Perhaps the functioning labels aren’t so bad, if they could just be applied to me at different times.
It’s been a month of ups and downs, of achievements and limits. I have gone from the high energy and hyper focus of high-functioning-Rhi, to the shutdown and inability to do the simplest of tasks of low-functioning-Rhi, and everything in between.
If I look at times of extreme hyper-focus, then I should be cautious of a functioning label. When all I want to do is complete the task in front of me, everything else becomes an unwanted distraction.
I’m not sure if I get hungry and ignore it, or don’t get hungry at all, but even eating and drinking fall by the wayside. Long hot baths are usually a sensory sanctuary for me, but the idea of stopping for that long fills me with frustration.
I usually have a good routine for necessary actions that I deem important. My morning routine is set in stone, but throw in extreme hyper-focus and I don’t care. The only important things to do are the ones that get me to my mission quickest.
I usually need plenty of sleep, but it too falls by the wayside as my brain keeps itself pointed on my plan. I may get a few fitful hours, but they’re never enough, my brain races through the night. It worries at methods and problems. I’m usually in bed for ten and up at seven, but at these times I would happily carry on until passed midnight and be up before six to get back to it.
Being a parent means having to fit that focus around children too. I have no choice but to put them first, but my mind will be elsewhere. I will view the day in terms of peaks and troughs. Peaks will be times I can indulge my project, troughs will be anything else.
At these times my energy for my interest can seem boundless. I am enthused, I am physical. I will work from the moment I wake to the moment I sleep on one thing alone if I can.
Is this functioning? Well, it’s achieving on one level. Without someone around me to place food and drink in front of me and interrupt my train of thought, I would happily go without or just grab anything that can be eaten on the fly when I start feeling dizzy, or drink when I get those headaches. I don’t want to speak unless it’s to hear my thoughts out loud to work out ways of doing things. Words become purely purposeful.
It’s certainly functioning with regards to my interest. Sometimes I’ll look back at all I’ve achieved and be astonished that I was capable of doing so much in such a short space of time.
It’s never sustainable on that level, and it can be physically destructive.
Then there’s the me who comes afterwards. Exhausted. Shut down. Little energy left to do anything, all of which must be used on those who need it most. In times of extreme hyper-focus and shut down I will need to lean on those around me more than usual.
I want to stress that I do not choose to fall into those periods. They’ll creep up on me. At first I will just be finding joy in having energy to spend on things I enjoy. The beginning is always pleasure. I will still be able to focus elsewhere too, but once the tendrils start to snag on the task, and I fall into it, that all begins to change.
Fully-functional-Rhi, someone with excess energy and the ability to use it on varied things, is perhaps not sustainable.
Am I happy when in extreme hyper-focus? Yes and no. I feel the joy of creating something. I feel empowered. But soon I’ll also start to feel the physical effects of neglecting myself. I’ll start to crash as the exhaustion and lack of food and drink and sleep catch up with me. I’ll feel guilt for stealing this recovery time from those I love. I’ll feel fear as I know that I’m now entering a time of lack of energy and hiding, of nothingness, to balance the everything.
What is the ideal? The ideal would be to maintain the beginnings of that stage forever. That time when I am full of energy and feel like I could take over the world, interact with anyone, do anything.
That level of processing isn’t sustainable for me. The crash is inevitable. As with all things, everything is about balance. If I take from now, I’ll need to give back later.
I have developed ways to keep myself from fully engaging. This means I lose productivity but gain time. That first morning when I think, “Forget brushing your teeth, you could be working already.” Is the time that I need to keep to my routines most (it helps that a lack of cleanliness is a sensory nightmare for me, I have a heightened sense of smell and touch).
Routines aren’t just about security, they’re about moving forwards. They’re there because they’re the most efficient way I have found to get to the point of leaving the house dressed, clean and fed.
All or nothing. That’s me. All my routine or none of it.
Losing extreme hyper-focus doesn’t mean losing hyper-focus. It means spreading things out, creating a balance. It’s not always easy and sometimes I fail. Those are the times I’m most grateful that I have people around me who understand.
They understand that I am not trying to exclude them. They understand that I need patience and gentle steering, because untangling myself quickly will result in a shutdown. They understand that I am trying and that my focus being elsewhere is not a sign that I love them any less. They understand that when I am in my period of exhaustion I will struggle to function, and so they don’t criticise anything I do not do, they praise me for the things that I do achieve. The small things.
When I say, “I’ve achieved nothing today” They look for the things I have done. That may be, “Today you made your own food and ate it”, “Today you put a wash in the washing machine” or on a really bad day, “Today you rested, which is what you needed to do, that’s an achievement too”.
Permission to rest helps stop me beating myself up and getting into a negative spiral.
As I emerge I have conflicting feelings; I feel immense pride at what I’ve achieved, I feel guilt for taking the focus from other areas of my life, and I feel huge relief that my energy is returning; as it can feel like it’s never going to come back.
There have been many times in my life when the input from others, during times of burn out, were not so productive. I felt so physically awful that we all thought I was ill, me included. My hypermobility meant I had increased joint pain after exertion. My not caring for myself left me run down and gave my immune system a huge knock.
The voices around me telling me I was lazy and needed to pull myself together made everything worse. These days I see a period of bad shutdown as lasting a few days or weeks, in the past, because I didn’t practice self-care and pushed on and on, they could last for months, even years.
But I’m not ill. I was mis-attributing my symptoms to something external. I was feeding everything that would perpetuate those symptoms, instead of listening to what I needed. I judged myself as a neurotypical, and allowed myself what seemed socially acceptable, and no more.
Life tells us to push ourselves to achieve, constantly.
That’s not how I’m built. I’ve a bigger engine to run for a shorter time. It needs to cool off after it’s revved for a while.
I do wonder how anyone achieves anything without autistic hyper-focus. Going the slow way around must be exhausting.
Translating this into work systems, I’ve never understood why employers focus on attendance and not productivity. My perfect workplace would give me tasks to complete by a certain date, with control of when and where left entirely to me.
Hyper-focus would let me immerse myself in the task completely. I wouldn’t have to go away and come back, each time needing to remind myself of the details, I could hold it all in my head.
I’d complete the task, give myself a period of recovery time, and then enjoyment time.
Those who prefer nine to five in an office could do it that way, socialising and chatting as they go.
Or somewhere in between the two.
Presenteeism (the idea that having everyone at an office for set hours is optimal for productivity) is a terrible system for autistic people. It’s illogical, values social skills over output (when social skills are not a part of the job) and doesn’t allow for much-needed recovery time.
To value hyper-focus as a useful tool, you need to value the whole person. I would love to see more workplaces willing to be flexible with their approaches to how tasks are completed. They’re missing out on valuable skills with their inflexible thinking.