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?

@papercranes at what age did he start to become more socially aware?

That's so interesting! Yes, no distress here either. I think he actually enjoys doing it, particularly when imagining.

Very recently really. I'd say this school year, so year 4/aged 9, but I think it had been reducing slightly for a while.

Have you ever discussed your concerns with school/have they ever mentioned concerns about potential ND to you? So sorry for all the questions x

Yes, I mentioned it to them when he started reception. His teacher (who was also the SENco) rang me about half way though the year to say they wanted to get someone (I think from the LA?) to observe him with our consent. They were looking to see if he had sensory processing issues I think, and had ruled out ASD. We filled out a form and they did the observation, and she came back to me saying that he didn't fit the criteria for sensory processing, it just seemed to be something he did when excited. We said we may revisit it in juniors if he started to have issues with people making fun of him - she was suggesting giving him something to squeeze instead etc - but it's kind of tapered off at school naturally and he never had any issues. I just ask his teachers at parents evening if he's having any issues too.

From experience, I would not wait for school to initiate a conversation. I found out that the school had considered my son autistic for years when a teacher inadvertently referred in a y10 parents’ evening to his ‘choosing to sit and hide at the back and reluctance to participate being fairly normal for an autistic boy of his age’. I had to then book to speak to the HT and ask what was going on - they apologised, appreciated he had never been diagnosed, and said ‘it never seemed the right time to raise their concerns and I didn’t ask’. Actually I asked multiple times from y5 and was batted back every time right up until lockdown, when I stopped asking. He has an older sister who was diagnosed so there was no issue with us being receptive…

I genuinely think that if you feel concerned YOU have to sit with them and discuss it and request a full assessment.

And it really isn’t the end of the world if it turns out that your child may be on the spectrum or be found to have any other SEN need. Both mine are ASD with ADHD. A* students, musically/artistically gifted, off to Russell Group Unis. Needed significant support with friendships/social interaction and both suffer chronically from acute anxiety, which I would have sorted had I known sooner, but with support/counselling they have acquired a tool box of skills. Medication for ADHD has also been a revelation. I worry, of course, as do all my friends about their children for a host of different reasons, but in this case you may actually be worrying about nothing - so I’d speak to the school and explore an assessment in case intervention is required.

Hi OP, sorry that so many are unkind.

Regarding your daughter I would recommend you really educate yourself about the ASD spectrum as with girls the masking can be extraordinary.

My youngest is nearly 18 and the penny only dropped with me when she was about to turn 15.

Primary school she was academically very strong, worked hard, did well, lots of friends, popular, funny, lively, well liked, very chatty.

Excellent at sports, tennis, hockey, football, gymnastics, dancing, piano.
Anything she put her mind to, she excelled at, very competitive.

After school she would be tired, would like to chill and relax.
Always loved bed and was great to sleep.
When excited she would flap sometimes at home, I thought it cute!

She did a lot of exercise which I now think worked off her steam.

During covid she discovered music and makeup tutorials and loved both. Hours of pacing about listening to music.
I thought nothing of it. She is superb at doing makup and is sought out by friends constantly for advice etc.

She went to summer camp with 5 friends for 3 weeks and had a great time but when she returned she told me she had enough of people and wanted a break from friends and socialising as she was wrecked. She blew them off for nearly a month.

I started reading.
The eye thing, of not looking directly at me came up when I asked her. I had not noticed it but she told me she looks just above people's eyes as she knows eye contact is important.

She felt when younger she missed sarcasm and some social ques.

She is hugely well liked and valued by her large circle of friends.
Her teachers are so effusive of her.
She has received several school awards.
However, she shakes it out sometimes in school and she can also put her head down for a snooze or just shut her eyes during class if overwhelmed.

Astoundingly no teacher has ever said a word but are completely accepting of her quirks.
She is an excellent student so I reckon they just let her do her.
They are really great.

