When your child experiences repetitive, uncontrollable movements that you don’t understand, it can be confusing and frightening. My daughter was diagnosed with stereotypic movement disorder over ten years ago and since then, I have been researching and learning about SMD. In this post, you will find answers to your questions about complex motor stereotypies (CMS) and stereotypic movement disorder (SMD), links to resources and the latest research, as well as my daughter’s story and updates on how she is developing,
As my daughter’s body stiffens, her hands clench, and she raises her left arm to bite her rigid fingers, I see the nearby strangers watching, wondering what is wrong with her.
She is unaware of their gaze, but I am pierced for her – hundreds of tiny swords cutting into old wounds.
I remember the beginning, when I didn’t know what was taking over my toddler’s body, when I couldn’t ask her if she was in pain or where she went when she seemed to leave me standing alone.
I remember the diagnosis of stereotypic movement disorder, the mixture of relief and despair. The movements would not hurt her physically, but what would they do to her life?
And I remember her tears over the past years, her frustration as she tries to grow up inside a body she can’t always control.
But I try to shake off the hurt and force myself to replace the pain with positive thoughts.
Olivia is happy and healthy. She is not having seizures that are destroying her brain.
She is simply experiencing a movement that I don’t understand, an expression most of the world doesn’t recognize.
Yes, her complex motor stereotypies cause people to look. Yes, they interfere with her learning and frustrate her.
But Olivia is ok.
She is strong and her stereotypies are making her stronger. She has a life to live that isn’t for me to define or even imagine.
I slide my hand into hers and swing our arms together as we walk down the street. I lean over and whisper in her ear, “I love you baby, girl.”
She looks back at me, her eyes twinkling, “I love you too, Momma.”
What are Complex Motor Stereotypies and Stereotypic Movement Disorder?
Complex motor stereotypies are rhythmic, repetitive, fixed, involuntary, purposeful but purposeless movements of the body, hands, or arms that stop with distraction. Some examples of complex motor stereotypies include repetitive movements of the hand and arm, 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.
These movements usually last “for seconds to minutes, appear multiple times a day, and are associated with periods of engrossment, excitement, stress, fatigue or boredom. Sometimes they’re misdiagnosed as obsessive-compulsive disorders or tics.”
“Motor stereotypies usually occur when a child is engrossed in an activity or experiencing excitement, stress, boredom, or fatigue. They may last for seconds to minutes and are completely absent during sleep.”
In my daughter’s case, she has one repetitive movement and she has had it since she was a newborn. Her body stiffens, she clenches her hands and raises her twisted and rigid left hand in front of her face, often accidentally biting her fingers or fist.
Primary motor stereotypies, also called Stereotypic Movement Disorder (SMD), is when motor stereotypies occur in otherwise typically developing children. Most children with SMD began their movements before they were three years old and the movements often continue as they age.
Secondary motor stereotypies describe the condition when it occurs in children with neurological disorders, developmental delays, or sensory abnormalities, such as Autism Spectrum Disorder (ASD), or vision or hearing impairment.
What are the Differences between Complex and Common Motor Stereotypies?
Common motor stereotypies are not unusual among young children and usually fade with age. Common motor stereotypies include activities like hair twirling, thumb sucking, nail/lip biting, body rocking, self-biting, teeth clenching/grinding and headbanging.
Complex motor stereotypies are more complex movements that include hand/arm flapping or waving, wiggling fingers in front of the face, rotating or opening and closing the hands, and finger wiggling.
“About 20% of children exhibit common types of primary motor stereotypies, while primary complex motor stereotypies are estimated to affect 3–4% of children in the U.S.”
What is the Difference between Tics and Motor Stereotypies?
It is common for people to confuse motor stereotypies and tics. While they do have some similarities, they also have some distinct differences.
- Stereotypies usually begin before the age of three and can be present even from birth. My daughter Olivia has had her CMS since she was a newborn.
- Tics usually begin later in life, with an average onset of around 5-7 years old.
- Stereotypies are fixed, constant patterns of movements. Tics evolve and change over time.
