Thursday, 4 January 2018

The best of times...

It's that time of year again, and I had hoped to have something heartwarming, insightful and completely out of character for a logic loving, systematic, no-nonsense Aspie, to share with you all.  My Christmas tree is still up, so I've thrown in some Dickens, and have sprinkled it with a comforting amount of efficiency in the form of a 'round-up of the last year' so I haven't completely thrown caution to the wind...

I have never read much Dickens, or Austen, Tolstoy or any of the other great writers who's chief delight was in spinning tales of the human condition and the intricacies of complex family or romantic relationships.  I've tried a few times, but I get lost quickly - there is little common experience here to keep my attention.  That doesn't mean I cannot appreciate the masterful and inspiring skill demonstrated by these giants of literature in smaller doses - they are, after all, eminently quotable.

"It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair…" 

When I turned my mind to writing my personal round-up of 2017, it was this quote from Dicken's 'A Tale of Two Cities' that my mental Rolodex fell open on.  2017 has been a year of contrasts...

The year began with struggle.  I was desperately trying to manage an increasingly stressful job, (not, difficult, highly responsible, very important or suchlike... just really, unnecessarily stressful).  This was being made more difficult because I was trying to cope with debilitating migraines and equally debilitating side effects from unhelpful drug treatments.  There was, I noticed, an uncomfortable familiarity about the way I was treated as a migraine sufferer...  The lack of understanding about the condition, the isolating effect, the ineffectual and sometimes harmful treatments, the lack of available help:  I'd been down this path before...

But, (I said, boldly starting a paragraph with a conjunction, and including a split infinitive in the explanation) another path was being forged at the same time. This was taking place thanks to the tireless enthusiasm of a small group of people I have come to think of as Friends.  (I feel the need to pause and explain at this point, for those of you who might skip over the significance of this statement.  Naming someone as a Friend, for an Aspie, is akin to bestowing the Nobel Prize.  Make no mistake - great things will be expected. (I write this with the confidence of someone who knows their Friends will see the humour here - which is the most delightful part!))

The formation of our fledgling Charity "The Different Engine" has been a difficult, time consuming, fiddly, awkward, tough task.  And it has been an absolute pleasure to be a part of it.  At the start, thanks to the migraines, I could barely look at a computer screen, but now I have nearly finished our new website: TheDifferentEngine.net.  We have our workshops for next year set up, and interest in what we are doing is growing fast.  Leaflets, articles, books and conference appearances are in all the pipeline. I am learning more about myself and how Asperger's effects the way I experience the world around me, every day, and thanks to Peter Fowerdew's Aspie TA, I can share this learning with my husband, son, students and anyone else who wants to know about it.

Without it, I would not have had the confidence to leave the harmful environment of my last job (because I wouldn't have recognised what was doing the harm).  I would not have had the courage to talk to prospective employers about my Asperger's, (for fear they would not understand) and they would not have realised the breadth of what I could bring to the role (I would not have had the language to explain).  The essential support and understanding of friends and family that I have relied upon through this difficult year would have been drastically reduced, were it not for the the fact that they have joined me on this journey, and we all now have access to this common language.  After 3 years of investigating this tool and its applications, it still amazes me that writing about it can still raise a tingle of excitement and a hitch of breath.

A last minute meeting, recently, proved to the icing on the cake for me...  I had agreed to come along to a meeting arranged by my friend Rich Hall, with a representative from an Autistic support organisation from which we had we both received support over the years.  I wasn't sure if there was an agenda, or if we were just testing the waters, but I listened as Rich spelled out the key stages of our work over the past few years.  Before long, my enthusiasm got the better of me and I there I was:  Waxing lyrical about my experiences and the way my cynical viewpoint had been changed irrevocably by the efficacy of these techniques and methods...  Our audience was somewhat taken aback by what we had achieved in the time since our previous acquaintance, and he spoke at length about his concerns about the direction of Autism research in the international arena.  It was heartening then, to say the least, to hear his positive response to our work - developed by NTs and Asipes together.  This is the most important type of endorsement in my mind - that of people who have lost faith in the systems that are designed to help people like us (most of them researched and designed by NTs in isolation, or using NT designed and interpreted research from autistic contributors)...  If they can see the benefit and scope of what we are doing, then even my appalling self-doubt cannot put up a sufficient argument.  'Nothing about Us, without Us' is one approach, but we chose to look beyond 'Them and Us' to the potential that comes from truly understanding the strengths of diversity  from both perspectives.  What we have achieved could not have been done by NTs or Aspies working in isolation.  We have tackled the barrier itself, and it has toppled.

