Sunday, 31 December 2017

Parenting with Autism - Part One

It was becoming a father that set the ball rolling for my eventual diagnosis with Aspergers.  This transpired through a number of different channels.  One, which I will explore in Part Two, was the way that fatherhood effectively obliterated my safe and steady routine that I'd developed over my adult life, exposing me to painful levels of spontaneity and change.  Two, I had a new person in my life, and for the very first time ever I had met somebody that I felt utterly relaxed round.

I may sound extreme but it's very true.  Up until the birth of my daughter I don't remember a single person who I have felt entirely at ease with, entirely chilled out and happy.  Of course, for the first 32 years of my life I had no idea this as the case, as I had nothing to compare it too - having never experienced peace with a second person I didn't even know it existed as a concept; I assumed (I assume) that this was how everyone felt; that everyone was on edge even with their closest friends, that life was inherently stressful when other folk were around.  How wrong I was.

Spending time with Poppy, even when she was very small indeed, gave me an insight into what life was like for everyone else - I just didn't know it at that early stage.  All I knew was that for some reason I could be myself around her, and this never changed.  As she got older and more communicative, I could still be myself with her, and she didn't drain my energy like other people did.  Even now, as she approaches three and can be very dismissive of people, places and things, I still feel totally relaxed around her.  It's a combination of not having to mask or camouflage for her, but also not feeling the rapid-battery-drain of social interaction when I'm around her.  This was so novel that it made me take stock and reassess - clearly there was something different going on here.

I did my research and lo and behold, an affinity with one's own child that feels different to every other social relationship is a typical sign of autism.  And of course I'm aware that all people feel a special bond with their child - I'm talking about something different - a sense of acceptance and calm that isn't the same as deep, unconditional love (though I have that too).  This discovery was the final push I needed to getting diagnosed, and now I am very interested in identifying exactly why it is that an autistic person's offspring is so unique and untaxing.

A short one tonight - it's New Year's Eve - but I'll write Part Two within a few days.

Saturday, 23 December 2017

Christmas and Autism - some advice

First of all, Christmas is a potential nightmare for autistic folk. The lights, noise, Slade, too many people squeezed into a front room, drunk people - it's a recipe for utter misery for some autistic people, children and adults.  
They will need, first and foremost, and escape route from any busy locations, especially places they've never been before. But it's not enough to have a way out ready - people have to not make a big thing about them disappearing for a while!  Nothing is worse than the rest of the group making a song and dance of the fact you need some air. Ideally you should be able to slip out unnoticed or at least unrewarded, so you can then slip back again.  It is also very helpful if people allow autistic friends and relatives to skip some segments of festivities. Offer it, especially to children who may be too scared to ask - 'if you need a break, you can pop upstairs and chill for a bit if you like'. Leave it up to them. 
As far as possible keep routines normal on Christmas day, or if you have established Christmas routines, don't deviate from them as an autistic person will rely on them to help them handle everything else the day brings.
Buying presents *may* have been extremely challenging for an autistic person as it's hard for us to imagine whether our idea of a cool pressie is your idea of a cool pressie! Just be grateful! 7/?
Christmas can bring a halt to an autistic child's engagement with their interests as other things will be expected of them. Trouble is, their presents may well be part of their obsession, like a new video game. Likelihood is that them finally having the thing they have wanted for months, coupled with not being able to play with it, will lead to meltdown (and bloody rightly so). So be mindful of this and structure the day so they have an opportunity to indulge in their favourite hobbies. But yes, it is Christmas so you may not be happy with your son, daughter, spouse wandering off to play Counterstrike all day, so set clear time limits and expectations. Surprise gifts may be a bad idea. Surprises generally are not always welcome for autistic people, so bear this in mind. just coping and trying to show gratitude for a clearly unwanted present is really hard work. 
Don't forget that autism continues into adulthood and never disappears. You may have a loved one who manages to camouflage their autism, but remember that this is *exhausting* for them, so give them a break from time to time and let them be themselves.  A few small tips: have single coloured, non-flashing/winking Xmas lights; too many decorations could be overwhelming so tone it down a bit (this may help anyone, to be fair); DON'T ARGUE, even if it's traditional! 
Listen to them. It may not interest you to hear about the minutiae of how the Imperial Guard field the best tanks, or how many species of elm there are, but this is important stuff to us and we just want to be able to share it. 
Autistic people will often have small coping strategies that are physical in nature, like twirling a pen, drumming with their hands, rubbing their feet together. The older we are the more subtle it will be. Do NOT comment on it as it'll make us feel silly. These movements are called 'stims' and they can keep us nicely grounded and calm. It's not that weird really - most people have go to tics and habits when nervous after all. Children may have quite obvious or 'odd' stims but give them a break!  Stims will be particularly useful over Christmas as it's so damnably stressful, so expect them and accept them. Same with comfort blankets and toys/trinkets. I usually have a lego minifigure in my pocket, for example. 
It is possible that the extra people, lights, food, noises, expectations and lack of ability to use coping strategies will lead to burnout, or a meltdown. This is where our stalwart efforts to stay cool are overcome by stimuli, like Orcs at Helms Deep.  Everyone experiences this differently but a meltdown can be, for the person living it: terrifying, panicking, totally exhausting, embarrassing, even dangerous (think hurting yourself). It's bloody horrible.  For other people around a meltdown, it can be scary, upsetting and a real downer on the mood generally. But remember, it is WORSE for the person having the meltdown, so be kind and minimise their sense of embarrassment. 

