I’ve begun to talk more openly about the nature of the challenges which affect my working life.
The other day I shared on Twitter that I was having a bad sensory day, not really expecting any kind of response. Minutes later a bunch of seriously thoughtful notifications came through and I found myself breathing more deeply, and a definite prickle behind my eyes. Tears! Not quite – but almost. How long have I struggled without knowing my struggle? How difficult at my age to begin to say it…
I have an important meeting today. It takes place in a city which is easily accessible by train or car. I could drive or travel independently by public transport – and the single journey can be made in just over an hour or two.
The car journey is easier in one sense – a controlled environment, limited walking and a door to door experience. Yet a round trip means calling on almost 3 hours of mental concentration. Getting there is the lesser challenge but driving home after the exertions of the day will be extremely taxing. Mental exhaustion affects coordination and so driving requires hyper vigilance (way to ramp up anxiety levels!) I will arrive safely but be incapable of talking to my family. Recovery could be a long while.
A train ride is easier in another sense – getting on and off require focus but the main event can be spent in drift mode if required. Yet the train adds in a journey to the station at either end (walking or on a bus/ taxi). The sensory environment in each case will be unpredictable – sound and olfactory challenge can go a multitude of ways ranging from pleasant to nightmarish. Lighting and ambient temperature are in many ways more significant to the sensory load in my case. Navigating new routes weighs in like a tonne, which can be exhausting.
Just months ago I would have taken a physical journey for such a meeting.
But there would have been tremendous consequences for me and my family, and my capacity to pick right up and work the next day. My journey would not begin and end with the train or the car. I calculate that such a journey with a meeting of this type would have a major impact on my ability to function. The number of days lost is never predictable, only that there will be a significant sensory hangover with a loss of energy and resources. Modalities can shut down entirely – loss of speech or the ability to tolerate sound or light are classic effects. Retreat to a dark and quiet sanctuary for recovery time is unavoidable.
I’m getting to grips with why and hoping to do so in a more formal and systematic way but for now this is what I’ve got.
There are multiple tasks involved to arrive at my meeting, tasks which are usually obscured by neurologically biased expectation regarding functionality.
The ease with which any person can navigate the tasks involved is probably dependent on sensory regulation, and calls on a sensory system which is predictable and filters input without disruption or delay.
We know that non-autistic people experience regulatory difficulties too – at times of great stress, through drinking too much caffeine and according to natural variations in this population, (anxiety, indigestion and insomnia are not ours alone!) Such difficulties are known to affect functionality in the short term and health in the long term.
Imagine that for the autistic person this can be exacerbated by ‘ordinary’, or rather, ‘neurologically biased’ work demands, such as an out of town meeting.
I think that for ‘neurologically biased’ we should read neurological privilege and allow that working accommodations begin right there. But first the bias must be revealed and spoken.
So today – in a few moments in fact – I will arrive at my meeting via Skype. This is the kind of accommodation which for (by now) obvious reasons can be a deal maker in how well I cope and recover from the effort of decoding a multiplicity of interactions with my new colleagues.