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Stories About Autism

Why I learnt to embrace the stim

Do you know what a stim is?

Sometimes Tommy and Jude do things that draw attention to themselves. People stop and stare, they whisper behind our backs, they might even say something loud enough for us to hear, offering their advice on how I should parent my children.

In the meantime, Tommy and Jude are busy flapping, bouncing, humming, screaming, tapping, spitting, spinning, rocking, running or whatever else it is they’re choosing to do, oblivious to the scene they may be causing

To the rest of the world, in that moment, these behaviours seem inappropriate, weird even. But to Tommy and Jude, and to  these behaviours are essential, a necessity, a way of coping in this challenging world they live in. What they’re doing is called stimming, and it’s time the world realised that that’s ok.

A few years ago I may have stopped and stared at them too. I wouldn’t have understood what was going on either.

When autism first entered my life I had no clue what stimming was, or why it was so important. All I knew was Jude had some repetitious behaviours that didn’t make sense to me. They made him stand out from all of the other kids and seemed to keep him distracted from what was going on in our world. Jude would tap everything over and over, for

Jude would tap everything over and over, for hour after hour, walls, tables, the TV, any object he could get his hands on. I’d watch him, and all I wanted him to do was stop. He would run continuously from one end of the room to the other, nothing I could do would stop him.

I couldn’t understand it. Why did he do these things again and again, acting as if I wasn’t even in the room? It seemed to me that these ‘stims’ were holding him back, stopping him from making any progress.

So, I tried to stop him from doing them.

I’d try and physically stop him tapping, taking away the object he was hitting or holding his hands still. I’d try to distract him, almost forcing him to try and do something else. If he was running up and down I’d get in the way, I’d try and take him into another room, or just pick him up and try and get him to sit still.

None of these amazing ideas worked.

All I managed to do was make Jude withdraw even more, interact with me even less.

Over time I began to learn more about autism; reading, taking courses, meeting and talking with others.  I changed my attitude towards these repetitious behaviours once I understood them for what they are.

Stimming means self-stimulatory behaviours, all of which have a purpose. And, I hate to break it to you, you probably stim too. Maybe you bite your nails, twirl your hair, or tap your foot. You might not even notice yourself doing it sometimes. You probably do it when you’re stressed, anxious, or just trying to relax.

The difference is that these ‘stims’ are much more accepted by society. If we saw someone sitting on the train tapping their foot we wouldn’t think anything of it. If someone was waiting to go into a job interview, biting their nails, we’d think that’s ok because they’re stressed.

So who decided that these stims are ok, and others are socially unacceptable?

The more I watched Jude, and Tommy, the more I realised just how important these behaviours are to them. Their everyday  world is a place full of so much different and overwhelming sensory input. By stimming they find a way to cope, tune out, block what’s going on around them.

jude-earsJude regularly has his fingers in his ears. You’d assume it’s because there’s too much noise for him, and that he’s trying to quiet down the outside world. But he also does it when it’s silent when the only sound is coming from his humming or other noises that he makes. So it’s more than just the sound. With his fingers in his ears, it seems as if he is trying to focus more, take control of his environment.

When he’s excited he flaps or taps continuously. He flaps his fingers right in front of his eyes when he’s watching the tv, even when he’s running. It changes his experience of what he is looking at, it helps him relax, and he finds it fun.

He’ll tap on walls, the tv, windows, doors, the staircase, even me. He’s searching for feedback, enjoying the sensation of what different surfaces give back to him.

A few years ago Tommy suddenly started putting his fingers in his ears. I laughed, and because he is so different to Jude, thought he was just copying his brother. But I was doing Tommy a disservice. Maybe the first time he ever did it he was copying Jude, but I soon realised he was being selective and choosing to do it at times that he really needed to. When things got too overwhelming for him his fingers would go in his ears. Now he seems to do it when he get’s over excited, usually if he’s watching tv, and he does it to try and keep his focus. Sometimes he’ll do it when he’s upset too.

Tommy runs, and bounces just like Jude (although much more heavy footed) and seems to crave the feedback he gets from his feet crashing against the floor. He’ll climb things and jump off, trying to land as hard as he can on his feet. He stomps through the house, whereas Jude glides on his toes.

When faced with anxiety, their stims are totally different. Jude will get angry, and lash out or begin to self-harm. Tommy will hit the floor and bury himself into a corner. So at home, you’ll find him pressed down the side of the sofa, or completely wrapped up in a duvet, face down. If we’re out he’ll attempt to do the same and be straight on the floor, no matter where you are (or how wet it is). When you’re walking along the river front and suddenly he’s face first on the floor pressed up against the wall, that’s when he’s overwhelmed. It can come out of the blue, with no warning, but that’s his way of trying to cope.

tommy-grass

Before I really understood what stimming was I just tried to drag him up, almost fighting with him to scoop him up off the floor. My attempts to make him stand would see him drop again, or just wrap his legs around me like a chimpanzee, refusing to let go.