Tuesday, 21 November 2017

Autism and Camouflage - how girls with ASD can keep it hidden from sight

This week I have been learning about the concept of 'camouflaging' as a technique used by autistic people to get by in the world of neurotypicals.  It has been a real eye-opener, not least because it's blatantly obvious that this is the very method I have used to get through my life to date.

Also known as 'compensation', camouflaging is the term for how autistic individuals manage to hide or disguise their autistic traits, allowing them to come across to the casual acquantaince as entirely neurotypical, often to the point that no-one would ever suspect that the individual is on the spectrum.  It is a real hot topic currently, and it seems that long-overdue research is finally being undertaken into its mechanics and its effect on autistic people who employ it.  At its most basic, camouflaging appears to rely on intense effort and stress on the part of the individual as they utilise their excellent memory of social cues to 'artificially' fit into social conversation and situations - essentially making their social life an endless act in order to prevent showing behaviours that they would be embarrassed or even ashamed of.  The range of skills involved is pretty daunting - the individual will have learned in minute detail how to react appropriately to the actions, speech and expressions of others, often using memorised details from their own life and even the media (films, TV shows) to help them 'say and do the right thing.'  As Meng-Chuan Lai notes in the introduction to the article 'Quantifying and exploring camouflaging in men and women with autism':

"One such coping strategy is that they may ‘camouflage’ difficulties during social situations by either hiding behaviour that might be viewed as socially unacceptable or artificially ‘performing’ social behaviour deemed to be more neurotypical – they Pretend to be Normal".

Forced eye contact, moderation of voice volume, even jokes and types of laughter can be examples of this camouflaging, all of which can usually serve to allow the autistic individual to 'fly under the radar', as Lai puts it, never getting diagnosed as there is never any concern from their teachers, parents or doctors.  The turmoil is all on the inside and is invisible to others.

Several clear patterns are beginning to emerge from the studies that continue to be published.  Firstly, successful camoflaging seems to be more prevalent in female autistic people for reasons that are still unclear; the ability to hide one's autistic traits (especially social ones) seems to be more readily within the purview of females, and female children in particular seem to have far more success in establishing friendships, for example (though maintaining them is often far less successful).  It appears that girls are more adroit at performing the expected social cues, and presumably more able to identify them in the first place.  Boys, in contrast, are far less capable of this, meaning that their autistic traits and behaviour may be more visible and obvious.

