When the Driving Force meets the Energy Crisis

Of all the differences I could list between the experiential worlds of  people with Asperger's and those without, the most important one, I think, has to do with energy.

By energy, I mean the whole gamut of subjects which begin with expenditure and end with refuelling. (Or stopping...)  The energy draw required for everyday life (in an Aspie's existence) is enormous.  When your understanding of the world is arrived at through cognitive means, energy becomes an important consideration.  To try to describe this in terms that can be appreciated by an NT is not difficult: Just imagine thinking about everything you do, down to the smallest decision.  Every decision preceded by conscious thought, deliberation and then followed by a in-depth analysis of of the results...  Exhausting, no?  And how do you 'refuel'?  Think about the way people talk about re-charging their batteries... Relaxing with friends, going out for a drink to a nice bar, having a massage for instance. For many Aspies, 'recharging' can only happen in the absence of people and noise and touch, so finding opportunities can be difficult.   But this is not the main issue...

The problem arises when you consider that NTs can have tremendous difficulty in grasping the level of energy required by an Aspie for normal functioning in a social world, and the scale of it's impact on the person doing it.  (Aspies can have similar trouble grasping that much of the slow, careful decision making they rely on every day, is done intuitively and without much conscious thought by NTs.)  Without this appreciation of the facts, our struggle is invisible at best; misinterpreted at worst.  Add to this the unpredictability of the social world and I would hope most would start to see just how 'different' and difficult our experience is.

So why aren't we all burnt-out husks by the age of twenty?

Since my diagnosis (when I was 43) I have met and got to know a number of people on the spectrum, and I quickly became aware that many of those people (myself included) have enormous capacity, drive and motivation.  This did not appear to change, even when if the person had withdrawn; unable to engage with the world: Their passions and interests were pursued with the same enthusiasm and energy - just from within their bedrooms.  We keep going, and as a result, we are capable of amazing feats of concentration, cognition and perseverance.  In TA, we might call this the 'Try Harder'  driver.  (When someone has been told that they are at fault for the majority of their life, the response is often to try harder, out of guilt, to gain acceptance or prove others wrong...) A few of my closer friends admit this ultimately self-destructive dynamic, but to expend energy on drive and enthusiasm when so much is taken up with merely navigating the everyday is unsustainable.  Something must, and usually does, give.

It is unfortunate then, that another 'driver' often accompanies that of 'Try Harder', and that's 'Don't Fail'.  People who find themselves in this dynamic simply can't win, often spiralling into crisis after crisis.  Of course this isn't limited to Aspies, however, our capacity and drive works against us - helping us reach new depths of despair.  It can be very difficult indeed to extricate ourselves from these defensive strategies when we live in such a chaotic social world where it can seem impossible to make sense of anything with all the contradictions:  "Do this accurately, but don't spend too long", "Tell the truth/Don't be rude"), "This is the priority/This is the priority/You should know the priority", "collaborate with colleagues/compete with colleagues", "Socialise/have fun".  So where should we expend our precious energy?  All too often, the answer is: 'on surviving', and even the most intelligent of us can, on occasion, convince ourselves that the effort isn't worth the reward.

Too few teachers and employers are aware of this, and the lack of understanding leads to more unnecessary pressure being piled on top.  As an educator, I do understand the frustration:  "Why, when this student is so capable, are they making so little effort?" The answer, of course, is that they are making a huge effort, simply to get through the day. If they have little energy left then, to decipher vague and contradictory expectations, we should not be surprised.  Few understand that it is even more frustrating for the student (who knows their own potential) having constant obstacles placed in their path.  It is in no way an even playing field.

It would be particularly cruel then, if we were to not only fail to understand these difficulties, but also to criticise those with great, and recognised potential, for failing to 'excel'.  Sadly, this is the overwhelming experience of many of the people I have met over the years, who identify as Aspies (myself included). Such intelligence, capacity and drive is essential in our fast moving technological world, and they should be accommodated and valued as the assets they are.  These people are the real movers and shakers, not the 'celebrities', the 'politicians' and 'corporate sharks'.  It is society's obsession with these things that has us swimming in a sea of plastic, teetering on the brink of climate catastrophe and making nationally important decisions based on nothing more than the mindless rhetoric of social media.

Time to listen to reason, I think.

Climate change protesters state the seemingly obvious...to the seemingly oblivious

The company of men

Gender is a subject that has never really interested me but it occurred to me recently that this a hot topic for many and so, as this type of realisation often triggers reflection,  I decided it was time to give it some consideration.

