Help our 5-year-old to stop dancing the funky chicken
July 21, 2014 10:27 AM   Subscribe

Our daughter flaps her arms frantically whenever she’s excited. We have a tentative diagnosis of non-autistic motor stereotypy, but haven’t found a treatment that works. The flapping doesn’t bother her, but she’s starting to get strange looks, and we’d like to “fix” it. We’re looking for resources and recommendations (especially in the Midwest) and any other personal accounts or advice.

Our five-year-old daughter — let’s call her Morsita — has, since she was perhaps 12-18 months old, tended to flap her arms excitedly when she’s happy or excited about things. At first it was just this cute thing our wonderful daughter did when she was excited … but over time it’s become something that’s clearly developmentally a bit, well, weird. It’s also seemed to get worse, or more intense, over the past year or two, and has sometimes spread into her legs (shaking, hopping) and face (grimacing, moving her tongue from side to side). It’s especially severe when she’s tired; when she's in new, highly stimulating environments; or, sometimes, when she’s particularly engrossed in a new book / TV show / etc. She is utterly un-self-conscious about it, and describes it (to us and to her friends) as “just something I do when I’m excited”.

Morsita is otherwise developmentally normal — there’s no sign of any autism-spectrum disorders, and her social skills are fine. She’s also hyper-articulate, and very gifted (fully bilingual, taught herself to read/write at age 3, tested into a highly selective kindergarten with scores placing her in the top 0.01% of her cohort, etc).

We’re familiar with the work of Dr Harvey Singer at Johns Hopkins, who appears to be the top researcher on these issues. He reviewed a video clip of Morsita’s flapping, and said it definitely looked like non-autistic motor stereotypy — but we’ve been waiting a year for an appointment to see him in person, so far without success. (We've also now moved to Chicago, so getting to Baltimore for an appointment would be tricky.)

In the meantime, we’ve been seeing an occupational therapist, who said Morsita had poor core muscle tone and sensory processing disorder, and that the flapping might be a result of that (as a form of “stimming” to cancel out or supplement sensory imbalances, I think). She’s been seeing her OT worker on a weekly basis for almost a year, and while her muscle tone and coordination have dramatically improved, the flapping hasn’t significantly changed or reduced.

We’re eager to find ways to reduce or regulate the flapping behavior, but we’re also very reluctant to do anything that might make Morsita self-conscious, especially as she starts at her new kindergarten this fall. We’re also concerned that this appears not to be something that people simply grow out of, so if we don’t start to address it now, it might be harder or impossible to address later.

So far, we’ve tended simply to ignore her flapping, or at most to ask her to calm down a little if it starts getting really out of control, but we’re increasingly thinking that we need to sit down with her and try to explain that it can affect how people see her, and that she needs to actively try to rein it in. (That’s tricky, though, because so much of the issue comes down to social perceptions rather than any more tangible problem that the flapping causes her.)

Anyway, we’d be very interested in hearing any personal accounts of dealing with motor stereotypies, and any advice about how to discuss this sort of issue with a bright, articulate 5-year-old. We’re also interested in specific recommendations for treatment paradigms we might not have considered, or for care providers in the Chicago or Midwest area who have experience dealing with motor stereotypies and/or very gifted children. Thank you!
posted by Yo Soy La Morsa to Health & Fitness (15 answers total) 2 users marked this as a favorite
I can only speak from personal experience and even that is (perhaps) tangential.

I didn't get a Tourette's/OCD diagnosis until I was an adult but looking back I can see how social pressures forced me to develop coping skills around allowing more socially acceptable presentations of my various tics.

Replacement activity helps but for _me_; engaging in an activity that would 'scratch the itch' just enough, early enough could help avoid a flare whilst being easier to mask. So humming and subvocalizing might prevent verbal outburst(s), shrugging usually helps prevent the weird arm flailing, 'thoughtfully' chewing a pen lid prevented lip smacking, toe tapping prevents restless-leg-like kicking, nose bridge pinching and eyeglass polishing hides squinting and distracts from facial tics.