This, I think, has significant ramifications in the school environment.  The overwhelming 'maleness' of autism and aspergers in schools is well noted, and I think SEN departments, teachers and other stakeholders would benefit from being aware of the fact that female students who are on the spectrum are very good at hiding the fact, and therefore more care and time should be taken when trying to identify a students extra needs.  From my reading, I would suggest that the following considerations be taken when working with female students who may be on the spectrum:

1. Do not dismiss the possibility of ASD if they seem to have a social life - closer examination may be needed to establish the nature of the social interaction and whether friendships are maintained or falling out is commonplace.

2. Do not dismiss the possibility of ASD if eye contact is maintained, conversation with known adults is easy and a sense of humour is apparent!  Firstly, a sense of humour is often finely developed in people with autism (I, for example, am hilarious); secondly, it tends to be that conversation and interaction with other children and adults known to the student will be fine, flowing naturally - the student knows the rules and cues for those people.  They will, however, struggle with strangers for whom they have no record or knowledge.

3. Consider the other traits of ASD more carefully.  Obsessive behaviours, limited and intense interests, dislike of physical contact are all quite noticeable if you know what to look for.

It goes without saying that male children can be adept at camouflaging their symptoms, right up to adulthood.  I was only diagnosed at 34 because I had felt for years something wasn't quite right; at school it was never even considered as far as I am aware.  With male camouflaging, autistic traits can be hidden by a desire to not appear unusual, to avoid bullying, or just to avoid stressful situations getting worse.  This compensation is draining - it seems that males with autism that has been well-hidden are far more likely to suffer with anxiety and depression, mostly (it seems) due to sheer constant effort such camouflaging requires.

Finally, this phenomenon seems to be one of the reasons for some autistic children showing less severe traits as they grow older - they simply learn to cover them up.  All of this brings us to the rather uncomfortable conclusion that people with autism, girls and boys, have to expend considerable energy and mental strength to appear normal, for fear of being bullied, ostracized or treated unfairly.  This leaves them drained, depressed and even at times suicidal.  Surely this is no way for society to handle such a potentially talented and bright segment of the population?

Saturday, 11 November 2017

Teaching students with ASD - some practical tips that might help. Part One

I am coming at this purely from an angle of experience - please bear that in mind.  However, I have always had considerable success in helping students with ASD make the most of their time in school, and now I find myself on the Spectrum I am more able to identify why this may be the case.  What follows are possible methods that have the potential to help.  Of course, every child (and adult) with ASD is quite different, so there will be a requirement for lashings of professional judgement too!

1. Empathy for the student

This is probably pretty much a given, but I feel all neuro-typical teachers could gain some insight into the mind-processes of those with ASD if they knew a little more about how it affects everyday interaction with the world.  The thing to bear in mind for all ASD students is that they are doing pretty well just by being in school.  I don't mean they should be congratulated for this - that would be patronising and wouldn't help the general attitude towards ASD one bit.  Rather that this should be taken into consideration when dealing with them.  Students with ASD are so much closer to breaking point that most other students; they are one or two straws closer to having their metaphorical back broken.  Everything that school comprises of (with the possible exception of the safe, repetitive routine) can be anathema to any student on the spectrum, from the shouting children, lack of safe, quiet spaces, loud and sudden bells to the hard-to-read teachers and hidden, unknown expectations of them.  As such, it is worth pausing to remember this.  Imagine taking in nearly every single sight, sound, smell, taste, touch around you, unable to block it out, all layering over one another over and over again creating a white noise that you can only escape from if allowed to do one of your coping strategies, which are probably not entirely suited to the classroom environment.  This video, from the National Autistic's Society, does a pretty good job of simulating this - can you blame the child for getting upset at the end? 

The child that you are trying to get the best out of is dealing with this all the time, and the younger they are, the less expert they will be at handling it.  Take a moment.  If the student is struggling to get started on a piece of work, or is extremely distracted, then it is possible they are close to melt-down or over-stimulation.  Give them a break, allow them to take a brief time out or indulge in some doodling or reading for a moment to ground them.  See if your SENCO knows what the student's strategies to calm themselves are and make sure you allow the student to utilise them.

