When my daughter was two-years-old, the Pediatric Neurologist at Vancouver Children’s Hospital diagnosed her with Motor Stereotypy. In this newly updated post, we share our experience with Stereotypic Movement Disorder (SMD) as we worked to understand Olivia’s medical condition.
January 29, 2010 — After weeks of waiting, today was our appointment for Olivia at Children’s Hospital with a Pediatric Neurologist.
(In the fall, I noticed Olivia was experiencing what I thought were facial tics. Our doctor sent us to a Pediatrician, who ordered an EEG, which led to our appointment today with a Pediatric Neurologist. Earlier this week, I posted about her worsening symptoms.)
The Pediatric Neurologist believes that Olivia is experiencing stereotypy.
Until yesterday, I had never heard the term stereotypy. But, a reader actually emailed me yesterday after reading my post about Olivia’s tics, (or what I assumed were tics,) and told me that her daughter had the same symptoms and was diagnosed by a Pediatric Neurologist with stereotypy. She wrote to tell me not to worry, that stereotypy can occur in healthy children.
What is Stereotypic Movement Disorder
Stereotypic movement disorder, also called Primary Motor Stereotypies, is a disorder that begins in childhood and is characterized by rhythmic, repetitive, fixed, purposeful but purposeless movements that stop with distraction and is not associated with other neurological or developmental delays. Examples of primary complex motor stereotypies can include wiggling fingers in front of the face, rotating or opening and closing the hands, finger wiggling, hand flapping, flapping and waving of the arms, etc.
What causes Stereotypic Movement Disorder
The cause of stereotypic movement disorder is unknown.
However, one school of thought is that motor stereotypies may involve cortical-striatal-thalamo-cortical pathways. A recent study by Dr. Harvey Singer of Johns Hopkins shows there may be a link between GABA and glutamate dysfunction and primary complex motor stereotypies, but much more research needs to be done.
Growing Up with Motor Stereotypies — Olivia’s Story
In this video by Ron Dawson from Dare Dreamer Media, Olivia and I share about what life is like living with complex motor stereotypies.
Thank you so much Ron for sharing your time and talent to help us spread awareness about SMD/CMS.
Here is how Wikipedia defines Stereotypy:
A stereotypy (pronounced /ˈstɛriː.ɵtаɪpi/) is a repetitive or ritualistic movement, posture, or utterance, found in patients with mental retardation, autism spectrum disorders, tardive dyskinesia and stereotypic movement disorder. Stereotypies may be simple movements such as body rocking, or complex, such as self-caressing, crossing and uncrossing of legs, and marching in place. Several causes have been hypothesized for stereotypy, and several treatment options are available.
Stereotypy is sometimes called stimming in autism, under the hypothesis that it self-stimulates one or more senses. Related terms include punding and tweaking to describe repetitive behavior that is a side effect of some drugs.
Distinction from tics:
Like tics, stereotypies are patterned and periodic and are made worse by fatigue, stress, and anxiety. Unlike tics, stereotypies usually begin before the age of three, involve more of the body, are more rhythmic and less random, and are associated more with engrossment in another activity rather than premonitory urges. Examples of early tics are things like blinking and throat clearing, while arm flapping is a more common stereotypy. Stereotypies do not have the ever-changing, waxing and waning nature of tics, and can remain constant for years. Tics are usually suppressible for brief periods; in contrast, children rarely consciously attempt to control a stereotypy, although they can be distracted from one.
There are several possible explanations for stereotypy, and different stereotyped behaviors may have different explanations. A popular explanation is stimming, which hypothesizes that a particular stereotyped behavior has a function related to sensory input. Other explanations include hypotheses that stereotypy discharges tension or expresses frustration, that it communicates a need for attention or reinforcement or sensory stimulation, that it is learned or neuropathological or some combination of the two, or that it is normal behavior with no particular explanation needed.
The doctor assured us that while stereotypy does present in children with other disorders such as autism, it is also common in typically developing children. (Her own daughter experienced stereotypy.)
She said that as Olivia gets older, she may learn to inhibit her stereotypies and do them more when she is alone. She may stop doing them altogether.
Our Next Steps after Olivia’s Motor Stereotypy Diagnosis
The neurologist is referring Olivia to a pediatric neuropsychiatrist who specializes in stereotypy, tics and Tourette’s, as well as ADHD, etc.
I am glad that we will be able to receive some sort of follow up care. Neurology doesn’t treat stereotypy and considers it benign.