Avoiding or suppressing the compulsions _never_ever_ever_ helped, was successful or offered any relief. Ameliorating the physical tics as much as possible lowered stress and helped control things like hand washing, counting, mysophobia and intrusive thoughts. I can't say that this advice translates at all but I certainly hope that it might offer a useful perspective.
posted by mce at 10:43 AM on July 21, 2014 [2 favorites]

I wouldn't try to stop it until I knew for sure that it was something that could be stopped. You don't want to break her. Play a game with her. Make bracelets out of bells for both you and your daughter. Have your wife play the sleeping giant. Set up obstacles throughout the room. You and your daughter have to get by the sleeping giant without ringing your bells. Laugh a lot, have fits of giggling, and then, when she gets really excited and starts flapping her arms, with the bells ringing, see if she can stop herself before the giant wakes up. If she can't, start flapping with her and keep playing. At least she isn't one of those children who eats their own buggers.
posted by myselfasme at 10:51 AM on July 21, 2014 [3 favorites]

One of the best tips I've received is, when I have to move -- to move my toes inside my shoes. Nobody can see it, but it relieves some of the impulse. Also, I just excuse myself and go to the rest room or wherever to get a breather, if necessary. Your daughter is very young, but she might already be old enough to know how to ask for a break if an environment or experience is getting overstimulating for her (though it sounds like she enjoys the excitement and that she's getting overstimulated because she's having a good time, so she might not *want* to excuse herself?).

Also in my experience, any movement a person makes with their hands is going to be pretty noticeable, as far as these kind of movements go. So if this is about toning down her stereotyped movements or making them less noticeable, I would concentrate on giving her something specific to do with her hands (a worry stone or something to fiddle with, for example) that will help relieve the impulse without her having to flap them.

On the other hand, I'm not sure that there's really a problem to solve? Is she actually experiencing social difficulties, or do you just want her to be "better behaved"? If she's completely unselfconscious and doesn't have an issue with it herself, and it's not a sign of a larger neurological or other kind of health problem that needs attention, then it seems like a pretty innocuous thing and I wouldn't *try* to make her self conscious about it, personally. I've taught kids with stims and, just as another data point, I haven't found it to generally be all that disruptive or distracting (to myself or to other children), as far as "not ~ideal~ behavior" goes. The coping behaviors that kids/people come up with on their own can also end up being at least as disruptive or socially unacceptable as the original stims, on the other hand, so I wouldn't try to make her drop the flapping without giving her something else to do in its place.

Also, if she expresses herself through movement, she might like to try dance.
posted by rue72 at 10:56 AM on July 21, 2014 [8 favorites]

This sounds a but like my almost-three year old who recently developed facial motor tics (the arm flapping has been present been infancy but has been dismissed as "not spectrum like" by his medical professionals). His neurologist has ruled out Tourette's so I've been trying to mitigate his allergies and help him get as much sleep as possible because it seems that sleep and allergic reactions are the two biggest triggers for his tics. I recently switched him to a prescription antihistamine at bedtime and his tics disappeared for a few days before resuming only mildly when he missed a nap.
posted by annathea at 11:04 AM on July 21, 2014

It kind of sounds like you're not convinced that the sensory processing disorder is the right diagnosis? I am not an OT (or doctor, or any sort of developmental expert). However, this sounds pretty familiar to me from having been a kid with sensory processing issues.

Have you read much about sensory processing disorder? If not, I'd suggest doing that. There are a ton of resources out there (your OT can probably suggest some) and they may be able to help you manage Morsita's sensory inputs (and help her proactively manage those inputs!) or provide her with alternative forms of stimming that might be more acceptable in a classroom environment.

You can also discuss these concerns with the OT and with Morsita's kindergarten teacher. SPD is becoming a more common diagnosis these days, and they may have ideas about how to manage it in a classroom environment.
posted by pie ninja at 11:16 AM on July 21, 2014

I would try to talk to other parents of kids with this issue. Everyone has their own take on things of course, so any one family might not have good answers for you but if you talk to several families and the same solutions seem to come up again and again, you might be on to something.

As the parent of a special needs child, I've gotten some good input from other parents on various things .. particularly parents with kids slightly older than mine.

You might be able to ask to be put in touch with other parents through the doctor in Baltimore. Of course they won't just give you names but they would probably call some current or former patients and ask them if they'd mind talking with you. It sounds like you're doing the right things medically and now you're looking for anecdotal data from other parents. Good luck with this .. I wish you and your daughter well.
posted by Kangaroo at 11:53 AM on July 21, 2014

Anyway, we’d be very interested in hearing any personal accounts of dealing with motor stereotypies, and any advice about how to discuss this sort of issue with a bright, articulate 5-year-old.

