Distant

I have been too distant lately; no blog posts in around a year, my head in a book (well, several books, actually), overtaken by my own latest obsession (one of a number).  Sorry y’all (Who am I kidding?  Only two people in the WORLD actually ever read my blog in the first place…).

Distant is often a word associated with Aspies like me; we don’t like to communicate like the rest of you, we don’t like to be touched, we don’t enjoy others’ company etc. etc.  Actually, anyone out there who has read my previous posts (all TWO of you) will have noticed that I don’t quite subscribe to this analysis.  Sure, we may appear distant to the rest of you, but that is because we are actually getting right up close to something else, something many others might find odd, sometimes, getting right up close to ourselves.  Nope, not in that rather perverted way you seem to be thinking of; as I have said before, Aspies are actually very empathic, often to the point that our empathy takes us over; this is as possible in relation to our own emotions as it is for everyone else’s.  Getting “close” to ourselves, is just another way of describing the time and processes involved in self-reflection, self-study, auto ethnography, if you will.

It is “distance” that allows us to free up some of the intellectual space needed to make this highly involved, often quite draining methodological effort just a part of our normal thinking.  What others need a notebook to record, forms part of our everyday mental rambling, to an extent that we acquire distance from the rest of you both because we don’t notice that the rest of the world is receding into the background, and also because, if you didn’t recede, you would only get in the way in any case.  I don’t do multitasking very well; but give me one task, and the peace and quiet to get on with it, and I can pretty much outdo anyone with the outcome.

So what have I been engrossed in?  How about:

  • Norwegian
  • Logic
  • Qualitative research methodologies
  • Second language acquisition
  • Precognition and noetic science
  • Music therapy
  • Cold war espionage
  • Semantics
  • S-Town (fascinating podcast)

I could go on, but I won’t.  None of this makes an ounce of sense as a group of pursuits.  To me, the thing they all have in common is their inherent link to mental development, whether linguistic, scientific or esoteric; just a hour spent studying these areas takes me somewhere new, somewhere I wouldn’t dare to go in the real world, outside my head.  And yet, to me, this is reality.

Odd, I know.  Intellectually, I am fully aware of the bizarre and uncommon nature of the way I live my life, the way I spend my free time.  However, answer this.  What is the difference between an interest in these areas and someone who, for example, is an avid traveller?  Why is it more normal, for example, to engage in reading about one’s interests instead of travelling to experience them?  Is reading any more intellectual than travel?  Is the outer world any more “normal” than the inner one, inside our minds?

As we struggle to come to terms with some of the horrors that have befallen people in the outer world recently, in Manchester and London, we are all given cause to pause and think.  Reflection of the outer world in the inner one, in an attempt to reason, reconcile or just to cope, should not be something we do only when tragedy befalls us, but tragedy is often a catalyst.  And so we gain distance (perhaps if only to get away from the horror that makes us miserable, and gives us cause to doubt our humanity); with distance comes perspective, and with perspective we see more broadly.  Horror never becomes less horrifying (nor should it), but we learn more about the nature of the world we live in, by gaining distance.

And so, through pursuit of this disparate group of rather unorthodox interests, I might be distant from reality, but I can at least gain perspective (one sort of perspective) which can help us to explain, or at least to cope with, the inexplicable world which we inhabit.  Explanation can bring us closer, and help us to understand.

So who is distant now?

Are We Nearly There Yet? Not by a Country Mile

I haven’t blogged for a little while, largely due to the fact that I have been on holiday, and partly due to the fact that  I have been doing a little thinking about what would be the best theme for my next blog entry.

I knew that I wanted to tackle the link between Autism and this story; a vulnerable man with Autism, kept as a slave on a farmyard for 13 years, but, as I mentioned in previous posts, I wanted to avoid the risk that the story merely becomes another tale of woe about how autistic people cannot operate freely and effectively in society.  And then, I stumbled upon an angle that I think many autistic people take for granted, but which gets lost in the fog of public opinion, surmising, and theorising.

First the facts.  Mr Simester was a “vulnerable” adult, taken away from his family during a holiday, made to live in squalid conditions on a farm in South Wales from 2000 to 2013.  I had been past the farm in question on a number of occasions in the 13 year period of Mr Simester’s unlawful detention and it chills me to the bone to think that I had come within less than a hundred metres of a man forced to work 15 hours per day, washing in an animal trough, living in a rat-infested caravan.  He was 30 years old at the time of his abduction and therefore it appears likely that his vulnerability contributed to the ease with which a grown man was subjected to treatment that most of us would fight against with every sinew of our being.

However, let me be clear.  Mr Simester was not imprisoned because he was autistic, in my view.  There are plenty of reasons underlying the basis for his torment.  There is the evil of those who kept him captive.  We also have to consider our own lack of vigilance as to cases of modern-day slavery; we can scarcely believe that modern societies like those in Wales could become a breeding ground for something we more readily associate with the Third World (lesson learned – slavery can happen anywhere – wherever we allow it to happen).  There is also the implication of a less-than-coordinated effort by the authorities.  It has come to light that it was apparently Mr Simester’s parents, not the police, who liberated their son from captivity and took him home.  Where were Social Services?  Not sure.  What is sure is that it is not Mr Simester’s Autism which is a cause of his treatment.

Some may think that this goes without saying, but it is surprising how quickly and silently we slip into an undesirable mindset.  First, we acknowledge Mr Simester’s suffering in circumstances where others would not have tolerated it.  Then we look for a reason why Mr Simester reacted differently.  Thereafter we stumble upon something that makes him different – his Autism – and this becomes a factor in the uniqueness of his case in two ways.  Quite rightly, it heightens our sense of disgust that a man for whom society should have cared, ended up in appalling conditions such that those described in the story above.  Erroneously, however, the Autism angle also becomes an explanation as to why Mr Simester was so badly treated.  It almost becomes a rationale in itself (“Of course he was more likely to be manipulated.  He was vulnerable; he had Autism.”).  We skate oh-so-closely to adopting the position that Mr Simester himself was somehow a contributory factor in his misery.  We will never admit it, but deep-down, at some point, we end up equating the difference that comes with Autism, and Autistic people as a group, with the assumption that they are more likely to be vulnerable, more likely to be enslaved, and therefore less likely to operate in society as fully-functioning individuals.  With this comes the assumption that the state needs to treat them as “special”, because they cannot live as others do.

I am not suggesting here that the state does not need to intervene; nor am I suggesting that particular groups of people – including those with Autism – should be lumped together with the general population, devoid of support.  That Mr Simester deserved the care of the authorities is an incontrovertible fact.  What I am saying, though, is that thinking in the way described above turns the issue inside-out.  Its starting point is one of deficit.  It assumes that Mr Simester and others like him cannot operate freely in society, and so they need intervention.  It ignores the paradigm of positivity whereby Mr Simester and others like him are perfectly capable of operating freely in society, provided that society changes and becomes a sanctuary for all groups of people, not just those deemed neuro-typical.