Then, as I learnt more about autism and stimming, I began to question myself.

Why was I getting frustrated?

How was this helping Tommy or Jude?

Why were they choosing to do this?

I came to realise that a big part of why I was getting frustrated, was I was embarrassed. It was me that was uncomfortable with what they were doing. I still saw their behaviours as strange, so I was worried that other people were looking at my kids and thinking the same. I didn’t want other people looking at them and judging them like that, so it would irritate me, as I was trying to make them fit in for other people.

The more I thought about it, the more embarrassed I was, only this time, it was with myself. I was ashamed that I’d felt that way, that I’d tried to stop my kids doing something that was clearly so important to them.

The last 4 years has had a huge impact on me as a person, and made me realise how important it is to be more accepting of other people. And that means learning to embrace stimming, no matter how much it makes someone stand out. After all, how could I expect others to have a loving, non-judgmental attitude towards my kids if I didn’t feel the same?

So now, I feel totally differently when Jude and Tommy stim. Whether they’re running, jumping, flapping or tapping I know in that moment, they feel like they have to do it. Sometimes it’s not easy, especially when Tommy is spitting

Sometimes it’s not easy, especially right now when Tommy’s latest stim is spitting. He goes through spells where he spits continuously. Tommy hops, skips, and jumps around the room spitting all the while. He spits on the floor, he spits into his hands, he spits hanging over the side of furniture, he even spits at me. Last weekend, driving home from a birthday party, there were 5 minutes where he kept spitting from the back seat, and it was landing all over me.

Spitting isn’t nice. We’re taught as a society to see spitting as extremely offensive. In football players regularly trade blows on the pitch, but if you spit at someone, you’re seen as lowest of the low!

If I tell him not to do it, 30 seconds later he’ll be doing it again. If I punish him, he doesn’t understand what he’s being punished for and will do it again. The compulsion to spit is just too great, he feels like he has to do it!

Obviously, I’d love to re-direct Tommy’s energies into something else, help him find another outlet for him to focus his sensory need on. Hopefully, in time we will.

But until then, I’ll treat it just like I would any other stim. Tommy’s need to spit, is just the same as Jude’s need to flap. It serves a purpose, just like me tapping my foot, or biting my nails.

So next time you see somebody doing something that makes them stand out, stop and think before you judge. If someone’s flapping or jumping up and down, don’t just stare at them, or make fun of what they’re doing. Stimming for that person is just as natural as breathing, and just as important too.

 

6 comments

  1. Alice Soule - October 10, 2016 6:40 pm

    Stimming is something my son displays amazingly clearly…he’s also called Jude and has so many mannerisms that baffle and irritate us at the same time. I know I need to be more patient at times but it’s so hard when you are tired and have a million things going on. A x

    • James Hunt - October 11, 2016 9:49 pm

      Hi Alice. It is tiring, it’s certainly not easy. I’m not going to pretend I’m always patient, but I do the best I can, and I know the more patient I am the better life is 🙂

  2. Kirsty @ My Home Truths - October 25, 2016 12:55 am

    Hi James, this is a post that all autism parents should read as stimming should be accepted, not discouraged. It also took me a long time to accept my son’s stimming – he flaps his fingers, skips around, mutters to himself and generally wanders around. He is now 12 and does this more at home than anywhere else but if he does do it when out and about it’s a sign that he is overwhelmed and allows me to do something about it. It can be hard, particularly if the stimming is socially unacceptable, like spitting, but I’m grateful it does give us a clue to their thought processes and their feelings. BTW, my son’s special interest at the moment is swear words and inappropriate language which is also hard to deal with in a social setting!!!!

    • James Hunt - October 31, 2016 10:52 am

      Hi Kirsty. Thank you for your lovely comment. Yes, our children’s stims are definitely clues to how they are feeling/coping. It’s important as parents that we find a way to understand them and accept them, even if it can prove challenging in certain social situations. I bet you’d love your son’s current special interest to change to something else as soon as possible though 🙂

  3. Ojo Henley - November 21, 2016 12:03 am

    I love my sons stimming, it indicates his mood. He giggles and talks to himself when doing it. I’m glad you wrote this, it’s something we should all embrace.

    • James Hunt - November 29, 2016 10:13 am

      Glad you feel the same! Thanks for commenting 🙂

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