I suppose it is my tendency towards the factual and logical that, in part at least, has steered me away from the subject of gender.  After all, - men and women are equally capable of more or less the same feats (with the exception of the obvious biological barriers) aren't they?  The only other considerations seemed to me to be cultural, aesthetic or social ones (historical/legal/political/religious).  I have always considered that my gender was irrelevant, in all but the most fundamental sense.  

Of course, I am aware of the existence of gender bias, cultural and historical prerequisites, and of the tendency of recent years for people to self-label themselves on the 'gender spectrum'...  However, because I have never found gender to be an important factor in practically any decision I have ever made, that doesn't mean that there aren't important issues to consider.  (I am sure that others have made plenty of decisions about me based on exactly this.)  I should explain that I hold social concepts such as race and religion in similar disdain.  I can only consider them in terms of variation and the complexity of experience they bring with them.  I cannot imagine using such broad and subjective terms to make a judgement about a person.  It simply would not occur to me to favour these considerations over the specific merits of someone's suitability (for a job, a spouse, a conversation, a friend...)  What possible difference would it make if an engineer wears makeup or or has a beard?  

I must admit my view appears somewhat simplistic when I read it back.  Am I at fault, or is my simplistic view what we should all be aiming for?  

To clarify what 'gender' means to me personally, as a woman with Asperger's: An assignation which only has meaning in terms of anticipating situations when bias might occur with regard to social, historical or cultural norms, and in practical considerations. For example, the issue of a man working in a women's shelter or wearing appropriate clothing for dangerous jobs.

I have come to see that many people hold their gender identity very dear, some to the extent that it seems to define their very persona.  They celebrate their place on the spectrum of gender.  I struggle to see where I would fit on such a spectrum.  I suppose most see me as quite 'male' - I always wear trousers, but because they are practical and warm, and stop my skin burning in the summer.  (I am particularly aware of how much cheaper men's clothing is, and how much better quality the materials usually are!) However, I do wear minimal makeup and brush my hair (long - because I cannot bear the idea of visiting the hairdressers) when I go out, mainly because I don't want to attract unpleasant comment about 'not making an effort'.  (I don't really associate this with any particular gender - I just accept that I have female attributes, so I do things to fit in to that social expectation, particularly because it is a preference that my (NT) husband shares.)  Of course practical considerations outrank any of these other expectations! (I am amazed by people who will maintain their gender identity beyond all consideration of the practical - high heels on cobbled streets, a 3-piece trouser suit on stiflingly hot day, coiffured hair and eye makeup in a swimming pool etc... what dedication!)

Of course, it's not all about what you wear.   A huge amount of research has been done in this area, and it continues to be a popular discussion subject in many ways:  Does your environment determine gender?  Or is it your biology, your genes...or your brain?

I have been aware for some time of the apparent correlation between being a fairly strong systemiser (47 on Baron-Cohen's AQ scale) and my tendency towards the 'left brain' and the male stereotype:  I wear trousers, hate chatting and shopping and talking about handbags and 'celebrities'.  I was never interested in things other girls were interested in at school.  I didn't like soft toys, ponies or kittens.  Later, I even preferred beer and spirits (straight) to sweet wines and cocktails.  Even now, I like talking about aviation, space, physics and swordfighting, and have absolutely no interest in 'Nailbars', Love Island or small fluffy dogs which appear to have no practical purpose.   I have always preferred the company of men to women.  Even when I was in school I chose only male company.  I preferred the simpler interactions - we talked about things (bugs, films, cars) not people, or relationships.  Conversations were all about the subject, practicalities, statements and physical or visual jokes.  It was much easier to follow. At college I would dread the inevitable 'girls' nights out, and avoid them wherever possible. Relationships, fashion, pets, gossip were all alien to me. I am aware of how stereotypical this sounds, but this was my experience.  Perhaps we were all responding to  the same stereotypes....

Much has been made in recent years, of the apparent oversight of diagnosing girls and women with Asperger's due to their skill at social mimicking among other things.  To clarify:  Girls don't fit in better, but they are better at 'appearing to fit in'.  Boys are more likely to 'act out' and are therefore more visible for diagnosis.  Or so the theory goes.  I don't think this is true in my case.  I acted out.  I truanted, got into fights and consequently spent the vast majority of the time on my own.  I loved dinosaurs and ancient Greek mythology and drawing scary monsters. I was visible, but my behaviour was dismissed as boredom or eccentricity, due to my academic ability.  