To adopt the latter way of thinking is to re-source the basis for Mr Simester’s vulnerability.  It does not reside within him, as though it were his deficit, or something that can be named, identified and “owned”.  This vulnerability is not a thing – just like Autism, it describes a state of being, and is therefore a label, and a consequence of factors, not something that resides within us.  Mr Simester’s vulnerability does not exist because he has Autism; it exists as a consequence of the way society does not adapt to nurture and cater for all those who live within it.  Vulnerability, therefore, is society’s fault, not Mr Simester’s.  He is not vulnerable because of who he is, but because of the way others interact with him, and understand him.

This general principle can apply to many other fields of social interaction; employment, politics, law and order, relationships, commerce, even intimacy.  For instance, we regard intimacy as something that Autistic people cannot engage in.  This is because society only has one paradigm for defining intimacy.  Quickly thereafter, we arrive at conclusions that are totally non-falsifiable and therefore unproven – that autistic people cannot love, or even empathise.  We are actually incredibly empathic people, by-and-large, but if you go looking for empathy as defined for neuro-typical people, of course you will not find what you are expecting to see.  We relate to others differently, but that does not mean we cannot feel love or empathy.  When you turn the paradigm inside-out and actively look for different forms of empathy, love and affection, you will find that they exist in many forms, and that autistic people are just as capable of experiencing these things too.

Similarly, we are just as capable of being useful in employment, just as able to understand and engage in politics (if only the medium and content could stray from the typical round of bitching, scheming and infighting that normally defines political activity) and just as capable of contributing to commercial activity.  Once society adopts this “can-do” mentality, and actively looks for capability, rather than arrogantly waiting for others to prove their worth, activity which is normally called “intervention” (a word that implies by its nature something extraordinary, requiring special effort, cutting across norms) ceases to be a one-off intercession, and becomes the norm, rather than the exception.  We are on the way to achieving this goal, but our progress so far as been pitifully slow.  We have made very little ground, but one thing is certain; we will get to the destination one day provided we keep treading the path, and avoid slipping into comfortable old paradigms.

Autism – Slipping Through the Net

I saw these two articles here and here.  Another two examples of men who get to their thirties before receiving an Asperger’s diagnosis. It would seem like this oversight is not as unheard of as you might think, which got me thinking about my own situation. I must admit that there are plenty of times when I have questioned my own reasoning about why I am the way I am; maybe I am just weird, or anti-social, or a sociopath? Surely, if I was on the spectrum, someone would have noticed during my childhood.

I cannot speak for the guys mentioned in the articles above, but, on reflection, I can identify a couple of reasons why I might have slipped through the net, but first…

  1. I didn’t slip through the net

I mentioned in my first post how my mother would exclaim in her exasperation that something wasn’t right. Given the way things where in school, when I was a kid, it is quite feasible that the exclamation should be as far as it went. Just because someone feels that something is not right, this does not equate to them doing anything about it. I mean, in those days, anything that could be seen as a psychiatric issue (even though Autism Spectrum Conditions are not a psychiatric illness, that is all too often how they are viewed) would become a source of great fear and when I was so academic, maybe my mum just chose to put the query to the back of her head, and focus on the good things that I could do and my academic ability, which brings me to…

  1. Distraction

I excelled academically; so much so that, on arrival at Junior School at the age of seven I was advanced a year. Overcrowding in my intended class meant finding the brightest to move into the class above, and so, up I went. Whatever quirks I had, they may just have been seen as aspects of my rather “geeky” personality. Whatever doubts there may have been, they did not amount to anything as serious as Autism (and Autism really was – and is – seen as a serious handicap). This suggests a rather narrow definition, then and now, of what Autism Spectrum Conditions may look like.

  1. I was compliant

When thinking about Autism, our mind set turns to certain behaviours which have become synonymous with being on the spectrum. Behaviours are compared with a “fit” or “type”. As we are finding now, there are as many types of Autism as there are autistic people; we all vary slightly in our ways of thinking and behaving. Many of my behaviours fitted the type; my withdrawn demeanour, my need for routine, my unwillingness to socialise, but none of this was either pronounced enough, or debilitating enough, to be noticed.

Take meltdowns, for example. I had plenty that I can recall, many of which got me into real trouble. My parents often took pride in the fact that I “knew better” than to play up or throw tantrums in public, because I would face a real row and punishment when I got home (whose parents wouldn’t?) so it is perhaps unsurprising that I learned to avoid censure by following the routines which had, to an extent, been ingrained in me. I kept my tantrums until I could get somewhere private – even now, I will hold in my anxiety and frustration at whatever is getting to me until I can find a quiet spot to “lose it”. As a child, fitting in was expected if the benefits of my academic mind were to be maximised and, unsettled as I was with the thought of what might be (I was, and still am, extremely angst-ridden) it is perhaps understandable that I would try to modify my behaviour to minimise the potential for unpleasant consequences.

Before you jump to the conclusion that those who raised me could have (or should have) been more sympathetic, remember that, as far as they were aware, this was a behaviour issue, not an Autism issue. I was caught in a vicious cycle that was set in motion by the fact that none of my behaviours were extreme enough to be viewed together as a whole, which led to expectations about my behaviour that meant I had to keep myself in check or face unpleasant consequences – in other words I had no explanation for my quirks or tantrums other than my own “fault”, and so I had to keep to myself the crushing pressure this wrought on me to fit in.   In turn this meant that no one ever expressed doubt about my developmental state other than my mother’s exclamations in times of anger or confusion. Therefore:

  • My unwillingness to socialise was called just “geeky”.
  • My routines were seen as just “organised”.
  • My tantrums were seen (if they were seen at all) as “naughty”.

In a nutshell, nobody saw the wood for the trees. Inside me however, was a person who, however much I tried to fit in, knew that something was not quite the same for me as for others, but couldn’t quite give it a name other than “psychopathy” or “sociopathic behaviour”. Over time, I gave in to the assumption that I was just a machine; able to think and calculate in ways that others couldn’t, but unable to feel the way others do, unable to empathise and unwilling even to hug or touch others. Even to hear people talk about how they feel makes me squirm. The only coping mechanism for the loneliness this brought was an unflinching belief that my intelligence would allow me to succeed in life, with or without others to help me. But of course it is never as simple as that is it?

