Worried about 5yo's flapping/running behaviour
November 6, 2017 10:15 PM   Subscribe

On a recent holiday, I became concerned over some of my five year old's repetitive flapping and running behaviour - I am going to make a doctor's appointment, but would like some advice on what to mention, what to ask for, and any things I could be doing in the meantime.

My five year old son has flapped his hands when excited/worked up/emotional all his life, and has also had a habit of running up and down, or in circles. It has been reducing with age, and in the absence of other concerning behaviours I wasn't worried about it, and figured it was a quirky thing he would eventually grow out of.

We recently went on a week long camping holiday. Due to a few factors with our traveling companions, my husband and I were a bit frustrated and annoyed at times, and our daily plans frequently changed.

Our son did not react well to this uncertainty and our moods (at least, in retrospect that is how I interpret his behaviour). He had at least one meltdown over ridiculous things each day, and also ramped up his running/flapping. On our last day he ran and flapped for about a solid hour. We try talking to him, and asking him if he's ok, but he says he's fine, and just keeps at it. It really worried us, as he hasn't done it for that long for ages.

I started looking at all his behaviour with different eyes, and other things stood out to me - how he cannot talk to you about something when he's excited without jumping up and down on the spot or running on the spot; how he sometimes makes repetitive noises ("nn nn nn nn", or chanting the same sentence over and over). I would describe him as having a very obsessive/focussed personality - he gets very interested in things and then that's his major focus in life. At the moment it's road signs - he constantly wants to stop and read them, wants me to discuss every different road sign we see when driving, draws them, plays games that involve road signs, etc etc.

I think he clamps down a bit on these behaviours when at his kindy (which he attends two days a week) - they have mentioned the excited flapping to me, but just as a "quirky funny" thing, and haven't mentioned anything they're concerned about. He is fine academically. He doesn't check all the boxes for any things I've looked at online (mostly ASD and sensory processing disorder, which are what comes up on a google search), but just a few - repetitive behaviours, picky eater, bad at dealing with changes to routines

He starts school next year, so that will be a big change in routine - and I'm now worried about how he will react to that. Does he need help processing his feelings and thoughts in a more productive way? Or should I just leave him to it? I worry about him being teased as well - the older he gets, the more those behaviours stand out when he's with his peers. I don't know what to ask at the doctor other than to say "he does this weird stuff that other kids his age don't do and... is it a problem?"

I'm in Australia, and the process here is to see a GP, who will then refer you to a specialist (paediatrician, etc). I would love any advice from people who have dealt with something similar, any ideas about possible diagnoses, and any specific things to ask for at the GP (from experience, at my small town GP it is better if I have an idea of what I want - eg "I am concerned about X and would like a referral to XYZ specialist to discuss"). I'm not really sure if a paediatrician is going to be useful? An occupational therapist? Some other sort of therapist?
posted by fever-trees to Human Relations (17 answers total) 1 user marked this as a favorite
I started looking at all his behaviour with different eyes, and other things stood out to me - how he cannot talk to you about something when he's excited without jumping up and down on the spot or running on the spot; how he sometimes makes repetitive noises ("nn nn nn nn", or chanting the same sentence over and over). I would describe him as having a very obsessive/focussed personality - he gets very interested in things and then that's his major focus in life.

Where I live, a child should be seen by a Developmental Paediatrician, who is a diagnostic specialist. I'm not sure what the equivalent is in Australia, but telling your GP that you'd like a referral to have your son assessed for ASD or sensory processing should be enough to get you to the right team.
posted by DarlingBri at 10:30 PM on November 6, 2017 [6 favorites]

Verbiage that might help: “Over the past few weeks I have noticed an increase in particular types of behavior that make me wonder if he might be on the spectrum. I would like to have him assessed so we can learn what to do next. These behaviors include flapping his arms when agitated, being unable to stand still when talking to someone, repetive noises and chanting, and what appears to be difficulty adapting to changes or inconsistencies in schedules or environments. Who would you recommend we talk to?”

Also, you may hear the term “stimming” if you haven’t already. It’s used in the US to describe what the purpose of arm flapping, extensive rocking, humming, etc is for people who exhibit those behaviors in certain situations. Sometimes stimming can be redirected by providing an alternative means of stress relief, such as a squeeze ball or fidget spinner. It may also be helpful to notice (as you’ve already begun to) the precipitating event that spurs the stimming, incase you see an increase in magnitude. Noticing what makes him calm and providing that (within reason) might also be a means of understanding him better.

