mad as a hatter

you’d probably all agree that this year has been tough. we’ve all been feeling it in one way or another – COVID lockdowns, work & money worries, the looming Brexit deadline, uncertainty, anxiety, illness, exhaustion. it’s been a hard time for most of us, and it doesn’t feel like it will get easier anytime soon.

in many ways i’ve had a relatively “easy” year – both myself & my partner have been able to work from home; we have a garden & nearby access to other outdoor spaces; we haven’t had an issue with getting food or medication; and we’ve been able to keep ourselves safe so far. but i’ve still been finding it incredibly hard.

my autism means that i don’t cope with uncertainty at all – i need to have a plan for absolutely everything, and if things don’t go to plan or i can’t stick to my routine then i become extremely anxious & stressed. and if one thing has been consistent throughout this pandemic, it’s that nothing is the same from one day to another, and nothing can be planned in advance because everything keeps changing.

trying to cope with constant change when your brain is wired like mine is means that you’re always struggling to catch up; i feel like i’m in the Red Queen’s Race from Alice Through the Looking Glass, where “… it takes all the running you can do, to keep in the same place”. it’s exhausting, and uses up nearly all my mental effort, which doesn’t leave a lot of energy for work or other day-to-day tasks. at the same time, the concept of “rest” is something i also struggle with – not only are there all the “shoulds” to deal with (i should be working, i should be doing household chores, i should be exercising & eating fruit & looking after myself), but my brain literally never stops going no matter what i do.

since the early fall, i’ve been experiencing something that’s commonly known as “autistic burnout”, which is basically a fancier way of saying “more autism for me!”. it means that my autistic traits are much stronger than usual and my ability to manage them is almost completely gone. the symptoms of this can be different for everyone, but for me, it’s shown up as an all-encompassing fatigue, increased sensory sensitivity, a much lower threshold for overwhelm/meltdown, massively disrupted sleep patterns, and constant brain fog (issues with memory and communication, mostly). it’s also meant that my ability to “mask” (ie act “normal”) is severely diminished, and my stimming (repetitive movements – for me, it’s usually flapping my hands/fingers or rubbing my feet together) is completely out of control.

even though stimming is something that many autistic people find soothing, for me, it’s something that creates even more anxiety – it’s a physical movement that i can’t control and often am not immediately aware that i’m doing, which makes me feel like i’m really standing out as “not normal”. it’s also tiring to be constantly in motion, especially when you’re trying to rest or relax. but for now, unless i’m actively doing something with my hands, i’m stimming whether i want to or not.

it may come as no surprise, then, when i say that one of the things that has helped me keep going through all of this is knitting – building something concrete, stitch by stitch, even on days that i can only manage a row or two, always helps me feel a tiny bit more in control of things. it also means that i’m occupying my hands, in a way that means i can’t stim uncontrollably – although knitting itself probably fits into the category of stimming as it’s also a repetitive, self-soothing motion, at least it’s a stim that i’m choosing and that feels “productive”.

at the end of september, i cast on a “Katie’s Kep”, this year’s free Shetland Wool Week pattern (& the first photo in this post). i had intended to knit one as a way to feel connected to friends who i normally only see at these kinds of events, and who i had been missing this year after COVID cancelled all in-person yarn shows. and then i just couldn’t stop.

i hadn’t set out with the plan of making this many, or of making them for anyone specific. but each colour combination that i chose made me think of someone i cared about – and funnily enough, when i posted the finished hats in our whatsapp group & told them each to choose one, they each chose the one that had made me think of them.

i don’t know how this year will affect my mental health long-term. i don’t know if i’ll go back to (my) “normal” after all this is over; i don’t know if anyone will. i don’t know if my anxiety will lessen,or if my stimming will calm down, or when i’ll feel comfortable being around people again. but i know this winter, the friends that i’m missing will all be warm & cosy – and that we’ll all get through this somehow, stitch by stitch.

2 Responses to mad as a hatter

  1. Naomi Davis 10/12/2020 at 7:06 am #

    Brave and lovely post….and gorgeous hats!!
    I wish you – and all of us – good health.

  2. Felix 12/01/2021 at 10:48 am #

    Lilith this is such a moving post and your hats are such a beautiful outcome from what sounds like a really difficult time. Thank you for sharing the impact of Covid on people with autism and particularly what it means for you to face and manage ongoing uncertainty. I really appreciated learning more about stimming and share your feeling we will get through all this, one stitch at a time x

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