So what is there to learn from this? I remember, as a teacher, interacting with pupils who were on the spectrum. In my ten years in the classroom, not once did I ever receive advice or training on behavioural or developmental conditions, whether they be autism, dyslexia, dyspraxia […] and so I did what came naturally to me; I read up on them. I must admit, thinking back, this was the first time I entertained the possibility that my quirks were symptomatic of Autism. The trouble is, rather like my parents before me, I discounted it because, although a lot of the behaviours rang true, the role models and stereotypes were not “me”. This was not just denial; pupils in my classes who had been identified as autistic or having AS, belonged to a very narrow “model”; their behaviours were a lot more “extreme” than I saw mine to be (although I was a very bad judge, to be honest, having played down the extent of my quirks in order to fit in). I do now wonder, however, just how many autistics go unnoticed, and undiagnosed because they don’t fit the “type”. This is very much a “chicken and egg” scenario. Until we start to broaden our view, and actively look out for traits of Autism, the only traits we will compare children to are those which are most pronounced. The answer, it seems to me, is in our positivity about Autism. If we do not fear it, we are more likely to look for it, and less likely to close our eyes when we see it. If we embrace its advantages, discovery of a child’s Autism becomes less a “diagnosis” and more a “celebration”. Here’s hoping…

Autism – A different way, not an aberration.

Last week I mentioned that I think we need to view Autism in the workplace differently.  This got me thinking about my own attitude to my positive and challenging traits.  I booked my holiday this week – I am going on my own, which suits me just fine.  I do enjoy having company on holiday; for one thing it allows you to do things that you cannot do on your own, and you don’t feel quite so exposed.  However, it brings with it a significant source of stress as well, mostly arising out of the lack of control that it brings.  Take breakfast for instance.  I am a really fussy eater because some things just don’t feel right in my mouth.  As a child, I was a terrible eater, and, if anything, this has worsened over time.  So, whereas I like peas, and I like carrots, I won’t eat them mixed together.  Just the smell of veg cooking makes me gag and wretch, and if food looks like it did when it was alive, forget it.  I love to eat fish, so you can imagine the shock and trauma when I lived in France, of finding out that many French people like their fish served WHOLE – eyes and everything.  OMG!  Any pie or pasty with onion in it, chopped up into small pieces, no way.  On top of that, I have such a sweet tooth, and such an attachment to routine, that changing my habits away from stuffing myself with chocolate and cakes takes real resolve.

And when that does happen, starvation tactics kick in, as I “go overboard” in my eating routine in an attempt to eat more healthily (unsuccessfully).  I once spent nearly a year living on salad.  Just salad.  I gave up breakfast cereal, and potatoes and just about anything that had carbs or sugar in it.  Another time, I lived on sandwiches (long story for another blog entry, perhaps), and I ended up on folic acid supplements due to enlarged red blood cells.  It really isn’t deliberate; I don’t go out of my way to be an awkward eater, but the stress of eating like others is just too much to cope with so I just manage as well as I can.  Going on holiday with others means letting them into the privacy of my rather odd living patterns (odd by their standards), and eating is the most obvious of the habits they will encounter.  Just going for breakfast requires planning and I really don’t deal very well with adding the variable of others’ involvement to an already highly charged morning routine.  So it is always a balance between cost and benefit.

On the other hand, however, is this really a negative or a positive viewed through a negative lens?  I cannot mitigate for my poor eating habits; to do so would be foolish, but recognising that others would see this as odd is a kick-start to make a carefully managed change, where change is needed.  I cannot bring myself to eat the things that feel wrong in my mouth – mixed veg, for example and so the reference to “where change is needed” is important because not all differences are objectively wrong.  However, I can find things that are healthier than chocolate, more balanced than endless salad, and more palatable than fish eyes.  You see, Autism doesn’t have to be about extremes.  There will be things that I have to accept about myself, but I don’t have to let them worry or limit me, and the same goes for other autistic people.  Therefore, if they don’t have to limit themselves, what gives society the right to do so?

Then comes the choice of the type of holiday.  I tend to opt for culture rather than partying or beaches.  Definitely not beaches.  As a child I recall entire days spent at the beach, and I hated it.  I love the sight, sound, and smell of the seaside, so it is not that which gets to me.  I have no problem going for walks along a promenade, but spending a day just sitting on the beach, getting sand stuck on your feet and legs (feels horrific!) and in your sandwiches, or going in the water, where the squelchy sand under your feet just feels worse, and you get stung by jellyfish or sea anemones, or in the rock-pools where god knows what is lurking – my idea of hell.  Sunbathing means sore skin, and boredom.  Boredom like you would never believe.  I love reading, but would much rather do it in the comfort of a chair at home or in a coffee shop, not on the sand or sitting in the wind or burning sun.  My mum said a suntan was a good way to get a healthy glow (she still does) but I knew better, having read about the dangers of melanoma.  As soon as I was old enough, I would slope off on walks on my own, and find a shelter somewhere to read without sand or fish or sunburn to upset me.  Before this, there would be real tantrums on holiday when I was little, because I didn’t want to spend the whole time on the beach coming home burnt and moody.  When I was older still, I would stay behind in our accommodation and do my own thing from there, promising myself that when I was independent, I would never, ever be going on a beach holiday and I wouldn’t allow others to get in the way of me doing things my way.

And so I don’t.  And you know what?  The world doesn’t come to an end.  It really isn’t a problem. I am perfectly fine doing my own thing in my own way.  I may appear odd to others, but I get a kick out of doing things my way, even if it is on my own.  I like going away to Paris, and Copenhagen and Krakow, or into the mountains, which is where I am going at the end of the month.  A week in Snowdonia is my idea of heaven – lots to see and do, plenty of chances to sit quietly and just read, patchy mobile phone reception, so no interruptions and, best of all, I know exactly what I am getting, because I have done it before, and have had some of the most amazing experiences to boot.  I have climbed Mount Snowdon (Yr Wyddfa) three times, Cadair Idris twice, Tryfan once.  I have wondered at the history of ancient castles like Caernarfon, stately homes like Plas Newydd and Castell Penrhyn and learned about engineering feats like the hydro-electric plant at Dinorwic (which is a LOT cooler than you realise).  You lot at the beach, frying in the sun and getting sand up your bum – that’s exactly where you can keep it, because you don’t know what you are missing out on.

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Gorgeous, innit?  Not a jellyfish or a bottle of After Sun in sight!  Wales is wet, but it doesn’t try to kill or maim you, which is a good thing.  Just saying…

And that got me thinking, if you are missing out on this, what else are you missing out on?  Yesterday was World Autism Awareness Day, and as I am becoming more aware of my own autistic traits, I realise that while there are a number of challenges outlined in previous posts, this state of being is actually rather amazing.  I know, going back though my blog entries, you could be forgiven for thinking that I was wallowing in the difficulties associated with my way of interacting with the world – the anxiety, the routine, the meltdowns, and the fact that I think some of these things are possibly getting worse with age, not  better.  But actually, I would not be where I am today without some of the cool things I can do.

