Hand flapping

[Donttellanyone1]

Is this a worry? DD is 7 and has started flapping her hands when she’s excited. She often combines this with running and jumping, sometimes makes a bit of noise too although this has been going on for longer, at least the last two or three years. She also seems to do it when she comes out of school, as if to burn off the excess energy that she’s been holding on to at school. No other signs of ASD that I’m aware of and school haven’t mentioned anything. Should I be worried?

I mean this kindly. You have nothing to worry about if the school have explicitly told you there are no problems at school.

Thank you, I will genuinely take that on board. I haven’t specifically queried ND with the school, I just generally asked if they had any concerns about DD and was told they didn’t. Do you work in an SEN field?

Some of the greatest people in history were believed to be autistic..

Autistic kids are also 'happy kids'

Your attitude towards autism and embarrassment that people might think there's something wrong with your daughter isn't great tbh and i'm glad you feel bad about it because you really need to educate yourself.

It's ok to be concerned but please stop with the stereotyping.

OP my lovely son hand flapped, still does when excited or nervous..he is 34 just got married to his lovely husband,has no other symptoms obvious to anyone and he has just been diagnosed with autism. I wanted to tell you this because his age is so removed from your little one. He has always flapped and we have a special family name for it that I won't share but he flew through school,hes very popular, flew through university with ease and now has a job earning more than I could ever dream off for a major company. He only got tested to satisfy his husband and we were totally bemused, as he was. Nothing has changed for any of us, infact he reckons its a super power he has! Just a bit of hope for you fast forwarding 20 odd years. Life and people have a funny way of surprising you always and its not all bad I promise you, hang on in there what will be will be my love.. dont try to pre empt things too soon is my advice x

OP- I’m sorry you have had a hard time here. I think perhaps you have stumbled blindly into room of parents whose children DO have autism, and used the terminology of someone with no experience of it. That way of speaking is really hard for us to hear, because we would rather other people don’t think of our children like that, but actually we know they do. (Or that’s how I feel- I can’t speak for others).

I don’t know if your daughter has autism. I completely understand that you are fearful that she does. I wish my autistic dc were not autistic- their lives would be so much easier (and frankly so would mine). But if she turns out to be, then it is likely that you will also develop the fierce reaction that you have experienced to some of the terminology you have used.

Some within the asd community will tell you it is not a disability, but I think this undermines the struggles individuals and carers with greater needs. Frankly, I think it would be massively offensive for me to compare the difficulties my kids face with those who require 2:1 support and who cannot effectively communicate etc.

If your daughter does have Asd, she will need your support. Possibly do some research into how Asd affects girls- it is often different to boys and can present in a far more internalised way. Hopefully it won’t turn out to be relevant to you, but it cannot hurt.

Also if possible, try not to take from this that Asd parents are unpleasant, but try to understand how we are constantly having to defend against the negative opinions of others, when we often have so much else to deal with.

Good luck

My son does this, will flap his hands, run and jump, usually when over exited about something. He's diagnosed ASD. He however does not display any other trait's. He is friendly, chatty, eats pretty much anything. Has lots of friend's, very loving, I'm only saying this as he was diagnosed young, but didn't necessarily fit into the "typical" boxes. He however does tend to avert eye contact. And can be quite black and white in his thinking around rules.

If you're concerned you can speak to the school, or your GP, if it's something you want to pursue you can go down the right to choose route, which has a quicker waiting time then the NHS, if you're in the UK.

Also if she is ASD she should know and so should other people, there is absolutely nothing worse than a child growing up feeling different and not knowing why, especially when you enter into puberty and teen year's. All my son's friend's know he has ASD and just accept and like him even with his quirks. Please don't be a parent who sends their child out into the world with no support or understanding. I work within a school with lots of SEN children, it's heartbreaking watching them struggle because their parents pride and image out values their needs and support.

Thanks for your message. Can I ask on what basis he was diagnosed, was it just on the basis of eye contact and black and white thinking or were there other signs? My understanding (and please forgive me if I’m wrong) was that usually children diagnosed early have fairly obvious symptoms and signs?

Thank you, I really appreciate your message. Your son sounds like a wonderful human being living a happy fulfilling life and it doesn’t sound like his diagnosis has held him back at all in life. Thank you for the reassurance, it means a lot

Not particularly, he has delayed speech to begin with, and he would stimm with his hands, that was the biggest marker for him. He was diagnosed early because I pushed for him, to be seen before he started school. as he has gotten older struggles more with the anxiety and low self esteem as he's more aware he's different. But he's got a good set of friends and good support put into place at school that helps.

