It can be tempting to say that I am more autistic than usual when I am sick. That’s not true, of course, because I’m as autistic as I’ve always been. It’s just that suddenly, I’m running on one engine and I become hyper-sensitive to all the messages my mind and body receive, every waking moment. My world-defences are no longer as strong, so my masking and my learnt behaviours are no longer available to me automatically. So, my repetitive behaviours increase, and my social skills decrease too. It’s not easy to deal with as an adult, but I remember quite clearly how much harder it was when I was a child.
When I am sick, all my autistic sensitivities increase, which is logical if you think about it. It takes all my effort, all the time, to manage the world, and most of that is through conscious awareness. Suddenly, part of the systems I rely on are focussed elsewhere, on fighting illness, and on being sick. I know when I am getting sick. Autistic people are either hyper or hypo sensitive, to stimuli. Being the hyper-sensitive kind, I can feel the most minute change in my somatosensory system. I had a shadow of a headache as the first sign. It wasn’t a headache, but I could feel a thing in my forehead. And that day, I was not my usual resilient self. Now, I knew these were likely signalling illness because Middle Child had been sick the past week. Miss ADHD had taken to her bed – a sure sign that she felt awful! If that clue hadn’t been there I would have still felt these sensations, but I’d have had to process what their meaning was – were they mental health related, anxiety induced, or change responses? In any case, I have to process the information in order to understand the meaning and management of this new state of being.
Then, it hit. My goodness, Dear Reader. It’s been a while since I’ve felt so overwhelmed! The symptoms of my illness were nausea and stomach pain, light headedness, diarrhoea, and lethargy. That’s a tad too much information, but I need to separate illness out from autistic response, because I experience both. I am not just sick, when I’m unwell, my total experience of the world alters. For the past few days I have been receiving much more information from the world, like it’s all been turned up to 12. It’s less coherent, too. The husband was playing Barry White in the car the other day, and it had all separated out to my ears. Instead of the whole, lush wash of music, I heard the bits. Conversations are much harder too, with words ticking-tocking into my brain and needing to be decoded before a laboured response is formed. I get so fatigued from all the effort.
I have crystal clear memories of being ill as a child. Most of all, I remember the sense that I was untethered from the world. What grasp of I had of my world – and let’s face it, as an autistic child sometimes that was quite tenuous – slipped away. And losing that sense of control was simply terrifying. You know what – in many ways, it resembles a meltdown. Reserves depleted, outside of conscious control, overwhelming and isolating, they share all the same features.
So, what do I want you to know, Dear Reader, especially if you have autistic children?
- Being unwell is frightening – The Son says it is like being under attack
- The onset of illness may be signalled days before by changed/challenging behaviours
- Sensory experiences will be altered – as if the settings are too high or too low
- It takes longer for the whole system to return to normal than the course of the illness.
- This isn’t being faked, or being done to manipulate, it’s as uncontrollable as a meltdown
- Once recovered, there’s a “re-entry” period back to normal life and expectations which the child will resist – vehemently at times!
That last point needs expanding. Children are coddled during illnesses, rightly of course. But routines are relaxed, rules of behaviour ignored, and all sorts of concessions are allowed. The Rules change. A child can’t be expected to know this is a temporary change. So often, once recovered from illness, there’s a period of re-adjustment required by all. We call that The Princess Stage in our house, because the child assumes they are entitled to special privileges, even though the need for them has passed. When the children were younger that often meant going right back to basics and gently reinforcing usual expectations despite loud protestations. You can’t blame them! Autistic people need to know the ground rules, so changing them, no matter how good the reason, is a fundamental no-no. It’s such a confusing period for a child.
I’m almost back to my regular operational state. Eating is still a little problematical, and words are still tricky, but I’m getting there. I’ll know when it happens though, because there’s an autistic payoff coming. Once I’m well, completely recovered, I am going to feel so good, because it will feel like it’s all new to me, like a mini rebirth. Being autistic can be such a gift!