Take for instance my linguistic ability.  I have never found myself lost for words on holiday – wherever I have been I have been able to speak enough of the local language to at least ensure that I don’t get ripped off.  And, being on my own sometimes, speaking the language is a good way of making connections with people that can introduce you to the local culture without following you back to your hotel room and getting in the way of your morning routine.  Engaging with others on holiday like this does have its risks, so please be careful, but it can also bring huge advantages if you are wise and never allow yourself to be left in an isolated place, on your own.  Always stay in public places if conversing with others; even if crowds can be stressful they can save your life.

Then there is my attention to detail – I can solve a “Where’s Wally?” puzzle without breaking a sweat.  I see things that others don’t, and that makes me an asset in more ways than one.  My planning is meticulous, making me an excellent project manager.  I can foresee, and plan to mitigate all sorts of outcomes that Neuro-Typicals (or as John Elder Robison calls them, “Nypicals” – see the book reference below) just miss.  On matters that interest me, I can think like lightning and can problem-solve like you wouldn’t believe.  Organised?  My middle name.  Do you have a meeting in need of some brutal chairing?  I’m your man when it comes to keeping order.

I can speed-read at 130+ pages an hour (over 200 pages an hour if I really push it).  I get through books at such a rate that, if it weren’t for e-readers, I would probably use up my airline baggage allowance taking novels to read on holiday (seriously – have you weighed 25 novels, because I can easily get through that many on an average 7-day holiday, if left to get on with it?).  Libraries are a god-send, not just as a potential career (see my previous post) but also to avoid the bankruptcy that would ensue if I actually had to buy the books I get through.  My loan-history is “interesting” to say the least, including Jungian philosophy, Bahaism and guides to origami in the last six months alone.  Even when I was 13, the lady at the library gave me some very odd looks when I asked to borrow “Teach Yourself Sanskrit” and “Shingon: Japanese Esoteric Buddhism”, but hey, I now have a very good grasp of the principles of the Devanagari writing system and my understanding of the Buddhist concept of nothingness can come in handy during a debate on perception and reality, as happened once at work.  Did I say “happened”?  Too passive.  I kicked it off – the others just kept up where they could.

My medium- and long-term memory are excellent, making me a very good contract and relationship manager (my current post).  You wouldn’t think that Autism would make someone good at relationships (and there are plenty of ways in which my relationships are different) but actually, having a great memory is a really good way of not letting your opposite number pull the wool over your eyes.  Autism is not naïvety, despite what the public may think.  If you are going to lie to me, that may have worked when I was a kid, but I have learned a lot about “Nypicals” since then, and liars had better make sure they memorise what they have said, where they said it, what they wore, what time it was, what we ate and drank and what the weather was like, because you can bet that I will have and I can tie you up in knots if you ever try to reinvent history with me.  Consider yourself warned.  As for social niceties, it is true that I have committed the odd (very odd) faux-pas on occasions, but being well-prepared for interactions means that I have found a way around some of the problems that “Nypicals” deal with using their instincts.  I get there in the end, I just take a different route.

I have an excellent academic record – law degree, masters in education, qualification as a high school teacher and experience as an Assistant Headteacher.  In short, I am smart and you can either love it, or shove it.  I don’t need your approval anyway. I can write at length and have a vocabulary that others would kill for.  It may make some conversations sound a little odd, as I tend to use words that sound out of place sometimes, but nothing deflates someone else’s pomposity better than being more articulate than them (even if most of what I say has to be practised in advance).  You will read that autistic people struggle with metaphor, but I don’t.  I have a hard time with sarcasm sometimes, but I think and conceive ideas in figurative terms, so when I use metaphor (and I use a LOT of metaphor in my language), I am not trying to be a Smart Alec, I am just externalising what is already sitting naturally in my head.  And as for sarcasm, whilst it can be hard to work out what it means initially, when I have worked it out, I can learn from it, and use it as well as any “Nypical”.

By the way, what this last point demonstrates is that Autism is not a thing; we do not possess it, and it does not “infect” us or “occupy” a particular space.  It is a label, and there are as many different forms of Autism as there are autistic people.  We have things in common and traits that differ, but being different from one another is what makes us human, just like anyone else.  When you think of me as autistic, I’ll bet you have an image in your head.  Whatever that image entails, some of the traits will be true, some will be less so and some false.  Whatever they are, these traits – ALL of them – bring strengths as well as challenges.  How we value autistic people is based not on the number of strengths versus the number of challenges, but on what we choose to focus on.  Would I have had the advantages in life that I have had, if I had been diagnosed when I was a child?  I don’t know, but I seriously doubt it.  Will my life change if/when I am formally diagnosed?  I hope that I will get better at sleeping, and coping with surprises, and I hope that I will feel less anxious, but there is plenty that I want to cling on to.

You see, I am proud of being a geek; geeks change the world (Leonardo da Vinci, Einstein, Newton) and whilst I may never ascend to the lofty heights of some of the world’s movers and shakers, combining my strengths with a lack of prejudice and labelling (ironically because my Autism was missed) is exactly what allowed me to fly, in many ways.  If you have a diagnosis, and are reading this blog entry, know this; it is just a label.  It is an important one, for sure (if it weren’t I wouldn’t not be seeking a diagnosis myself), but at the end of the day, if I can do all the things that I have done in life, then so can you.  Diagnosed or not, I have carried my autistic traits with me since the day I was born, and if I didn’t have a label to hold me back, you should not allow your label to do so either.  Autistics make great academics, teachers, financiers, relationship managers – the list is endless.  They just need employers to give them the chances that I had.

Sadly, not everyone is as lucky as me; a radio news report in Wales last week reported that a survey showed how 29% of families with an autistic relative report being asked to leave a public place because of Autism (no – try again; not because of Autism, but because of people’s attitudes to Autism).  According to the National Autistic Society website, only 15% of autistic adults in the UK are in full-time, paid employment.

Some may say we are the world’s best kept secret – I suspect that it is not so much a case of a secret kept; more an asset wrapped up in an oily rag and dumped in a cardboard box in the attic where it gets forgotten.  In the antiques world, we have all heard, perhaps, of stories of priceless assets discovered abandoned amongst the detritus and unwanted artifacts that people have accumulated, and it seems that autistic people are being treated in the same way.  Overlooked, but priceless, nonetheless.  Dare I even suggest that we may be the next step in evolution?  Whether I am right or wrong, there is no doubt that we are awesome.  I found this reference to “AWEtism” online the other day on the website of an Australian organisation called the “I CAN Network” and think we could do with having more of this attitude in the world; we could certainly do with these kinds of mentoring approaches in the UK, as I never came across anything similar in my time as a teacher.  Often all it takes is for a few people to change their attitudes to spark a revolution, and with any luck, one is on the way; a revolution in the way we think about, and treat people who have so much to offer if they are not held back by being defined by a deficit model.

Useful references:

Elder Robison, J., 2011,  ‘Be Different: Adventures of a Free-Range Aspergian’ New York, Broadway Books.

