any of my own friends into the marriage, truth be known l did not have any to bring in, the friends l had at that time were friends of hers only. I did have friendships with people older than myself or rather my own age bracket as there was a twelve year gap between my wife and l, she had no tolerance for them. And soon my friends went their own ways due to the ever widening gap l presented to them due to my retreating ways.
With the presence of the breakdown, my social life ceased to be, it was no great loss to me – l simply was not bothered as it meant that l had to concentrate for long hours at a time and this too was causing me certain fatigue. It was not long when l noticed the confusions which had been ever present were building up and l would go into long periods of blankness. Self harm had restarted [l am an ex cutter] and l used this to alleviate the pressures l felt within and also as a form of waking up.
I can not say that l ever truly felt lonely during this time, but the more l abstained from social life, the more my ex wife developed an independent life and as such l found l hardly had anyone to ever talk to, including her. If l attempted to do so, she would ‘pooh pooh’ me and simply get on with her own things. So l withdrew more into my own world and stayed there for days if not weeks at a time, occupying my own time.
When l started to recover from the ‘breakdown’, l think in truth a fair amount of emotional damage had been done and there was no turning back for us. By this time in addition to the comments of selfish with my time, l had other insults to deal with, emotionally retarded, child like and so on. By the time of my divorce l had started to recognise these ‘quiet times’ as a form of recuperation downtime, l needed them to recover from bouts of emotional stress or social activity. I would simply blank off, using only logic of sorts to get me through certain periods and not use any kind of emotion which aided me enormously when the world became too overwhelming.
I hardly ever feel the need for a serious downtime these days, although during my gaming time with WoW, l used to take frequent breaks from the circle of friends as it all just became too much. Back then, downtime was a great way of revitalising my equilibrium. As l said l have no real need for downtime currently, my partner understands me and is constantly on alert for any build up of stress, but my life is so very different today in comparison to the yesterdays. I take time as l need it, to basically relax into, l think the term for it, is enjoying the special interest or hobby.
And what did l think of during the downtimes? Truth be known – not a great deal, mostly nothing, or l used the time to simply switch off and become absorbed. After all, it was a recharge period. Life can be very stressful for Aspies, it is that simple. What the NT takes on board daily without a thought or care in the world, we simply do not have the able capacity, we need to retreat. Suzanne understands this part to my personality and more importantly respects it, no different to how l respect her own time out. It comes down to understanding your partners’ needs and of course communicating them.
As a matter of course l am never that eager to simply talk for the sake of it, many others – usually social people, love to talk, hear their own voices, like to be heard by others, they love talking to people. Even during an uptime period, l can talk to others freely, and when l get home l just take a small downtime to recover, but when a full downtime is present, l just need to escape, shut myself off from everything, listen to music, write, game whatever. My emotions are gone, l work in almost a logical overdrive. Anything, just as long as there are no people involved. Some may perceive this as a form of stress, it isn’t, it’s the complete and utter opposite for me, nor is it anger, frustration or any other emotion, it is simply a complete quiet time that is almost an urgent requirement like a gasping man for much needed air.
I remember once reading an article, that Aspergians become overwhelmed, senses exploding type of stuff by socialising, and for every hour of socialising [uptime] they needed an hour of downtime, this is true of me, some of my friends understand this very well. Yet the more social of my friends seriously struggle with this side to me. Those closest to me have described it like an emotional rollercoaster and l think they are pretty close in that description. It can not be easy for friends, family or even lovers to cope with this kind of ride.
Of the many comical elements to us, one is our ability to take things quite literally. I have been known many a time to take comments literally, such as comments like ‘hop over there’ have been met with some humour when l am hopping on one foot! Yet l find that this literal ability is really an interpretation. There are so many possibilities to each word and phrase we have in our language, and in many cases, it is really examples of poor grammar and sometimes a complete lack of definition in the first place. Okay, l admit that perhaps l do not always see what it is that people mean, but they could at least have the decency to fully explain what they do mean.
