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Original poster

5 year old motor movements - complex motor stereotypes?

21 replies

CharlieB161 · 19/05/2017 13:39

Hi! When my ds1, now 5, was tiny (under 6 ) months, he used to do strange involuntrlary movements with his arms when drifting off to sleep. I mentioned to HV it looked like a fit but wasn't, but never mentioned it again. This stopped but then, age around 2, when he got excited he'd open his mouth really wide in what looked like an involuntary way. Since he was about 3, this has got more elaborate, and now when he is excited or thinking about things he enjoys, he wiggles his arms, stretches and contorts his mouth, and wiggles his les (if sitting) or jumps and down (if standing). (This jumping seems involuntary, and when ds2 tried to copy he can't. I don't think u can jump like this voluntarily). When he is going off to sleep, he also does this, and the facial and arm contortions are very noticeable. I mentioned it to the GP and paediatrician but they didn't seem bothered. I showed a video of the jumping? but they failed to see the involuntariness of it.

If I call his name, ds can stop and he says he enjoys doing these movements. I've done quite a bit of internet research, and am pretty sure the movements are 'complex motor stereotypies'

I don't mind the movements, actually they r quite cute and clearly ds enjoys them. However, at home they are multiple times a day. I think he doesn't do them as much at school, but I'm worried that as he gets older, he will get bullied. They seem to be worsening, not disappearing.

My questions are...

Have any of your children got these movements?

Will ds get bullied? Will the movements go away?

Should I ask for a medical referral?

Can they be a symptom of anything more serious? (I know they r related to autism, but pretty sure he doesn't have that. Ds is developmentally where he should b for age, and v sociable).

He has a lump on neck - had it for 2 years, been told nothing to worry about. Could they b related? Could this b something to do with a brain tumour or something?? (Sorry, just worries me)

Thanks for any advice

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Original poster

CharlieB161 · 19/05/2017 13:42

Sorry, that's meant to say 'wiggles his legs if sitting, jumps up and down if standing'

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Original poster

CharlieB161 · 19/05/2017 16:09

anyone?? :)

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Noitsnotteatimeyet · 19/05/2017 18:42

Sounds like stimming to me (self-stimulating behaviours). My ASD ds did this from about 8 months to 12/13. He'd do it when he was excited about something he was looking at or thinking about. He liked doing it and it helped him feel calmer. As far as I'm aware he never got explicitly bullied over it but as he got older he'd get some very strange looks, usually from other parents not their kids... by the time he was 9 or 10 he'd realised it wasn't socially appropriate and only did it when he was at home.

Don't make a big thing out of it - he'll probably outgrow it. Yes it is often linked with ASD but not always

user1491810905 · 19/05/2017 18:44

Could be a symptom of a sensory processing disorder. Again these are often linked to autism but they can be standalone.

How is he with loud noises, crowds, new people and places etc? Have school ever expressed any concerns at all?

Original poster

CharlieB161 · 19/05/2017 20:12

Thank you noitsnoteattimeyet and user... sensory ... maybe could be, not sure. School haven't expressed any concerns. He is very... mmm ... the only word I can think of is 'motor' - that probably doesn't make any sense, but he's always on the go - bike, swim, run, jump, doesn't really stop moving! oh ... and talks ALOT!!! (I mean really! He cried a lot as baby, and as he's grown, this has turned into being a non stop chatter box!! Actually got in trouble for talking in school today 😉 Not sure if this is anything more than the average active 5 year old though . I Will look up stunning, thanks.

What do you both think re: whether I should raise this again with GP ?? Don't want him to feel he's odd or there's something wrong with him - so maybe I shouldn't bother??

Thanks noitsnoteatimeyet - good to know o bullying was evident in your sons case. Actually I have a feeling my ds doesn't do these movements much at school. He doesn't mention it, but maybe he knows other kids don't do it, and is already saving it till he gets home (it has been much worse at home since he started school)

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Original poster

CharlieB161 · 19/05/2017 20:15

Sorry, 'stimming' not 'stunning'!! Not having much luck with auto correct!!!

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Original poster

CharlieB161 · 19/05/2017 20:16

Oh, and that was meant to say 'no bullying' not 'o bullying'

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user1491810905 · 19/05/2017 20:26

I would ask school before you ask the GP.

If he's fine around loud noisy etc then it doesn't seem likely to be a sensory disorder.

