A diagnosis of Asperger's? Part Five

Talking to someone with Asperger's must be maddening at times, especially if they are having an off-day and their usual coping mechanisms are playing up.  You see, for high-functioning Aspies, it is often the case that their condition is pretty much invisible to the people around them as they have become so adept at reading situations and hiding their discomfort (all at a cost - it's exhausting as hell).  Occasionally, however, these long-developed mechanisms and techniques can suddenly fail.  Being ill with a bad cold, having a chronic headache, having to deal with just too much stimulus can all leave a person with Asperger's naked and vulnerable, and leave the people around them confused and upset.  But how do these strategies get learned in the first place?

I know for a fact that a great many people I know would be sceptical or even dismissive of any suggestion that I have a condition as pervasive and seemingly-obvious as Asperger's.  All my life I have managed it too well.  Asperger's often has little impact on a toddler, and language can often be learned at the usual rate.  In children it can manifest itself in meltdowns (outbursts where things get too intense and the individual struggles to maintain control) or in poor behaviour in school but just as likely it can lead to nothing more unusual than a quiet child with a few close friends who simply doesn't tolerate anything unusual, noisy or chaotic - in short, people with Asperger's can go their whole childhood and teen years without a diagnosis, all the while finding ways and means to offset the constant anxiety, social difficulties and emotional exhaustion.  Twenty or thirty years of practicing and refining these skills (still much more conscious and 'forced' than a neuro-typical's social behaviour) can make an Aspie blend in, disappear, until something happens to strip them of their armory.

This is how I think it panned out for me.  I reckon that for my whole childhood I just 'got on with things' and simply avoided anything that I knew would make me anxious or uncomfortable.  I think I assumed everyone was the same, that anxiety was a constant state of mind for all of us and that therefore I should just live my life.  I spoke only to people I wanted to speak with, and these were mostly people who shared an interest.  I am told I was often thought of as rude or even ignorant as I would refuse to respond to questions or small talk, even at the age of eight or more.  I certainly only ever wanted to be left with my solitary hobbies - anything dragging me from them (school, trips out, holidays) I actively despised.  School became tolerable only because I was good at it and everyone seemed pretty happy to leave me alone (a miracle that I am thankful for).  In fact an abiding memory of my GCSE years was a particularly cruel set of caricatures that one of the form's more artistic members had drawn up of the whole class.  Some were truly vicious and even alarming, but mine was simply a man standing by a fireplace, pipe in mouth, neutral expression.  Thank goodness for that, I say.

So I learned to get by and always had a small coterie of friends (most of whom I have lost contact with - I am dreadful at maintaining any but the closest of relationships).  I have no idea how I was viewed, or whether anyone thought I was 'different' in any way, but certainly all was as well as could be expected.  It was the much, much later triple whammy of becoming a father, being made a middle leader and suffering from depression that tore my defenses from me and left me trying to figure out what the strange being within this lost cocoon was, and how it worked: suddenly I found myself struggling with conversation, always deeply confused by missed implications or body language.  Teaching, which had been paradoxically quite a successful career path for me, given that I was so accustomed to acting and being hyper-aware of my interactions, was suddenly impossible.  I had time off.  I gradually recovered and learned more about ASD, leading to my situation right now.

My armory is being repaired and renewed these days, and I am increasingly like my old self, most of the time.  But it has been quite an experience and not one that I would care to re-live.  Asperger's does not have to be a curse at all; all told I am probably glad that I have likely grown up with it as it has given me so much to be thankful for, but it can spiral quite badly and an awareness of this for both Aspies and their loved ones is of great importance.

A diagnosis of Asperger's? Part Four

If you've been reading my blogs and thinking 'goodness, this sounds just like me!' then it may well be that you fancy taking this a little further and discovering a little more about ASD and Asperger's in particular.  That was certainly my first step.  However, like OCD, ASD is notoriously easy to self-diagnose based on a few character quirks that are actually relatively common in the general population, so it is important that you tread carefully and don't make too many assumptions.

Minas Tirith in Minecraft.  Just because.

Generally speaking, a diagnosis is only ever going to be helpful if you are finding your ASD traits to be impacting on your life in a detrimental way, or if you have a real need to know the truth behind your inability to operate as everyone else seems to.  If you are happy and getting on with life merrily, then it may not be worth the time and effort of getting a formal diagnosis, despite having some tell-tale symptoms.  However, if you're having significant difficulties in your relationships or at work, say, then it could be a good idea to look into it a little deeper and see if you fit the criteria.