2017 has indeed been a year of contrasts - illness and healing, leaving a job and gaining new employment, giving in and taking the plunge, despair and hopefulness, self-doubt and self-belief, trying to help and allowing myself to be helped.  Not as eloquent as Dickens, nor as dramatic, but I feel this year marks an important landmark.  "The Different Engine" is about to make a world of difference to a world of people, hopefully, two worlds.  I am very proud to be a part of it.




Tuesday, 5 December 2017

Cut on the Bias?

I suppose seven days is enough time to tell if one has made a terrible decision in leaving one job and starting another, wouldn't you agree?  Time enough to feel the familiar lick of flame as you realise you have inadvertently left the frying pan for the fire, or to realise that the grass, did in fact only look greener on this side.

There were some familiar 'failings', that could have started alarm bells ringing: The induction schedule being rewritten in favour of actual work, meetings being cancelled, people being unavailable. The odd thing is that, given the general atmosphere of the place and the level of activity of the people involved, at no time did it occur to me that any of the changes were actually harmful to me.  I was always able to catch up with the people in question later, and they were always happy to discuss issues and answer questions.  So I was happy, therefore, to forego the induction in its full sense and get stuck straight into 'being useful'.  I got the distinct impression that this came as an enormous relief to the rest of the team.  I know this because they actually told me.

I am a systemiser, and it was clear almost immediately that the systems and procedures here are inefficient at best, and might be entirely unworkable were it not for the tremendous effort being put in by the staff to keep everything running. I would like to be a part of seeing this fixed, and think they might let me. I know this because they actually agreed - the systems don't work well. Their honesty was refreshing, to say the least.

This was never the case in my previous job:  Systems and procedures were everywhere and constantly updated without consultation and force fed with no concern about their wider effect, beyond their ability to inflate the progress statistics that drive results and ultimately, funding.  In order to be both efficient and successful then, it pays to be cognitively biased:  Try to consider too many things; too many people. Slow things down, and people at the top start to sweat.  People at the bottom start looking for another job.

I watched a re-run of an horizon programme recently about the work of Daniel Kahneman, psychologist and Nobel prize winning economist.  The basis of his work on cognitive bias forms an important part of the model of NT and Aspie cognitive processing in Peter Flowerdew's work.  It was interesting to see people falling into the trap of making biased decisions by 'cutting out' data in everyday situations in favour of faster processing, even to the point of 'ignoring' a plainly visible assault in one experiment.  This is Kahneman's 'System 1' (Fast thinking): That wonderful, flexible neural network that filters out all the 'unimportant' stuff and allows instant, intuitive connections to be made in their place, all at lightning speed, and mostly without your knowledge:  The network that is so underdeveloped and underused in Aspies...  Kahneman's genius was to highlight the triggers, influences and repercussions of this type of decision making.

Sadly, the programme concentrated on System 1 and never really went into any detail about 'System 2', (the system I find myself limited to for much of the time).  This slow, logical, analytical, and much more reliable way of thinking is usually reserved for difficult and involved maths problems and the like in neurotypical people.  Aspies tend to rely much more on this system, and it is often developed to a remarkable degree.  If everyone had to use this system for all their thinking, they would certainly need things to slow down, as Aspies do, but would certainly make fewer mistakes.

As I watched the programme, my voice was raised at the end of every experiment:  "An Aspie would have made an objective decision!"  "An Aspie wouldn't have made that judgement!"  "An Aspie wouldn't have been swayed by popular opinion or simply by 'apparent fit'!" "An Aspie would have looked at all the facts!"