- Stereotypies usually involve more of the whole body, including the arms and hands, whereas tics occur more with the eyes, face, head, and shoulders.
- Stereotypical movements are often longer and more rhythmic than tics.
- One can usually interrupt a stereotypical movement. For instance, if I call my daughter’s name, she will immediately stop her stereotypical movement, but after a few seconds or moments, she will usually begin the movements again.
Olivia’s Diagnosis at Vancouver Children’s Hospital
When my toddler would have movements or “tics” that would take over her little body hundreds of times a day, I was confused and terrified.
I had so many questions and fears: What was wrong with her? Was she in pain? Where did she “go” when she left for those moments? Would these episodes continue or worsen throughout her life? Would she ever be able to stop them?
At two and a half years old, the pediatric neurologist at Vancouver Children’s Hospital diagnosed Olivia with Stereotypic Movement Disorder.
The neurologist didn’t offer us much information but insisted that the condition is considered “benign” and is not treated.
I still had many concerns.
My son, who is almost six years older than Olivia, has a complicated combination of ADHD, ODD, anxiety/mood disorder, and sensory processing disorder, and my nephew is on the Autism spectrum. I wanted further consultation and follow up for my daughter.
The neurologist referred us to Dr. Roger Freeman, a pediatric neuropsychiatrist at Children’s Hospital for follow up.
Dr. Freeman is a top expert in the field and in 2015 published a book called Tics and Tourette Syndrome: Key Clinical Perspectives (Clinics in Developmental Medicine)
It was an incredible relief to talk to Dr. Freeman and begin to understand what was going on with Olivia.
We saw Dr. Freeman in 2010 when Olivia was first diagnosed. He came to our house for a home visit to observe Olivia. He was very thorough and helpful in his observations and his explanations.
in 2017, when Olivia was ten years old, we returned to see Dr. Freeman to follow up, update her records and receive medical guidance as we work to help Olivia learn and succeed in a classroom setting.
Once again, our appointments with Dr. Freeman were enlightening and informative. We are very blessed to have Vancouver Children’s Hospital and experienced doctors so close to home.
Do Motor Stereoptypies Hurt?
No, motor stereotypies, in general, are not painful, unless the child/person’s particular stereotypical movement includes self-harm, such as self-biting, eye-gouging, head-banging, etc. In fact, according to some people with motor stereotypies, they can actually feel like an enjoyable release.
Dr. Freeman assured us that my daughter is not in pain when she is experiencing her motor stereotypies. In fact, some of his older patients described the sensation as enjoyable.
As parents watching our young children repeatedly “disappear” into this strange, uncontrollable movement, we immediately worry that our child is in pain or is experiencing something unpleasant.
My daughter was about 22 months old when I first realized that the rigid movements she was making were not going away and they were not under her control. She was too young for me to ask her what was happening or what she was feeling.
When Olivia was old enough to communicate with us about what her stereotypies felt like, she described them as “daydreams” and they weren’t unpleasant at all.
Now, at thirteen, Olivia still struggles to describe the sensation completely. Perhaps it is like me trying to describe a yawn. I am not exactly sure what is going on or why I just know when I need to yawn and it is a relief when I allow myself to.
As a parent, it’s helpful when your child gets old enough to be able to talk to about their stereotypies, what they feel like, and how they feel about them.
If you are worried that your child is in pain during their motor stereotypies, I hope that you are encouraged as I was to learn from older children, teens, and adults, that their motor stereotypies are not painful, frightening, or unpleasant to them. Instead, they are often an enjoyable release or relief.
What causes Stereotypic Movement Disorder
The cause of stereotypic movement disorder is unknown but it is thought that motor stereotypies may involve cortical-striatal-thalamo-cortical pathways.
There is a new study by Dr. Harvey Singer from Johns Hopkins that indicates there may be a link between GABA and glutamate dysfunction and primary complex motor stereotypies.
What Treatments are Available for Complex Motor Stereotypies — Is there a Cure?
