This post is the first one in a while which has been a bit more ‘normal’ for me. This one isn’t in reference to the Covid-19 situation, this one is more like what I usually write for you all and I think I am writing it with a bit of personal push. What I mean by that is I am aware that over the past few months my desire to do most things has disintegrated, I am struggling to motivate myself at all and this is very hard and very frustrating so I want to start trying to give myself a little bit of a push. I want to try to start giving myself some small unofficial goals, some things that I usually enjoy and have no problem with completing. One of these things I want to try and get back into completing regularly is going to be the blog, I’ve had a few ideas come up for me recently and I’m seeing that they pass me by without being written and that’s why this piece came about the way it did.
So, this post idea came to me while shaving my legs. Bit random, but I’ll explain. I don’t often shave my legs, I don’t want to force myself into the social norm, I keep up with underarm shaving religiously because of social norms and I don’t feel legs should be as big a deal. I tend to only shave my legs during the summer months and only really up to just beyond my knees as above that they are rarely on show (and as a result of thirteen years of injections and cannula placement in my thighs the hair on them is very light and sporadic). The thing that caught my attention and made me think was that I sit on the bathroom floor on a towel with a basin of soapy water to shave my legs. I will do them in the shower occasionally but I find it very difficult to do. Even in my modified fashion, I came away with several small cuts, and that isn’t unusual.
So from that, a survey emerged, a survey which I sent out to private Facebook groups with a large number of neurodiverse people, and making the survey helped to give me a little push to actually write the corresponding blog post. (I haven’t even let myself read all of the responses prior to starting to write this because I felt that would mean I might back out quicker..) The Survey was about all the little things that are affected by neurodiversities, things like adapted leg-shaving or washing, list-making or having several alarms a day to remind us to do things. I wanted to see how many of us have little things which probably use more effort and energy to get through the day than the average typical person. I know that I often don’t think about the little things, I don’t acknowledge the difference in energy output so here is our recognition of those things.
First I wanted to get an idea of the neurodiversities of the people who answered the survey, mostly so I could point out what these applied to and that other neurodiversities may have other experiences. Of the surveyed people none had a significant mental health condition such as Bipolar Disorder, Schizophrenia or OCD and none had an acquired condition as a result of an injury. 50% of the people involved had ASD, 28% had dysgraphia, dyscalculia, dyslexia, dyspraxia or dysphonia and 21% had ADD or ADHD. I’m going to try my best not to make this sound just like a report but I apologise if it comes across like that, but there was a lot of data and so that might be difficult.
So the next section I looked at was more about the what and the how of these small things that influence our lives. I was surprised when I asked about the areas of life which are affected that all seven of the answer options had at least four people who experienced issues in that area. All, yup, all, of the responses said that Allocating focus was an issue they had. My description of allocating focus was those things that need to be done and perhaps get overlooked as well as hyper-focusing on specific tasks or activities more than others would say we should, I was surprised to see that this was a part of all neurodiversities, regardless of the type. The second biggest issue that people seemed to have come with leaving the house, whether that was remembering to secure the house, remembering to bring the right things or leaving in enough time. Other areas were cleaning and organising, grooming and hygiene, eating and drinking and personal safety and security. I asked if people had modified daily living tasks in order to help them achieve these things, 28% hadn’t modified things but the rest had and reading the comments on how they had modified things was interesting, both in terms of things I do also and things I hadn’t thought of. People said that they write lists or set reminders on their phones to complete tasks. Someone mentioned having a bag that is always pre-packed with the essentials for leaving the house, this is something I suppose I do to an extent as I have one handbag that goes everywhere I take a bag because I have my EpiPens and purse in it. During term time I have most things in my Uni bag, and I always take my bus pass out my purse before I leave the house to go for the bus, I tell myself this is because I don’t want to have to juggle everything when I get to the bus stop but I suppose I also do this in order to make sure I have it. I do use alarms on my phone but the more I get used to our amazon echo the more I am sure that once I live alone I will be getting one since it is so easy to add reminders since you don’t have to sit down and input them, you can simply tell her.