[An actual conversation 2010]
‘Sweep up and collect all the leaves!’ [Them]
Okay, how many? [Me]
Well the leaves [Them]
Sure, but which ones, there are leaves everywhere? [Me]
The ones on the yard [Them]
So all of them then, you want all the leaves swept and collected up? [Me]
Now this is a classic case, and has happened, l spent hours sweeping and collecting up all the leaves on the drive, for them to eventually appear and demand what the hell l was doing? My answer of picking up all the leaves was not taken down that well!!! And yet why not? They had requested all the leaves to be swept up and collected, why were they so angry now and looking at me like a fool? Apparently l was not using common sense?
Neurotypicals take it for granted that everybody else thinks the same way as them, Aspergians require clarity, so that misinformation and misunderstanding does not occur, for the love of God, it is after all only bloody logical!
Another conversation that springs to mind is when l was twelve my Father told me l had to learn to swear whilst at school in Australia to avoid bullying, it went something like this, and bare in mind this is two Aspies talking:
Father: In order to prevent them taking the piss, you must learn to retaliate and as you can not fight to save your life, you may as well swear back at them!’
Me: Right, so you are saying l should swear at them?
Me: So it’s now okay to swear?
Father: Yes at school.
Me: But not at home?
Father: No, because that is rude.
Me: But to swear in school is not rude?
Father: Yes it is rude, but you swear at them and not the teachers.
Me: Why would l swear at the teachers, do l swear at them if they swear at me?
Father: Do they swear at you?
Me: Some curse me, yes.
Father: Well NO, you can not swear at the teachers, just don’t let them curse you.
Me: How do l stop them from cursing me?
Father: Well for starters don’t swear at them.
Me: So what shall l say as in swear words?
Father: Well throw back what they throw at you.
Me: So shit, fuck and the C word are okay to use back?
Father: They use the C word?
Me: Yes, they do.
Father: Not the C word, but yes to fuck and shit. And if l ever even hear you using the C word in or out of school, l will kill you!
Me: But l have heard you use the C word at home?
Father: Do as l say and not as l do!!
That was the end to our conversation, you can see how confused l was by it l am sure, these days l do swear like a trooper.
There are just so many traits to us, and remember many of ‘us’ are unique profiles to begin with, so what l may not perform, some others undoubtedly will. My research into Aspergers revealed even more, a few here for you before l finalise this chapter.
Hard Pill to Swallow
I have a very strong sense of moral fibre in what is right and what is wrong, almost interpreted as a ‘righteousness’ and when at times this code is broken, l take it very badly indeed, it can take me years to recover, most Neuros would recover much quicker and move on with their lives. With me, it stays forever. My Father also has this ‘integrity’ but at times when growing up, l was left floundering at his premise of exercising his craft for what was righteous for him, most assuredly was not felt by either myself or my Mother.
I am often viewed by many as overly trusting, naïve and brutally honest, l don’t like to lie, and act in any dishonest manner. I am by no means addressing this with l have never done so, for sadly l have – and l have been caught out and paid the consequences of my actions. I have found out through misendeavour that not everybody views the way l view things the same. It will always l feel be a very grey issue for me.
Also, l have had ‘fascinations’ with ‘things’ which sad to say have got me into trouble countless times by an oft unforgiving society! Such as bright colours, stationary, sweets, biscuits, loud noises and louder music, toys, waistcoats and matching ties, socks, wallpaper, curtains, fabrics, masturbation, shiny posters, lights and ‘light’, counting trees, counting coloured cars, reading number plates and making words from them, routine, wheelchairs, breasts, clocks, falling over, falling into rivers, water, funny voices, noises and sounds, fire and burning things [not arson] and so on.
The reader should be able to grasp the jist of what l am saying, not all of these interests have landed me into hot waters per se, although many shopkeepers have gently pushed me away from their counters or said that they were closing early, which l found very strange that one time at 11am on a Saturday morning in London! Yet some, such as prolonged masturbation when l was very young led my parents to believe that l needed urgent medical treatment!.