National Autistic Society – http://www.autism.org.uk

I CAN Network – http://icannetwork.com.au

 

I Want to be a Librarian

Happy Easter everyone! It is so nice to have a long weekend, and being away from the office, I had cause to reflect on one of the great paradoxes I have faced in life – career choices and coping with the workplace. You see, having an autism condition is a bit of a “double-whammy”, so to speak. On the one hand, it is what makes me employable by turbo-charging my skill set; I have a law degree (in fact, I have one in two different countries), I am a qualified high school teacher, I speak a fistful of languages (not sure what the collective noun for languages might be – a gobful, perhaps??), I have a masters degree and experience in everything from finance, through to education, contract management and (even) relationship management (yes, your eyes do not deceive you!).

On the other hand, though, looking back over my career so far, I have never truly loved any job I have done since graduating from university. Sure, I was good at a load of stuff, and I can say with honesty that I really enjoyed some of the things I did, most notably teaching (lots of fun in many ways). But actually loving my role? Nope. There was always a really unpleasant pay-off between the things I liked about the role and the things that I didn’t enjoy. And when I say I didn’t enjoy something, take that as shorthand for saying that it could rule my life, with consequences ranging from poor temper, to insomnia, to tantrums in the workplace (never in front of my peers, though). In finance, I was really good at risk management. Having spent my entire life assessing danger – often too cautiously – I was a very good underwriter, if the goal was to reduce credit risk. Being target-driven, though, was really horrible. OK if you want to be a holiday rep, or a double-glazing salesman (and for the record, there is NOTHING wrong with either of these careers, for those who want to do them), but for me, it just caused interminable anxiety.

Teaching was great, with lots of routine and a chance to share the things I loved with others.  However dealing with parents sent me into a tailspin. I avoided it if there was a viable alternative that didn’t disadvantage the pupils in my care. The thing about teaching is also that it is never finished.   To a perfectionist like me, work always followed me home, I could never draw a line between work and home-life and the little things that upset me in the workplace (and that was a LOT of things, by the way) would take over at home. Seriously, when I lived on my own, I could forego an entire evening just recounting to myself everything that had happened to upset me that day, and practising how I was going to deal with it the next day. Nine-to-five? Fat chance.

My current role is more clearly delineated in terms of home- and work-life. However, more often than not, it is chaos, especially compared to the relative tranquillity of working to a timetable. As a teacher, I could tell you what I would be doing at 2.45pm on the second Wednesday in May. Now, I don’t even know what is coming in the next five minutes. To be fair to my employer, a number of long chats with my manager have been really fruitful in terms of helping to minimise the impact of the rather impetuous approach taken to policy and strategy formation, and things have really calmed down in the last year. Thinking back to my first six months in the role, there were days when even the journey to work would leave me with palpitations and a tight chest. Things are not quite like that any more and I have to pay tribute to my employer, whose default position with everyone in the organisation is to listen really carefully and actually take action to improve the lot of employees. Also, even to someone like me who finds socialising very difficult, there is no ignoring the fact that many of my colleagues are truly lovely people, when all is said and done.

However, working in the third sector, as I do, means that the methodical approach I had become used to in education, is no longer the norm; I have noticed that charities tend to attract people, all of whom are totally devoted to the cause, none of whom would intend to hurt others, but a large number of whom seem to lack a certain penchant for forward planning. As a result, having planned out my day, I still get emails at 8.30am, explaining that my presence is needed in a meeting at 10am, because someone has had a bright idea and needs my assistance to implement it by the end of the week (seriously – hang the budget!). Why me? Often, I am told it is because,

“You are really clever.”

“I need your analytical brain on this project.”

“We could do with a ‘finisher’ on the team; someone who will tie up the loose ends.”

Flattered?  Sure. In a way. It is really nice to think that people need you. I am not so sure, however, whether it is my attributes that are in demand here, or any attributes that will get the job done. Being a “finisher” often feels like code for “dealing with the awkward, fiddly tasks that no one else wants to do”. Having an analytical brain is OK, but, speaking frankly, if I am smart, it was not intended for your benefit, thank you very much! There comes a point where I just end up drowning in others’ demands, which is difficult anyway, but if you add the anxiety that comes with Asperger’s, and the associated fretfulness that accompanies dealing with other people, this is the kind of upset in my routine that makes me feel frustrated and taken advantage of. Ironically, my skills and dedication to detail mean both that I am most likely to be asked to do this kind of work, but least able to cope with the pressure that accompanies this sort of office onslaught.

So what keeps me there? More often than not, it is the money (my family rely on my income, and where I live, there are not many jobs that would pay what I earn now), the organisation’s willingness to listen and reform where it can (a sad rarity these days), the ability to work from home (where you cannot keep pestering me!) but most of all, an impending sense that this is actually as good as it gets. No matter how low the lows are, I don’t want to start somewhere else only to be worse off in terms of my ability to cope than I am now. There have been plenty of times when I have felt totally hopeless about it all; maybe I am just not cut out for a normal job.

However, I have to acknowledge how fortunate a “problem” this is to have. Huge scores of autistic people struggle to find employment, never mind getting a degree, so the fact that I have a postgrad qualification makes me a rarity on the spectrum, to say the least. Not that this makes me special. I am just really lucky – lucky to have had chances that others haven’t, lucky to have a well-paid job with a good employer, lucky to have access to learning opportunities that others are denied. So in that sense, I am really, really fortunate.

I have to say, though, that it does not always feel that way, when I am awake at 3am staring at the ceiling in my room, planning ahead, working out what I am going to say in the office that day, scripting my contributions to meetings, forging arguments that I need to make to defend my (or others’) position (why do we always need to fight to keep an even keel in the office, I wonder?) or calculating what I need to do to keep Person X off my case for another couple of days, while I finish off project work for Person Y. It doesn’t feel fortunate when I end the day totally strung out and looking for somewhere to have a meltdown. It doesn’t feel remotely pleasant when I am popping to the loo to throw up, because the upcoming meeting this afternoon has been bothering me ever since it landed in my diary, and I feel totally out of control at the thought of going into a small room with twenty five others who are too busy trying to make a name for themselves to think about the impact that their latest idea will have on those around them. It doesn’t feel great when you are too frightened to engage someone in a conversation because you are aware that you always say awkward or embarrassing things, or because you just don’t understand what people are trying to communicate.  And as for David Brent-style managerial rhetoric spewed out by incompetent people who treat delegation as way of hiding their own incapacity, and who have no other paradigm to work to, never mind the intellect to understand the words they are using – don’t get me started!

So, I am sorry if it sounds self-absorbed. I do realise how fortunate I am, but I just want to be honest about how it feels.   Maybe one day a work colleague will stumble upon this, and learn not to take for granted the idea that my verbosity and (so-called) intelligence are proof of my ability to cope. Sometimes, I just can’t, and I can’t help the way it affects me, either. So there.

