stimming

  • I've chosen noise as my next topic to explore as it's one that fascinates me, and I haven't quite got my head around it fully yet.

    I have a very mixed relationship with noise. I'm a musician by trade, and a music teacher. I LOVE noise. When I was teaching secondary music I could quite happily sit at my desk surrounded by a class of thirty kids playing keyboard while I marked my A level essays, and still be able to pick out the ones who were hitting the demo button instead of doing their work. My classroom was noisy and chaotic, and I loved it.

    On the flip side, sitting in a restaurant trying to have a meal I can literally lose the ability to speak, because I can't process the level of noise around me. Or maybe it's the type of noise - people speaking, glasses clinking, plates and cutlery, waiters walking around... I remember feeling a complete failure because every time I would go out for a nice meal with my ex-husband we would sit in silence. I found it really hard to hear what he was saying, even though he was only just across the table, and it was such a gargantuan effort to me to get my thoughts in order to think of anything to say.

    I LOVE loud music. I realise I'm using capitals every time I talk about music, but for me it feels necessary in order to emphasise Just How Much I Like It. It's excitement, anticipation, happiness, comfort, and good music often feels like it's filling up my whole body. There are certain pieces or types of music that make me want to climb inside the speaker and curl up with my eyes closed. (There are other types of music that make me want to vomit.) I write and arrange a lot of music for my choirs, and when I've got the basics of the harmonies together I like to turn it up really loud so I can get inside it and feel where it works and where it doesn't. When I used to use a laptop for this my husband would often walk in to the room and find me lying on the sofa with the laptop over my face, music blasting out.

    I sometimes find it difficult to process things I've only heard, rather than read or written about. My daughter loves to write stories, and is forever wanting to read out bits to me, but my brain can't catch hold of what she's saying in the same way as if I read the words from the page. I can follow stuff I watch on TV, although I don't watch anything particularly taxing or complicated - but I am much more comfortable if the subtitles are on.

    I have an awful lot of music in my head, and it all co-exists quite nicely together. When I'm leading my choirs I can sing along with any of the parts, and often switch between parts multiple times during a song. I have a complex relationship with rhythm, which seems very straightforward to me, but seems to baffle other people who just can't seem to understand how it all fits together. But there's no 'give' in my system - if I'm trying to learn something new and am following someone who's rhythm is just slightly off from where I think it should be I fall apart completely.

    I'm not very good at tuning my fiddle. This often makes me feel like I'm a sub-standard musician, but there are days when I just can't hear what the right note is, no matter how hard I try. Other days it's not so bad. If I'm trying to do it somewhere noisy I have no chance whatsoever. Once, I was so frustrated by my inability to hear things properly that I asked for a referral to ENT. This was following a cold, and I was convinced that I had problems with my ears, as things were sounding stuffy and mixed up, and I couldn't focus on things. After undergoing quite a lot of tests, I was told that my hearing was exceptionally good, and much better than most people's. It's only now that I'm realising it probably wasn't anything to do with what I could *hear* but my ability to process it.

    I'm not totally sure where I'm going with this post, so I'm going to leave it there. I still don't quite know what makes the difference between a noise I am going to love, one that is going to quietly irritate me, or render me unable to speak, or one that is going to make me feel physically sick. I would love to talk to anyone who has similar experiences with sound - please leave me a comment or tweet me @mummywriter.n

  • So here goes, the start of a self-exploration of what autism means to me. In this first blog I'm going to talk about stimming.

    The term 'stimming' refers to self-stimulating behaviours that are often used by people with autism or other developmental disorders. The most common one you're likely to think of is flapping your hands - my son does this a lot when he's excited! Some people rock, some people jiggle, hum, bang their head, make noises; there's really no end to the variety of stims possible.

    My stim is not a very healthy one - I pick at my skin. I've been doing it since my teens, I think, but it has taken me the best part of twenty years to realise why. It's not the easiest thing to write about, as I've always been quite self conscious about it, and how it makes my skin look. I have a skin condition that means I get a lot of little bumps and miniature cysts on my skin and I find them completely irresistible to pick at.

    I mostly do it when I'm stressed, and when I've got a lot on my mind. For a while I wondered whether it might be a form of self harm, but that didn't sit quite right as pain was never the object of it, plus I also do it when I'm happy. It's not quite accurate to say it helps me to think things through, because my thoughts don't really follow a coherent narrative while I'm doing it - it's more like the process of focusing on my skin allows my brain to rest for a minute. It's sort of like a car where the engine is running but it's in neutral and just idling - not quite switched off, but not going anywhere, and no particular forces are being exerted on it as it just turns over quietly to itself. I find it really calming.

    I know it's not a sensible thing to do, and I know that I ought to stop. I've read a lot about trying to replace harmful stims with safer ones, but in truth I'm unlikely to do that because it makes me feel good. It feels a bit strange to be owning it so publicly after so many years of being embarrassed about it, but I have gradually come to accept it as part of who I am.