So, the question is:  What is better?  To rush decisions and finish on time, but with a good chance of having got something important wrong, or to take things more slowly, consider carefully, and finish later having got everything right?

I had hoped that Economists had learned something from the financial woes of the last 15 years.  Kahneman told them that people take risks - and the greater the potential loss, the greater the risk they are prepared to take.  Perhaps it's time to consider putting System 2 to use a little more.  (I know some Aspies who could help with that.)


A beautiful map of necessary ignorance?  What would the Aspie version look like?

Thursday, 16 November 2017

Abused Amoebas and Career Correlations

I was reading an excerpt from a zoological textbook the other day about the reactions of different types of amoeba to stimulus.  (Yes - this is the sort of thing you will find in my web surfing history.  Shut up.)  It seems that amoeba, generally, rarely move because of a positive stimulus.  (Towards things.) It follows that most of the experiments described involved annoying the amoeba with various negative stimuli and provoking movement. (Away from things.) After I stopped feeling sorry for the amoeba, it struck me that I had something in common with them.

It's been a long time since I had to start a new job.  I began my current employ at the end of 2009, and so, this is as long as I have held any job.  My length of employ in my various jobs has depended on all sorts of things in the past: from the effects of global financial crises, to dodgy contractual practices by employers that left me significantly out of pocket and on the end of a long list of creditors.  Only twice in the 11 jobs I have held, (As a graphic designer, Photographer, Technical illustrator, Administrator, Office Manager, IT Technician, Technical Author, Marketing Manager and Cover Supervisor,) have I chosen to leave.  And then, only because the stress of the situation has begun to effect my health.

It is in the nature of people with Asperger's to work hard.  After all, most things about everyday life are hard for us.  By most things, I mean all the stuff that is relatively easy for NTs.  (Chatting, socialising, networking, building relationships, finding advocates, friends and allies, navigating office or organisational politics.) The things that most NTs find hard:  being focused on work; wading through piles of boring, difficult or unsavoury tasks; learning new and difficult procedures and skills, staying motivated; is relatively easy for us.

Where people like me come unstuck, is that point where we need some support, help or recognition for our work and we look up from our narrow focus and find there's nobody there.  Because we haven't spent our time socialising, building those relationships, finding our allies and advocates, we have to rely on the formal organisational structure, as is. As anyone can attest, this alone is rarely adequate and sometimes even, shockingly, not always in the employee's favour.  It reminds me a little of what it was like during my maternity leave after having my son, Charley.  Finding myself alone with a new baby...  just the two of us, music, the park and a bunch of books:  (The idea of going to 'mums groups' or 'baby massage classes' filled me with absolute terror.)

But this seems to be a fate shared by of many of the people I have since met who have managed to secure regular employment, and who are on the spectrum.  Their remarkable skills and work ethic go unnoticed, simply because they don't know how to get them to register with their colleagues and employers...  The widely proclaimed CPD programmes seem in principle to be diametrically opposed to the 'one-size fits all' mentality of their actual content... and the forms!  They are anathema to the logical mind of an Aspie. The whole thing actually works against us, making us appear 'difficult' and 'unhelpful', when nothing could be further from the truth.  In fact, I think this is probably the most hurtful thing I could be accused of, simply because I try so hard to achieve the opposite outcome.

After discussions with several of the people I will be working with in my new job, I have much more confidence that they understand this.  They are aware of my Asperger's, the skills and strengths that it affords me, and the accommodations that they will need to make for me (some flexibility when it comes to CPD and conferences (large, noisy gatherings in strange places).  For many of us, our work is really our only 'social' contact, and what we do there is how we reach out to people.  It is up to our colleagues and employers to notice that, and accept the offer.  They would certainly not be disappointed if they did.

I digress, and do so because I have to go and write the obligatory 'goodbye email' to fulfil my social duties.  It seems awkward and pointless...  I have no wish to rant about my reasons for leaving, or single anyone out for particular thanks - this I have already done, in person. I see no purpose in throwing out more of the bland and meaningless platitudes that litter the daily lives of teachers.  I expect no card, no presentation, no celebration of my contribution of the last 7 years, which does sadden me, but it's a dusty, old and familiar sadness.  No, I'll leave quietly as usual.  After all, haven't I heard somewhere that it's better to speak softly and wear a loud shirt?


