sensory issues

  • This year was my 39th Christmas as an autistic person, but the first Christmas that I have known I'm autistic. It's been interesting. One of the things I have found a little weird about exploring my autistic brain is that I keep getting these little moments of "Oh, that's why I've always done this...", and this Christmas has been no different.

    I had a big one today. I've been reading lost of posts from other autistics on Twitter talking about coping with Christmas - the sensory overload, having to be social, and how they survive it all - all the while thinking that I've never really had issues with Christmas. I did have a little weep yesterday (Christmas Day itself), but that was because I had a stinking cold and didn't get enough sleep... wasn't it??

    Today I had a bit of a realisation. My husband dances with the village Morris side, and Boxing Day is a big day for them. As I was driving over I had a sudden flashback to last year, sitting crying in my car waiting for Husband to finish dancing so I could go home and back to bed. When I thought about it, I realised I've often struggled on Boxing Day. It seems to be the moment when everything 'hits' me, and the more I thought about it the more I remembered regular Boxing Day meltdowns over the last few years. At the time, there was always something to attribute it to - we were going through a tough time and it had all got too much being the main one. Today I started wondering if there was something else to it.

    In general, I am pretty bad at noticing when I'm getting overwhelmed until it really is too much. I suppose it comes from nearly four decades of masking. I will keep going and keep going, either until I keel over, or until the pressure is relieved, and then I keel over! I had a couple of meetings just before Christmas - both of them were only with one other person, and they were good, positive, and helpful meetings, but it was still too much. I got home and had to go to bed. It frustrated me that I hadn't noticed in time to be able to do something about it.

    I'm trying to get better at noticing when things are too much, but at the same time trying not to spend my entire life in my pyjamas under my duvet. As it transpires, I did go back out with the Morris today after dropping Tickle off at my mums, but I think mainly because I knew I didn't have to. Husband is so incredibly supportive and was quite happy for me to go back home and spend the day watching TV if that's what I needed to do. That knowledge gave me the freedom to make my own choice about it.

    My next step is going to be working out how to do this with the rest of my life. I've been approached about doing some work for a local arts charity next year, and I'm terrified at the thought of taking on an actual proper job instead of working for myself as a freelancer. I have absolutely no frame of reference for how to be successful as an autistic person in the workplace, and I'm not yet confident enough with my own needs and triggers that I can give particularly helpful guidance.

    I know it's a cliche, but I will have to take it a step at I time I suppose. Keep trying to notice what's going on with me, and keep trying to work out what I need to do to be a fully functioning, happy, human.

  • I thought I couldn't be autistic because I didn't have any sensory issues.

    Then I remembered how much I hate stickers. Thin, shiny bit of paper that stick to your skin. Urgh. And then they peel up at the edges and when you brush up against them they make a flicking noise... it makes me cringe. I hate going on training courses where they make you wear name stickers. I have learned to tolerate it, but I will take them off as soon as I can. The trouble is, taking them off involves touching them, and then when you try to throw them away they get stuck to your fingers...

    While I'm on the subject on thin, shiny bits of paper, I also can't stand receipts. When I was younger I literally couldn't touch them without feeling a bit sick. Now I have desensitised myself enough that I can hold one with a thumb and finger until I can find a bin to put it in. Or I stuff them into a particular pocket of my handbag (which I can then steel myself to empty all in one go). If I'm shopping with my husband or daughter I will just get them to take the receipt. My husband is always telling me off for not keeping them, but, urgh, WHY WOULD I DO THAT???? I can't think of many things worse than a draw full of receipts. Actually, I can. Finding one in the bottom of a shopping bag.

    After acknowledging that my dislike of thin, shiny bit of paper could potentially be described as a sensory issue, the realisations came thick and fast.

    Toothpaste makes me gag. I have given up completely on cleaning my teeth in the mornings because I've been sick so many times. I can usually manage ok in the evenings but I need to do an awful lot of rinsing and spitting, and if I'm stressed or feeling down, teeth cleaning is the first thing to fall by the wayside.