2. Keep the environment routine and calm at all times.

A calm environment (that crazy red sun from a month or so back)
There is a benefit to this generally, let's face it.  Having strong routines and a calm but friendly and safe atmosphere in the classroom is a real boon for behaviour management with all students, but it will transform your room from a mad carnival/zoo arena into a pleasant place to be for a child on the spectrum.  Make sure lessons begin and end in the same way every day if you have an ASD student in the group.  Ideally let them know what they will be doing at the start of the lesson, if you have a good relationship with them.  Minimise surprises, especially surprise tests (are they ever a good idea for anyone??) and make sure that if a routine will change (a school trip, say), that the child is spoken to and made to feel aware AND considered by the teachers and other staff - often I feel just the fact that time has been taken to remember that a student may have difficulties is enough to help them through, as they feel more secure (I know I do).  I have found that even a quiet glance and a reassuring nod of the head can help a student cope with whatever new challenge is approaching - it shows them that you understand, and with ASD it helps so, so much if other people understand.  See my blog post here for some insight into the stresses that environment and people can bring.

3. Be clear in your instruction.

Make nothing ambiguous when setting work.  Again, all students will tend to benefit from this, but I cannot state enough how vital it is that a student with ASD knows what you expect of them.  Modelling is a great tool here, of course - showing the students work that is successful will work wonders with many students on the spectrum, and especially those with Asperger's, as it will remove a major source of debilitating procrastination - the fear of not doing the job correctly.

Even clarifying exactly how much should be written (an admittedly annoying task at times, but I ALWAYS let a student with ASD know what is needed) can boost the effort and motivation in class, as can any other clear expectation ("complete all four questions before you move on to the next task in 5 minutes", for example).  I think this is one of the greatest kindnesses you can show to a student on the spectrum, as it will make the task clearer and crystalised, a possible end goal rather than a vague and misty 'something'.  For English teachers, Slow Writing (thanks to David Didau) can be an excellent technique to employ, for the same reasons - it allows students to explore their creativity (and they may be startlingly creative) within safe and clear boundaries.

Behaviour Management will be the focus of the next post - this is a tricky one!

I hope this helps both teachers and students and please let me know if you think I've made an error - as I said, this is mostly from personal, long experience.

Wednesday, 8 November 2017

Three Scenes from an Awkward Mind

I know that face: that face means upset.  It's the angle of the head and the amount the eyes are closed, seen it many times before.  And usually it means upset with me because when she's upset with something else then the angle of the head is different and she doesn't do that thing with her mouth.  So I must have done something wrong, but I don't know what.  I went to get a mars bar after work - does she know about that somehow?  I should offer to get her something to see how she reacts, that'll tell me what I need to know.

Oh, didn't work.  She doesn't seem to want anything but wasn't snappy, but wasn't cheerful either.  Could she be upset with something that's happened that I don't know about?  But then why wouldn't she tell me?  I can't work it out and I don't think she'll tell the truth if I ask, as people don't do that especially when they're upset.  Her tone of voice I recognise though, so I'm pretty sure I've annoyed her in some way, but I still don't know why.


Don't say anything.  Please don't say anything.  I just want to get my drink and then go and sit down quietly.  Don't make eye contact, that will make him start talking, just keep looking at your phone and try to calm down, you're only getting a coffee from a new barista you've not met before.  Oh god, he's talking about the holidays, am I going anywhere nice?  Stock phrase - no, not this summer, you - and wait for the reply that I don't care about at all.  Why would I care about where this stranger is going on holiday?  Do that quick laugh of blended appreciation and understanding, always works.  Still don't look in the eyes.


An empty pair of seats.  Thank God. Train's a bit too busy, don't like the noise or the heat.  I'll sit by the window, put my bag next to me.  Please don't anyone sit down here.  Still people coming down aisle from both directions.  Are there any other empty seats?  Can see a few down there, one or two there unless they have short people in that I can't see.  Is putting my bag there rude?  Don't want to seem rude but don't want to have to sit next to someone all the way to Leicester.  Three people coming.  What chances do I have that I'll be left alone?  20%, maybe 30%? Maybe they'll be too awkward to ask to move the bag.  They've sat down elsewhere!  Rejoice! Relax!


