Dancing in the Grey – Life with my Asperger’s
© Rory Matier 2015
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.”
Walking on Eggshells
First impressions …
Rory had originally asked me to make a contribution and l thought what could l possibly add? He suggested that perhaps l would be able to add content from a different perspective and through Neuro eyes. After some deliberation, l decided that my input perhaps would be best suited in the epilogue.
We have known each other for over two years but only started living together as a couple of few months ago. Before we became an US, he had asked me to “think like an Aspie but not become one”. Rory was adamant that we would only ever be friends, and that he had no true interest in a relationship, as he did not think ‘he was capable, due to his previous relationships’, but did say that if he was to ever have a relationship again, the person would have to understand him. I knew nothing about Asperger’s Syndrome so l knew some research was in order.
That task in itself was frustrating enough! Trying to find qualitable and valuable information on adult Aspergers proved very difficult indeed. Information in the United Kingdom was scarce especially concerning relationships. I found more successes with Australian and American literature and research studies. I read thousands of words about the general condition itself, but very few about my main objective. Some books were quite helpful, but were written by ‘Neuro’s’ like myself.
Before Rory l had never given much thought to the terms Neuro and Aspie admittedly, but was soon to learn that in fact NT was considered the normal way of thinking for society, whilst Aspergers was not. One of the issues we both feel very strongly and passionate about today is the lack of Autism Awareness for adults with Aspergers. So much is concentrated upon the young, but what of the older generation? With my research underway, this alone made me question many other areas. Society is so very judgemental, if you do not fit into the “norm” then you are ousted. Who decides what is normal? Why has Asperger’s Syndrome been slotted under the Autistic umbrella. It appears that very slowly the medical profession [especially in the United Kingdom] is recognising AS in young children [after much struggle by parents] and provides help for them and support for their families, but what of the ageing disorder?
In the early days of getting to know Rory maybe l should’ve just remained friends and not contemplated a relationship with this “quirky” man. I can be extremely stubborn and enjoy a challenge and yet there was a connection between us which l could not explain. For the first time in a very long while a man was paying attention to me. It was intense, lengthy emails with links to pieces of music that he knew l would love and telephone calls where we chatted for hours and the odd saucy text message! I felt alive again and wanted this man in my life regardless of his label as an Aspie!
I began reading any literature that l could find and try and understand how this man ticked. I soon realised that l had become Rory’s hobby/special Interest … some might even go as far to suggest an obsession. He does make reference to ‘special interests’ in previous chapters in the book.
Very early on in our relationship we knew we shared many interests but held similar passions for music, a love for animals especially dogs, cooking, the outdoors and nature and sex, not just in the physical act but the sensuality and the tactility of sex. Sex was part of our makeup/who we were which few of our previous partners never fully understood. As part of my ‘understanding of him’ he asked if l would like to read his manuscript that he had written “Yesterday’s Adult Tomorrow’s Child” which was about his journey pre and post diagnosis.
The book portrayed a very dark picture of the disorder and him. It showed a man who from early child childhood to adulthood had overcome many challenges and obstacles as he felt he never ‘fitted in’. Some of the contents at that time filled me with dread. How would l cope if he had a meltdown? I couldn’t get my head around his self harming days. Would l always be on a red alert in case something triggered a ‘downtime’? Could l seriously contemplate a relationship where l may never be cuddled, or have my hand held? Rory had explained in detail that he believed he could only display intimacy during sex, would this be enough for me? Alarm bells were ringing and maybe l should have just walked away from this complicated man.
However, after reading the book, l had many questions, but more importantly was that the man l was getting to know was simply no longer the man who had written the original draft. After some discussions with him, he decided a rewrite was necessary.
As a couple we had been communicating for nearly 6 months before our first meeting. We had decided that we wanted to get to know about each other as much as we could before we met up. It was his 50th birthday in May and l wanted to celebrate that in some way that would be memorable. So we arranged that l would drive up from Kent to Lincolnshire and collect him and we would spend the day at the Seal sanctuary in Skegness. Sadly due to his health that meeting did not take place until June.
We had both exchanged photographs so it was not a complete ‘blind date’. I was armed with a list of do’s and don’ts and one of the items on the list was that l had to give prior notice to my arrival as he hated people just turning up at his door unannounced and to a certain degree surprises, as he needed to be prepared for a visit. With this in mind l duly telephoned to say to expect me in ten minutes. I felt sick with nerves and was very aware that day could be challenging to us both!