There are many pretty poor quality 'ASD tests' out there - so many that it seems pretty likely that self-diagnosis is very common and possible even (shudder) 'cool'.  This is certainly something that the Aspie community is very wary of, and on forums it would be very wise indeed to know your onions and to have really made sure you are not just a bit shy before wading into conversation.  I have several questionnaires that I can recommend, if only because they are respected by those that actually make the diagnoses; these questionnaires are lengthy and requ
ire real effort, but are likely to give you a clear indication of whether it is worth pursuing a diagnosis or not.

My favourite, and the one that has been used during my current diagnosis (even though I'd filled it in online before) is the 'Ritvo Autism-Asperger's Diagnostic Scale - Revised' or RAADS-R.  This questionnaire differentiates between you now and you pre-age 16, as it takes into account that people on the spectrum often manage to teach themselves ways to cope, meaning that significant symptoms as children vanish in adulthood (well, not vanish, but become hidden).  As such it is more thorough than other tests, and at 80 questions long it's pretty intense!  Answers are a choice between:

a) True now and when I was young
b) True only now
c) True only when I was younger than 16
d) Never true

Here are a few sample questions:

1. I am a sympathetic person

2. I often use words and phrases from movies and TV in conversation

10. I always notice how food feels in my mouth.  This is more important than taste for me.

22. I have to "act normal" to please other people and make them like me

29. Some ordinary textures that do not bother others feel very offensive when they touch my skin

40. I can see in my mind in exact detail things that I am interested in

As you can see, the questions take in every aspect of ASD, including the lesser known sensory experience.  This can include an intolerance of slight warmth, meaning that cool temperatures have to be constantly sought, or strange changes of intensity of sounds that are actually remaining at a constant volume.  Somebody with simple introversion tendencies would score pretty low on this questionnaire.  Once you've filled it in, it places your results against the body of results and against those scores that seem to indicate ASD.  Apparently a score of 140 or more is highly suggestive of ASD; I got a score of 187...

The Empathy Quotient test is another fairly standard one that can be completed online and that you may well be asked to complete as part of a formal diagnosis.  This focuses on human empathy, of course, so avoids those other symptoms that RAADS-R explores, but raises some intriguing questions including my favourite: "If someone asked me if I liked their haircut, I would reply truthfully, even if I didn't like it."  Obviously this is less useful for adult ASD as we will often have developed coping strategies from past experience, ie NEVER TELL THE TRUTH ABOUT SOMEONE'S APPEARANCE IF THEY ASK!!!!!  No doubt this rule will be over-applied, as it is impossible for someone on the spectrum to tell when a person is genuinely concerned and not fishing for compliments.  Hard times.  But, the EQ together with RAADS-R are a great starting place if you are wondering.

After that, a trip to the GP and a request for a referral should be undertaken if you are sure that you want to make that journey.  Obviously the GP will need plenty of reason to direct NHS funds your way, so ensure you know what you're talking about and can give a detailed explanation of why you feel a referral is required.  My GP was extremely understanding and referred me quickly after I explained it all, but then this was after a year or so of speaking with her about anxiety and depression so I suppose she already had a lot to go on - being over-prepared wouldn't be a bad idea.

Good websites and forums:

Reddit's Asperger's subreddit - make sure you know what you're talking about!
The National Autism Society - useful info
A blog - 'Life on the Spectrum' with fascinating insights

A diagnosis of Asperger's? Part Three

Being obsessed with something can be great fun.  It means you never get bored of it, and it becomes a tremendous comfort to indulge in whatever the obsession may be.  I think everyone has the capacity to be so interested in something that the associated behaviour becomes a little obsessive, but with ASD things tend to go quite a lot further (as is something of a recurring pattern here).

I have always had the tendency to become fixated and obsessed with things, usually activities or objects or ideas, and I think I assumed this was the case for everyone as I grew up, mostly because I hung around with people who shared my interests.  However, even at an early age it was clear that other people got bored of talking about our shared interests way before I ever did.  In fact, I never bored of it, as far as I can tell, though it's hard to test as people willing to discuss Sonic the Hedgehog 3 and Knuckles are few and far between, especially these days.  And so, like with everything else, I learned the 'correct' way to do things, and accepted it when friends wished to change the subject, albeit deeply grudgingly.  Even now, an opportunity to talk at great length about my favourite things tends to become something of a trial for the other person, as I simply won't stop unless it is made very clear to me that I have to.