And if he's very sociable and doing well with no obvious autistic traits, then I would just put it down to a 'quirk' and see how he gets on as he gets older :)

Original poster

CharlieB161 · 19/05/2017 20:44

Sorry noitsnoteatimeyet - another question, hope that's ok, did your ds have the same movements - i.e. Hand and arm wiggling, jumping, facial contortions and opening mouth wide ?? How did you know he had ASD ? I don't think my ds has ASD as he is very social, but maybe I'm missing something(?)

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Original poster

CharlieB161 · 19/05/2017 20:46

Thanks user... maybe I'm just worrying too much! You r quite reassuring! I'll hang fire on GP! (just never seen another Child with these movements so looks worrying!)

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Noitsnotteatimeyet · 19/05/2017 21:26

Yes - exactly the same movements as you describe, hand and arm flapping, jumping, sometimes almost running on the spot, grimacing etc

His keyworker at playgroup first raised questions about the way he interacted with the other children and he had a multidisciplinary assessment when he was in nursery school. He has dyspraxia and ASD and to be honest the dyspraxia caused more problems at primary level than the ASD

Original poster

CharlieB161 · 19/05/2017 21:52

Thank you noitsnoteattimeyet, it's comforting to know others exhibit these behaviours, and it doesn't sound like it's been a big deal for your ds. I thought about dyspraxia at one point as ds's fine motor is a bit behind (teacher has mentioned this), but his gross motor is (very) good (good swimmer for age, been riding bike no stabilisers since before age 4, very agile on climbing frame etc ..). After reading user ... above, I googled sensory stuff and my ds might be under stimulated (needs constant stimulation! ... we can never have 'stay at home and relax' days! ... he'd climb the walls!!) Oh I don't know, maybe it's all nothing! Just little wonderful him, being little wonderful him, which is unique! maybe I just watch and wait, and try and support him as best I can (which I wish could b better sometimes!)

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RichardHead · 20/05/2017 13:42

Sounds very similar to my DS

Are you on Facebook? There's a couple of groups worth joining if so;

www.facebook.com/groups/732946733426070/

www.facebook.com/groups/motorstereotypy/

Original poster

CharlieB161 · 20/05/2017 21:15

Hi RichardHead

Thank you! I'm not on facebook (yes, dinosaur I know!) is there a web group linked to the Facebook page?? Do u think it's worth me joining Facebook for this?

Thanks again!

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RichardHead · 22/05/2017 22:01

Hello,

I definitely find the facebook groups useful, the main one is more US based and the first one I linked to is the UK offshoot.

The US one is based a lot around studies done at John Hopkins in the US;
motorstereotypiesandyou.org/

Original poster

CharlieB161 · 22/05/2017 22:35

Thanks RichardHead, appreciated, I will get myself into this century and take a look at Facebook!

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mymatemax · 23/05/2017 23:34

The movements may or may not have a name, I would only seek further advice if they are negatively impacting his daily life, otherwise I'd just let him get on with it.

Nospringflower · 24/05/2017 06:58

I agree with last poster - does it matter if they don't cause any distress or difficulties?

Original poster

CharlieB161 · 24/05/2017 23:22

Thanks mymatemax and nospringflower! Well, if I'm right and it's just complex motor stereotypies, then you r right and doing nothing is probably the best thing (although I am worrying about (perhaps not so distant future) potential bullying, and about future relationships should he not outgrow this! (I know, he's only 5!!! Perhaps being overly anxious!) The other thing that worries me is that I might b wrong about the stereotypies, and the movements have a more sinister cause (maybe linked to his neck lump - wild imagination is leading me to hypothesise some kind of neurological problem / brain tumour .. although 98% sure this is just my anxiety talking)

I'll leave it all for now. GPs always just say watch and wait anyway, don't they?

Luckily, ds is none the wiser! He likes his movements and is the happiest little boy on the planet ;) ... oh to be 5!!

Thanks for all the advice

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Nospringflower · 26/05/2017 11:18

If you are concerned about the neck lump I would see the GP and get a proper explanation for what it is?

Ohwowwow · 11/12/2022 23:17

OP- I know this thread is 5 years old. But if you are still around, can I ask you how is your DS now?

My DD has the same movements and she is 5 now. I thought she'd grow out of it, but it's getting worse. Just like your DS she is happy, bubbly and social so ASD hasn't really been a worry...yet.

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