    I'm not even sure I will be able to write this next one because even thinking about it can make me gag... I am taking a break every few words to stare fixedly at other things in the room to try and anchor myself in reality and not get too drawn in. I hate, absolutely hate... oh god I can't even write the words. Let me try another way. I love to paint my nails. It's when they get too long that I struggle. I am lucky to have a very loving and tolerant husband who cuts them for me while I read a book or scroll through Twitter or *anything* to keep my mind off what is happening, because otherwise I will start to retch. I have been physically sick more than once when trying to do it myself. (I had to take a little break just then because I actually did retch a couple of times just thinking about it. I'm now under a duvet with a rainbow blanket next to my face because I really want to finish explaining this.) I will move on in a minute because I don't think I'll be able to fully explain quite how much this affects me without actually making myself sick, but I really want to get across just how distressing this is. Once I start to think about 'it' it gets stuck in my head and it's like it might as well be right in front of me. On a couple of occasions I have been at a friends house and found a discarded (deep breath, deep breath, deep breath) clipping on the floor or sofa and I can still remember those times in vivid detail even though one of them was more than 20 years ago. It is taking every ounce of self control I have not to start heaving again just thinking about them. The only way I can get over it is to force my mind on to something else, like the feeling of my blanket against my face, and the different colours of wool.

    Ok, back in the room, even if I've been so traumatised by what I've just written about that I can't remember what I was going to write next.

    (Breathe.)

    Smell. I have a really sensitive sense of smell. I remember as a kid being convinced that I could smell the difference between hot and cold. When I was a teenager I was really self-conscious about being on my period, as to me I smelled totally different to normal.

    I am really sensitive to bright light. I have to have photochromic lenses in my glasses because it's too bright for me outside without a bit of a tint. I've recently started trying out contact lenses, but yesterday I was wearing them in a room with very bright strip lighting and it was glaring so much I had to switch back to glasses! It's like driving in the dark and the rain, when the headlights of oncoming cars dazzle you. It was like that, indoors, with those lights. I could hardly see for trying to blink away the flashes around the edge of my vision.

    I've always had an issue with the word 'cribbage'. I'm better with it now, as I'm pretty much desensitised to it, but when I was younger I used to hate it. It felt like it should be made of sticks. (No I don't understand either.)

    I have a ridiculous pain threshold. I was always the kid in the playground at school who could stand and take a Chinese burn without even flinching. Once I fractured a bone in my foot and didn't realise I'd done it. By the time I noticed that my foot had been really hurting for quite a while and got it X-rayed the fracture had nearly healed. I still don't know for sure how I did it.

    I really struggle to tell when I've had enough to eat, and often don't stop until I feel a bit sick. I find it hard to tell where my body is, generally, and often thought that overeating was for me, a way to really feel my body. I've recently given up sugar completely (including carbs like pasta and bread) and since then I can't always tell when I'm hungry. I am wondering if the fact that my blood sugar is (hopefully!) now more stable rather than up and down like a yo-yo means the feeling I always thought was hunger was more of a blood sugar crash than genuine hunger. I can sometimes tell that I'm hungry these days, but at other times I just start shouting at everyone and get a headache and all shaky, and then realise I haven't eaten!

    The 'not knowing where my body is' also means I bump in to things all the time. I am forever covered in bruises from catching myself on door handles. And sometimes I just fall over for no reason. Then of course all the usual stuff - itchy labels in clothes, not liking slippery textures of foods like mushrooms or onions. As a kid I was completely freaked out by manikins and waxworks, but I'm not really sure what that was about. So, all in all it would appear that I do have one or two sensory issues..!!

    Writing this has been really quite traumatic in places, so I'm going to spend some quality time with my blanket now.

  • The lake at Blenheim PalaceOver the Christmas holidays so far, I reckon our 'nice bits' to 'hard bits' ratio is probably about 70:30. Possibly slightly better, if you take in to account the fact that the hard bits are no where near as hard as they used to be. Last year's Christmas ratio was about 20:80 at best I reckon, and looking back at the blog from this time last year it seems T was going through a bitey phase as well. The worst we've had this holiday is hitting, and even then I think it's only been once or twice.

    Gosh, it's so weird writing that, when I think back to posts I've written in the past describing the CPV that was happening multiple times per DAY, for anything up to a couple of hours at a time.

    Some of this change can probably be put down to the simple passing of time, but there are a few quite clear things I can pick out that we have done, or are doing differently.

    1. Working on emotional regulation.

    I've added a whole chapter on this in to my book (which - HURRAH! - actually now has a release date!) because, although it's quite a slow burner in terms of seeing results, over time it has produced massive change.