I have often wondered what the perfect job might look like, if it existed. The last time I loved a job, it was when I was in the Sixth Form, studying for my A Levels. I had a Saturday job working in the cash office of a busy high street store. I balanced the tills, kept the books, and banked the takings. Nothing ground-breaking, but it has only just occurred to me how logical it is that this should be something I would enjoy; I got to lock myself in a room on my own all day, and count things, organise things, and keep things tidy, without any more than two or three interruptions in the whole day. Bliss. And I was really dedicated to the role. I once got my hand stuck down the back of the safe reaching for two pence that had gone missing and which had left the cash balance out of kilter. Two pence would not be enough to warrant the effort, for most people, but I am not most people, and I never left the cash unbalanced unless I had to. If I could earn what I do now, for the same kind of job, I would jump at the chance. Yes, job satisfaction would look very different, but I think I would be all the healthier for it. I might get more sleep, for a start.

Failing that, my back stop is to work as a librarian. I love books and read at least a novel a day. Social interaction is minimised, and libraries are not known for their chaos or any of the sensory overload that I am subjected to in my current role. Let’s face it, if the most stressful thing that happens is that a book goes missing, that is fine with me. I WILL find it, just like the two pence down the back of the safe. As for those who think I would be wasting my qualifications, think again. My masters would not go totally unused, being in the field of education (libraries do have an educational mission, in case you hadn’t noticed) and you can even do a PhD in librarianship. Seriously – check it out!

Or perhaps it is not my job that needs to change; just the way we ALL work.  I am actually really good at what I do.  I just wish it felt better.  I wonder what it might feel like if the challenges that autistic people face could be accommodated by a shift of focus and a shift of workplace conditions, like the way we organise open-plan offices, or the way we value verbal contributions to discussions over non-verbal communication, or even the way in which being a “professional” is equated with an ability to react without feeling intimidated, or ill, even.  My employer is actually really progressive, so if I feel out of sorts at work, I dread to think what it is like for others who are not as lucky as me.

I wonder, therefore, if it is not me that needs to change.  Sure, I could learn to be more positive about my traits, thoughts and feelings.  To be honest, I feel that I am learning to accept them more readily.  But I also think that the world has a lot to learn about not reducing professional expectations to a limited list of behavioural paradigms.  Until then, it is back to work tomorrow. Which reminds me, I have a meeting dialogue to rehearse….

First Visit to the Doctor

And we’re off….

I spoke to a lovely GP yesterday (yep – appointment on a Saturday, incredible) about my suspicions. To be honest, I was already nervous about speaking out as it was, other people not being my forte, so the thought of opening up to another individual, even a qualified professional, was not one that I relished.

I was worried that:

  • I would not be able to speak; sometimes, I just “clam up” if I am under stress.
  • I would fumble my words and not make any sense.
  • I would sound silly, and not be taken seriously.
  • I would say or do something inappropriate – see my Hitler-related faux-pas in my previous post.
  • I would get stressed if the doctor said something I disagreed with, ultimately leading to a tantrum.
  • The issue would be diagnosed as far more serious than I thought, and a psychiatrist called into service, meaning that I lost control over what was happening to me, because I was labelled as “mentally ill”.

Basically, as always happens when dealing with others, particularly strangers, I had entered “catastrophe mode” as every possible disaster under the sun, including my eventual sectioning under the Mental Health Act, was systematically considered and allowed to fester. So, I fell back on my old, familiar coping mechanism – the good, old-fashioned list.

I keep notes on everything, particularly if I am going to be having an important conversation. They would not make sense to anyone else, but they are a helpful fallback when it comes to my interactions with others. Despite my command of language, I am RUBBISH at speaking off the cuff, particularly if the subject matter is important in some way. So I rehearse the dialogue – not just my comments, but all possible responses and body language – in order to write down in advance all of the things I may need to say or do. Something then struck me. Am I writing to organise my thoughts, or am I writing to avoid forgetting something? You see, when I have control, my organisation and memory are generally excellent.

OK, strike that. Not always. When the routine works, my organisation is flawless. Furthermore, my medium- and long-term memory is excellent. My ability to cope with a break in routine, and my short-term memory, for the small number of things that aren’t part of my routine and which I don’t do repeatedly, are shocking. I once spent ages looking for my specs one morning, only to have it pointed out to me that I was wearing them. My phone, my wallet and my keys, the trinity of things I NEVER go out without (hence you will see me mutter “money, mobile, keys” as I leave the house), are similarly the subject of the morning hunt more often than I am comfortable with. I generally manage to put these things in a particular spot on my nightstand, and so I can find them fine, but sometimes, when I have been up overnight with insomnia I might move my glasses, or re-pack my bags, or check my phone, and, in my tiredness, put them somewhere else. Disastrous.

Disastrous because I then spend the morning in a blind (sometimes literally blind) panic searching for the essentials. This is a bigger problem than most neuro-typical people expect because:

  1. It upsets the routine – often not good for someone on the autistic spectrum.
  2. It raises stress levels and sometimes leads to a tantrum. I once broke two coat hangers in frustration when I couldn’t find my wallet.
  3. It raises the risk of running late, something I can NEVER tolerate. I will generally arrive at appointments 30 minutes early, to avoid being late, and to give myself time to find parking etc.

And so, I leave for work in a mood, which can last the whole day, particularly if others are “in my face” so to speak. Bad start, worse day, awful finish, interrupted sleep, insomnia – and so the cycle continues.

So, why, I mused, was I writing things down all the time? I figured it was as much a coping mechanism as an aide to organisation or memory. I simply don’t trust myself (with good reason, based on my record!) and so, committing things to a list takes the pressure off, by rendering the things I need to do and say immovable and therefore, under control. Even my body language improves, if I know what I am likely to encounter and how I should look, gesture, sit, etc. That’s not to say that lists are my only coping mechanism in this regard. I can learn based on previous encounters with that person (were they happy, were they sad, did they hug or shake hands?) and I find it helpful to have some rules that structure my decisions about how to behave (for instance, if you don’t work with me, but you are wearing a suit, I should shake your hand and say it is nice to see you; if you are a work colleague, I keep my distance and ask how you are).

But for people I don’t know, and whose appearance I cannot predict, lists are a good way forward. Granted, it may make me look odd, furiously writing down random notes that would make not sense to anyone else, but that is just me. I have taken to writing them in Welsh, to reduce the chance of others reading them, which helps a lot.