Lack of moderation
I have a problem regulating my own personal temperature – mostly seen with heat. I know when l am too cold, but sometimes am unable to tell when l am too hot. Many a time l always feel the cold, and the only time l don’t is when it is blistering heat. Many people including Suzanne can get away with wearing less clothing on hot days. I have to be almost melting before l shed clothing. This might be psychosomatic on my part and stem from my days in the caravan, when irrelevant to spring or summer month’s l always felt cold, which in itself further stemmed from the long and brutal winters when l was constantly freezing. The fact is l am never truly sure when l am too warm. I used an electric blanket for years and it is only in the last twelve months l have stopped that practice as it used to drive Suzanne nuts! As l have aged l have got better, on hot days l now wear short sleeves, but it is very rare for me to wear shorts and if l do so, it is never in public!
One of my biggest failings or flaws if you prefer is the fact that we like to excel at what we do: we simply like definition, now this is perfectly acceptable behaviour if one is talking about a career and employment, for it shows dedication. It is also perfectly fine for activities, interests and hobbies – yet with Aspergers as the topic we are placed into a bit of a problem zone, for we will naturally read up about the disorder and then our brain will instruct us, that we must somehow ‘excel’ at this new passion! I feel sure that you can see the problems with this, there is no such thing as The Perfect Aspergic, for with the disorder usually there are other impairments or side dishes that travel with it, for you will not just be Aspergic.
People confuse me, mostly because of their inability to accept this disorder; many believe that because it is unseen, it is not something to be concerned with. Yet, l ask this of those same people: You cannot see God either, yet so many believe in this invisible entity which exists at the power of suggestion, and those who are enrolled in the schools of belief will blindly follow this unseen force, they will love and in the same breath fear it. Yet it cannot be seen to the naked eye either and this is not seen as strange behaviour?
Asperger Disorder or Syndrome or more commonly referred to as ‘AS’, is a pervasive developmental disorder, characterised by ‘significant difficulties in social interaction, along with restricted and repetitive patterns of behaviour and interests’, It is not a deadly disease, it is not contagious, it is a genetical thing, not down to bad parenting or the diet in which you eat, it causes no physical harm to outsiders it is simply put a learning and development disorder that affects people mostly men, but women too.
Most of the time, those affected can lead perfectly normal lives pending the severity of the disorder within them, but we are classed as highly functional, so why is there so much disdain for its presence? Is it fear that drives the Neurotypical into prejudice as with religion? Is this why we find ourselves victims of bullying throughout our lives, because we are perceived as being totally abnormal to your behaviour? I have been the victim of bullying for many years, and subjected as l have become older to not so much the physical aggressive streak of bullying, but the mental side, that makes so many peoples treat me differently.
There are many issues that confuddle the Aspie; we are either to the extreme or lack lustre, some are over confident, others lack this talent. We are either gullible or naïve or cynical and yet some of us are all three of the aforementioned. Some again are overly aggressive and others like me are whilst not totally submissive, we simply do not seek any conflict.
At times this very nature of not facing a head on head argument as much as it may be required of us will usually end up with us taking the blame onto ourselves when as is sometimes the case we were not guilty in the first place, but simply made to become the scapegoat! Other Aspergians are very positive or abysmally negative, too trusting or paranoid, communicative or hardly speaking, extremely open and honest or spookily private … there is no set pattern to label us completely for we could be all of these things as well as many in-between. I may not use all of the brain cells that the Neurotypical uses; l can not deny this fact. But l do believe that l either use my own cells correctly, or l use other cells which many others do not.
Of course this too comes with its own problems, such as l am at times completely mindless when it comes to my own health, my leg could be falling off, and unless l was completely hindered by that would just carry on regardless, yes l know a tad extreme as an example. But my philosophy has always been don’t go to the Doctor’s unless you are at deaths’ door. Which sadly l have been at times and still do not attend my health properly. I simply never know when a situation is really bad until usually too late.