Another thing that I saw in this, which actually was in a later question too, is that a lot of people have priorities, they have learned that some things need to be dropped now and again and I am so glad that people are doing that because I get it. I know that I can be a little hard on myself at times but at the same time I know for me personally keeping on top of specific things and not letting them slip makes it easier to keep going. After my bedroom had the makeover from hell last summer I have been a lot better at keeping on top of tidying. I’ve found it more stressful seeing things come back into my room which haven’t been in it for almost a year because I’ve really had my eyes opened to how much a tidy room helps me feel motivated and happy. I need to keep on top of the tidiness because if I let it slip it will only get worse, however, things like tooth brushing or drinking enough water in a day, I let those things slip if I need to. I asked everyone if they thought their neurodiversities affected how they think about daily living tasks, most agreed that they did and others explained why. A couple of the comments stood out to me, one which mentioned that when at school they had often been told they couldn’t do things as a result of their neurodiversities, the decision being made for them but having the opposite experience now as a parent. This was interesting because I’ve also experienced both, my parents were always told I wouldn’t cope with a mainstream school environment and I have got to University, sitting at a very good level in my grades despite the fact I am pretty sure I put in double the effort others in my class do in order to break even. That doesn’t just mean in terms of it taking me a lot longer to read and comprehend set readings for classes but also the experiences I can have on busses, the issues that come with blood sugar control, issues with distraction and knowing I need more sleep than most people my age to function. I don’t always get the support I could use, I don’t always ask for it, sometimes I make things harder for myself due to liking neatness and order in my notes. It’s an odd balance.
The other comment that stood out to me relates a lot to the other questions that I asked in the survey so I want to use it as a nice segway (even though I probably ruined the segway by telling you it was a segway). This comment was that they often find it frustrating when neurotypicals don’t get it. Only 7% of the people surveyed said they don’t feel pressure to complete daily living tasks, 21% said they felt that pressure from the general population, 28% felt they put that pressure on themselves but the majority, 42% felt the pressure to maintain daily living through friends and family. Furthermore, 64% of people had said they found their issues in daily living to be both upsetting and frustrating at times, 64% also said that they sometimes get annoyed with the way their neurodiversities affect their daily living, none said that they are never annoyed by this. I also related to all of this, feeling frustrated by how hard I find some of the tasks. The few times that my parents have gone on holiday (three times so far I think) without me for more than a weekend I have found it eye-opening how a handful of added tasks to my day affects me, things such as having to make food three times a day, taking the dog out for a walk at least twice a day but also remembering to let her out to the toilet, remembering to lock doors and listen for the doorbell. Only one of these three times was I actively completing uni work and attending classes at the same time, and I ended up having to have a large day of tidying before my parents got home. I found every night I was later going to bed because I simply hadn’t got through everything on my mind and I knew I wouldn’t sleep unless I did.
I also got myself thinking when I asked about where they felt pressure to keep up with these tasks. I realised that I fell into two categories and I suppose they are an example of nature versus nurture debate. You see for me I would say most of my pressure is on myself, but there is some from my family too and I suppose the older I have got the more I see that the part of me which puts pressure on myself is inherited (genetically or learnt? Half and half? whichever) I don’t allow myself to make excuses for myself, which doesn’t mean I overwork myself (I mean, I do, but not always). I like to keep up with what I can, I see that for me the best way to live is to keep on routine, if I let myself get into the habit of not showering often enough then I am more likely to keep going with that, and I am more likely to see my mental health and motivation suffer. The same with tidying, with hair brushing and with Uni work. This doesn’t by any means prevent me from letting these things slip, of course, they do and they do often, but life experience and my personal pressures mean I frequently get back on that horse. (I find a lot of irony in this statement because the phrase explains most of my life to a ‘T’ but despite having ridden for many years on and off and weekly from age 6 to 15 I have never actually fallen off a horse…)
My last question and I am very proud of you if you’ve made it this far in one sitting cause this has turned into a long one somehow, was if people saw any positives with their neurodiversities and daily living. I did receive no’s and yes’s but I liked that some commented specifics. People mentioned that their ability to hyperfocus can be a positive (I totally agree with this, particularly when it means I can cope with staying up till 3am to finish a task and still function the next day on the high of finishing the task) they also said that they think it makes them more self-aware, more able to see what truly matters in life and what they should and should not push to do. I think that is a thing I have seen a lot in neurodiverse people, the ability to see the joys in life both the simple things that others overlook and to see the way that so many people are stuck in the machine of society. We are better at seeing our struggles, better at seeing some things don’t matter as much as the neurotypical population wants them to. We might spend a lot more time on things that others don’t find important but sometimes that means as much as the little things can be our detriment, us neurodiverse people are better at seeing them and maybe enjoying them.
Thanks for reading everyone, I hope this was an interesting post for you all and that you got something from it, I hope you are all getting through the madness that is happening in the world at the moment. I want to do a special shout out to Black readers, I want to say that I, as a white person, of course, can’t truly understand the experiences you have in life but that I sympathise as much as I can and I am behind you. Enough is enough, the societal racism that is still so strong in some of this world NEEDs to end, thoughts, prayers and power to you all. Hold tight everyone, no matter which fight you are going through at the moment the world keeps turning and time will keep going, we will get through this. As always please feel free to comment your thoughts on this post as well as ask any questions or vent anything you need to vent, speak to you all soon 🙂