But does favouring the left-brain (the slower, more logical thinking brain) mean that you are more 'male'?  And does that mean you are 'less female'? (I can't help thinking of Temple Grandin here, with her wonderful deadpan delivery and shapeless country cowboy shirts.)  After all, I am a loving mother and teacher, and creative to boot.  (All seen as more right brain.)  I thought my view might change when I met other Aspie women, but I have met none like me - they seemed more able, socially, and conversation inevitably got around to hobbies and interests like crafts, and pets.  Is this because of a tendency for women to be more 'right brain'? Maybe.  It seems quite neat but, of all people, I know appearances can be deceptive... The roles that my husband and I have assumed within our relationship are not the usual 'stereotypical' gender roles:  He does the cooking,  I do the DIY.  He does the vehicle maintenance, I do the gardening.  He is the keeper of the social diary, I do the school correspondence and homework help.  We share all other responsibilities depending on the circumstances at the time.  Any type of brain can see the sense in this arrangement, surely?  It certainly works.

I think, ultimately, that gender should not and need not matter.  I see it as a useful creative tool.  It can open doors, stimulate debate and provide an identity, but it is yours to do with as you wish, so make it work for you...

The Sheephead Wrasse (Semicossyphus reticulatus) Looks aren't everything, when needs must...


Simon Baron-Cohen's article on the extreme male brain and autism.
http://cogsci.bme.hu/~ivady/bscs/read/bc.pdf

Sense and Sensitivity

I feel better.  A short statement, but one of particular gravity, considering the appalling, medical, roller-coaster ride I have been treated to for the last two years.  (Beginning with the sudden and catastrophic onset of chronic migraine, followed by a complete inability to sleep without chemical intervention, and a whole raft of other neurological issues.)  Yesterday, I finally relinquished my huge collection of half-finished prescription medicines amassed during 30 months of 'trial and error' strategies designed to treat my unusual symptoms.

So what has brought about this miraculous change?  What class of physician was able to identify and treat such severe and lasting symptoms, and how did they discover the cause?

Well, in actual fact, it was me.  As Aspies are wont to do, I researched; but 'Looking it up on the NHS site' or 'Googling it' doesn't quite cover it.  I had made the connection with my age, early in proceedings, concluding that this was likely something to do with hormonal changes (plenty  of evidence exists regarding how migraines become more frequent in women during and after menopause).  This was never pursued by my GP or neurologist, however.  They seemed much more concerned with the next migraine killing prescription or offering me counselling due to the effect of sleep deprivation.

Eventually, after reading countless papers on the subject of the role of oestrogen in the nervous system, and the effects of menopause, it became clear that Hormone replacement treatment might be a solution.  I broached the subject with my GP, who immediately agreed.  I was somewhat put out by this.  After all, if this was a likely candidate, why hadn't it been offered two years ago?  Anyway - long story - short...  Here I am, 8 weeks in, migraine free and sleeping like a baby again.  One could become quite bitter as to the reasons why this solution was not offered by medical practitioners, but that would be a waste of time.  It did, however, get me thinking about why I had had such a rough time of it if my symptoms were 'merely' menopausal.

When we discuss Autism, we talk a great deal about 'sensory sensitivity'.  It is well known that people on the spectrum can experience sensory inputs (sound, sight, touch, smell, taste) in a hypersensitive  way.  (Some can be hyposensitive, but hypersensitivity is more associated with autism for it's ability to cause an overwhelming sensory impact.)  Sensitivities vary enormously from individual to individual, and the mechanics of it are poorly understood, but more evidence of what these sensory differences are is mounting up every year.

Although I would class myself as 'sensitive to noise' and smells, and have trouble processing fast moving images (driving on the motorway has been an issue for years, especially as a passenger), I would not say that I am particularly 'hypersensitive' in the usual sense.  I have always, however, been hypersensitive to chemicals (everything from detergents and perfumes to medicines).  I avoid medicines unless they are absolutely necessary, and will almost always suffer side effects - some quite severe.  I did wonder, for some time, whether this might be psychological, so I experimented to see if this was the case. (I avoided reading the listed side effects prior to taking them - only checking them against a list of symptoms I experienced later.)  I also noticed that I only required the minimum dosage before feeling the effects of any drug.  Needless to say - I have had a lot of practice in the last few years.

Perhaps it is this hypersensitivity that has led to my catastrophic reaction to a drop in oestrogen levels.  (Oestrogen is crucial for the healthy functioning of nerves and plays an important part in regulating serotonin for healthy sleep, which is why menopausal women can suffer sleep disturbances.) Perhaps my hypersensitivity was responsible of the sudden and chronic inability to sleep, the migraines and the shock-like disturbances through the night.  Not your average night sweats and hot flashes; so I suppose my GP and neurologist could be forgiven for not realising this was hormonal.  (If it was indeed an oversight, and not a reluctance to offer this as a possible cause.) Perhaps I will never know whether my sensory sensitivity and sensory processing have had any part in this, but there is some interesting work being done to demystify the subject.  Have fun reading about it!