I am so grateful that my daughter doesn’t require medication or treatment! But, considering our family history, I do prefer to have her receive some sort of longer-term follow up with a specialist. (Olivia’s brother Jackson has ADHD, ODD and Anxiety, and one of Olivia’s cousins is on the Autism Spectrum.)
I just prefer to stay as educated and aware of what my children are experiencing as possible. Even if there isn’t anything I “can do,” knowledge just makes me feel better.
I have been reading tonight about stereotypy, and indeed it does seem to occur often in developmentally healthy children.
Here is an excerpt from an informative article I found and it describes how stereotypies can affect children who do not have mental retardation or pervasive developmental disorders:
“…The stereotypies seen in these children were associated especially with periods of engrossment such as when playing a game or participating in an activity, but also at times of excitement, stress, fatigue, and boredom. They usually lasted in the range of seconds to minutes (but could go on for hours in some cases) and appeared many times per day. In practically all cases, the stereotypies could be suppressed by sensory stimuli or distraction…
Stereotypies usually develop in early life, mostly before 2 years of age, whereas tics begin to occur in children at age 6 7 years. Unlike tics, which rapidly change from one thing to another (blinks, grimaces, twists, shrugs), stereotypies are prolonged episodes of the same iterated movement.
People with a tic disorder often will stop their tics during engrossing activities, but individuals with stereotypies often will start their repetitive movements during such periods. Distraction usually interrupts stereotypies but not tics.
Many of the children in the study had comorbidity, including ADHD (15%), obsessive-compulsive disorder or obsessive-compulsive behavior (20%), tics (13%), learning disability (4%), or had an early language or motor developmental delay that resolved itself (12%).
The biologic basis for stereotypies remains unclear, although some evidence suggests that there is a dysfunction in the circuitry between the cortex and the striatum, Dr. Singer said (Pediatr. Neurol. 2005;32:109-12).
If a child’s stereotypy doesn’t interfere with his activity, Dr. Singer said that he doesn’t recommend any particular therapy…”
I didn’t expect to leave the hospital feeling relieved. Going in, I felt hopeless.
Watching my daughter get lost in repetitive movements, her body clenched and her face contorted, is incredibly upsetting. It interrupts her constantly throughout her day and some episodes go on and on.
But knowing that these episodes are not damaging her brain, that they aren’t seizures and I didn’t leave the hospital with a prescription for medication, is such a relief.
Life isn’t perfect. Life isn’t typical. We all have our unique challenges, experiences, and blessings.
As difficult as it is to watch my daughter clench and contort her face and her body, even as I hold her or we walk down the street, I am trying to have peace that this is just part of the plan the Lord has for her life.
I need to have faith and let Olivia thrive in the life God has planned for her.
THANK YOU again for all your loving support! Your comments, messages, and prayers mean so much to us!!!
UPDATE on Olivia at Four Years old
Olivia is now four years old. She is a happy, energetic, and extremely friendly little girl who keeps us in constant laughter.
Olivia still has her stereotypies. They have not lessened — she still experiences them regularly and is now aware that she has them. There are certain situations and stimuli that always brings on her stereotypic movements, such as driving in a car, waiting in a lineup, being in the shower or getting out of the bath/shower, and getting bored. Stress and fatigue do seem to make them worse but are not as much of a factor as the stimulation around her.
I can “call her out” of a stereotypy by calling her name firmly. She will then “come back” and look at me as if she just came from another place. But, unless I continue to hold her hand and engage her, she will immediately go back into her stereotypic movements.
Olivia will sometimes go for an hour or more and not have any stereotypic movements, but at other times they are far more frequent.
It isn’t easy to watch my daughter struggle with stereotypic movement disorder. It is hard when people stare at her, kids and adults alike, confused by what they are seeing, or ask me if she has special needs.
But, even though I feel a slight panic sometimes when I see my daughter “go away” into a place I don’t understand as she experiences her motor stereotypies, I constantly thank God. My daughter is alive. She is not experiencing seizures or anything that is hurting her. She is happy. She is here. And I am so very very grateful.
If your child is experiencing stereotypic movements or tics, please don’t despair. Yes, it is hard. I know the pain and panic I felt when I first realized something was going on with Olivia. We want the best for our children. We want to keep them from all suffering.
But we can’t. Life sometimes hurts. And a diagnosis of stereotypy or tics??? Well — it isn’t the end of their world or yours. As Julia’s cousin told Olivia, it is just a part of who she is.
UPDATE on Olivia at Seven Years Old
It has been over four and a half years since I wrote this post. It has been incredible to read the comments and receive emails from other parents and people dealing with Complex Motor Stereotypy.