I had agonised over what l should wear … first impressions are really important l thought and yet … that was not the case for Rory! I was greeted with a man wearing an old cardigan with holes in, a pair of cargoes that had seen better days, he was unshaven and his short hair badly needed a cut. He looked like one of those ‘nutty professors’, intelligent and aloof styled, complete with broken glasses! Furthermore, he was completely oblivious to how he looked?
I was introduced to his two dogs, Dora and Scrappy and then was shown around his abode. Nothing had prepared me for the mismatch of colours on the walls, the curtains were drawn and it was incredibly dark! I can look back and laugh now but the darkness was depressing. I suffer from SAD and as such l not only need light but lots of it!
Rory had lived for a good few years on his own prior to where he was with only his own dogs and horses as company, shunning society and living in many ways no dissimilar to the life of a hermit. His natural graces, social etiquette and many of his behaviours were ‘odd’ to say the least. He even then, spoke to very few people face to face and as such never realised what he looked like, and as he would say ‘it’s only people that judge on your appearance, whereas horses and dogs do not’. In many ways, he had lost touch with the 21st century, and needed to make a re-entry.
Trying to recover from the dark house, l was eager to get back into the car outside in the daylight, and even though l was tired from the three hour drive up from Kent, it was simply more inviting. And yet if l thought the house was startling, l had more ‘adventure’ to come on the journey to Skegness! I had of course done my research and knew that it would take an hour or so from Rory’s to the Seal sanctuary, but l had been assured by him that it would be okay despite admitting he did not travel that well in a car. Foolishly l did not use Sat Nav as he also told me he knew the way having been to Skegness before – so not only did l not know where l was going, but in addition to this l then had to put up with a man who could not sit still in his seat! He flailed his arms and legs around; he rocked to and fro, hit the dashboard many a time and made strange noises! At times l had to tell him to stop distracting and touching me as l could not concentrate on the driving!
How either of us survived that first ever journey l will never know? Over our initial times together l would see him calm down during car journeys and come to learn and understand that it was in fact stress or nerves which made him behave like this. Today he is no where near who he used to be in the car – he is ‘normal’, occasionally he still makes the odd noise, will always be a fidget thankfully not to the extreme as it once was, but is a more pleasant passenger, but still a lousy navigator!
By the time we arrived in Skegness l was absolutely exhausted and we still had the actual Seal sanctuary to go to! I had read that Rory found crowds of people a struggling experience and so was on full alert the moment we entered the park. I made mental notes of where the pockets of people were so we could try and avoid them. A few times he simply wandered off, and it was like having a child, l so needed a leading rein. Even a small thing like having an ice cream was stressful as he is overly sensitive to hot and cold, so when he appeared to be having some kind of “episode” or reaction to the ice cream by slamming his back against the car in pain, and was reeling around in agony – l just watched in horror! We did manage to enjoy a walk on the beach which was an instant stress reliever for me.
Stupidly again, l did not use Sat Nav on our return from Skegness back to his house, and so l endured another stressful journey, more flailing arms, a funny event with his cardigan, and an absolute cluelessness from my so called ‘know where l am going’ navigator! Looking back l know now, that l had tried too hard with the day. I had so wanted him to have a good memory of our first date, but as they say hindsight is a wondrous thing isn’t it?
I had also planned for us to have a meal out in a local restaurant/pub in the evening. It was close by and l expected that it wouldn’t have been too busy. I had taken him back to get changed for the meal and as this/our relationship was going to be different to previous relationships l had insisted on staying at a hotel for the night rather than staying at Rory’s, so drove to the hotel to get changed – more driving but it was important to get it right. I showered and changed as after all we were going out for a meal and l wanted to look my best. The hotel was a few good miles away from where he lived, and l had become delayed and so rang him to say to be ready and that l would swing round and pick him up to save time.
