Chances are that if your child is autistic and you’ve read up on it, you would have come across something called stimming. But what actually is it? Is it something that parents should be concerned about or is it just harmless behaviour which serves an important purpose at that moment in time?

Here, Libby, who has written for My Family, Our Needs before about autistic meltdowns, tells us what stimming means to her.

What is stimming?

Stimming is often described as an expression of physical and repetitive behaviours which is thought to help people cope in certain environments or situations. It’s important to remember that some people may not stim at all and stims can also vary greatly. I personally stim when I am stressed, anxious or happy and it can be difficult for others to understand what this behaviour is, let alone what it means! I stim for many different reasons and this has varied in different stages of my life. I will do my best to explain what I mean by this.

Stimming at a young age

As a child I would instinctively pace or hand flap as a way of stimming when I was extremely happy or when I was deep in thought. I would often pace in my house and I would always have the same routine when stimming. I paced in front of my television (my poor siblings would have to watch television around me!). Physically I would be walking around my house but in my mind, I was in another world and I would often think about things I enjoyed, and I would create stories within my own mind. These stories would usually be video games I had played or TV programmes I had watched. I did this because it helped me relax, I was at my happiest thinking about activities I enjoyed and if I didn’t stim I would become very distressed. I needed to stim to unwind and gather my thoughts.

I was afraid to hand flap or pace outside of my home so I would mask my behaviours as much as I could. Sometimes I would flap my hands or pace without even realising, it was very much an automatic response. As I got older, I became a master at masking, but I could never fully stop stimming no matter how much I tried. A few years ago, I was at university and I started to squeeze my hands. My friend asked me whether I was cold and I said, ‘Yes I am.’ I was not cold but over a period of several years I stopped hand flapping and started to squeeze my hands instead as it was less obvious to others.

When I feel very happy/excited I can’t help but express it physically. Imagine you have just found out you have won the lottery, adrenaline suddenly builds and a burst of energy causes you to excitedly throw your hands up into the air. However, I have not won the lottery instead I am satisfied that the rug in my living room is exactly in line with my fireplace. I often find that my emotions can be exaggerated, I will feel overly happy or excited about certain situations which triggers stimming.

Accepting stimming is a part of me

In recent years, I have felt more comfortable with my stimming caused by happiness/excitement. I was at university in December 2018 and my friends invited me to watch the Christmas light switch on in our local town. I have been to this event before and as soon as I was invited, I was filled with anxiety. I pictured the layout in my mind, I knew that the entertainment stage would be by the big television in town and I knew large crowds would gather around this area, I knew that the food stalls would be next to the sun dial, I knew there would be photographers with flashing cameras, and I pictured several fairground rides which had clashing music and lights. I tried to dig so far into my memories, and this caused me to panic. But in the end, I decided to watch the Christmas lights. We stood near the back of the crowd and bright lights flew into the crowd from the entertainment stage.
‘Is this okay?’ my friend asked. I was not expecting her to ask but it instantly made me feel calmer knowing I had her support. The lights were switched on and Christmas music instantly played, my friends danced next to me and I was filled with excitement. I could feel energy building up, going straight through my spine and into my hands. I flapped my hands, something I have not done in public in many years.

As well as stimming for happiness and excitement, I will also stim when I am feeling stressed or anxious. I have Trichotillomania, which for me is a stim. I will pull out my eyebrows and hair. I also scratch my hands/arms, I will pace and bite my hands and lips. I find that in every stressful situation I will subconsciously stim.

Information overload and stimming

Here are a few examples of my stimming caused by stress and anxiety:

I was sitting at my desk one day in primary school, my routine hadn’t changed but I was feeling on edge while waiting for my first lesson of the day to begin. The morning sun was beaming through the windows and I could see dust particles shining and falling around me. Students were talking amongst each other and their conversations clashed. I couldn’t stare at anything for too long because I was looking too deeply at everything, the teacher used a blue pen and then changed to a black pen, the inconsistency caused me to panic. A teacher looked over to me and said, ‘Libby, are you okay?’ I looked down at my hand and I had been subconsciously scratching my nail into my hand and I was covered in blood, but I hadn’t felt any pain. My school had a meeting about the gash in my hand, I had social anxiety and I didn’t talk to many people during this time. I remember this man was talking directly to my mum and saying, ‘I just don’t understand what could have caused this.’ I didn’t fully understand myself, I was so focused on everything around me and I really was not coping in that environment.