Sorry I didn’t see the end part of your post. I don’t want to the parent that refuses to accept that their child is ND. Nor do I want to be a parent that forces a label on their child that they do not need. I think what I’m trying to say is that at the moment, I don’t think a diagnosis would make a difference to DD as she is otherwise thriving and happy. But obviously if that were to change, we would take action. But I can’t help but worry about what the future might hold. As I’ve said before, it’s the not knowing that is difficult

Do you mind me asking how old your son is now? How old was he when he started to talk? DD was perhaps on later side of ‘normal’ for speech and once it started, it never stopped 🙃 And I don’t remember any stims at that age, I think it all began between perhaps 2.5 and 3, although it could have been even later than that as my memory’s poor as l also had a newborn at the time

You're welcome OP. It does sound very similar to my son - he also used to run up and down, but I don't see that anymore. The Facebook groups are called 'Motor Stereotypy' and 'Motor Stereotypy Group UK'. I've mostly been reassured, by looking at these groups and my own research, that Complex Motor Stereotypies tend to reduce with age and that children tend to privitise them as they get older. That certainly is starting to be the case with my son.

It doesn't sound like there are any major concerns currently, but just keep the ND possibility in the back of your mind. Girls will often sail through school as model students before suddenly crashing when the demands of increasingly complex social relationships become too challenging for them to maintain in the way they've navigated up to that point.

There may well also be things that you don't see or notice because they just "are". My son (v different presentation in boys and girls usually) was diagnosed at 2, it was and still is now, very obvious that he's autistic. When we were going through the process we still had to really dig down to identify the adaptations and things that we had just naturally developed as our norm.

My son did this as a young child and he also did other motor movements like stretching his mouth and wiggling his body and legs. I discovered from my own research that it was 'primary motor stereotypies' (look it up!) He is 13 now and still does it a bit, but much much less than he used to.

I also hand flap and hand clap (usually when im excited) and I'm 46! (I also ashamedly suck my thumb occasionally which noone in real life knows). Thumb sucking and hand clapping are also motor stereotypies so my son has likely got his traits from me

Neither of us are autistic. Just what I.like to call 'motor'! Sport helped my son. Most of his movements were related to excitement or occasionally intense concentration, daydreaming or tiredness. As I say, he still does it a bit now, but much less.

Yes, that's right - I think my 9 year old son has the primary form too. I believe secondary is where the flapping is linked to ASD or ADHD.

Thank you for posting. I aiways find it reassuring to hear of other older children and adults with motor stereotypies. I'm really glad it's never been an issue for you, and your son is doing well.

@papercranes do you have any of those movements yourself? I don’t think I do, or at least not that I can remember from childhood, as I read that a lot of these cases are genetic and have been passed down by a parent?

Thank you, that’s reassuring to read. What age was your son when these movements began? I think with DD it started with running/pacing at about 2/3 and then the hand flapping in conjunction with the running started a bit later. Does that sound familiar?

Thats not what genetics means in terms of ND. The current working theory is that ND is genetic, but that doesnt mean inherited.

It means its part of your genetic make up, which are you more likely to share with your parents/children but not always.

No, I don't. My husband doesn't/didn't either.

@papercranes thanks, that’s interesting. How often did/does your son do these movements? My DD seems to do them most when she’s excited/overstimulated/imagining something. Is your DS easily distracted from doing them? Is this how it differentiates from stimming? Sorry for all the questions just trying to get my head around it

Her behaviour is otherwise what I would expect to see from a typically developing child, although I’m clearly no expert. What I mean by that is her behaviour appears to be similar to that of her NT peers

No problem OP. Yes, he can be easily distracted. If you say his name, he'll stop. He does them when excited or imagining something - currently this may be waiting to take a penalty in football, waiting to jump in at swimming, thinking about an activity that's about to start, looking at a picture he's just drawn, a scene he's creating with his toys, after playing a computer game etc. It's not very frequent now, maybe a few times a day, but I could go a day without noticing. He's also changed in public, so more of a jump on the spot, rather than running up and down flapping his hands.

When he was younger he would do it very frequently throughout the day.

I'm not sure how it differs from stimming, or if it's the same. I know it's different from a tic though as I believe that's more involuntary.

MH Social worker (retired). Also on the autistic spectrum.

I honestly could have written this. Waiting to jump in at swimming, anticipating an exciting activity, watching something exciting on tv, after a period of concentration or sitting still or just when she wants to imagine something - this seems to be when it happens the most. It’s almost as if she needs to physically release the excitement/anticipation/energy from her body. She is easily distracted from it too, if I call her name etc. She’ll often stop and look at me during it too if she notices me watching at her. No distress or anxiety when she stops it, it’s as if it never happened and she’s back doing whatever it was she was doing before

Thanks, it sounds like you have had a lot of experience first hand in that case.