She was recently also diagnosed as dyslexic which was a real shock as academically she is so strong in all subjects including languages, but it turns out she has a short term photographic memory which is why she does so well.

As you can read, it is complicated and the masking hid so much.
Watch out for sensory issues like not like certain foods, water. She eats loads but mushrooms are a common no no.

She is interested in law and finance but is also thinking that she would like hybrid working as whilst she enjoys being with people, downtime and decompression is critical to her well-being.

Burn out is common with those on the spectrum so that needs to be carefully managed.

Start a dialogue with your daughter casually about how she feels flapping, releasing energy, mixing with friends.

Primary is a time when masking is easy.
As they hit the teen years it can slowly expose itself.

My daughter preferred to have friends over to our house after school rather than go to friends houses.
She told me she found her friends younger siblings loud and annoying after school.
Clearly it was sensory overload from school being overwhelmed by the futher normal noise of younger siblings.

None of this pinged with me.
Ours is a very calm peaceful house and that is probably why she found masking so easy.

Her psychologist told me that her being the youngest and the house being so calmed helped her hugely to decompress and manage her emotions well.

My message is read and read.
I wish I had known earlier so I could have supported her more.

Oh and nothing was ever mentioned to us during her primary years.

@Maplesy10 such an informative posts and very reflective of my experiences too (DD not diagnosed until 13, DS at 15). People really do not understand the masking element - mine completely shut down when they get home from college or any social activities/school trips. Often the life and soul when with close friends/family but very subject to social burnout from masking the social anxiety.

I was oblivious to anything re girls/autism until the penny dropped with DD… and I had studied for a BSc in psychology and done a module on Autism only 5 years before! The NAS.org.uk website has loads of informative and reassuring pages on how ASD/ASC present in girls and are a great place to start.

@CautiousLurker01 @Maplesy10 thanks for your very informative posts. I appreciate my daughter is still very young, but we don’t see any evidence of masking type behaviour. When she gets home from school/social events, she’s always keen to see her friends again and doesn’t appear to be burnt out or overwhelmed afterwards. Her behaviour just appears to be the same

@CautiousLurker01 I am a very clued in mother and honestly it wiped me when I started joining the dots.
Additionally my daughter mentioned maladaptive daydreaming whic she started during Covid.
I had never heard about it.
She does it when pacing.
It is how she decompresses.
Fortunately it doesn't control her, she does it to relax.
I found the reading up about that quite distressing 3 years ago but now I see it as a tool she uses to decompress.
I also realised I was a huge daydreamer when younger too!

Two things that I have learned.
Anecdotally girls with ASD often have very heavy periods and can suffer with stomach issues.
They are also prone to eating disorders.
My daughter is tall slim and very pretty.
She can forget to eat, loves her clothes, so likes her lovely figure.
I watch her food intake and often bring her food in bed, her favourite things like toasties, pancakes with extra eggs, french toast dipped in eggs. I make sure she eats.

This is so common as to be unbelievable.
I have 5 close friends with daughters of similar ages all with variations of what I have written.

10 years ago none of knew our happy daughters had anything going on, only in the last 3-4 years have things become clearer, a few have dsylexia too.

The thing they also share is a bit of perfectionism, and are all hugely personally ambitious.
This can lead to anxiety and putting huge pressure on themselves.
I am very very careful to be the parent that plays stuff down.
To tell her that she will find a university course she will love and not to stress over it.

My eldest son has a variation of it too, though won't entertain it. He too was very strong academically and is successfully employed post university. His has anxiety caused by it, which interrupts his sleep, stomach issues.
He also puts himself under huge pressure too.

It is a difficult burden to carry, but education is key to help navigate it as parents.

Nothing my daughter did during primary was unusual really. She was so busy with sport and activities that life was go go go.
It was secondary school when the tiredness hit.