As part of his birthday present l had got him a bottle of Wild Turkey bourbon, which he had started drinking when we got back from the Seal sanctuary and so upon my arrival found him to be quite tipsy, he had not bothered to shower or change and had been playing his online game in the mean time! I was a little disappointed, but the urgency of getting to the pub had superseded everything else. I almost yelled at him to get into the car as we were going to be late and was geared up for another eventful journey – however l think that was the best journey we had ever had as he just giggled all the way due to his tipsiness! He was completely oblivious to the fact that l was driving much faster than l should have been except the occasional ‘wheee’ as we hit a bump on the country roads.
The meal thankfully was uneventful; the pub was almost empty so it was quiet and peaceful. When we sat at the table, Rory sat next to me instead of opposite me, which l found strange. Later on he told me, that he never looked at someone directly in their eyes – until het gets to know them, but looks to either just a little left or to just below their eyes. By sitting next to me he was more at ease, and could enjoy his meal and my company rather than be uncomfortable and try to conform to what society expects.
Our first date was most assuredly one to be remembered!
We still both laugh about our first date, but it was only as l was writing this chapter that Rory became all too aware l think for the first time just how panic stricken l was that day. He simply did not seem to take on board that l had in fact read his manuscript very slowly and understood all the implications of the dark personality he had described, and quite frankly was worried sick about the day. Of course these days, he is so very different from back then, and yet it was only just two years ago, but it seems like we have been an US for years!
One would think, by reading the above that perhaps l should have just run a mile or in the very least remained distant friends, but l didn’t. As l said, there was an unusual connection shared between us, something which appealed to me very much about this man. He had written a morbid assassination on who he had believed himself to be as a personality and l truly believe the days in the caravan had changed him further along from his diagnosis alone. He was in many ways, misunderstood, he had lost his confidence in himself, and he seemed to no longer care for himself anymore. l think it was his determination to ‘make it better’ if a next time was to appear for him on the relationship side of things that really caught my affections for him, and more importantly he needed someone to both believe in him again and see him as a man.
I tried to visit Rory as often as l could after our first date, but l was working away and had family commitments so in reality l only managed the trip to Lincolnshire once every 6 weeks. I would stay for the weekend, and then returned to Kent. Of my many visits during our first year together we had many hurdles that we crossed together. He was learning to accept some of my NT behaviour and ways and l learned more of his Aspie ways. I still struggled with the darkness of the bungalow and l spent a lot of my time during the visits in the kitchen as it was the lightest room.
Rory was and still is a ‘gamer’, something l have no interest in, but it was a hobby of his and demanded his time so l learned to accept it rather than fight it. The game gave him the mental stimulation which his ever busy mind craved and he would often play well into the early hours of the following morning. Insomnia had always troubled us both but in different ways. He needs to be mentally and relaxed tired as well as physically drained for his mind to switch off and before he could go to bed for the night. Our sleep patterns were completely different too, l am a morning bird and a light sleeper, he is a night owl and a heavy sleeper. His need for mental stimulation fascinates me as much now as it did back then, he can or could be gaming, watching a film intently and at the same time researching something up on the Internet.
Watching a film with him is also an eye opening experience, and have sampled nothing quite like it before. He is a film collector and buff, but we would have to watch the film in silence as he was dedicatedly focused and as such become so engrossed, and did not take kindly to ‘banal chat’ as he classed it. Sometimes l still forget, and his ‘look’ reminds me to be quiet.
Due to his time in the caravan where he had lived virtually as a hermit for more than four years, the result of that was that he had no regard for his health which when we first met was very poor indeed. Different factors had contributed to that, an exceedingly poor diet, chain smoking, daily stress and bullying and combined with a refusal to visit the Doctors. He had during that time very little contact with the outside world, the odd walk down to the local shop, and predominately his only contact came via the horses he worked with and the two dogs he owned. Although he did have online chatting with the ‘game gang’, and although it did all change somewhat when he moved to the bungalow, l must have been seen like a whirlwind to him! Miss chatterbox who could talk about nothing in particular for hours, who suffered from SAD, had cleaning OCD, and was family orientated. I had two grown up children and five grandchildren and was older than him by 18 months. [All of Rory’s previous partners have been much younger than him, including his ex wife]
We managed occasional trips into town, they were always planned and executed according to our ‘shopping and to do list’. There was no chance of just casually wandering around town window shopping. I had read in his draft that he struggled to be in crowded areas and l was ever mindful of this. What l had started to notice was that when we were together he seemed a lot more at ease. We often discussed this and came to the conclusion that my presence acted as a form of ‘Linus Blanket as he felt as though l shielded him from the outside world. Supermarkets used to be a definite no go area as he hated the business of the store, the crowds of people, the noise and hustle bustle and the glare of the overhead lights would cause him giddiness and nausea.
