Recalibrating (a grumpy post)

“Insistence on sameness, inflexible adherence to routines, or ritualised patterns or verbal non-verbal behaviour (e.g. extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat food every day).” from the DSM-5 criteria for Autism Spectrum Disorder

So here’s a thing that I think not many people understand about the majority of autistic people (not all – we autistic folk are as individual as anyone else) and that’s how change can affect us.

Most people now recognise that new routines, changes of pace and transitioning from one activity to the next is difficult for autistic children but they might not realise that it’s the same for autistic adults. Because autistic adults often seem to deal just fine. No public meltdown no problem right? Well, um.. not-so-much!

I’ll give you an example:

Ok, so how about if you, one of my dearest friends, pops round because you were in the neighbourhood. Here’s what will happen. I will jump up and down, hug you (I am a hug freak) and run around wittering and making a pot of coffee because I am truly happy to see you. OK, my reaction might seem a little over-the-top but as you are my dear friend you will already know that I am pretty childlike when I get excited. You are entirely forgiven for thinking that this is the best thing that has happened to me this week and that I can manage this situation.

But here’s the thing. My adrenaline levels will rocket the second I see you walk up the garden path (hence the performing-monkey-on-speed routine), my head will be pounding and I will be worrying because I haven’t had time to script (plan) any conversations (this is totally a thing), clean the house (I have a major fear of being judged) or re-plan my day.

And then, once you leave I will be distraught because I didn’t get to enjoy it properly – sure I smiled and laughed the whole time but the adrenaline will have stopped me relaxing and truly enjoying your visit. And I will have missed the chance to tell you funny and interesting things, to ask you about stuff I know interests you, and to entertain you as you deserve to be entertained –  because I didn’t get time to script. The sheer frustration is overwhelming.

And then, after the disappointment of not being able to be spontaneous (for goodness sakes, you only popped round for a cup of coffee!) s**t really kicks in for the rest of the day. Without the plan and the routine I was expecting for the day I’ve used up brain processing memory that I need for other stuff. When one thing changes my brain can’t neatly compartmentalise it and get on with the next thing. My brain decides that everything is up for change:

  • I will struggle to figure out the time and the day all day
  • I will mis-plan the next family meal so that it will be late and I will forget to cook part of it completely
  • I will walk into my own walls, trip up or fall down the stairs because the layout of the house feels different (strange but true)
  • I will do odd things like put my phone in the washing machine (this happened last month and I am still struggling with the loss of my iPhone because I can’t afford to replace my 5SE model and am instead using an old one with a tiny memory and a tendency to drain power unexpectedly – oh the irony)
  • everything will feel a bit louder and brighter than usual and it will give me a headache

…and as easy as that, I will lose the rest of the day to a brain that’s been shaken up and tipped out, like a basket of wool that will need untangling before it’s all packed away again. To make it worse, the emergency conversational processing I will have had to do will mean that I will have trouble conversing even with my family for the rest of the day. All for the sake of a dear friend visiting unexpectedly!

What’s more, it’s not just unexpected visitors that sets me up in a flurry of confusion and exhaustion. Changes of routine, changes of venue, new places, unexpected faces, cancelled plans? All of these mess up my precariously balanced equilibrium. And it can take days to recalibrate.

And so, while it seems that I am being unreasonable in not being able to change plans at the last minute; or when I have to back out of a social engagement altogether because other people have been invited this is why. I love that you can be spontaneous, I truly admire that in you. But I can’t join you in your spontaneity. Not without a bit of planning.

I promise a non-grumpy post next time!

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