Category: Explaining Autistic experience

Dr Chloe Farahar (they/she) | Aucademy CIC©

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I’m all turned about this morning. It’s a long bank holiday weekend and I don’t know what to do with myself – the absence of a plan makes me feel emotionally low.

It’s made more uncomfortable by having had to swap my smart watch and my Visible app monitor to opposite arms. (The Visible monitor stays on for 24 hours at a time, other than charging weekly and swapping the band to a dry one after showering – which eventually led to skin irritation, and the need to swap.)

Simple-sounding. And yet this swap has thrown my morning routine into confusion. My brain is so accustomed to how I put the band on and how I glance at my watch that I now have to think very hard about the next steps. So hard, in fact, that I almost forgot deodorant.

We all learn that routine, structure, and predictability are important for Autistic people. Families with Autistic children know this well. As an Autistic person who knows I have routines and a need for predictability, it’s only recently occurred to me just how far that runs.

My Autistic, multiply disabled friend and fellow Aucademy CIC Director, Jessica, worked it out – on yet another drive to a training session we were delivering together, where, as usual, I was late. This time by nearly half an hour.

I’ve tried all sorts of things over the years: making earlier calendar entries to trick myself; changing all my clocks to run ahead; asking my partner to help me – get me out of bed, take my phone in the morning. It didn’t go well.

I’ve come to accept that I will be late for most things, particularly in the morning. I’d put it down to chronic fatigue. Not being a morning person. Finding it just too hard to leave the house (I mean – there are people out there).

But on that 45-minute drive to teach nursing students, Jessica worked it out.

“I’m always behind and late getting up, just like you – but unlike you, I can drop parts of my routine. I won’t have breakfast, or do my hair. But you can’t cut anything from yours.”

For Jessica, who also experiences anxiety-driven needs for autonomy, the pressure and demand of being late is more costly than dropping elements of the routine – the idea of someone calling to hurry them up is unbearable. For me, it’s almost the reverse. That external pressure doesn’t affect me as much as the distress of waking up exhausted and not moving through the predictability of my routine.

My lateness is not personal to you. If I am late for your class, our meeting, that appointment – know that it is not disrespect. I really did do my best to be on time, and if it were easy for me to “just drop some of your routine,” then at 42, I would. It frustrates my neurodivergent partner, who hates being late or having to rush for a train – but he knows I don’t do it on purpose. (At least, he tries to see it that way.)

I even use my lateness as a teaching moment. When I tornado into the simulation hospital ward 20 minutes late, I ask nursing students: “Before we start – discuss in groups what barriers there might be for an Autistic patient arriving to your appointment on time, what reasons they might be late, and how those barriers affect them – like being refused further appointments, or removed from services altogether.” Then I walk them through why I was late.

I can’t fully explain why my routine, in its current form, is so important to me and so difficult to alter, defer from, or break. My smart watch buzzes me awake; I’m still exhausted; I lie there for maybe half an hour. I try to take my duloxetine (for anxiety and pain) at my bedside, to help me surface. Then I check emails, LinkedIn, Aucademy Facebook, and Instagram. Steve has to come and remove the cat from my bed so I can do my morning stretches for pain management. Then shower, dress, makeup, breakfast if there’s time, the rest of my morning meds. And that’s before we get to the micro-routines: the order I do things in the bathroom; how long I clean my teeth to feel properly clean; the order I put my clothes on; my makeup.

And so we return to my disorientation this weekend. A watch and a Visible device on opposite arms, and a ripple effect through everything that follows.

Routines really are important to many of us. Some Autistic people, like Jessica, can override theirs – because the anxiety of being late, and the risk of someone pressuring them to hurry, costs more than simply dropping an element or two. For others, the world becomes utterly disorienting without that predictability, leading to low mood, or even meltdown or shutdown.

If you don’t experience this, please consider the cost to our wellbeing when routines are disrupted or questioned – and the knock-on effects on our timekeeping, our ability to transition, and the very real distress that comes when we are prevented from following them.

Please do share this with anyone who needs to hear it.

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