What about when we get to Bedford?  Loads will get on there.  Shit, where will they all sit?  Wait for the platform....


Platform's bloody crowded.  Typical.  Bloody hell.  Here they all come.  That guys looking at the seat.  Oh god, he's going to sit down.  Scoot over as close to the window as I can, bag on knee, too awkward now to stand up and stow it overhead, so doomed to discomfort.  Got to keep legs away from his; can't let them touch, even a little.  Hope I don't come across as weird.

Monday, 6 November 2017

Teaching with Asperger's - a paradox to ponder (Part One)

Asperger's syndrome, being on the autistic spectrum, is a combination of three key areas of daily difficulty: social interaction, social communication and social imagination

See this handy diagram for how they operate and interact:

As you can see, there are whole worlds of problems here, all of which are concerned with dealing with other human beings.  Some are quite extreme, such as "inappropriate touching of other people", whereas most are fairly straightforward.  None of them, I think, would be associated with quality teaching.

The fact I am a relatively successful teacher who has managed to rise to middle management and still get good results was always in the way of me thinking I really had some kind of autistic condition.  No matter how miserable I was, trying to operate like everyone else, my successful career always stood out as a veto to the concept of my being ASD.  How could I teach the way I do with autism?  How would that even work?  It is something that I have given a lot of thought to, and I believe I now have some understanding of how it works.

As I have noted before in this blog, I have managed to develop, over the years, lots and lots of coping mechanisms and little tricks to help keep all of this at bay and hopefully invisible to the naked eye.  I believe this started very young, to the point where there was never any concern for my psychological well being as a child.  I was thought shy, a little awkward and something of a loner, but little more than that.  I had picked up at an early age how to avoid stressing myself out and how to act with people so they were comfortable and happy, and this skill got more sharply honed as I grew up.  As such my repetitive movements that help keep me relaxed (stims, as they are known in the Aspie community) are very subtle (clenching and unclenching toes, rubbing feet together, basically stuff you can do without anyone noticing) as I hated the thought of standing out or appearing to be 'weird' in any way.

Masks. From Skyrim, obviously.
By the time I was doing my PGCE and was in schools teaching for the first time, I had been managing my symptoms for nearly 20 years and as such was pretty good at it.  I was also very confident as I had been successful at university and was hugely buoyed by how natural teaching felt for me.  I think everyone who teaches can agree that there is an element of acting involved - whether this is a means of holding the class's interest or to hide true feelings (or hangovers), and this is exactly how it felt for me.  Teaching a class was going on stage.  Now bear with me - I'm not suggesting that I set out to be some kind of comedian-teacher (imagine how that would go down on Twitter!) - more that I found wearing a 'teacher mask' and being something of an exaggerated persona made teaching not only possible for me, but even successful.  Students tended to be happy with my passion for the subject and my slightly intense humour making imaginative links between topics and ideas.  I could teach precisely because I wasn't myself in the classroom, and all my discomforts and issues with social interaction were hidden behind my mask.  This works because teaching isn't a normal social interaction, just as being on stage isn't either.  The power balance and attention is not equal or eithin the usual bounds of social interactions.  As a teacher, you are telling a narrative, explaining a concept, talking at the world even (at times) - you are not engaging in small talk and reading facial expressions carefully, worrying about whether the other person likes you or thinks you're weird.  In short, teaching doesn't fire off the usual Asperger's traits that make social interaction so difficult

But it still takes its toll.  I still feel deeply anxious before and after every lesson I teach, and each lesson exhausts me, drains me of energy.  You can't wear a mask all the time, and every minute with it on requires still more minutes with it off, preferably alone, recharging. But I can do it, and that keeps me coming back for more.

Next time I'll consider how Asperger's actually helps with reading a classroom.