    The key to this is consistency. And repetition. Lots of repetition. School are completely on board with this and have been helping out too - they have a visual chart for Tickle where he can select symbols for how he is feeling, and symbols to represent calming activities that he thinks will help. It has taken a lot of patience and reinforcement from staff, but at the last parents' evening his teacher told me that Tickle had spontaneously gone up to the chart (which hangs within reach in a prominent place in the classroom) and pointed at the 'sad' feeling. And, he had done this MID-MELTDOWN. He had been able to override the panic systems in his body for long enough to realise he needed help, work out how to communicate this to an adult, and actually go and communicate it. All whilst being triggered in a fight-flight state, and running around the classroom.

    In case you're still unclear on this, that is nothing short of staggering.

    Other ways we try to encourage emotional regulation at home include affect matching - mirroring the outwards appearance of Tickle's emotions, without the emotional energy. So for example, if he's shouting at me, then I might say in quite a loud voice "Gosh! You sound very cross!" - imitating the pattern of his speech, and the emphasis he has placed on words. It's important to understand the distinction here, as I'm not talking about copying what he's saying, or imitating him to try and make him laugh, I'm talking about matching his speech patterns and body language, but without feeling the emotion myself. If I meet his anger with anger of my own, that inflames things, but if I meet his anger with words that show I understand what he's feeling, and reinforce this with my tone of voice and facial expression, then he knows I understand what he's feeling. Sometimes we do this quite naturally with babies and toddlers, without even realise what it is we're doing. It's a way of reflecting those feelings back to the child in a safe way, without emotion or heat, so they can observe and understand what is going on. When they're feeling and emotion, they're too close, too involved to be able to be reflective about it, but when we show back to them what they are expressing to us, then they can observe it, and think about it from a detached point of view.

    Anyway. This is one of my favourite subjects, and I'm getting a bit carried away - you'll just have to read it in the book! ;)

    2. Prioritising Tickle over other family members

    Emotional regulation has been a long term goal, but this was something we did this holiday which took no effort and made a huge difference. There's often quite a lot of pressure, especially at Christmas, to do 'traditional' family things. Go and see relatives, play games, spend time with extended family and friends. This year was the biggest we've ever done, as my dad and stepmum were visiting for Christmas, in addition to our 'normal' Christmas spent with my mum, grandpa, and brother.

    I love my family very much, and I'm very aware that grandpa is getting old and probably doesn't have that many more Christmas' in him. I know my mum has to cope with feeding a lot of people, who are all arriving at various times, and that she really needs to plan out how that's going to work. My dad made the trip up specially, and this was the first Christmas I've spent with him in at least two decades.

    BUT. I have to be realistic about what Tickle can manage. (And Fairy too, if I'm honest.) And seeing as he's got so good at telling us how he's feeling, I've really got to listen to him. So instead of going over to mum's for dinner on Christmas Eve, I completely changed all the plans last minute and announced we were only going for lunch. Both kids are happier at home in the evenings, and as it turned out, Tickle was very overwhelmed by all the extra people at Gran's house, and really would not have coped with that whilst hungry and tired. Then on Christmas Day, when we'd usually stay for dinner and in to the evening a bit, we went home around 4pm. There was a bit of a meltdown when we got there, but nothing compared to what would have come out if we'd insisted on staying for dinner.

    At the end of the day, the rest of us are adults, and we ought to be able to manage our emotions by now. Tickle is still learning. Yes, my mum probably felt a bit disappointed that we went home, but she'll cope. (She is very supportive about all of this in any case, so there was no issue in that sense.)

    3. Sensory stockings

    This is such a silly, little thing that I feel a bit ridiculous even saying it, as we ought to have been doing this for years! Sometimes the obvious things just don't occur to you though, do they?!

    This year, I put a lot of sensory toys in the kids' stockings, and actively encouraged them to use them to regulate throughout the day. Disclaimer: this wouldn't have worked as well with T if we hadn't done the groundwork in (1) above.

    The biggest success was this light stick. Tickle hasn't really done much visual sensory stuff before, but he loved it. I've just bought two more to keep as back ups. The other big hit was a scented soft toy rabbit. Deep breaths are one thing that does work pretty well with T and the nice smell of the rabbit really encouraged that behaviour. We also had squeezy things, squishy things, chewy things, and of course, lots of chocolate! The squishies got broken fairly quickly, so I have purchased these to try instead. I'll let you know how we get on!

    And that's it. Christmas is over, so now we're just on 'holiday' levels of disregulation, without the added Christmas bonus. A year ago, I used to dread school holidays. They're still hard work, but the thought of them no longer makes me want to cry, and I think that's progress..!

© 2019 Cat McGill