Q: Dyskinesia is a big word. Did you make it up?
A: No. Dyskinesia is a very real medical problem that is described, basically, as above: difficulty with voluntary movements; however, the term is most often used to referring to involuntary movements, such as the tremors of Parkinson disease. There are several types of dyskinesia, and I’ll address only two here. Warning: Science Content forthcoming:
From Stedman’s Medical Dictionary (extrapyramidial dyskinesias): abnormal involuntary movements attributed to pathologic state of one or more parts of the striate body and characterized by insuppressible, stereotyped, automatic movements that cease only during sleep.
There is also a category of dyskinesias called tardive dyskinesia. Here comes the Science again.
From Stedman’s Medical Dictionary (tardive dyskinesia): involuntary movements of the facial muscles and tongue, often persistent, that develop as a late complication of some neuroleptic therapy, more likely with typical antipsychotics.
Q: So, do you have dyskinesia?
A: No. I have attention-deficit disorder (ADD), which is not medically related to dyskinesia; however, I’m intensely attracted to the meanings, applications, and interpretations of language, and if there were ever a condition described by difficulty with voluntary movement (control, self-direction, etc.), it’s ADD.
From the beginning, I have had a few qualms about appropriating the word because it is a very real condition that I in no way make light of and have a tremendous amount of compassion for those sufferring from it. If you have found me because you are searching for information on dyskinesia, please see the links provided at the end of this page.
Q: Is dyskinesia related to Asperger syndrome / Asperger’s?
A: I’m going to give a personal opinion here. It is one based on my own medical knowledge (I work in medicine but am not a physician) and my experience with children with Asperger’s.
If you are seeing random, insuppressible, sometimes almost spastic-seeming movements in your child, obviously you should be sure to have the child seen by a physician. That said, if those movements are hand-flapping, bouncing, rocking, twisting of hands, constant motion of feet, etc., (my own son twisted his hair into knots), then these could easily be what we call stimming or stims. People on the autistic spectrum often exhibit such behaviors in response to stress or emotion. It varies widely between individuals as to the extent of these behaviors and when they will be seen.
HOWEVER, if you have a child who is on medication and is having new, unexplained body movements, contact your prescribing physician immediately as this could be a reaction to the medication. Tardive dyskinesia is caused by long-term exposure to neuroleptic drugs. Medication doses can be reduced, medications can be changed, other therapies can be considered, but if tardive dyskinesia is left untreated, it can be permanent.
I include the following question here for parents who have found me by searching for dyskinesia and Asperger’s and are realizing that they are dealing with stimming behavior.
Q: My child is exhibiting stimming behavior all the time, and it is making me crazy and embarrassed. Is there any way to control it?
A: This is going to vary widely by the child, the behavior, your relationship with them, your relationship with a spouse, the consistency and style with which you present behavior adjustment, etc., but I do believe that many stim behaviors can be “adjusted.” For example, my son twisted his hair into knots when he was little; we found ourselves constantly telling him a very short phrase of “fingers out” in an effort to combat it because dealing with the knots caused him significant trauma, and that made it worth combating when it was happening. We’d then try to distract him with something else comforting because it was obvious he was using it as an outlet for self-soothing and to exert ‘control’ over himself. Helping an ASD kid to adopt/develop self-soothing skills is, in my opinion, the single most important thing you can do for them, at any age, but if you can develop this skill when they are young, they will have the best chance of adapting it as they age. If they are unable to develop this skill at a young age, I have personally witnessed in other families the struggles it will present later, for everyone in the family; it is not a strong leap to see how this can translate into hostility as a child ages.
So, as I believe that self-soothing is of paramount importance, my final answer is No, do not attempt to force your child to curtail stimming behavior that is not harmful to themselves or others because you will be attacking the one mode of relief that they have, making everyone’s life miserable. (My son would also stim by spinning in circles until I thought *I* would puke from watching him; at certain times, this had to be stopped because it was dangerous.) The object needs to be to transition them into other self-soothing behaviors as much as possible. We all have tools of emotional release and coping with stress: candles, bubble bath, writing, painting, exercise, napping, singing, etc., and even repetitive things like clicking our pen, bouncing our leg, or drumming our fingers. Your child needs outlets too. As time passes, parents are often able to better recognize when their child is stimming from stress or emotion versus when they are stimming because they simply need something to do or focus their attentions on.
For more information on Asperger’s, please see my Asperger page (under construction at this time).
Links for more information on dyskinesia:
The Michael J. Fox Foundation – Glossary An outstanding explanation of terms related to Parkinson’s, including terms associated with diagnosis, symptoms, and treatment. The site itself is certainly a wealth of general information on all things Parkinson’s.