    I would love to hear from you if you have a similar sim - leave me a comment below! And if you're thinking 'I can't be autistic because I don't flap' - yes, I have had similar thoughts myself.

  • Yesterday was tricky. I was doing a new thing that I'd never done before, and which necessitated me being around lots of noisy children for a prolonged period of time. (Tap dancing in a showcase, if you're interested.) When we got home, I told my husband that he was not allowed to talk to me until I came out from under my duvet.

    Up until now, my duvet has been pretty much my only coping strategy, and as life is going through a difficult phase I feel like I'm using it all the time. Often I get home from work and go straight to bed. I've been eating meals in bed. I've been working in bed. It's good, because it does help me feel better, but it's quite limiting, and it's affecting my relationships with my family, particularly my children.

    We had planned to go out for a family walk yesterday afternoon, but for one reason and another I ended up walking quite a lot of it by myself. I was feeling stressed out and overwhelmed. My brain was going at 100 miles an hour. I started to wonder - had I remembered to take my antidepressants this morning? Was I due a replacement hormone patch? Why on earth was I feeling so bad?

    It occurred to me as I was walking that whenever I feel like that, my default position is to assume it's because I've forgotten my medication. Often I have. I take it, and sure enough, I'm feeling better within a day or two. The times I don't feel better again, well, maybe it's taking a bit longer to work this time. But yesterday, I had taken my medication, and I wasn't due another hormone patch - which forced my thoughts in a new direction. If it demonstrably wasn't that I was simply lacking in medication, then there must be another reason for how I was feeling.

    I quickly realised that my short stint under the duvet hadn't quite got me as ready for being around people as I had hoped. I was overstimulated, and stressed out. I have one particular piece of music that I can listen to when my brain needs untangling (it's this, by the way) and I decided I needed to stop, right there, in the middle of the path, not caring what anyone else thought, and listen to it whilst staring at the trees. So I did.

    As I started to feel better, my mind wandered. This wasn't a one-off. I feel like this a lot of the time, and have done for as long as I can remember. Can I really put it all down to not medicating myself properly?? Could it be that I have been experiencing sensory overload, which - unrecognised, and unmanaged - I have turned in on myself? Although I am autistic (diagnosed only recently) I don't really stim much; growing up as a teenage girl who didn't really fit in, it's not really surprising - I would have done anything to avoid standing out from the crowd. But at what cost? Stimming is really just a way for us to get ourselves balanced again, when one or more of our senses is a bit out of whack. If I was in the habit of regularly stimming, I wondered, would that have provided an outlet for the screaming in my head? Would it mean that I wouldn't need to spend so much time in bed? Maybe I could manage my feelings a bit better throughout the day, rather than storing them all up until I just couldn't cope any more?

    Looking back at my life, I see the pattern repeated over and over. I push myself to the limit, and then collapse in a heap. After my GCSEs I was ill for months, and then had chronic fatigue syndrome for a further two years - which only went away properly once my A levels were over. When I started work as a teacher, I could make it through until about Easter, and then invariably I would have to take at least two weeks off school because I was so ill and took so long recovering. And even now, the only way I was getting through the week was by being in bed every minute that I wasn't at work.

    A new thought started to form in my head. What if I could find another a way of regulating myself? Could I actually do a few small things, throughout the day, that would help me to cope and mean I had enough energy left to play with my children when I got home?

    As I walked, I tried a little experiment. I tried flapping my hands.

    A new thought started to form in my head. What if I could find another a way of regulating myself? Click to Tweet

    It felt good. It felt like there was a lot of energy in my hands, once I'd flapped them, and a bit less of it bouncing around my head. I tried tapping my fingers against my thumb one at a time. It made a nice little pattern, and that felt good too. The pattern became the underlying beat for a song that was going round in my head. I began to feel calmer. All of the energy that usually roared around inside my head felt like it had a bit of a place to go, for the first time. I felt like I could stop and wait for my family to catch up. By this point we were headed back to the car and I saw a Christmas tree outside a pub, with lots of flashing lights. I stopped to look at it while I waited for them. It was lovely. Looking at the lights made me feel calm.

    I'm going to experiment with stimming, and see what difference it makes. It feels a little odd to be doing it deliberately, but when you have been masking your autism for thirty seven years I think sometimes you do need to be a bit deliberate. Masking has become a habit. Turning my overload inwards has become a habit. I need to see what other options there are.

    Today I've been playing with a squeezy ball that I originally bought to put in the kids' stockings. I love it. I have been experimenting with different ways of using it - running it over the backs of my hands and my arms, for example, but I like it best on the palm of my hands. As I'm writing this I'm stopping every couple of sentences for a squeeze; interestingly, as I've gone on the squeezes have been shorter, and there's been more time in between them. I have also put in a massive order at Stimtastic, and I am really looking forward to trying out my new stim toys and jewellery.

    It hasn't even been a week since I got my diagnosis. This feels like it's going to be quite a long journey.

© 2019 Cat McGill