References:
Sensory Processing in Autism: A Review of Neurophysiologic Findings
Elysa Jill Marco, Leighton Barett Nicholas Hinkley, Susanna Shan Hill, and Srikantan Subramanian Nagarajan   
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3086654/

Sensory perception in autism

Caroline E. Robertson1,2,3* and Simon Baron-Cohen4 
http://docs.autismresearchcentre.com/papers/2017_Robertson_Sensory-perception-in-autism.pdf

Autism As a Disorder of High Intelligence

Bernard J. Crespi*  
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4927579/

White Noise - Getty Images

A congruity of Aspies

I write today, after one of our 'Sunday Group'  meetings.  This comprises some Directors of The Different Engine CIC, some counselors and psychotherapists trained in transactional analysis.  A 50-50 mix of Aspies and neurotypicals.  We don't have an agenda, as such, but they always generate interesting discussion.  It is a safe place, and somewhere I feel I can indulge my vocabulary without rebuke.  I like words.  I find there is something remarkably pleasing about putting different words together in a certain order, for particular effect.  The complexity of the English language encourages flexibility and creativity, and I appreciate any tool that allows me the luxury of such fine tuning.  I consider what I write very carefully - something I wish I had the luxury to do in everyday conversation, but long pauses in conversation are frowned upon, I find, which is why our occasional get-togethers are so pleasing.  A good vocabulary seems to be a characteristic of many Aspies, and when we have occasion to use ours, we go above and beyond.  Indeed,  during this meeting, someone (an NT) made a comment on having a collective noun for Aspies, and we all rose to the challenge, quickly coming to agreement on "A congruence of Aspies".

Word games aside, there is an important point to be made here.  As a person with Asperger's, I live in what is essentially a chaotic social world.  This is a world where 'yes' doesn't always mean yes, 'maybe' doesn't always means that there is a possibility, and questions aren't always a request for factual information.  The Aspie sees incongruity everywhere; discordance, dissonance, incompatibility, inconsistency, difference, disparity, discrepancy.  We crave harmony, compatibility, consistency, conformity, balance, consonance, but this is hard to come by unless you are very fortunate.  I suppose this is why so many of us end up working in the sciences, engineering or computing - fields where an appreciation of congruity is valued.

Part of our discussions touched upon modifying our training workshops to accommodate those who work in education with their limited resources, finances and time.  It had become clear during our last short workshop, that teaching people with very limited time that they needed to slow down, (if they were to give their students the support they needed) was, to their ears, rather unhelpful.  Teachers and Teaching assistants, Learning Support Assistants and Higher Level Teaching Assistants are given training in all aspects of their job throughout their employment, and the delivery method is generally the same, providing them with a 'checklist' or 'tool-kit' to take with them to the classroom. It occurred to me that we were doing the opposite.  We were asking them to throw away their tool-kits and checklists, highlighting a huge and complex issue and merely hinting at a solution.  We were, in their eyes, suggesting incongruity where they saw none (despite a lack of success with the tools they were using).  I was reminded that these roles often attract the more empathetic of us, and that NTs employ cognitive bias without conscious thought much of the time.  This can mean that changing these habits is extremely difficult.

I remain convinced, however, that a fundamental change in approach is needed if we are to achieve rapport with our Aspie students.  How can we meet their needs if we don't understand the reason for their anxiety?  How can we communicate if we don't share a language?  How can we possibly understand if we do not fully appreciate the scale of the challenges faced by these students?  How can we empathise when we do not accept their different experience?

The final and perhaps most formidable obstacle to overcome is the perception that time can only be spent on those students who have been identified as requiring help (those who have received a formal diagnosis).  The obvious issue here is the process of diagnosis itself:  The process is quite long and can be distressing.  People can score very high on the AQ scale, but compensate by trying to not appear different.  They can be disappointed and distressed when they are told they do not qualify for the medical diagnosis - they are functioning too well.  I don't doubt that there is a significant number of students with undiagnosed Asperger's in any educational setting. They might even have been misdiagnosed with depression or pathological demand avoidance... There is no easy fix for this.  It takes time and commitment if we are to effect positive change for these vulnerable students.  There may be a solution in the application of transactional analysis (TA) itself.