In the Six
I have the ability to ‘detach’ very easily from many things, mostly people, including those close to me. Suzanne often asks how l can do this and often friends will say that they envy the ability. In truth l was never fully aware that l did detach, until it was pointed out to me by others, with straggling comments usually of l possessed no empathy which l have always taken some umbrage to. It is not that l don’t care nor have the ability to care – of course l bloody care about things – just not all the damn time! I was caught out by a friend who said a couple of things, 1] l reminded him of a third person shooter game as l always referred to myself especially when talking about business as a ‘we’ and 2], that ‘what the hell did l mean exactly when l used the term ‘in the six’, when describing people?”
These days detaching is a very simple affair almost as instantaneous as switching off a light switch – it can literally be that quick. Example would be – Suzanne has to on occasion go away to visit friends and make trips to the mainland, and she can be gone for as little as a couple of days to as long as a week. Do l miss her when she is gone? Of course l miss her, she is my partner and my friend, she is my lover and my confidant … but l am not nor have l ever been a clingy person, l do not need someone to hold my hand throughout my life. I am not a possessive person nor am l a jealous personality However whilst she is here and we are together under the same roof, she has my utmost attention span, if however she is not present, she is not in my attention span – she is not in my six.
In military slang terms the phrase ‘got your six’ means ‘got your back’, referring to the constant of keeping each other secured. For me l can only imagine l have used that term and hashed it for my own Aspie intelligence, but it is similar in a roundabout way. In so far of, if ‘you are not in my six’ then l do not need to look out for you, nor you l. In Suzanne’s case, as said it is not that l don’t miss her, it is just that she is not present and therefore l do not have to worry about her in the immediate sense, although my emotion for her wellbeing is still strong.
With other people and l guess to a certain degree some inanimate objects – for at times l see them with the same eyes anyway – this is how l can detach – if they are not there as in everyday, then l do not need to worry, think or even have their presence anywhere in my mind. After all, too much clutter is a nuisance. And so, when l have parted company with people, l place them out of my six – they simply no longer matter and my emotion is dead to them.
With friendships or people that no longer matter, this is fairly logical in the approach, it however can become confusing when these same people insist of continuing to communicate, even if in just trickles. But then long standing friendships are not my forte!
Just to Sleep
“Sleep, those little slice of death — how I loathe them.”
Edgar Allan Poe
Sleeping disorders have always plagued me, from as young as five, my Mother informed me that l was back then a very restless sleeper, long after the bedtime story had been read and l would still be awake for sometimes an hour if not two – in fact it was due to a sleeping disorder that l discovered at the age of around six or seven that Father Christmas did not actually exist and that it was my parents. I saw my parents on one Christmas Eve carrying presents, at the time they told me ‘To go back to sleep, and that they were his little helpers’. But the next day, that story did not sit so well with me, so l asked my Father outright and he told me the dreadful truth, but asked me to not say anything to my Sister to break the illusion for her. She found out at around twelve l think.
In my teens to early twenties l was a heavy sleeper and not restless nor did l snore, although l had to both physically and mentally tire myself out in order to achieve a good nights’ sleep which in essence was accomplished to satisfaction with about 4/5 hours. From my mid twenties to my mid forties l was plagued with insomnia, the times when no matter what l performed in the way of tasks during the day resulted in no sleeping routine what so ever and my days became no less than one continuous day. To endure one almost continuous day for twenty years is no easy task, let me tell you!
From my mid forties to present day, l am no longer a hard core insomniac although l still encounter problems with sleeping patterns. Now l am a heavy snorer which poses a problem for Suzanne who is an incredibly light sleeper and has problems sleeping as it is, but l am a very restless at night, my legs will constantly move around, l suffer from horrendous nightmares on a regular basis, and if not that, then l encounter the most lucid dreams possible.