I did this as a child (still do as an adult, but.. differently), and was later on - in adulthood - diagnosed as an aspie. My son does this as well, but to a far lesser degree.

I understand you'd like for her to at least present as normal, and your heart is in the right place. I think you should be careful. Granted, I grew up in the 70s, but I was very aware that I was weird from an early age because of some of the interventions my parents and teachers tried. It led to some... sub-optimal outcomes in my tween/teenaged years that took me years to get over.

You should also understand that there probably isn't a way to make this behavior go away; she'll likely just replace it with something else. I scratch my head or rub my face now instead of flapping my arms. I usually can hold it in until I get someplace private, but... not always. I haven't so much gotten better at controlling them as I have at avoiding situations that make me feel like doing it.

I think your focus should be more on finding a way for her to express it that is less obvious and flail-y. Also, lots of people have certain tics - my boss likes to blink really fast when he's excited, for example - so this isn't necessarily abnormal behavior. It's not hard to find videos of people who do weird things with their hands when they are excited.
posted by Pogo_Fuzzybutt at 12:16 PM on July 21, 2014 [3 favorites]

Therapy to help aid a patient in the process of replacing a tic with a more socially acceptable movement as MCE described is known as Cognitive Behavioral Intervention for Tics. I also have Tourette Syndrome and it's also something I kind of learned to do on my own - I actually have an article on it coming out, but it's not published yet.

Something in your daughter's brain is triggering the hand flapping. You can help her find a different outlet for whatever's triggering it, but you can't just make whatever is happening in her brain go away.

I promise you the world will make her painfully aware of how she and her not-neurotypical behavior are viewed. It sounds like you want to sit her down and try to motivate her to stop doing something she can't help and isn't doing consciously (and doesn't bother her) by shaming her into it?

This sounds like a really, really bad idea, honestly.
posted by Juliet Banana at 12:22 PM on July 21, 2014 [10 favorites]

Gifted kids are, basically by definition, not neurotypical. In other words, their brains are fundamentally different from "average" brains. It is well established that this frequently comes with a host of side effects like excitabilities and sensory issues.

I suggest you join an online support group for parenting bright kids and pick up a book or two on sensory issues. Physical therapy, whether professional or homegrown, might help with this.

My guess would be she probably is the kind of kid who likes bear-hugs and who finds that light touch feels weird. She is probably flapping to feel more grounded again. Temple Grandin used a squeeze machine to help with her sensory issues. My youngest bear-huggy son liked me to "squish" him by sitting in front of him on the couch and leaning back, so he got gently pressed between me and the couch cushions. I later read that was the kind of thing that helped with certain kinds of sensory issues. I just did it because he liked it and, hey, kids are weird like that. Whatever.

Some kids also benefit from interventions like dietary changes and vitamin supplements.
posted by Michele in California at 12:33 PM on July 21, 2014

Would you consider putting her into dance lessons, or gymnastics or anything like that which will help her train herself in kinetic awareness and balance? Ideally you don't mention that it has anything to do with her flapping. It's an enrichment. It's for fun.

Yoga or martial arts might also help her practice kinetic awareness.
posted by Jane the Brown at 1:27 PM on July 21, 2014 [1 favorite]

We’re familiar with the work of Dr Harvey Singer at Johns Hopkins, who appears to be the top researcher on these issues. He reviewed a video clip of Morsita’s flapping, and said it definitely looked like non-autistic motor stereotypy — but we’ve been waiting a year for an appointment to see him in person

Does this imply that Dr. Singer has not seen "her legs (shaking, hopping) and face (grimacing, moving her tongue from side to side)" which have developed more recently than the flapping?

Because those things seem almost to be edging over into Sydenham's chorea:
Sydenham's is considered a delayed complication of rheumatic fever; it may begin as late as 12 months after the initial sore throat, and it may start only after the patient's temperature and other physical signs have returned to normal. The average time interval between the pharyngitis and the first symptoms of Sydenham's, however, is eight or nine weeks.
According to the Wikipedia article:
Sydenham’s chorea is characterized by the abrupt onset (sometimes within a few hours) of neurologic symptoms, classically chorea, usually affecting all four limbs. Other neurologic symptoms include behavior change, dysarthria, gait disturbance, loss of fine and gross motor control with resultant deterioration of handwriting, headache, slowed cognition, facial grimacing, fidgetiness and hypotonia.[3][4] Also, there may be tongue fasciculations ("bag of worms") and a "milk sign", which is a relapsing grip demonstrated by alternate increases and decreases in tension, as if hand milking.[5]
but the encyclopedia article linked above says
Most patients have an acute onset of the disorder, but in others, the onset is insidious, which means that the symptoms develop slowly and gradually. In some cases, the child's physical symptoms are present for four to five weeks before they become severe enough for the parents to consult a doctor.
Was there an obvious sore throat and fever before either the flapping or the more recent symptoms?