Although TA (including our 'tweaked' Aspie version) has proven to be a powerful communication tool for Aspies, it is a similarly powerful communication tool for NTs.  In fact, all the changes we would prescribe for educators working with Aspie students would be beneficial for all, students and staff.  After all... any organisation can only be strengthened by incorporating greater diversity, and wouldn't we all benefit from a little congruity?

"As the new generation of bootstrappers explores this abstract theory space, they seem to be verifying the vision that Chew, now 92 and long retired, laid out half a century ago — but they’re doing it in an unexpected way. Their findings indicate that the set of all quantum field theories forms a unique mathematical structure, one that does indeed pull itself up by its own bootstraps, which means it can be understood on its own terms." (Geoffrey Chew's Bootstrap theory on quantum geometry.)

Navigating the Event Horizon

Our lives are full of cycles:   We learn, we teach, we become wiser.  We gain confidence, we take risks, we learn moderation. Some cycles are repeated again and again as we age. We trust, we are disappointed or betrayed, we make better choices about who we confide in, or we don't.  These cycles of trial and error are the mechanism by which we learn to navigate our world, but when you remove the 'why' from these experiences, our ability to learn from them is compromised. If you don't recognise that your trust has been abused, rejected or betrayed, or do not understand the reason why, how do you make a better decision next time?  How do you protect yourself?

One particular cycle (trying and failing to get the outcome I desired, and blundering into exactly the same issue next time I tried) was interrupted when I got my diagnosis 7 years ago:  I learned about Asperger's and that lent me the understanding I needed to begin to extricate myself from the cycle.  I nearly fell back in when, after copious research, I realised that there were no apparent solutions to how Asperger's affected my life.  I had simply added one more step in my cycle:  Try and fail, but fully appreciate the impact on myself, and others before blundering into it once again.  I still didn't know why, and even if I did, I did not have the language, skills or support to try to improve things.

But I wasn't ready to admit defeat.  I decided to embrace the positives.  I decided to use my experiences to illuminate the little-understood world of Asperger's. - to provoke discussion and highlight issues.  I had some success, which allowed me to take the next step...  And when the invitation came, I accepted and I learned about a possible solution - a way to claim back a portion of my life that I had never realised was lost.  I began to co-present Peter Flowerdew's TA/Aspie workshops. I made new friends and eventually, the illumination spread to those around me, letting everyone see me more clearly, and I, them. I am no expert in Transactional Analysis - I have a basic vocabulary, but is is enough to enable dialogue, and consequently, understanding.

But life with Asperger's is rarely so straightforward....

One of the most painful aspects of living with Aspergers, is the way that huge, hulking misunderstandings can still come barrelling out of left-field to knock you senseless and make you question your entire world view from the tiniest details to the broadest foundation.

Everyone suffers unexpected setbacks at sometime in their lives, no matter how they try to insulate themselves from disaster.  I myself have spent a lifetime, unsuccessfully trying to find ways to avoid getting hurt.  Enhanced understanding cannot cover every eventuality, and certainly cannot stop the dreadful emotional impact of misunderstandings when they happen.  So you explain yourself, people understand, you feel more relaxed and accepted, you take a chance and trust more.  In neurotypical people, there are numerous buffers (tests, if you like) that ensure that the risk is manageable; trust growing incrementally, allowing only the most worthy and compatible into the inner circle of genuine and mutual intimacy, where lasting harm could be done. This is not the case with Asperger's.

Asperger's not only means you are without the vast majority of these 'buffers', (meaning you are likely to risk far too much in one go), but also that you are likely to be unaware that this is happening until it is too late (leaving you totally unprepared for the disaster when it descends and utterly defenceless in its wake).

When I have encountered such disasters in the past, I have always responded to the appalling emotional and psychological pain they inflict by removing myself from everything and everyone involved immediately and permanently.  An over-reaction?  It may seem that way to a neurotypical, but I have a pitifully limited defense.  It is rare for me to trust, and rarer still that I relax in another's company.  So when it turns out that, in my enthusiasm to celebrate some of those rare relationships, I have unwittingly caused harm to them, my world falls apart.

 I suppose it is a nod to progress that I have not acted immediately on this occasion, despite the impact of this particular disaster being as painful as any I have encountered.  I need to know if this can be resolved, if my world view can survive, and whether I can live with that resolution, should it materialise. Running away and hiding from the pain is as attractive as it's ever been, but I will see this through. I need to know if it is possible to build mend bridges instead of burning them.  Sometimes, it seems, the only thing you can do when trust has let you down, is to trust that things will get better, and I'll emerge from this black hole.
















If Hawking radiation can do it... maybe I can too.