@Maplesy10 I hate to say it, but you could have been describing my daughter in that last post - maladaptive daydreaming, pacing (calms, but is a sign for us that she is anxious because it goes on for hours into the early morning), very heavy/painful periods (trying the pill again now she is more regulated with ADHD/anxiety meds), also slim and pretty (though she has tried to disguise this with her masculinising hair/clothing due to ROGD), fussy eater/ARFIDS and also forgets to eat, or simply refuses if I have not bought in the limited range of foods she is eating this week, also often takes her food to her room/bed as eating as a family seems to stress her, always had stomach issues at school from the age of 6/7, utter perfectionist and totally driven (would not settle for anything other than a RG uni) and instead of doing her first love, art (because it would be destructive for her), we counselled her to do something she was really interested in but cared less about, if that makes sense, does not observe normal sleep patterns (up at night, sleeps in etc). As much as autism is a spectrum and each ASD person presents differently, there are definite behaviours and physical indicators that girls seem to share.

We are taking one term at a time and when at uni, it will be one semester/one module at a time. We’ve stated that courses can be paused for a semester or a year so she knows she is not locked in and we avoid talking about work/employment and get her to try and just focus on the being ‘present now’ bit… Like you say, it takes skill to navigate and we have sorely lacked those at various times and messed up repeatedly.

My DS is far more laid back - but is more like the serene swan who looks calm on the surface but is paddling like mad just to stay afloat. His ASD manifests in severe migraines which relieve the stress but also necessarily force him into a shut down.

I think research has come a long way in the last few years but I sometimes feel I am only one revelation in front or behind current advice. Am hoping that parents talking about it, sharing their experience and strategies on fora like this may one day help the mothers and children coming behind us. And hopefully make them less fearful.

One tip for migraine that for some reason works, my son had a migraine at 14 that was so bad, he lost his speech and sight, and one side of his face collapsed, not unlike a stroke. It was mid afternoon and I put him into the car and went straight to A&E when he was CT scanned and given the all clear but kept in. Awful fright.
Two things his medical team advised that have helped.
We always have small cans of coke in the house.
For some reason it helps.
As soon as he feels a migraine starting with the aura/light etc. we get a bowl of really hot water and his feet go into it.
Its magic. It completely reduces the severity and length of them.

The other thing is nutrition.
A good vitamin B complex is very helpful to support their nervous systems, pop one yourself as they saved me during menopause.
An iron tablet with a vitamin c and D at night time before bed are very good.
Plus I give a multivitamin too.

Gut health is critical as well and the link between it and ASD and stability is huge.

What I have learned over the past year is that I need to mind myself too.

I have very successful children but I have quietly bent myself totally out of shape supporting them.

Outwardly they are really doing well, but it has taken so much time, effort and energy.

And I know that I have it so much easier than many many people.

Encourage both of your children to go out walking, even in the evening.
Walking is calming but the latest research finds that when we walk our eyes dart right to left which has a very positive effect.
My son has recently found walking to be very positive for him.

Tapping is another very positive stim to introduce to them to help relieve stress as is investigating the Vagus nerves and how to activate them.

Constant reading is very helpful.
You sound like a great mum. Make sure you mind yourself too!

That’s great, it sounds very positive and I hope it will be the same for my daughter too. Did your son do it when he came out of school or if he’d had to be somewhere quiet and still for a while? I find it difficult to know what to say to DD. As people on here have rightly pointed out, the last thing I want to
do is make her feel self conscious or embarrassed but I also want to avoid other people making fun of her and her realizing that way. How did you broach it with your son?

I haven't really noticed that he does it more once he's been quiet or still. We've never really been able to find any patterns with it, although he will seem to do it more for a few weeks and then it'll ease off. We've never understood why.

It's a really tricky one and I'm still not sure how to approach it. We've always just said 'it's something he does when excited' but I don't know whether he may need more of an explanation as he gets older. Kids never seemed bothered by it when he was younger and largely seem very tolerant/understanding of other kids behaviours - more so than I'd realised. But I think as he and his peers have got older, he has noticed some kids looking at him and realised that others aren't really doing what he's doing...so I think this is why he's perhaps modified his movements and privitised them a bit more.

