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.
posted by Yo Soy La Morsa to Health & Fitness (15 answers total) 2 users marked this as a favorite
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!