Learning from one another is such a blessing — thank you so much to each of you who have shared your thoughts and experiences with us.
Olivia is now almost seven and will be starting second grade next week. Her CMS movements are growing more challenging for her and she has started to express frustration with them.
She has a difficult time in class and any time she has to wait or try to stay still and listen to instructions. When her movements take over, she cannot listen or follow what someone is saying.
Olivia is an incredible child, full of energy, enthusiasm, and imagination. She rarely stops moving and seems to be here on this earth to make friends and have fun!
It has been so encouraging to read in the comments below from teenagers and adults who have Complex Motor Stereotypies.
As parents, it is frightening to watch our children “slip away” to a place we have never been and don’t understand.
However, hearing from people who HAVE been there and report that it is a pleasant, refreshing, and safe place makes all the difference in the world.
We want the best for our children — and fortunately, it appears that our passionate, energetic, active children who experience stereotypical movements may just have more energy and imagination than they can contain. It seems like their brains have just found another way to release all the extra stimulation that is pent up in their bodies and minds.
Again, thank you so much for your concern and interest in our sweet Olivia. To hear an inspiring take on stereotypies from the viewpoint of a six-year-old, read this post that Susan wrote with her daughter’s advice to Olivia…
And don’t miss the comment section here on this post. There is SO much great information and encouragement from readers…
UPDATE on Olivia at Eleven Years Old
It has been nine years since Olivia was diagnosed with stereotypic movement disorder and we began posting about motor stereotypies and Olivia’s journey.
Olivia is eleven years old and is in the sixth grade. She still has her motor stereotypy and it presents exactly the same as when she was younger but perhaps slightly stronger in its intensity.
She experiences her motor stereotypies countless, perhaps hundreds of times a day. They still occur most often when she is bored or unstimulated such as sitting in class listening to the teacher, driving in a car, standing in line, etc.
However, she also can have her stereotypic movements when she is engaged or excited, actively listening, walking, watching a movie, etc.
Her motor stereotypies continue to frustrate and hold her back at school. She struggles to stay present during lessons and even during one on one instruction.
Olivia has been diagnosed with ADHD as well as a learning disability in math. She is currently on 18mg of Concerta and finds that it improves her focus, but does not reduce the number or intensity of her movements.
Emotionally and socially, Olivia is thriving. She continues to be a happy and outgoing child who makes friends easily. While she is sometimes embarrassed and occasionally teased or questioned about her movement disorder, she handles it well.
If your child or someone you know is diagnosed with motor stereotypies or stereotypic movement disorder, or you watch your child experience “tics” or uncontrollable movements that you don’t understand, it can be confusing and frightening.
Watching my toddler’s tiny body stiffen as she clenched, contorted and raised her left hand to her mouth countless times a day was terrifying. In those moments, she was somewhere else and I didn’t know what was happening to her.
But please do not despair. Our children are okay.
They will grow and flourish and their movement disorders may help them to become more resilient, more compassionate people!
Our children are not in pain when they “disappear” in their movements — the movements are actually enjoyable to them.
Of course, if a person’s movement includes self-harm, then the situation can be much more complicated and painful!
Personally, we haven’t had to deal with self-harm. Olivia sometimes accidentally bites her fingers or fist when she is experiencing her stereotypic movement, but it is just a minor injury and she often laughs and says, “I just bit myself!” when she stops moving.
For those of you who have children who self-harm, such as self-biting, self-hitting, eye-gouging, etc., my heart goes out to you! That must be incredibly difficult to manage.
Please share in the comment section about your experiences with movement disorders.
One of the reasons we are republishing this post is to reopen the comments. (Our comment sections close on older posts to try to prevent spam comments.)
The comment section on this post is an incredible resource, with many comments from people affected by complex motor stereotypies (CMS) and stereotypic movement disorder (SMD), including adults sharing their perspective on living with stereotypies.
And for more answers to your questions about complex motor stereotypies (CMS) and stereotypic movement disorder (SMD), links to resources and the latest research, we will be publishing a new post on stereotypies, Motor Stereotypies and Stereotypic Movement Disorder later this week.
Pin it for Later
We want to give a huge THANK YOU and shout out to Ron Dawson and Tasra Dawson from Dare Dreamer Media in Seattle for coming to Vancouver to make the video about Olivia that is included in the post. Thank you so much for sharing your time and talent to help us spread awareness about SMD/CMS.
Written by Janice, co-founder of 5 Minutes for Mom.
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