Hey....sorry I didn't get back here before now! ...my RL is always so chaotic! *sigh*
I shared your syndrome with my daughter and her man and he knows someone who tastes sounds!
(I had thought, for sure, that he was gonna laugh at what I was telling them...but he didn't laugh!...he, instead, told me about his friend!)
I am looking into this syndrome more because my disabled daughter constantly makes a sound that drives us all crazy!...& since she is not verbal enough to tell me why she makes the noise, I continually look for reasons....and, possibly a reason for her to stop doing it!
Sarah is 33 years old, but, with Cerebral Palsy and a seizure disorder, her developmental level is more like a 1 year old....
We keep her long hair tied back to avoid her getting it into her mouth and chewing on it....and sometimes she slips her thumb into her hair, before the rubber band, and pulls her hair out...or it breaks at the rubber band....
So....after reading your thread, I began to wonder if Sarah is having "sensations" on her scalp that makes her pull her hair...
So I am going to start playing her some of the videos that you talk about...and see if it changes her behaviour any.
Even if she doesn't have this syndrome, the unusual sounds and speech patterns might catch her interest enough to make her stop making that noise for a while! Lol!
I hope you are having a fantastical day!

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