As it happens, I did not need the list when talking to the doctor. She was really lovely and reassured me that nothing I said sounded weird, and could all be explained. Obviously she could not give me a diagnosis, but said she would think about it and come back to me with some suggestions, as it sounded to her that I had an Autism Spectrum condition. In the meantime, she helped me to source a couple of useful websites, that can help with the anxiety (listed below for information). I will also make enquiries at work, about possible referrals via my private medical cover. One thing the GP stressed was that a psychiatric referral was a “no-go”. She just felt that this was way over the top, and was at pains throughout to say that whatever the issue was, she did not see it as a mental illness, just a way of living.   Most likely, I would attend an assessment with an Educational Psychologist, and that is probably the next step. It was a huge relief to have someone acknowledge what I was experiencing as “normal” and not an illness, and a real endorsement of the service I received from my NHS General Practitioner. There are a lot of horror stories out there about people’s treatment, but in my experience, nothing could be further from the truth. Whilst I still have a long way to go towards reconciling myself to the life I lead, and the way I cope with things, the journey is most definitely underway.

Useful sites:

Living Life to the Full – http://www.llttf.com

Anxiety advice via MIND – http://www.mind.org.uk/information-support/types-of-mental-health-problems/anxiety-and-panic-attacks/#.Vu6oizahvdk

National Autistic Society – http://www.autism.org.uk

 

 

New Beginnings

“There’s something wrong with you.”

I know….   I have a legal qualification in two different countries, I am a qualified high school teacher, I speak seven languages fluently, another ten functionally, I can read at a rate of a hundred and thirty six pages an hour, I have a masters degree and I am GREAT with words.  And yet….

All that skill, all that savvy, and I did nothing about the massive white elephant in the room.  What drives someone so smart to be so dumb?  Frankly, it was all about perception and self-realization.  My vocabulary and linguistic strength did nothing to enable me to explain to others that something was off-centre, because I had not been able to disclose it to myself yet.  I speak Welsh, French, German, Spanish. And yet…..

Yet, I don’t understand meanings, faces, intentions, justifications.  People are such a mystery to me that I would rather pretend they don’t exist.  I am better-off without others.  Or so I thought.

I had my first encyclopedia at eight, but I had been reading for facts long before.  Facts and figures about countries and political systems, facts about bureaucracies, cultures, religions, flags.  I loved figuring things out, classifying, organising, explaining.  The whole world was so full of things to explore from my own bedroom, I did not need to go “out there”.  “Out there” was full of people who asked stupid questions about things I had taken as fact for years; what comes after ten, what happens after you die, what comes after town, county, country, why are there more male than female drivers on the road around here?

I had taught myself to count to a hundred at the age of three and a half.  At the bottom of my grandparents’ garden, next to a plot of Sweet William was a rotary washing line with yellow twine, a grey pole and a locking mechanism at the top connecting the pole to the washing line itself.  At the foot of the pole, on the lawn, were four stepping stones, laid in a square formation.  I used to step from one to the other, going round in a circle, for ages and ages.  And one day, as I did so, I counted.  Eleven, twelve and thirteen, I learned listening to my mother.  The rest, I figured out, stepping around and around and around; I had also managed to figure out that from one to a hundred, I had gone around all four stones twenty-five times, thus engaging in my first bout of division (although I didn’t know it at the time).  I am not sure what is more bizarre – the fact that I had figured it all out before even starting in school, or the fact that, as others my age played with cars and trucks, I was quite happy going around and around, counting up and up.  I didn’t bother with 101 and beyond.  I knew what came next and there was so much more to go figure.

The philosophy of life after death, I had worked out on the school yard at the age of five.  Of course the ghosts of hallowe’en and the angels of the nativity had to come from somewhere, and, when people died, they had to go somewhere.  Made total sense – the mind could not proceed from the body, nor the body from the mind, so they each had to go somewhere.  No proof, but hey, who did I need to prove anything to?  No one else really got the point anyway.

The Christmas I received my first globe – a lamp that illuminated such counties as Australia, Yugoslavia and Lesotho – I had confirmation of the theory that I had been playing with a year before.  After my estate, came my town.  After this, my county, my country, my continent, my planet, my solar system (nine planets as they were then- knew them all), the milky way, the universe.  Then what?  More universe, of course.  I knew this six months later because  I took on the habit of dealing with my insomnia by sneaking around in the early hours on a Sunday morning, to watch the astronomy programmes broadcast by the Open University (I was six and a half), on the television set that my parents bought for my bedroom.  The universe was either infinite and extended on forever, or else it was curved, and turned in on itself.  Frankly, I plumped for the latter, the planets going round and round again, just like I had on my grandparents’ stepping stones, but I figured it would not matter anyway, as we would all be dead (and thus ghosts and angels) before we ever had time to figure it out.   Thus was born my first, explicit encounter with philosophical pragmatism.

It was this kind of pragmatism that explained why there were more men driving than women, where I lived; there were more men in paid employment.  They needed some means of getting to work, so they had to drive.  Women, generally, got on the bus, where I would sit, with my mother and sister, on the way to town to go shopping (Kia Ora drink and toast or a sausage roll from Merrett’s café – now Greggs – before going to get the bus home).  And so I made my first encounter with social inequality – I was five.  Men get to drive, women catch the bus.  Imagine my fascination when we had new neighbours, and the lady could drive!  Incredible!

The encyclopedia I still have on my shelf at home.  Frankly, however, I would not need it, to remember what was in it.  Information about the human body, ancient civilizations, mechanics, astronomy.  My favourite, though, was a section on cultures, containing a vocabulary list of words in Chinese, Hindi and Japanese.  I learned them by heart.  Memorising stuff was easy.  I could follow patterns, no problem.  Languages would become a lifelong passion; I can learn a new language from nothing to fluent in approximately five weeks.  I was eight when I got my encyclopedia; a book my parents bought me because my teachers had told them I was “gifted”.  My spellings were impeccable, I could hold facts in my head, and I asked questions the others wouldn’t.  I needed, therefore, stimulation and encouragement.  Sometimes, I think it was simultaneously a shame and a blessing that no one added diagnosis to the list.  My precocious nature was all-pervasive.  I remember, for instance, writing musical notes on an “ET” notepad, sitting in front of the TV.  My mum and dad showed Mrs Brown, a teacher at school.  I was six.  By nine, I was writing my own stories (eventually writing my own porn!) and had already been advanced a year at school.  A real privilege.

Except it wasn’t always.  I had friends – I worked out that there was probably life after death whilst playing with the others on the yard (actually, they played, I just ran or galloped, I loved running and counting my steps, and still do).  Being honest, however, I didn’t interact with friends very well.  I didn’t understand what they wanted, or have the same experiences they did. I was also horribly blunt sometimes; vicious, even.   Get in between me and my plans, my routine, and it was not pretty.  I once stabbed a girl in the arm with a pencil because she was getting on my nerves and in my way.  On those days when my father would be late home from work, the unsettling feeling this caused meant that I would sit in the passageway at home and cry and scream to the point that I remember my mother asking me once, in her exasperation, what was so wrong with her that I only cried for daddy (she had totally missed the point – I was crying for my routine).