Amoeba Proteus, formerly known as Chaos Diffluens (I wonder why the change...?  Perhaps it's in Witness Protection....)

Friday, 20 October 2017

Karma Police - Addendum

I gave Karma a prod in my last post and bemoaned the consequences, but it turns out my little stash of validity has been looking after itself very well thank you, while my confidence has taken a dive.

Not long after sending my email withdrawing from the application process, I received an email from the prospective employer seeking a meeting to make sure there were no misunderstandings about the nature of the role that might have wrongly influenced my decision.  I considered replying to say I couldn't attend, but remembered another occasion when I had been asked back for a meeting and the outcome had been surprisingly positive.  I had enjoyed much of the experience yesterday, despite the pressure associated with the tasks and interviews - the staff were all lovely and I saw many familiar faces, so I thought I owed an explanation at least.  So I agreed to a meeting.

I don't know quite what I was expecting to hear, but the genuine warmth and understanding with which I was greeted was entirely unexpected, as was the fact that this person had clearly read my application in detail and had understood how my Asperger's actually enhances my ability in many ways.  They also seemed to appreciate my enthusiasm for learning and capacity for retaining factual knowledge, and even recognised it's value, and respected my honesty and openness in talking about my limitations and difficulties.  It also turns out that the hours for this role will allow me to keep up my commitments to a student group I run at my present school, which had been of some concern to me.

I have the weekend to mull things over, but I feel I have been handed a polite and eloquently worded invitation, and I am inclined to accept.


At Glastonbury this year, Karma Police was the last song played in Radiohead's set.  Even after they had left the stage the huge crowd continued to sing chorus after chorus...
"Phew, for a minute there,
I lost myself,
For a minute there,
I lost myself..."

Karma Police

What an odd title I have chosen for this post.  And yet I can think of nothing better to encompass the feelings I have at recent events.  Perhaps this is the first sign of my sense of validity starting to fracture...  (I wouldn't be surprised, what with illness and issues at work catching up with me.)
My confidence is crashing.

I have just sent an email eloquently backing out of the post-interview process for a job that represented the best chance at alternative employment I have seen in seven years.  And I don't really know why.  I think I may be scared of change, scared of failing, scared of succeeding, scared of taking on too much... but one thing is for sure:  I was told I would be phoned at 4pm yesterday after the interview, and did not receive a call.  It is not unusual for these calls to be delayed, and they would have called if I had been successful or unsuccessful; that is not in question.  But the delay gave me enough time for my terrified mind to talk myself out of accepting it.

At the moment, I feel sad, but relieved.  Tomorrow, I suspect I will be livid with myself.  By the time next term starts, and I am back in the toxic environment I am so desperate to leave, I'm sure I will be seriously questioning my sanity.

Interviews are such dreadful things for Aspies to navigate, and this one was no different in that respect...  A total of 4 hours in which to complete administrative tasks to do with behaviour and attendance tracking, a critique of a 20 slide Powerpoint for a Media lesson, a tour of the premises, a student panel, teaching a lesson (psychology), observing and commenting on a taught lesson (Geography), and of course, the formal interview... So many different tasks in such a short time in unfamiliar surroundings...  But I cannot bring myself to ask for additional time or consideration in these things - the nature of the role means it is pressurised and, naturally, they wanted interviewees to demonstrate they could cope with this kind of pressure.  And it is this kind of rationalisation that makes it so easy for me to stay exactly where I am.

It's odd how a simple delay in notification is enough to open to door to doubts; doubts to certainty, certainty to sabotage.  Of course, there is no guarantee that I would have been offered the post.  No guarantee that it would have been within my capabilities.  (There I go again.)  They asked me an odd question in the interview and, in a single moment, I saw that chasm of difference between me and most other people.  The question was:  "What would you do if you were presented with a challenging situation?"  Clearly, in hindsight, they were imagining the question framed in the sense of a challenging situation in the classroom, and were expecting to hear about some creative strategies for dealing with it.  I, however was flummoxed by it. Where would I start?  Practically everything was a challenging situation to me...  I did a pretty decent impression of a goldfish for a second or two before explaining my confusion, and they asked a more specific version that I was able to answer.