Happy excited was the trigger for both my children.
Watching an exciting film.
When Diesel would appear in Thomas the Tank engine, my little man would get wildly excited and start saying "naught Diesel" it was dotey.

My daughter did it up to about 10, sometimes when a romantic part in an age appropriate film would happen, like a kiss.
I admit I thought it was cute.
I never saw her do it outside.
I think it is probably something most grow out of as they learn to regulate better.

Hi! He actually had some weird movements as a tiny baby where he'd kind of flail his arms about in his moses basket! I remember commenting to the health visitor (who had no clue what I was on about!) but as he was my first child I didn't know what was normal. However, I think things really ramped up from about 3. That's when the hand flapping, jumping, mouth stretching was v noticeable to me. I did video it and show to the GP who said 'that's strange' but otherwise I felt quite on my own so just did my own research. I did worry about ASD/ADHD at the back of my mind, but just felt he didn't seem to have these traits so I just took a 'watch and wait' approach and having read loads, satisfied myself that it was primary motor stereotypies.

In my son's case, they got a bit worse when he started school because he would try and hold them.in during the day, so they all came out when he got home. But since about year 2 or 3 they have gradually got a lot better and I barely notice them now. He does them.sometimes when we drive in the car or when he's in his room.on his own (and doesn't notice me peeking in to check.on him!) but he does seem to be growing out of them.

I've no idea when my own started! O.also.often.dont notice I'm clapping until someone comments something like 'you are very about that!' or 'ok, you don't need to be that happy about x/y/z' etc!! ...

I had these worries OP. I tried to comment on his movements as little as possible so as not to make him self conscious. I (really really) worried he'd get picked on at school, but that never happened. I think he held them in a lot once he was about 6, at school, but he'd let rip at home!

Every now and again I'd say something like 'are you ok my little wiggler'? Or "Hi wiggly man" or "are you doing your wiggles or do you need a wee?' (sometimes when he was young (and actually still now at 13!!) I couldn't tell if he was desperate to pee or just doing his movements!!)

As he got older, out of curiosity, I'd ask him a bit about the 'wiggles' - how do they feel? Do you know you are doing them? Do they feel nice? I'd try to express zero judgement, just interest. I learnt from him that yes, they do feel nice. No, he doesn't always know he's doing them, and sometimes they are connected to daydreams and exciting thoughts. He likes(d) them so therefore I saw them as ok and still do. He's never really liked to talk too much about them. It's like they are his private thing and are in some ways special to him

Honestly now at 13 I have very few worries. Occasionally I fear a wiggle or a flap or mouth stretch will pop out at school. And at secondary school the stakes a higher! But it's not happened yet and to be fair DS has lovely friends so I don't think they'd care and I don't think anyone else would notice as teens are pretty wrapped up in their own stuff!

Sport did definitely help DS when he was at primary school and his movements were quite intense, though. He used to be a competitive swimmer and I definitely noticed that on days he didn't swim or at least cycle or get some exercise, they were worse. I just think he used to be very movement based and process things physically. As a teen that's changed a lot. He's more geeky than sporty now, but the wiggles have subsided in parallel with the need for so much sport (though he is still active).

Of course you don't want her to be autistic as it's not very nice being autistic.

She might have more traits but they are your normal. Things you do automatically to make her life easier.

Sensory stuff? Remember sensory seeking as well as avoiding.
Bath temperature was one sign for us.
Avoiding noises.
Textures of clothes or mud/sand on hands
Fussiness with food or seeking strong tastes
Chewing on stuff
Balance issues (vestibular)
Late to toilet train not sure when hungry, thirsty or hot.(Interoception difficulties )

Social issues were noticed before but really became apparent around 8 when peers accelerated away from DC.