This is an understandably stressful situation for any parent, but it is not the end of the world, and you are doing what I think is a great thing for your son which is investigating what’s what so you can make informed choices later on. Please feel free to MeMail me if you would like to chat further about anything (though obviously I will be sharing a US perspective which may not be useful to you depending on the processes in place in your area).
posted by Hermione Granger at 10:59 PM on November 6, 2017 [2 favorites]

I just want to peel a couple things apart here: There are a lot of things that're worth some time and effort that also aren't things you should actually be worried about. I was on that end of having some sensory issues and a bit of a hard time processing things outside my normal--I also have an anxiety problem--but there's a huge difference between the kind of supports I need to manage (which are minimal) and the kind of supports someone needs if they have a lot more difficulty in communicating or developmental delays that go alongside. Among other things, stimming is something that genuinely helps a lot of people, so parents trying to make it stop happening entirely can introduce a lot of stress that doesn't need to be there. Not that you shouldn't also address where possible finding more socially-acceptable ways to cope, but social acceptability isn't the be-all-end-all. Basically, just: Yes, talk to somebody, but don't fret too much. He can be weird and still be okay.
posted by Sequence at 11:48 PM on November 6, 2017 [14 favorites]

The sooner you can get to a specialist, the more that they can help.

I have a daughter with sensory issues and high-functioning autism. Providing an outlet for the sensory issues will work wonders.
posted by Ostara at 11:48 PM on November 6, 2017 [1 favorite]

Am in Australia; have acquired referrals for my kids for other issues. I would say describe symptoms but also ask for referral, perhaps not immediately but within the visit. Do you have a regular gp? That tends to help.

Your gp should be able to advise who to refer to- if you phrase it as a request for further testing or a specialist they should cover the rest. One of our paeds did developmental stuff, the other was a gastroenteritis specialist...we actually got about 5 referral letters because my baby needed to be seen quickly. We just called them all and took the first apt. So I don't think you'll have any trouble getting the letter.
posted by jojobobo at 12:47 AM on November 7, 2017 [1 favorite]

To clarify, as well as each paed being suitable to see my child for his digestive issues, some also advertised themselves as specialising in particular areas when I phoned. We didn't need any specialisation in the end and just went with whoever we could get in with quickly.
posted by jojobobo at 12:51 AM on November 7, 2017

Also if you are in Victoria I've found my mchnurse a good source of info about which paeds have the best reputations. The doctors were more polite and collegial-less helpful!
posted by jojobobo at 12:54 AM on November 7, 2017

I am in Australia (near Melbourne), with a 5yo diagnosed with high-functioning autism who will also be starting prep next year. I had this question about him about a year and a half ago which led me to get him evaluated.

To get him evaluated, we first spoke to the GP, they gave us a referral for a paediatrician, and they gave us a referral for the specialist. At each step I basically went in and was honest, laying out all my reasons for worry -- being clear that I wasn't trying to pre-emptively diagnose him, but saying that X and Y and Z seemed out of the ordinary and had me concerned that there was something deeper going on. You've been pretty clear here in your question about what the things are, so I'd just do similar to what you did here. They will ask you questions back; just be honest, don't try to overly interpret, and see if you can come up with specific examples rather than broad generalities (e.g. one of my stories was about how my kid had a huge meltdown in a carpark because our car was parked next to a similar make and model but a number plate that was, coincidentally, only one letter different from ours, and he just couldn't handle it - this kind of example is a lot more helpful to them than "he seems to really like patterns / have a lot of meltdowns").

I am very glad we did this. First, it was just hugely reassuring not feeling like it was all on me anymore, that some experts who knew what to look for had consistent contact with him. Second, as a result of the diagnosis we did get him access to some therapies that I think did actually help (and he enjoyed); and, after the expense of the assessment which we did have to pay for out of pocket, it's mostly paid for by the government through the NDIS. Third, it's already been vastly helpful to have the bit of paper saying he's Officially(TM) ASD (and the gifted bit of paper is nice too) with our interactions with his teachers. I think they're much more willing to take our concerns seriously because, rightly or wrongly, they have the sense that we aren't just "oh my child is a special snowflake" parents.