I talked a few posts ago about how my despair had evaporated at my new found validity, but it seems that it's not gone entirely.  It reminds me of a close Aspie friend I heard recently relaying his thoughts about his chances of ever being in a relationship with a partner and his resignation at being alone.  It made me sad, and I felt compelled to make supportive comments, but they would have felt like platitudes, because I myself feel a similar resignation:  A resignation that I will never have a job that shows off my skills or fulfils my potential (or comes anywhere remotely close to it).  People who know me, my work ethic, skills and ability would balk at such a statement, but the odds are stacked against people like us, externally and internally.  Perhaps I'm just too tired after all these years to keep trying.

But there is hope. Maybe it's my little stash of validity fighting back, but there's a little voice in the back of my head telling me that I'm too good for this job, or the new one:  That I am meant for something else, and if no employer can give me a platform for what I can offer, then perhaps I should build one myself.  Maybe it's Karma that I have such a distressing job.  Maybe it's Karma that I am so terrible at interviews.  Maybe Karma is trying to tell me something.  Maybe it's time I listened.


Still from Radiohead's 'Karma Police'

"I've given all I can,
It's not enough,
I've given all I can,
but we're still on the payroll..."

Wednesday, 11 October 2017

The Incident Pit

As I sit here, towards the end of a busy, full day of cover at my local secondary school, wondering how long the Epi Pen training will take and if my son will make a big fuss about his guitar practice tonight, I realise that things have found their way back to a kind of normality.

I have missed this.  Things have not been normal for some time.  Over a year, in fact.  I don't know how long this respite will last, and I have no intention of letting paranoia shorten any positive effects.  So, this is me drawing a line under the past year's difficulties, and looking ahead to a continuation of all the good stuff that had begun to happen.

However, I think it's worth pausing to reflect on how incredibly difficult these 'hiccups' and 'blips' in our lives are to navigate without a decent support network, real understanding or the ability to properly communicate your experience to those who need to hear it.  Of course, this is the norm for many people on the spectrum, who live every day of their lives without the comfort of a circle of close friends, or the confidence of being able to make themselves understood.  I count myself among the exceptionally lucky that I have a small but exceedingly genuine and responsive circle of friends, and an amazingly understanding husband and son, who have weathered my rants and complaints and soothed my pains and fears.  I don't know how I would have managed this last year without them.

They couldn't help me, however, when it came to explaining to medical personnel the effect of the illness with regard to Asperger's.  Whereas I am sure my Doctor sympathised that my inability to make concrete plans, stick to my schedules or escape into a book or that my ability to draw my super-detailed doodles had been utterly compromised by the threat of severe migraines, I am sure the full impact on my life was lost to her:  The function that reading or doodling fulfills in calming me down at the end of a stressful day of social interaction.  The role that drawing plays in my relationship with my son, the part it plays in our understanding of one another and our creative processes... Without my plans and schedules, I am rudderless and days can pass in a morose of sedentary catatonia.  The pleasure I took at exploring pattern has now turned to fear and anxiety due to the very real prospect of triggering a migraine... It is all extremely distressing and my anxiety quickly rises past it's usual elevated position to new heights, causing sleeplessness and a cascade of other associated difficulties.

It has always been difficult to explain to NTs, how the impact of  familiar issues such as these differs in autistic people.  It reminds me of something that we learn as scuba divers:  To dive within our limits.  We are told that things can deteriorate quickly into a serious situation if we do not follow this rule.  We are told to consider the Incident Pit:  A metaphorical place where a certain number of small incidents can be weathered without major consequence, but one too many, and nothing with halt your slide into panic and its inevitable, fatal result.  I realised that all these 'small inconveniences'  (not reading, not drawing, staying out of bright sunshine, not diving, not eating certain foods, not looking at patterns, not being reliable etc) had me skating perilously close to the edge of my own Incident  Pit.  I faced a future without any of my coping mechanisms, without any of my methods for sharing ideas or connecting with people, and I panicked.  It has been many years since the idea of suicide entered my head, and I'm fairly sure that the only only reason it did recently, was thanks to a rare side effect of the latest medication, but I resent bitterly that it arrived at all, and the terrible impact it had on my family.