Today Rory can go into a supermarket armed with the trolley, myself and of course the ‘list’ as other forms of Linus Blanket’s’ and not desperately seek out the exit signs anymore and enjoy the shopping experience. I can remember a couple of occasions when l thought l would die of embarrassment when he had acted inappropriately and l ordered him out of the shop and pretended to have nothing to do with him. Rory would just laugh and find the whole incident highly comical, but l was mortified. He and l have always laughed and l don’t think l have ever laughed so much in a relationship before as l do with ours, but l do think this is an all important element to a successful relationship. At times the laughter has been at each other’s expense which just made light of possible difficult situations.
Rory and l made a pact right at the start of US, that we would never wear masks with each other. We had both been guilty of this as in many ways it was our survival/coping method with our previous partners and life in general. We agreed that communication was key and we discuss everything, the good, the bad and the at times down right ugly. Within our first year as a couple we progressed to Skype video calls as the long period of times apart weakened our connection. When together we were very strong, but when away and apart it waned a little, but the more we got to know each other and our relationship travelled to each new step, the lack of seeing each other on a regular basis became a real problem. I do believe that had we lived closer and saw each other weekly, the issue wouldn’t have been so dire. Skype video calls seemed a positive step to help with the time lapse of the visits. We could spend hours on each call, originally it was only a couple of times a week, but progressed to daily to the point that we both hated the calls with a passion. So much so that Rory even now can not stand to use the application with his friends for more than forty or so minutes on just a normal telephone call state. I would often be amused as Rory would disappear for a few minutes as something had distracted him, or caught his attention and suddenly l was left looking at empty space whilst he was beneath the desk or in the kitchen making a drink, or in the toilet or, or who knows where else he at times went to? Upon his return to the camera l would ask him if he wanted to end the call, as l did not see the point to my sitting there looking into empty air whilst he was engaged in other things.
Baby Steps …
A couple of months before our first anniversary, Rory sadly lost his precious Dora. She had been poorly for several months and had had two major operations and the Vet confirmed our suspicions that she had cancerous tumours and it was just a case of time. Bless her, she put up an amazing fight and we are both convinced that she was hanging on until we were living together. We had discussed this on a few occasions but the timing wasn’t right. I knew how close Rory and Dora had been and l worried that losing her would possibly send him into a dreadful ‘downtime’. Rory did have a second dog, Scrappy – but she had predominately been an outside dog and hadn’t been part of the indoor family. I hoped by reminding him that Scrappy needed him that he would not harm himself or worse and that somehow he’d find some comfort in having her indoors with him. He did withdraw for a few days and he was quiet, but not the downtime l had feared. Scrappy is still with us and we are all a very happy pack.
After much discussion, Rory and Scrappy came to stay at mine for a few days in 2014. One would think it would’ve been good for him to get out of the bungalow but l lived on a large estate with houses and people everywhere – screaming kids, high traffic, families, dogs barking and so much noise in comparison to the quiet sedate village he was living in. He naturally had reservations as did l but l tried to reassure him that he would be in my bubble with me, so all would be well. I wasn’t working at the time so l knew that l could be with them both 24/7. Rory was attached to his PC and obviously the game. I only had a laptop but he decided that he could live without the desktop if l installed the game on mine. It was all about familiarity. If he had the game and access to the Internet he could escape when he needed to. I had Sky which meant he could flick through channels of TV and watch all sorts of programmes and of course he could use the ‘pause’ function which he thought was awesome!
My fears of him struggling with a light and airy house were short lived as he actually liked the lightness. We took Scrappy on long walks and avoided the crowds. I found it difficult adjusting having someone else in my bubble. I was a creature of habit and liked things to be done my way. My OCD was screaming at me – because of the dog hair, dirt, the shower not ‘dried’ off as l like, lids on bottles not put on properly. To everyone else, these may read as only little things, but l suppose l was on tender hook all the time he was at mine. Rory however was very relaxed, and took most of the change in his stride, we cooked together, laughed lots, enjoyed our walks with Scrappy and he had his own time playing the game.