I say I'm glad even though I sometimes wonder if the diagnosis is actually correct; my son is definitely an odd and quirky kid, but (especially in the last six months) some of the things I was most worried about, like social skills, have improved so markedly that I'm not sure he'd qualify for the diagnosis anymore. Of course, I think that, and then he'll have a series of meltdowns or other odd interactions that make me glad we have some professionals keeping an eye on him. And much of his improvement might be because of the therapy he's gotten as a result of the diagnosis! Also, on some level, I don't think it matters much what the "diagnosis" is -- anxiety and extreme giftedness and ASD can all look pretty similar to each other in some ways -- as what the patterns of weakness are and whether you can get therapy or help in dealing with them.

Good luck. You're at the hardest part of the path right now - it'll probably get easier from here, whatever happens. Feel free to pm me if you want to chat further.
posted by forza at 2:25 AM on November 7, 2017 [10 favorites]

Also, you may hear the term “stimming” if you haven’t already.

From "self-stimulating", I think
posted by thelonius at 3:46 AM on November 7, 2017

My experience was much like forza’s. In the US, my daughter did some odd things as a young child that led her to have a diagnosis of being gifted and on the spectrum. I always kind of doubted the diagnosis but it was nice having the insurance clearance for the extra therapies that she needed. As time went by, she outgrew everything that was odd.... now she is a “normal, whatever that means” junior in high school looking at Universities. Gifted kids are funny little birds and come in all flavors and if he is on the spectrum, he will just need some extra support... you have a good plan... you know your child best, good luck!
posted by pearlybob at 5:05 AM on November 7, 2017 [2 favorites]

We have a child who is similar to Forza's, though we are in the US. In our case, had an ASD assessment been done at 4, he might have fit the criteria, but it wasn't; he wound up with a sensory processing disorder diagnosis which has served the same role as Forza describes: some therapies that have been astoundingly helpful; some pros keeping an eye on him, and just enough to catch the attention of the principal at his new elementary. I would like to echo many sentiments above, that: it may well turn out that your child will benefit from some extra help now. It does NOT mean he won't be a fine, productive adult.

My child, at 5, did many of the things you describe: hand flapping when excited, lots of meltdowns, terrible with routine changes. If his brain is working hard, parts of his body start moving.

He's matured SO much over the last 6 months. We still have requests in to his teacher to keep an eye on him for certain things, but he's doing so much better than we expected in his new school this year. I don't know if this is an option for you, but I met with the school principal the spring before he entered, handed over a sheaf of assessments, and explained my concerns. They matched him with a teacher who is perfect for him in every way and it makes all the difference. (We know because she sees his quirks but they don't hold him back in her class, whereas his weekend language school teacher thinks he's a disaster.) They also gave him a rocking chair at his desk (3 kids in the class have them) - it helps him move and keep his brain moving.

You are worried so you should pursue the assessments. If something turns up, getting help will smooth the way for your kid. If they say he's in the range of normal, you'll feel better.

And, one of the most important things we have learned from our occupational therapy is that it's not completely "how do I fix this kid", it's "how can I learn to work with this kid I have, and what does he need for success?" That has been so valuable for us.

Joining the drop me a meMail if you have questions chorus.
posted by telepanda at 5:09 AM on November 7, 2017 [3 favorites]

Just to add a technical term, repetitive behaviors like repeating a phrase or a motion can be termed perseverating.
posted by Miko at 6:27 AM on November 7, 2017 [1 favorite]

On reread of the thread, I'd like to add one thing: As Forza says, when you go to to talk to the doctor, you want to have as many specifics as possible. It may help you to keep a notebook for a couple of weeks, where you make note of the behaviors that worry you, how often, and in what scenario they occur.

You don't need to relay every last episode to the doctor - pick a couple of examples to describe in detail, and follow up with general statistics. So, for my kid, the general summary was something like "Averages 3-5 meltdowns per day, each with several minutes of incoherent screaming and kicking. Tends to occur at transition times (before and after school, and bedtime), and at bath time. Bath meltdowns seem sensory related - he screams that even lukewarm water is burning him, because he is terrified of getting soap in his eyes, and because he is too cold getting out of the tub)."