Also you might be making accomodations for her unintentionally as you are a neurodiverse family.

Sorry me again! I'm reading this thread in a very odd order! So keep coming across new posts!! Just wanted to say, reading this, that your daughter and my son at that age seem basically the same!!! I remember when my son was in swimming lessons and sometimes even when he was in his swim club, he'd be standing by the pool waiting excitedly to get in and that's when the flapping and jumping (and in his case mouth stretching!) would come on! He used to look so cute and it was nice to see how excited he was about swimming! but gosh did I worry how others would perceive him :( Honestly though, noone ever said anything and I really don't think anyone noticed because in life, we are all so busy in our own thoughts!

And I hate "people with autism". We're all different!

"Autistic people" may be the safest.

Whatever you say someone ain't gonna like it!

Thank you for sharing that with me, it’s so interesting to note the similarities between our children at a similar age. Did school ever mention anything to you about it? We haven’t had any concerns from school yet but I worry if she carries on doing it, it’ll be commented on. Perhaps a good thing so if there any issues we can get them addressed. Did your son jump and flap, or does he run and flap too? My daughter just seems to need to motor around at times, even if she’s doing a club like football or gymnastics, she’ll join in with the class and then go off and do a little run about, and then dip back into the class again. Can I ask why you are satisfied it’s not ASD/ADHD? Hope that’s not an intrusive question

Tricky to get the balance.

And to be fair people do judge hand flapping and other autistic behaviours. It's "sweet"in little kids but by the time they are in junior school people do see it as weird. And other children ostracise them. Many NT people really do not like people who are "different" hence racism and ablism and homophobia. People do look. Most don't stare.

It's normal to worry about people staring and feel embarrassed about it. Some autistic people find everything different than normal embarrassing (eg too embarrassing to carry the junk modelling stuff the teacher requested into the classroom. ) I think it is fine to redirect stimming to a more socially acceptable stim if that is going to make the stimmer's life easier in a world of demonstrably judgy people whilst simultaneously campaigning for better acceptance.

Autistic people can be more vulnerable and become targets of abuse. Sometimes it is helpful to know when to mask temporarily and the benefits and downsides of that.

Early diagnosis is beneficial as it allows kids to find their tribe. One of mine benefitted from spending time in the special needs area of secondary school as a safe place. The other didn't and needed to fit in socially with the NTs.

I think being embarrassed by her behaviour comes from the point of wanting to help her fit in in a rigidly social world and worrying about her.

I genuinely can’t think of anything we do to accommodate her but perhaps we do without realizing. We aren’t a neurodiverse family (that we know about).

I can’t think that DD has any of the traits you’ve listed below, apart from perhaps the chewing thing as a toddler but that’s not uncommon.

I think it’s really tricky to differentiate between behaviours that lots of children (NT or ND) do because they are children and children do weird stuff sometimes and traits of a condition if you see what I mean? I mean lots of the kids in DD’s class are fussy eaters (DD is not one of them) and don’t like the feel of clothes or sand on their hands. Surely they all can’t be neurodiverse?

My daughter had an autism diagnosis , I wish she hadn’t it doesn’t make life easier for her, and while I’m not as scared about her future as I was , I’m still terribly worried .

No. You need a whole range of behaviours across the three areas of impairment. (Social communication, routine, sensory)

You often get the opposite where people dismiss autistic behaviours because some other kid does just one of them so it's "normal"

Your kid is either autistic or not. There doesn't seem to be enough evidence to diagnose currently. Things become clearer as they get older as you either collect more evidence or behaviours resolve or point to something else.

If she is autistic there is no point going for diagnosis until there is enough clear evidence whilst also being important to go early enough for them to get support. Getting a false negative is worse, I think. I wonder whether DD would have got a diagnosis earlier and whether that would have been helpful. (Certainly a few months earlier would have been helpful to before secondary school)

Good luck.