The two of them stayed several times after that first visit and for much longer periods. The dynamics of the subsequent visits changed slightly as we would bring his desktop with him and set up an office upstairs so he had his own retreat space. As l was working again, lists of chores were drawn up daily to award him some structure to his day which helped me and my OCD’ness and the visits just reiterated that we needed to live together for us to move forward as a couple.
My friends and family knew very little about my relationship with a man who in their eyes seemed like an oddball, none of them knew anything about AS, they had not met him and were quick to pass judgement. They just seemed to believe that l had taken on another ‘lost soul’. Rory and l to the outside world must have seemed an odd couple, but we worked and still do. We balance each other out. How do you explain that to an outsider who is not in our bubble? With previous relationships l tried to incorporate the family with my partner and that never worked so this time l was determined to keep them apart. Rory is not family orientated and did not wish to become ‘part of my family’. He has always encouraged me to have my own life, socialise with friends and see my family whenever l wanted to. We had both read up about CADD of AfDD and were aware of its effects so it was important to try and not slip down that road.
I think the more l did on my own the ‘weirder’ it seemed to the onlooker. A friend of mine asked how l felt about not including Rory at family gatherings and l explained it was easier as l could give 100% of my attention to the family and when l saw Rory l could give him 100% of my time. A win win situation. My daughter told me at the beginning of our relationship that she did not want her children to meet Rory. That stung a little, but it was no biggy so we just continued as we were. Now with us approaching our second anniversary she and her husband have met Rory, as have her children and all get along very well.
Coming Together As One!
I have read that living with a partner who is an Aspie is like being on another planet, l am sure if you asked Rory he would say the same of me. Rory reminds me how lucky l am that he had been diagnosed and that he had accepted who he was, but his previous partners were not so fortunate. The different planet concept is a good way of trying to describe the differences between an AS and an NT. Our planets co-exist very well for the majority of the time, but on occasions it feels as though they have bumped together and bounced off in opposite directions. This will usually have been caused by a misunderstanding or miscommunication. Sometimes his black and white leaves me wondering what l have said or done to get this response. His downtimes are few and far between these days thankfully. I can read him very well [when he lets me] often though it will take some pushing and prodding to find out what has caused him to become stressed but on other occasions he will just ask me to ‘be quiet please’ until he has processed his thoughts and then he’ll be ready to open up. Rory can also read me very well, but sadly l am an NT and l throw emotions into the mix which Aspies’ struggle with.
Today if someone asked about some of his quirkiness l would say ‘laughing like a hyena for no reason, the complete inability to understand the word moderation, his pranks and mischievousness, his oddball humour, his literalness, his verbosity – never ask him a question unless you do have the time to listen to all the possible and potential answers, his over analysing of ‘absolutely’ everything’, his frustrating habits of not knowing when he is too hot and thinking that he is always cold when he is sweating, his restlessness in bed and his fidgety ways, never ask him to navigate because he will suddenly blurt out directions when you have just passed that needed turn, his ability to both switch off and detach so quickly, and his ability to listen but not really listen and be somewhere else, that l regularly forget he is an Aspie at times, that he can become ‘ratty’ at the smallest things, that he can change moods for the same reasons and that you can never double guess him, But then if someone was to ask what l found endearing l would say that he challenges me to think and be myself, to try new things, to believe in myself and when we talk, we can talk for hours on end about anything and everything as both adults and children alike, that we have fun and lots of it and we laugh like kids. Oh there are so many more, but l will not bore you, but these more than compensate for any of the small frustrations.
I once said to Rory that l wanted to be the one to ‘help him live again’. I can say with my hand on my heart that l have succeeded with that quest. Maybe all those months ago [although it seems like years we have been together and not just for the 2+] l should have walked away but something stopped me. Was it his vulnerability, his sexy voice or the depth and darkness of his brown eyes l simply lose myself in, his way of making me laugh [and we can laugh], his willingness to believe in me? He has watched me change and grow as much as l have seen the same in him. I once didn’t feel truly comfortable telling others about my relationship with him as l had to justify/explain about him being an Aspie. Those days are long gone. Today l am proud and honoured to be Rory’s partner. We still have challenges to over come but together we are a united force.