I have more problems these days trying to calm my buzzing mind, for it is constantly whirring. Most men after sex can simply roll over and fall asleep, whilst l can achieve this occasionally, it is not a certainty. And if not leaving the bed to occupy my mind until it is tired, l remain awake for anything upwards of two hours until eventually my mind decides enough is enough and l fall asleep. The biggest problem for me is literally trying to stop the over thinking – l read somewhere recently that one of societies’ greatest addictions [in addition to the Internet] is thinking – which l find humorous in itself as so many people tend not to appear to think on many occasions, let alone become addicted to it! However, whilst that is all well and good as a premise, but l seriously struggle to tire my mind out full stop.
I constantly over analyse every situation, l have a constant stream of ideas, events, words and pictures in my mind. I might have a developing strategy ongoing for a game l am enjoying, as well as several ideas for any book ideas, thinking about business enterprises l might like to commence, sequences of numbers and crunching configurations and of course stressing that l sleep peacefully and quietly enough so as to not disturb my partner’s own sleep pattern.
Most morning’s l wake up feeling hellishly groggy, more tired than l was before l actually went to bed. I have tried sleeping tablets and yes they do knock me out, but that is one addiction l do not wish to entertain on a regular basis, and am left still trying to figure out anything that will award me a decent nights’ sleep. I have tried many different ways of inducing sleep quicker from reading to gaming to late night film watching and only to certain degrees do these assist, but l go through fads and phases with each of these. I love to read and write but not all the time, and yet some years l can go through six months on the trot polishing off 4-6 books a month with the remaining months perhaps only completing 3 books a month but only reading during the day. I tend to only enjoy watching films mid evening and not so much late evening,
l am not that keen on television and late night television even with the best service package can be droll. My partner has recently suggested yoga and meditation, so l will look into that sometime this year. Aye, tis not easy being an Aspie at times, it really isn’t!
A Personal Companion
Before the arrival of the personal computer, it was not that l was lost, but admittedly l did feel like l had found a long lost friend when l eventually got my own, we just seemed to click instantly on so many different levels. My focused attention, with a limited range is nowadays referred apparently as monotropism – tunnel vision. For me the computer is a world where l am able to manage control, whereas in the real world l am at a loss for it. Here l can sit in my favourite swivel chair comfortable without having to directly interact with people, not have to worry if l am reading them correctly. Here l can communicate, socialise and as the needs arise divulge my imagination to run wild in a virtual fantasy world.
The computer will always be an integral part of my life, but unlike the years before where as it was a big part of everyday life, now l am in a fulfilling relationship with a wonderful women who understands my desires, my needs for downtime and relaxation and comprehends my lack of social lustre with the outside world and as such knows why the computer is part and parcel of who l am. However upon revealing this, my requirement for what was once, is no longer as demanding. Yes l can spend an inordinate amount of time using this application, but trust me when l say – l spend less time on it now, then l did before.
Something which does confuse me, are the terms/labels High Functioning Autism and Low functioning Autism. As an Aspergian, l am supposed to be high functioning meaning that apart from not being a Neurotypical, l am about as high functioning to normality as l can be in comparison to a low functioning person with Autism?
I struggle to find literature on the aging side to the disorder, l mean am l going to be a bumbling fool when l am in my 90’s or functioning like l am now, just quirkier and more of a grumpy old git that l am now? I have read recently that some believe the disorder regresses slightly as you get to a certain age point in your life and then you can lead a life close to a Neuro for several decades, but as you age, the condition surfaces again and again you regress?
And it is this which confuses me, okay so l was a confused kid and undiagnosed, but having received my label, l could then look back and say ‘aha l was an Aspie then, that explains a hell of a lot!’ But the fact is, that when l hit my late teens and early twenties, my thirties and my forties to where l sit today in my early fifties, l have at no time been any less Aspie than l am today, and if anything at times if the environments were not ideal, l have become more Aspie in my mannerisms.