Thursday, 2 November 2017

A diagnosis of Asperger's. Part Six

On Wednesday morning I went to Devizes for my third and final assessment appointment, four weeks after I had started.  These assessment sessions were about two hours long each, with the psychiatrist working her way through an enormous questionnaire that seemed determined to access every last neuron of my memory and experience, split into several clear sections.  In the first appointment we had covered social communication; in the second, social imagination, friendships and work; in this one we had something of a light relief period, as it focused on things such a motor capabilities and sensory quirks.  Needless to say, these appointments left me feeling extremely drained and worse, in Devizes.

By the end of the session, after I had discussed how I can't help but read and decode every single car numberplate I see (it's true, and pointless, and tiring), and how I am hugely over-sensitive to repetitive sounds, the psychiatrist looked at me and informed me that there was little doubt at all that I was on the autistic spectrum, and that specifically I had Asperger's.  I had it in spades, in fact,  The feeling of relief was powerful, as I had invested a lot of time and energy into the process, and had begun the long and arduous task of re-evaluating my life with this potential diagnosis in hand.  Discovering that there was no further doubt, and that I'd be getting my report through the post in a week or so, was hugely comforting and still is, a day and a half later.  We spoke for a while about my most immediate concerns (I made the most of being assessed by an actual psychiatrist - apparently this is quite unusual) and then we parted company.  I have spent the last 36 hours since thinking about what the diagnosis means.

Ultimately it means a lot.  I don't think it will change who I am (though I fear I may 'relax' into it a little), as I have always had Asperger's, so there is no reason for change.  But it will (and to a point already has) change how I view myself and my interactions with the world.  How this pans out will be interesting to see, but I am determined to see things with a new optimism as I realise how far I have come with a brain that is not neuro-typical, and therefore how much further I could go.  I am hopeful that this diagnosis will bring peace of mind and comfort when I'm feeling low, and I am thankful for the opportunities and strengths it has brought me.

Where do I go from here?  That is the question, and I think I will continue to blog, as I'd like to go into more detail about living with Asperger's, in the hope it helps folk like me in future.  I am also going to immerse myself in the Aspie community and see what that brings.

Thursday, 26 October 2017

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.

Monday, 23 October 2017

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

Sunday, 22 October 2017

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.

Saturday, 21 October 2017

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.


Tuesday, 10 January 2017

Novel Extract 2

Harris, in his alleyway at 11.20am knew none of this.  The delivery van was still blocking the alley, and water was pouring from a ruptured pipe in the wall of the wounded coffee shop; the alley was a mass of puddles and chunks of masonry.  He tried his mum again: again no luck.  Putting his phone onto a battery-saving mode, he weighed up his options.  As far as he knew, a terrorist attack was ongoing and the city was a dangerous place.  He had found temporary shelter, but realised it was pretty restrictive if he was spotted by someone wishing to do him harm.  He would be better, he reasoned, in a more open space, but one with plenty of hard cover.  How would the parks be? Would they be as hectic as the streets?  With no way of knowing, he set off down the other end of the alley, where the passage was narrower, and emerged in Chinatown, staying on the narrow streets.  Things were quieter here.  Helicopters were still hovering overhead, and the roar of crowds could be heard, but it all felt a little more distant, like the back streets of a busy seaside town in August.  Harris felt himself relax, and he considered his next move.  If he headed down past Piccadilly, he could get to St James park.  Or, with a little more effort, he could head to Hyde Park, which was bigger and a little further out, and therefore possibly safer.  He decided to head towards the West End, skirting Piccadilly as much as possible.  He fought against crowds in several places, and Pall Mall turned out to be almost as busy as Charing Cross, but he found himself in Green Park by midday, discovering it to be relatively quiet.  A few people he’d met on the way had given him snippets of information.  It seemed that the terrorists were brutal, exacting physical, manual violence on Londoners rather than shooting or bombing them.  Apparently one person had seen a group of individuals being eaten alive by their assailants.  Harris’ head span.  He still couldn’t get hold of his mother, and was still no closer to discovering what was going on.  He’d realised the Guardian had gone down at about 11.50, when an error screen kept being returned.  Twenty minutes later, his signal had gone altogether, including his 4G.  He was without means of communication, huddled under an oak in the least revered royal park in London.  He quietly sobbed, hiding himself as best he could under his coat as rain began to fall.