For comparison purposes, here is a YT video of a 7 year old girl with a relatively severe case of SC, and here is another of a young boy in whom grimacing and tongue movements are more obvious.

The good news if it's Sydenham's is that it tends to be self-limiting:
Fifty percent of patients with acute Sydenham's Chorea spontaneously recover after 2 to 6 months whilst mild or moderate chorea or other motor symptoms can persist for up to and over two years in some cases (for example a patient in the UK who has suffered the illness since 1999).[citation needed] Sydenham's is also associated with psychiatric symptoms with obsessive compulsive disorder being the most frequent manifestation.
As you say, Dr. Singer is a recognized expert in all this, and if you can't work with him I think you should ask him for a recommendation in the Chicago area.
posted by jamjam at 2:11 PM on July 21, 2014

Have you thought of asking a therapist who works with autistic kids what they would suggest? Even though autism isn't the exact problem here, arm and hand flapping is frequently part of that spectrum and I would think a suitable therapist would have some good suggestions.
posted by aryma at 12:50 AM on July 22, 2014

Thanks everyone!

The allergy connection is really interesting -- not something we'd have thought of, but she does have quite bad hay-fever and food allergies, so it's something we'll definitely investigate further. We'll start looking into yoga and dance classes too.

Also, FWIW, we wouldn't dream of trying to shame her into stopping. That's why we've been basically ignoring it so far; making her feel self-conscious is the last thing we want. It's more that we're worried that if we don't actively engage with her on this, then other people will, and perhaps in ways that we're less comfortable with and that she's emotionally unprepared for.

By the way, the Sydenham's videos are fascinating -- similar in some ways to what happens with our daughter, but it looks more ... loose limbed, I suppose, and less volitional than her flapping.

We'll do some more reading, anyway, and we'll keep trying to find a doctor/therapist who can work with us on this. Does anyone have any recommendations in the Chicago area?
posted by Yo Soy La Morsa at 4:44 AM on July 22, 2014

My son is on the spectrum and flaps because that's how he keeps from being overwhelmed by joy when he's happy. That's how he makes himself feel 'normal.' Coping skills are very hard to break and could cause other behaviors, worse ones, to emerge. Is he embarrassed or are you? Because if it's you then you need the fixin', not you kid. Take a breath, shrug, and let it go.
posted by FunkyHelix at 9:42 AM on July 22, 2014

Also, FWIW, we wouldn't dream of trying to shame her into stopping. That's why we've been basically ignoring it so far; making her feel self-conscious is the last thing we want. It's more that we're worried that if we don't actively engage with her on this, then other people will, and perhaps in ways that we're less comfortable with and that she's emotionally unprepared for.

My oldest has a long list of ways in which he fails to fit in with "normal." Like your child, he is also bright, which helped with trying to talk to him about why other people reacted to him the way they did. Talking to him about that in a very factual kind of way, validating both why he did things and also why other people reacted the way they did, and letting him know that the reactions of other people was not necessarily reason to stop did him a lot of good. The fact that he learned to, basically, not react to their reactions became a kind of magical invisibility spell or something. He can do the most bizarre things and sometimes get no response from people over it because he acts like it is "normal" (because, for him, it actually is) and when they start to raise an eyebrow or whatever, he just doesn't engage them, thus it often does not escalate.

Part of that is that I talked to him about things like "It is more socially acceptable to do that in x place/situation than in y, it is more obvious in z setting than in r, etc." For example, if you take up sports and, say, shake your hands/ flap your arms vigorously as part of your warm up or cool down, well, not everyone does that but it isn't "oh, god, the weirdo" either.

Also, the fact that I did not require him to change and did not pressure him into changing meant that some behaviors went away organically, without drama, because something causing it had changed but the behavior wasn't part of his identity, so he didn't feel defensive about it, or whatever. Basically, he didn't feel compelled to cling to his weirdness in order to justify his right to have been weird in the past when he honestly couldn't help it.
posted by Michele in California at 11:07 AM on July 22, 2014

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