I think the terms High Low are confusing, and displaced. I am not a psychologist so l could be wrong, but l am an Aspergian, and l know my behaviour over the years, plus l know my personality so l can talk with some authority on it. There have been times when ‘yes’ l am more high functioning than others, but equally so, other times when l have been more of a low functioning Aspie. My life in the caravan for nearly four years would have me pegged as a low functioning Aspie for l was tremendously Aspergian during those days. To my days today with my partner Suzanne and her magical ways of balancing me, would see me clearly as highly functional with at times low functioning mannerisms and behaviour.
So for me, when l see and read others pout they are high functioning l often wonder if they are forgetting the low times or downtimes in their lives, or when life overwhelms them and need to take time out and not speak or be with people. High functioning is supposed to mean in my language that we are as close to NeuroAspie status as we can be – after all for most of us, our disorder is not visible is it?
I think that my Aspergers has as l have gotten older matured and it manifests itself sometimes in different ways, l am no less Aspergic than l was, but l have found different coping mechanisms. Today’s’ children when diagnosed receive a lot of intervention from medical science and so on. They have people around them to assist them with their own coping mechanisms and behaviour strategies, which were not available to people of my age when we were growing up and into our disorders. They have simply learned or been taught how to ‘improve’ their functioning, no different to the older generation in many ways, except life’s knocks taught us how to cope.
I am not a high or a low functioning Aspergian, my label is simpler than that – I am a survivor.
It’s not that l am unlucky per se,
Fate and destiny serve me well,
But l am a bit of a clumsy beast,
Like a devil in accident-prone hell!
Matters not either, how careful l try to be,
Caution seems to float past my head,
With disaster following rather quickly!
From as far back as my memory serves,
Surrounded l have been by mishaps,
Like someone above wants me to get my just desserts,
Or perhaps God wants me kidnapped,
By aliens who might like to probe,
Deep inside my careless mind,
To discover if my frontal lobe,
Is present completely and utterly all the time!
Falling into holes, slipping over rocks,
Being chased by nutty squirrels,
Wiring up badly and burning with the shock,
Running, jumping and falling flat on hurdles!
Tragedy always follows me wherever l go,
Matters not really, how careful l am,
Gingerly stepping through life with a steady whoa!
Simply put, l am an accident prone man!
Emotionally, personally, physically,
Intellectually, all the same,
Accidents, mishaps, disasters fundamentally,
If it can go wrong, it’s my claim to fame!
Dropping into monsoon drains,
And carried out to sea,
I know it sounds insane,
But it always happens to me,
Getting to the point, that it looks deliberate,
Trying to get attention maybe,
Don’t think so in all honesty, it just predates,
On me, like a dirty great disability!
Bouncing out of the saddle of a galloping horse,
And eating half the countryside,
Swallowing my teeth and buggering my jaws,
Not mentioning what it did to my insides,
Russian roulette might be luckier,
One bullet destined to the brain,
Would probably miss as a procedure,
And ricochet off the wall awarding me more pain,
But not death, for it would appear,
Despite all the worst that can happen,
The grim reaper l think lives in fear,
Of my soul, and finds it funnier to see me in action,
Rather than claiming me as his own,
He revels in offering me a life filled with dread,
And laughs joyously at this human cyclone,
That bangs around through his life instead,
Praying that the dangerous cycle may soon stop,
And that the words ‘Oopsy Daisy’,
Might soon end and close down like a shop
Not to be seen again … maybe,
Alas however l thinks l is doomed,
To a life of bangs, scrapes, breaks and close shaves,
And that from my birth l have been groomed,
By some mischievous imp who was seriously depraved!
Relishing in the sad factor, that there is always one,
Who has to have their pathway,
Lined with disasters, accidents and unlucky fun,
Not forgetting the term Oopsy bloody Daisy!
Chapter 6 – Ep 9 – Soon