A bit of writing about being neurodivergent, disabled, ethnic and a woman in Wales.
I crochet and knit. That makes it sound like a hobby, but the reality is that it is a compulsion. Although, does that make is appear negative? It isn’t. My want to play with wool is due to my parents.
Mum and Dad knew there was something not quite right with their daughter, but they didn’t know what.
Back then I would make repetitive and rhythmic hand movements and, more worryingly, I would eat my hair. Both are known stims – repetitive movements or noises – from autism, which I have, although my parents had no idea.
My mum was worried about the hair eating, also known as trichophagia or Rapunzel syndrome, as it can be fatal if allowed to continue unchecked.
I’m guessing that she watched me and realised that it wasn’t the act of eating my hair I was hooked on but the sensation of wrapping it around my fingers before eating it. So, my mum decided to keep my hands busy by teaching me to knit and crochet.
The wool moving through my hands gave me the ‘stimming hit’ and I stopped eating it. And then I hyper-focused on the wool and patterns… Now I can pretty much pick up any crochet or knitting pattern and immediately read it and create the garment or item.
In our living room, there is a corner that is a mess, that is covered in sewing kits, wool and bags of projects.
You see I can never seem to finish stuff for me, I start a jumper and then lose interest or something else comes alone and bang – I’m starting something else, normally for a family member.
My project gets dumped into a bag. I have many that are like that, jumpers missing a sleeve or shawls too small.
The latter is a project I have just picked up again. A beautiful multicoloured blue shawl that was meant to be my wedding shawl. I started it three months before the wedding. I have now been married for three and a half years.
Every time I get it out, I must smile because it is so lovely but its late finishing doesn’t matter as it would never have worked out for the day – it was a blistering hot August afternoon. Not shawl weather.
The shawl has become my go-to stim. If I have nothing to do, I will pick it up and add another row or so. I have three more balls of wool to go, and it will be delightful when it is finished, but I am just not certain when that will be.
I have realised though that it doesn’t matter. It can take another three years, if need be, but the memories that will be tied up in it is huge.
The fact that I am using a hook that I bought when I moved into the house with my husband, and that the wool was a gift from my mum means that every stitch means so much, it is my family and my home. This will be the kind of shawl I will hand down, not something to recycle.
Right at this minute though I am going to put the shawl aside as family members need scarves. I have thought of knitting enough that I just produce a huge box of them and ask them all to simply choose the one they want.
Of course, putting a couple of random fluorescents in there as well. Or the odd striped pink and yellow… Because home knitting is allowed to be in terrible colours.
Christmas has never been a great time for me. I always end up with a cold and I find it very stressful.
There are historic issues. The Christmas of my childhood was a structured affair that I should have loved but didn’t.
Structure is something an autistic loves, sameness is safe, but because it was for just one day, it never worked well. I would also go from just socialising with my parents and siblings to a small house full of extended family.
Christmas Eve was always dress up in your finest as well, something I have never been comfortable with.
My inability to socialise meant that I shied away from all meet ups and parties, even those including my family.
Heading to Nan’s would mean seeing extended family that had knowingly stated I was ‘weird’ and ‘difficult to get on with’. They were just not people I found myself comfortable with.
Nan would serve up food stuffs that we didn’t get in the house; a mass of sugar and cream served in a buffet style meal. Of course, this caused another problem as I can’t tell when I am full, there is no stomach switch off, so I can overeat very easily.
At the buffet I would simply take more food than was socially acceptable. I would be the same with drinks. This and my chubby, not fat, but well-rounded appearance got me a name for finishing plates and eventually it was something I did. Even when I didn’t want to.
It was my job, a rule and as an autistic I follow rules, to the letter.
It has meant that I have never done a buffet, because I know I will fall back into bad habits, but lately I have been undergoing counselling and treatment for some of the rules that are detrimental now.
I mean they worked when I was a kid but now, they just cause worry and stress. I’m not quite sure how the process works but it does.
The rules are slowly being altered and my constant reliance on them is going to come to an end, hopefully. Eventually I may not be governed by them, there is a side effect though, I could very well appear more autistic than I do now.
I have a CAT Q of 155 which means that if you met me in the street or in a pub, you wouldn’t see that I have autism. I mask and camouflage so well that unless I have a meltdown in front of you, very unlikely, you won’t see it at all.
Well, with the rules being relaxed or even gotten rid of, there is a possibility that I will be seen as autistic. I could stim in public, and I may walk away from a conversation I don’t understand. Or I may simply decide not to socialise because I don’t want to.
Now I must, it is the rule.
I guess to test this I am doing a buffet type meal for the family this year and another for friends just after Christmas. It will work much better for them, and I simply will place standbys just in case my rule kicks in and I start to finish plates.
My husband will keep an eye on me and if there is a problem, I will take the food out of my eyeline – it works remarkably well. And I don’t mean that I’ll suddenly shut down the buffet, I mean I’ll go sit and crochet some shawl in the living room.
One thing is certain this Christmas I am hoping that everyone has a good time and maybe, possibly, I will get a rule broken, one that means I can have a little more freedom.
Buffets need not be an issue anymore; I might even be able to visit a party with one. And there is a possibility I will finish another row or two of my wedding shawl.
Christmas comes around every year… And for the life of me I still am not sure how I feel about it. As a kid I loved the lead up to it and the day was a nightmare filled with family I hardly knew and loudness that would make my head spin.
Now I have a family I love all of it, although the logistics of the day can be daunting; two nut allergies, one non-dairy, one vegan and one who won’t eat anything with eyes. At the same time though I love that I can get stressed about logistics.
The fates were not in my favour for getting any of those things. This last year has been tough and wonderful at the same time.
I have watched people go from clapping the doctors and nurses to denying them a pay rise so they can have a comfortable existence within today’s financial crisis.
The price of food and fuel has risen beyond what I ever thought possible. The other night R and I went out near midnight just to get fuel for the car because it was below everyone else by ten pence.
It felt like the times my parents would turn out the lights and we’d have a bath by candlelight as a game, but the reality was we had no money. Oddly, that was a Conservative government as well.
I am stepping in the shoes of my great grandmother by living in Wales, but I accept that we do things differently and it works. Or rather it works better than England.
At the beginning of the year, we were all richer, but as Christmas sparks its way into our lives via twinkly lights and decorated trees, I see that people are pulling together more. We are going out of our way for people.
Now if we can simply see that those claps whilst in lockdown need to become a few more pence, then the NHS will survive and there will be more beds. Because in the NHS, the internal currency isn’t money, but beds.
My wish for New Year is that all that sound, all those hands clapping could simply equate to coins and common sense then Wales would be fine, with a full NHS service where medication and aid is still free at point of use.
So that someone, like me, who never thought they could have a family, will dish up an interesting meal coping with nut allergies, dairy intolerances, vegans and vegetarians, because they survived due to the NHS.
That they are given a chance at being a mom, or a dad, or a strangely compelling aunt or uncle, a sister, brother, child or friend.
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Oh i loved ( but an odd word to use ) reading this Kate and what a wonderful person you are – how lucky i was to have you as writer on the Masters CW at Lampeter — you enriched the course and deepened our understanding of so many issues. Nadolig Llawen i ti a R, –
Thank you x Loved that course. Nadolig Llawen