If you can provide your doctor with a fact-based summary of that nature, they'll be able to make a much better assessment, because "a lot" of a behavior means wildly different things to different people.
posted by telepanda at 7:44 AM on November 7, 2017 [1 favorite]

I don't know how it works in Australia, but what you actually probably want clearly is a battery of developmental tests by a trained pediatric testing psychologist to assess if the concerning behaviors fall within the range of normal or if there may be something more going on.

I don't know how much of a case you have to make for yourself in this regard in Australia (at least with me in my corner of the US, I contact the testing center directly and they deal with the insurance side of it for me). But you want to just describe what you've said here. "I've noticed a lot of flapping, a lack of eye contact, and what could be stimming. I'm concerned the amount of which I see is more than is typical for his age." That's all accurate and straightforward.

And just as a word from the future from someone who's been in your present, the testing is a really good thing. Your kid is always who your kid has been, but now you'll have more information to work with to help him become the best version of himself.
posted by zizzle at 8:25 AM on November 7, 2017 [1 favorite]

One thing to keep in mind is that "symptom" just means "clue to the presence of a disorder," not "harmful thing" or "thing that needs to be eliminated." Some symptoms can be harmless.

Like, being tall and skinny is a symptom of Marfan Syndrome, but that doesn't mean kids with a Marfan diagnosis need leg-shortening treatment to be healthy. Really stretchy skin is a symptom of some kinds of hypermobility, but it's a harmless symptom, and people with hypermobility don't need any kind of skin-tightening.

Within reason, the same is true of flapping and other kinds of stimming. They can be symptoms of autism and other developmental disorders. But that doesn't mean autistic people need to stop doing them to be healthy or happy. (Granted, it's a bit more complicated because kids and adults who stim visibly can get bullied for it. But even then, the solution may include things like "help the kid find less-visible stims to use" or "let teachers know you expect them to treat bullying against your kid just as seriously as bullying against neurotypical kids" — "make him stop stimming at all" may not be realistic or useful, especially since stimming is a harmless symptom otherwise.)
posted by nebulawindphone at 1:31 PM on November 7, 2017 [4 favorites]

Thank you everyone for such detailed and helpful responses, and the particular terminology to use - I feel a lot more prepared to lay out our concerns at the GP, and reassured by those of you who have had similar experiences.

Sequence and nebulawindphone - I have been conscious that a small proportion of my reaction to the behaviour is simply because it looks "weird", and I realise that's not a good reason to want a change in behaviour. If it turns out that that's simply how he processes things, then so be it - and I have a hard time imagining him without a certain amount of excited flapping, as at this point it just seems like part of who he is.
posted by fever-trees at 6:26 PM on November 7, 2017 [3 favorites]

I thought I would provide an update for anyone interested - I went to a GP, and got a referral to a paediatrician. I had to wait several months for the first available appointment, and by the time the appointment came around I wondered whether I had over-reacted - the meltdowns really reduced, and I thought his flapping had reduced as well. The paediatrician didn't think he showed any signs of being on the autism spectrum, and thought a full assessment would be a waste of time. She essentially said that diagnosing anything at age 5 was very difficult, and maybe he has generalised anxiety. She suggested focussing on being very encouraging and praising good behaviour, and to come back in 6 months to see how he was managing at school. I didn't find this process to be particularly helpful - it felt like I'd paid to be told "kids are weird, ay?" by a professional - but it did reassure me that there wasn't anything major I needed to be concerned about.

He started school, and contrary to my concerns he is loving it and doing very well. The structure and rules really seem to suit him - he is very conscientious and focussed at school. (Possibly because he is an anxious/perfectionist little kid). If anything, the flapping/running has increased on weekends - it's like he uses up all his focused energy at school, and lets his mind and coping mechanisms run free at home. "I need to move to think," he says. Currently I am encouraging him to do some kid focused meditations with a view to giving him more tools to relax and calm himself, and am thinking of trying some yoga with him as well (as I think physical triggers might be more helpful for him). As telepanda suggested above, "what does he need for success" has been a very helpful way to approach this.
posted by fever-trees at 10:11 PM on June 17, 2018 [2 favorites]

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