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.

Invalid

I have been struggling with the task of adequately describing the sea change that has occurred in my life - to verbalise the subtle, yet profoundly positive shift that has occurred in the relationship I have cultivated with my husband for 30 years.  I have considered and rejected numerous passionate adjectives to illustrate how deeply I feel this change and how shaken I am by its implications. However, none seems appropriate.  Instead, I find myself drawn to focus on what is now absent. What has been alleviated.  What is no longer important... There is a word I keep returning to in my deliberations:  Invalid.

Invalid: Logically inconsequent.
Invalid: Being without foundation or force in fact, truth, or law.
Invalid: One who is sickly or disabled.

Whether spoken as an adjective or a noun; what an awful word this is:
I see now that this change is more to do with what has been lost, not what has been gained. I have been an invalid and invalid, all my life.

Every soul seeks validation, whether it is from family, friends, colleagues, strangers or the wider public...  Most will receive it in some form, at some time or other - although the quality, quantity and frequency may vary.

One of the most sad and debilitating aspects of life with Asperger's is that the neurological differences present make the social mechanisms one would usually apply in acquiring this validation seem to be absent or so underdeveloped as to appear absent.  We do feel however, (and in exquisite detail) the pain of our failures and the void that exists in its place.

We attempt to compensate for its loss by using systematising strengths to develop valuable technical skills, in-depth or encyclopedic subject knowledge, or to collect catalogues of 'appropriate responses' and body language that can be mimicked. The cruel truth is that these mechanisms all so often exacerbate the lack of validation instead of helping.  (People are intimidated by my skills, confused by my subject knowledge, and suspicious of my programmed responses.  My acting is never quite good enough to fool everyone all of the time, and to be caught out is disastrous.)  Even on those rare occasions when validation is offered unconditionally, we may fail to recognise it, or even learn to avoid it, as being without it is more familiar.

I am astonished, therefore, that a simple knowledge set, gifted to my husband and myself, could have overturned such engrained mechanisms and processes so quickly and so completely. The odd reality is that I have not changed.  All that has happened is that my husband has shifted slightly in his perceptions from 'sympathise, but will never really fully understand' to 'I get it'.  I feel that my response can be eloquently characterised as 'Oh. What?'

Every attempt I have ever made to explain my experience, the way I think, my difficulties etc. in my entire life have all led to the same disappointment.  Cumulatively, the effect is better known as despair.  This is the crux of why I am struggling to process the effect of this knowledge - my despair is missing.

Just knowing, really knowing, with utter surety that someone absolutely 'get's it' has been enough to make that despair evaporate.  All the incidents that usually highlight my vulnerability and failures are passing without their usual effect.  The crushing aftermath of misunderstandings has neglected to materialise.  The validation I am used to clawing from all the wrong places is no longer important.  I now have validation from the one place that matters.  It is enough.

Anything is beautiful if you look at it right... (Left behind - Kyle Wilson photograph)