I HATED being pushed and prodded into doing things that I didn’t want to do.  My mother’s constant, well-intended attempts to ensure I got out and played with others had some success – I got out, and I did things with others, but I was never comfortable, and, although I never said it, I was always extremely anxious.  I could copy the other kids, and act as they did, but I always managed to say the wrong things (I once accidentally shouted “Hitler” at a barbecue – in Germany).  I was awkward and my childhood painful.  I couldn’t kick, throw or catch a ball properly because my coordination was horrendous.  Days when we had PE in high school were tumultuous.  I would always claim that I was ill, to get out of school, and the arguments with my mum were electrifying in their intensity.

My handwriting was poor, I cannot draw, it took me five attempts to pass my driving test, and I gave up the chance to audition for the National Youth Orchestra of Wales, because the thought of having to compete with others, and perform on command in the audition, made me physically sick.  Literally.  The anxiety of going to a fancy-dress party for Hallowe’en was so great, I was literally ill and we had to call it off.  I still remember the trouble that caused – my sister crying, my mother locking me in my room and telling me “There is something wrong with you.”  Even the next day, I was so ill, I puked green vomit into a sink at a local department store.

Playing imaginative games with friends was pointless – I knew it was fake.  I also knew that my imaginative friend, Geoffrey, was fake.  This wasn’t pretence on my part, it just meant I had someone to reason with who saw things my way.  To this day, I still reason with myself, talk to myself, interact with myself – a modern-day version of the Geoffrey I learned to hide because others in the family made a big deal about it, and my shyness meant I didn’t want the attention.  Geoffrey was definitely non-existent.  I knew this because he didn’t look like anything – he had no appearance to me.  If he had, I would have known.  I remember all sorts of things – not just that they happened.  I remember how they felt – I can ACTUALLY re-feel them now.  I can re-see the colours in the carpet in our living room at home, re-smell the soap in my grandparents’ bathroom, still re-taste the Merrett’s sausage roll and the the green vomit in the department store.  When I recall singing “She’ll be coming round the mountain” with my dad at the age of three, sitting in the car in the car park where my mother worked, waiting to pick her up, I am actually still there, in my head, to the point I can even see which space we were parked in at the car park.  On those nights when I cannot sleep (viz. most nights) I can turn on my internal IPod.  I can re-play music and radio content in my head – no need for headphones.  Just this morning, I was re-hearing Toto’s “Africa”.  It was forty-five minutes before I noticed I was drumming out a bass-line with my molars.

Yes, I am weird.  By your standards.  Maybe.

So how-come no one picked it up when I was little?  Were my parents neglectful?  Definitely not.  I was raised by some of the most loving people in the world.  They just didn’t know what was happening.  My mother’s exclamations that something was wrong with me were not taunts, so much as expressions of her worry and lack of understanding.  To top it all, these were not statements that a toddler should have understood her saying at that age, anyway, let alone remember for the rest of his life, so how was she meant to handle this bizarre situation differently?  My dad often told me that my hand would drop off, because I would not wear my wristwatch without having it skin-tight.  This was not an attempt to upset me; more a warning that I didn’t need to have everything “just so”.  My clothing was always immaculate.  Shirt and tie always done-up, shoes clean, not a hair out of place.  On the day pupils “chalked” my black blazer on the way home from school, I was distraught – I went to my room, out of sight and had a massive tantrum.

And that also explains why nothing was done until now.  So worried was I about standing out, I had learned to bury the most extreme elements of my odd behaviour by the age of eleven.  In addition to this, being gay meant getting used to keeping parts of my life secret.  If I felt uncomfortable with others due to my autistic behaviours, I actually explained it away by telling myself it was a product of living in the closet.  My tantrums were buried until I could get to my bedroom, my sanctuary.  Even now, things get “damaged” at home, and I cannot explain to family how it really happened.  I am not lying; I always say exactly why the baby-oil got splashed up the wall on the staircase, or why the tile in the kitchen is chipped – it was an accident.  I just cannot disclose any more the finer detail of what led to this “accident”.  Conforming has become the norm, and so I have never been myself, since I was nine or ten.  If you see me driving around in a car, looking like I am talking to myself, I actually am talking to myself; talking about the unfairness of our political system, the impoverishment of Welsh cultural heritage by unionism, the way I feel about the way I am treated at work or at home.  I could never do that in front of witnesses, but I do it when I am on my own, all the time.  I NEED the outlet, because I need to discuss things that others are not interested in.  I secretly think my mum and dad knew that something was up, but it was hidden by other more pressing matters.

I was clever – the first person in my family to go to university.  Admitting that something was wrong could bring all that down.  So I kept it hidden.  My status as a loner grew from a “geekish” or “mawkish” personality that others learned to accept because I was clever, and thus interesting to them.  So  no one ever really questioned whether something bigger was at play.  Not even me.  I had not joined up the dots (and I was clever) so why would anyone else?  There was always another reason – my sexuality, the bullying at school, our social status….  I did have (secret) counseling at university.  The transition of going to uni and then having to find a job was so awful that I eventually thought of downing a bottle of paracetamol with a bottle of vodka, and so looked for help then.  Aside from unpicking my uneasiness with endings (rather than endings AND beginnings) the counselor never really picked anything meaningful up, because it could always be explained away.

Just over a year ago, more than three decades of feeling at odds with the world led to one inexorable conclusion.  Something (else) was wrong.  It has taken until now to book an appointment with the doctor to examine:

  • My incessant internal monologue.
  • My fascination with details and lack of perspective.
  • My “visual” acuity and preference to store information in images.
  • My alternate tendency either to refuse to take part in a dialogue or to keep talking at length such that you will not get a word in edgeways.
  • My difficulty in understanding what others want and think.
  • My lack of any real empathy for others and impatience for their emoting with each other.
  • My frustration that I never get on as well in life as others, because they can network (nepotists!) and I cannot.
  • My social awkwardness.
  • My inability to speak and interact “off the cuff”.  Almost every meeting I have is prepped in minute detail, otherwise I will stammer and stumble over my words.
  • My insomnia.
  • My tantrums.
  • My discomfort with noises, feelings and sensations that make me angry and nauseous.
  • My constant feeling that I am out of sync with the world.
  • My ability to live all in my own little world, for days on end (I go for months without calling friends, because I am busy working on my latest idea).

I, naturally, have done my reading.  I think this is Asperger’s Syndrome or some other neuron difference on the autism spectrum.  Suddenly it all makes sense.  And so I am going to seek my doctor’s advice and hopefully, get a diagnosis that means I am not a freak or a monster anymore; just a perfectly normal Aspie, with a unique way of seeing the world and of problem-solving.  Of course, I am ready to hear that it is something else.  I just want to give it a name and an explanation.  Give something a name, and you control it.  We’ll see.

Here goes.  Wish me luck.