As I have got older this tendency has not diminished at all.  I think I thought it would; I think I thought, as a child, that adult-me wouldn't want to talk about Lego or the Titanic or steam locomotives or Warhammer all the time.  How wrong I was.  I still have the need to talk about my obsessions, only not many outlets save for online discussion (Reddit is a life-saver).  Recently I added this 'quirk' to the rapidly growing pile of potential symptoms, finding it a key element of ASD.  But how does this obsession manifest itself, you cry.  Well, I can only speak for myself but here goes:

My attempt at Lincoln cathedral in Minecraft, mostly from memory

An obsession for me can last anything between a week and thirty years.  When an obsession is 'current', i.e. in the forefront of my mind (which can last months at a time - long obsessions tend to wax on and wax off intermittently) then it is always jostling and fighting to be thought about.  It is screeching with its hand in the air, 'ME!! Think about ME for a while now!" no matter what else I am supposed to be doing.  It will burst into my consciousness during a lesson, for example, or during a conversation.  As well as being irritatingly intrusive, my obsessions can be comforting, especially if left to indulge in them in absolute peace.  So, for example, I will allow them to fill my mind when I am doing something dull, such as waiting for a train or on break duty at work, and this makes me feel very relaxed, almost to the point that I see it as a sort of mindfulness, only very internal rather than external.  What the obsession is in will vary, but for me there are very definite trends and patterns.  The ones that are longest lived are my interest in the Titanic, which started at age 8, my deep immersion int he world of Harry Potter, my love of trains, Lego and specific video games, and my utter obsession with architecture.  This last one is the most useful and interesting, as I find myself studying the form and design of any building I find myself outside or inside of, considering its building materials, layout, style and a host of other things, mostly instinctively - there is no effort involved.  I think this is why Leg

My Minecraft Titanic Boat deck - yes, it's to scale.

o and more recently games like Minecraft have taken such a firm hold of me - they allow me to express this deep obsession at will, and as such I have built thousands of wonderfully intricate and architecturally pleasing constructions with both media.  Of course anyone can have a fascination with something, but for me, and the reason I see this as a possible symptom of ASD, the instantaneous 'scanning' I do of a building or set of buildings, the unbidden ideas and thoughts that spring to mind and the fact that I could easily sketch a pretty accurate drawing of said building after only a minute or so's study all point to this being a rather stronger act that simply being interested by something.  I can't control it, and if in a place I find uncomfortable or disagreeable I will take great comfort in studying the architecture around me, identifying hidden buttresses, flues, corbels, architraves, gable ends and so on.

I will never forget some of my stronger, shorter-term obsessions.  One was with World War One after visiting the battlefields of Belgium and Northern France.  This lasted about 6 months and was one of my sole interests for that period: I absorbed as much about it as I possibly could.  Another set of memories are my strong and very fond times spent with certain video games.  This obsessions can be intensely strong, and are most likely to be unwanted and intrusive.  Video games are addictive enough without having traits of ASD, so I tend to find myself daydreaming vividly about my current favourite game.  Long meetings at work have been the crucible for complex designs on Minecraft, French lessons when I was a kid were an opportunity for me to draw out the whole map of Donkey Kong Country 2: Diddy's Kong Quest and train journeys even now allow me to relive entire video games from beginning to end, if I let them (eg playing the whole of Sonic the Hedgehog through in my mind - yes, it's as pointless as it sounds).  All of this is both annoying and relaxing in equal parts, dependent on context.

So yes, I'm afraid that if I speak to you there is a very, very good chance I will be simultaneously thinking about Pacific locomotives of the 1930s or the last level of GoldenEye on the N64, and no, this is not going to have a massive effect on our conversation other than the likelihood of me occasionally seeming a little distant.

A diagnosis of Asperger's? Part Two

Lots and lots of people are socially anxious, and lots are introverted.  This does not mean they are on the autistic spectrum at all, and for years I assumed this about myself.  Socialising has been a major part of my life, but not in any way as much as for most people who have been to university and been in a gigging band - I tended to socialise as little as I could get away with whilst maintaining an air of reasonable normality.  The fact that I really love the taste of beer helped a lot too!  But I always had myself pegged as an introvert, assuming that terror and stress in social situations was pretty normal for everyone.

For someone with Asperger's, it is common for social situations to cause intense anxiety and even pain.  Making small talk and 'chatting' is something that does not come naturally, and the prospect of being around strangers (especially strangers whom one is expected to 'meet' and 'talk to') can be extremely problematic, often creating a fight or flight response to the stress.  As such, parties and other gatherings are anathema.  However, it is possible for well-established routine socialising with a small bunch of people in the usual haunts to be far more attractive and successful; throw alcohol into this mix and someone with Asperger's can make a decent fist at a night out (it's interesting just how often drink and drugs become a crutch for people with ASD - it makes perfect sense, when you think about how alcohol is used by just about everyone as a 'social lubricant', so those with ASD find it particularly handy.)  But a 'big night out', or a dinner party with acquaintances will be an utter nightmare.