So, in summary, although I do, tentatively feel as though I have turned a corner, and that some normality is returning to life, recent events have served to remind me how vulnerable we can be when we isolate ourselves, and how difficult it can be for others to see this.  It is ultimately up to us to recognise our limits, and when to ask someone to throw that lifeline.


Tuesday, 5 September 2017

Derailed


Things have apparently been going too well.  My blissful transition from anxiety-wracked nerdy under-achiever to contented, thankful, hopeful individual has been rudely sidetracked by something known as Chronic Migraine.  This insidious and little understood condition is extremely distressing and I have found myself ill-equipped to deal with it or its wider effects.

I am a creature of habit. As an Aspie, schedules lists and patterns weave the aspects of my life together into something that I can navigate reasonably successfully. I rely on reliability.  But my reliability has been taken from me, and it has been devastating.

To explain:  I had only had migraines rarely in the past, perhaps once every one or two years, and they were fairly mild: a few visual fireworks , a nasty headache tempered by a feeling of elation once the event was over.  Then, about a year ago, I began to have severe migraines with 'aura' (a visual disturbance that take a number of forms, but in my case, was a flickering zig-zag pattern that started in the centre of my field of vision but soon expanded to fill it entirely, for at least 20 minutes.)  This would be accompanied by nausea, disorientation and a loss of verbal dexterity (I would struggle to find the right words).  This would be followed by up to 8 hours of severe headache, centred in one or both eyes. I would spend the next day (if spared by another migraine) in a mindless fug - my thought processes muddled and slow, de-motivated and depressed.)

Within a month of having the first migraine, they were occurring almost every day.

My life stopped.  I could not work.  I couldn't drive. I couldn't manage a decent conversation.  I couldn't watch the TV, read, or work on my computer.  I couldn't work on my book, draw or paint or write my blog.  I couldn't go outside in the sunshine or open my eyes in the bathroom thanks to my striped flooring.  Worst of all, I couldn't think.  I have let people down, missed deadlines, broken promises and failed to turn up.  All cardinal sins to an Aspie.  I feel as if I have regressed to the sorry state I was in when I was 20: No confidence, no prospects and no idea.  Only the stalwart support of my amazing husband and son have kept me afloat, and for that I am extremely grateful.

I have always avoided taking medications - I seem to be particularly sensitive to their side effects and have suffered many that were quite severe and rare.  The drugs available for managing chronic migraine come with lists of side effects that are almost more frightening than the thought of a never-ending migraine.  Over the course of the next 6 months I tested medications and compared side effects and efficacy.  Nothing seemed to work and everything made me feel terrible.  It is testament to my desperation at this point, that I settled on a regimen that blocked only most of the effects of the migraines, but left me dizzy, faint, prone to blacking out.  (Being unable to drink alcohol or go diving now seem minor considerations.)  Now, however, the medication is failing, the migraines are back with a vengeance and I am back at square one.

I find myself wondering whether I can realistically continue to work at all.  How can I offer services when I am so unreliable?  I cannot convey quite how horrendous this concept is to me.  This is the one thing I had complete confidence in:  My ability to get stuff done.  The one quality of mine that was never questioned by anyone:  I could be relied upon.

So, I find myself about to embark on a new regimen of scary drugs (the list of instructions and side effects for this one took a full 45 minutes to read through!) that will lessen the effects of the migraines at the acceptable risk of liver failure, kidney stones and blindness.  As I sit here, feeling my neck stiffen and watching the tell-tale sparkles appear at the periphery of my vision, I hope I have made the right choice this time...  I am still waiting to see a neurologist, a year down the line, but there is no guarantee they will have anything helpful to tell me about this debilitating and misunderstood condition.