              A sudden flash and eruption of flame interrupted his misery.  It came from somewhere around Park Lane, and was joined with a second plume of smoke and fire.  The sound reached him a moment later, a heavy thudding roar.  Pieces of flaming debris were scattering around him, hurled into the air by the explosions.  Harris could see tall flames emerging from the source of the chaos, licking the walls of the high hotels and apartment blocks, a smear of black smoke on the blue sky.  So it was terrorists, he thought.  They were going for the symbols of wealth and inequality, no doubt.  He glanced across the trees to spot the heights of the Shard, peeping over the oaks and rooftops; a moment of clarity came in the realisation that he was sitting only a few hundred yards from Buckingham Palace.  He began to run.

              He was stopped by another immense crowd of people, many of whom were screaming and crying.  They were jostling and elbowing past one another, like an aggressive glacier.  There was no hope of crossing the stream, and Harris had no desire to join it.  There was no choice but to wait, so he ducked into a clothes shop that seemed to have been looted – garments were strewn on the floor and windows were smashed; no one was around.  The place smelled stale, with a tangy odour Harris put down to the vandals.  He squatted in a corner, hidden by some racks of jeans, and took out his phone again, only to discover there was still no signal of any kind.  Turning it off to preserve battery, he looked around at his situation.  The steady stream of people continued outside, and he could see the other side of the road, where people were leaning from windows, frantically looking at the events unfold.  There was a brief flash of blue lights and a moment of a siren which then died to nothing.  The shop was wrecked.  He hadn’t noticed how the ceiling was caving in, wires and light fittings dangling; glimpses of upstairs apartments with potted plants and book cases could be seen through the apertures. There seemed to be no logical reason for such destruction.  Harris pondered this for a moment and then noticed a figure, watching him from the far corner of the shop, a silhouette against the bright inlaid lighting advertising Givenchy and Boss scents.  Harris held up his hand in greeting, but the person didn’t move.  They appeared to be looking intently in his direction, and seemed totally uninterested in the crowds outside; Harris shifted his weight to offset the cramp that was developing in his thighs and tried speaking.  “Hiya, you ok?”

              The response was immediate and horrifying, as the figure leapt at Harris in a single, fleeting movement.  Harris turned and dived under the customer desk, banging his head hard on the wood, hurriedly drawing in his exposed legs as the other person reached for them.  The light was now illuminating the other, and Harris could see grey skin, shrivelled and worn features and empty eye sockets. The smell was incredible, and almost made him pass out.  Screaming in terror, he backed away, under the desk as the creature crawled towards him, clutching for his feet blindly.  The stench was unbelievable, and was choking Harris, bringing tears to his eyes.  The monster was wearing a grey, matted and filthy dress, in blue and gold, and had a necklace dangling around its neck; it swiped at Harris’ eyes with thin and discoloured fingers, the tips worn to bone like dinosaur’s claws.  Harris kicked at it with all his might, landing a few solid blows on the jaw of the thing, which promptly broke off and shot across the floor like a rat.  It rose, standing over Harris, its head shrunken and strangely imbalanced; with electric speed it lunged at him, but he managed to roll out of the way and struggle to his feet. Heart racing, he cast his eyes around for anything that could be useful.  A fire extinguisher was a possibility.  Footsteps behind him as he closed his fingers around the nozzle of the extinguisher alerted him that the creature was close, so he wildly swung the heavy metal cylinder in a wide arc, using its momentum.  Blind luck had it connect with the thing’s head, and its skull shattered into powder and small fragments.  The rest of the body continued to move for a few seconds, clawing ineffectually at him as he danced out of the way, extinguisher discarded on the floor.  After a longer time than felt reasonable, the remains collapsed onto the chequered floor of the fashion shop and were still.  Harris let his back slide down the wall; exhausted, he too slumped onto the floor, breathing heavily.  He now realised tears were shiny and sticky on his cheeks and his back ached terribly.  The crowd was thinning outside, but he could do nothing but rest.  But there would be no way he would shut his eyes.