The myriad issues that can crop up in social situations are worth looking at in some detail.  The biggest problem is not having an automatic, instinctive knowledge of how to act in social situations.  I genuinely view people with social confidence as if they are a different species.  It makes no sense to me how they are able to talk and be like that, so a two-fold thing occurs.  Firstly it can create resentment and even bitterness - 'it's not fair that these people find all this so easy'.  I think this is what led me to utterly despise the confident sporty people at University - it just didn't seem fair that they could be so at ease in any social situation!  The other effect is stranger, and is to do with a very common strategy employed by Aspies in particular - acting.  Socialising becomes an intense bout of Daniel Day-Lewis-esque method acting.  All the social cues and scripts that have been absorbed over the years help me to say and do the right thing when dealing with people 'en masse'.  Even films and TV shows can be dragged into the mix, as lines or reactions seen on telly become learned behaviour as it seems to work with people.  This was the symptom that really piqued my interest about six months ago, as it was something that I was hyper-aware that I did.  It's not just quoting TV shows - that's great fun when with the right people and is just an exercise in common humour; it's deeper than that.  It's scanning one's brain, looking for the right facial expression or bland comment to get you through the next chit-chat, stealing them wholesale from often quite obscure sources (often those shows or films that you've had a deep obsession with).  I know for a fact that I over-rely on several TV and film characters, but I will let the people who know me figure out who they may be.  Asperger's leads to a social life that is one long and tortuous performance, in the spotlight, with high stakes should anything go wrong.  It's small wonder that Aspies are so keen to avoid it.

When things go pear-shaped, then the fight-or-flight response can kick in.  I can't count the number of times I have abandoned a social occasion, usually abruptly and very often for no externally discernible reason, simply because I had to.  I have found myself wandering around cities after midnight having bailed (often without informing friends, as that confuses matters), deeply immersed in the sudden comfort of being alone in an empty place.  Now I am having the assessment, I have found myself looking back over my entire social experience and realising that this was the thread that linked all my peculiar behaviour together.  I'm hopeful that if I am diagnosed, then I will be able to manage a little better, as I'll know that those close to me will know about it too, and will understand, rather than be confused, hurt or cross!  But nothing can quite communicate the sudden and wonderful relief of leaving a social occasion - even one that is very enjoyable, with close, good friends - and wandering home alone in the cold dark with nothing but my own thoughts. This does not mean I hate socialising with friends - I actually love it, within strict parameters(!) but it does mean I am always grateful for the last orders bell.

A diagnosis of Asperger's? Part One

I have always been rather introverted.  I say 'rather' with a sense of grim irony, as I am in fact deeply, painfully introverted; this may be surprising for those who know me, but I have always found social situations exhausting and generally stressful, even with close friends.  I have managed to keep it pretty well hidden, I believe (though it's possible I may be wrong and everyone I know has always had me figured out!) and maintained a 'front' of being reasonably sociable and even lively at times.  However, I had never really considered this as anything more than a fact of life until quite recently: I guess I assumed everyone was the same.

My pride and joy - just for illustrative purposes

Then a few things happened in concert.  I became a father and a leader at work in the same year.  I won't go into details, but these things combined convinced me that perhaps my way of viewing the world and going about my business was a little different.  I'd learned a lot about Autistic Spectrum Disorders from teaching and getting to know various students with the condition and so I decided to see if I fit the criteria.  Lo and behold, a few free online clinical-style tests gave me a 'woah mamma' conclusion.  Apparently I wasn't a bit on the spectrum: I was in the pot of gold, so to speak.  Fascinated by this, I asked my GP for a referral to an expert; after describing my symptoms she referred me without hesitation, barely questioning me at all.  I am now in the middle of the diagnosis process.

In Wiltshire (different authorities do things differently) the diagnosis consists of a three-part assessment, each appointment lasting 90 minutes.  Along with this, questionnaires are completed (interestingly identical to those available online - the RAADS-R test among them) and parents/loved ones are asked for their take.  At the end of the assessment I will be emailed (not phoned, obviously!) with the results, and right now I have no idea what I want to happen.

On one hand, getting a diagnosis would explain an awful lot, and presumably give me some peace of mind.  On the other, I am afraid it will allow me to 'relax' into it, and this would not necessarily be a good thing.  I have made a reasonable job of my life, and have a good job, a wonderful partner and daughter and plenty of Lego, and much of this is down to my ability to hide how I really feel and react to the world.  I worry that if I relax, and 'let it all hang out', then problems may ensue.  Time will tell.

Anyway - the purpose for this rambling introduction is that I wish to begin a series of blogs about the diagnosis process, what it is like to hide the symptoms of Aspergers and how it is that I can be a reasonably successful teacher and middle leader with the condition.  Of course, I may turn out to not have the condition (or at least not sufficiently enough for diagnosis), but I believe a blog exploring my experience could be useful for anyone who feels similarly about themselves, and it may give the wherewithal to get a diagnosis for themselves.

And so, I shall leave this for now but I will follow up with Part 2 soon, which will hopefully be concerned with social anxiety and difficulties.

Pete