I remember the day I started pulling out my eyebrows, I was playing outside as a child and becoming stressed when there was a lot of children playing around a small tree I used to sit in. I love nature and I would spend hours sitting in this tree. I watched quietly as children ran around the tree and accidentally broke a branch. I felt my heart race in my chest as they changed the structure of something I loved, the children fell about laughing and I became overwhelmed as they started to damage the tree further. I started pulling out my eyebrows as I watched from a distance.

As I got older, I realised that this behaviour was harmful and I should try to focus my energy on something else, so I started wearing jewellery. I often wear jewellery as it gives my hands something to fiddle with and sometimes I put my necklace in my mouth instead of biting my lips. I also carry around a fidget spinner, I rarely fiddle with it, but I always keep it in my bag in case anyone else needs it. There are times where I can become very stressed and I will self-harm still.

In some ways, stimming was more difficult as a teenager as I would worry about judgment from others (especially my friends!). I tried to stop stimming all together and I found that the more distressed I became. I was at college one day and I was not coping at all, I told my friend (who didn’t even know I was autistic at the time!) that I needed to leave. Instead of asking questions she agreed and we walked out of college into country lanes where I paced for at least an hour before arriving back at the college.

Should stimming be discouraged?

I mention this story because someone once asked me whether stimming should be discouraged during teenage years and adulthood because it is not always seen as socially acceptable. There are a few issues with this. Firstly, if I wanted to stop stimming I physically couldn’t, there is just no way of stopping it. I also think it’s healthy to stim; my mind is trying to cope and I should embrace it.

When I realised I should embrace stimming I found that I started to cope with stressful situations more effectively and I believe the focus for me now should be on how I can prevent harmful stims rather than stopping it all together. My teachers at University and my friends are aware that I stim so I am much more comfortable with myself in stressful situations. Last year I really wanted to try and give presentations in front of groups of people despite having social anxiety. This was extremely stressful and I would stim just thinking about it. On the day of my presentation I was focused so much on what I had to say that I forgot to put my jewellery on in the morning. I started to scratch my hands during someone’s else’s presentation and my friend noticed this but said nothing as she handed her keys so I could fiddle with them. A great act of kindness and prevention!

Where I am now

I had an exam several weeks ago, it was a three-hour exam and I find exam situations extremely stressful. I was doing the exam using a computer, I had a mixture of feelings and all these thoughts were flying through my head. I was uncomfortable because I was sat on the very end of the table whereas last time I had an exam in that room I was sat by the window. I was frustrated because the computer I was using was a different type of computer to the one next to me. I was stressed because exam conditions are quiet to prevent distractions, but subtle noises appear so loud. The clock on the wall was ticking and reminding me that I was in this stressful environment for three hours. I could hear the typing of frantic fingers and the sighs of students around me. But I was also excited, a question came up on the exam paper on a subject I was confident with, thoughts shot through my brain and I was trying to organise them in some way.

I sat there for a moment trying to gather my thoughts, I became panicked because I wanted to stim- no I NEEDED to stim. I put my hands under my desk and I squeezed them repeatedly. This made me feel calmer so instead of trying to fight or mask it, I stopped typing every so often and stimmed by squeezing my hands. My head was also twitching and I have never experienced this before. Looking back on it, I believe this was because I was limited on what stims I could do in that environment. While stimming is a subconscious act, I do believe how I stim is influenced greatly by my environment and where I feel most comfortable. I am more likely to flap my hands and pace at home because I am not in a vulnerable position, whereas during an exam I feel extremely vulnerable and limited so my stims can vary.

I have become much more positive towards my stimming in recent years. There are always going to be positives and negatives involved but for me, it is a way of coping and for the most part, I enjoy it. Hopefully in years to come I will mask less and stim more! If you found this useful please let me know by commenting or messaging me or My Family, Our Needs personally. I would love to know your thoughts and even your experiences. Please remember that this is my own personal view on stimming and any concerns should be discussed with a professional.

If you want to read more of Libby’s insightful writing about her autism, you can find her on Twitter