Right after the doctor tells you that your child is not having seizures and assures you they are not in pain, your next question is probably, “So what can we do? How can we stop these movements?”
Because we all want to know:
“Will my child grow out of their motor stereotypies?”
Unfortunately, there are no cures, established drugs or other medical treatments for primary complex motor stereotypy or stereotypic movement disorder.
A study published by ScienceDirect also confirmed the general consensus that primary motor stereotypies typically begin in early childhood and while they might become less frequent or intense, they usually continue at least through the teenage years. Furthermore, they found that the comorbidities occurring along with the motor stereotypies, such as ASD and ADHD, are usually more disruptive than the stereotypic behavior.
When my daughter Olivia was a toddler, she had no signs of ASD and appeared to be typically developing. Eventually, Olivia was diagnosed with ADHD and has a learning disability but she is not on the Autism Spectrum.
Olivia is now on Adderall to try and help her focus on schoolwork, but the medication doesn’t appear to affect her CMS. She still has her CMS and they are much worse when she tries to sit still and concentrate. Listening to teaching or instructions is incredibly challenging for her.
How to Help Your Child Feel Confident and Succeed with Motor Stereotypies
“I am afraid people will make fun of my child.”
As parents, all we want to do is protect our children. The thought of someone teasing, taunting, or excluding our child is unbearable.
Fortunately, the world is a much more accepting and understanding place nowadays.
While Olivia has experienced a small amount of teasing/bullying, over the years most of her peers and classmates have been accepting and encouraging.
We have worked hard to empower Olivia and help her to not feel embarrassed or ashamed of her CMS. Of course, it isn’t always easy and Olivia does get frustrated and upset by the challenges of living with her stereotypical movement disorder.
At thirteen years old, Olivia is a happy, well-adjusted teenager. She is super social, with lots of friends, and she loves cheerleading. (She is desperate for the pandemic to end so she can return to cheerleading and hanging out with her friends.)
While she would wish away her CMS if she could, she is still thriving and growing.
If your child has motor stereotypies, let me first give you a huge, virtual HUG!!!
I know that you are worried about your child and you may feel overwhelmed with all the unknowns about their future.
Parenting is wrought with fears and unanswerable questions. The truth is, we don’t have any guarantees about any of our children’s futures.
But I hope you can find comfort, as I do, that your child’s motor stereotypies are not hurting them or damaging their brain as seizures would.
And while strangers may stare and friends may ask questions, your child can develop strong self-esteem and be proud of who they are.
We are each original and unique creations — and your child with motor stereotypies is a fabulous, amazing creation whose brain might just be working a little harder and in a bit of a different way than the rest of ours.
Empower your child. Teach them to not be ashamed of their motor stereotypies.
I tell my children that bullies can’t have any power over us if we are not ashamed — if we don’t give them that power.
Finally, please know that you and your child are not alone! There are so many of us families living with forms of motor stereotypies.
On my original post, Diagnosis Stereotypy, there are over a hundred and fifty comments from parents and individuals living with motor stereotypies. You can click over to that comment section to read about their many experiences and learn from their stories.
Please leave your comment and questions on this post as well and I will make sure to answer any questions that I can.
Your stories and experiences are so important for other readers to read, so thank you for sharing!
As well, feel free to email me if you would like to correspond privately. I have gotten to know parents from all around the world who are looking for answers and empathy as they face their child’s diagnosis of stereotypy.
- Johns Hopkins Medicine – Primary (Non-Autistic) Motor Stereotypies
- Johns Hopkins Medicine – Sign and Symptoms
- Johns Hopkins Medicine – Motor Stereotypies FAQs
- ScienceDirect – Primary Complex Motor Stereotypies in Older Children and Adolescents
- Motor Stereotypies: A Pathophysiological Review
- American Journal of Neuroradiology – GABA and Glutamate in Children with Primary Complex Motor Stereotypies: An 1H-MRS Study at 7T
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Get To Know Olivia Even More…
Olivia is so full of energy and personality. While this blog post has been all about her challenges with Stereotypic Movement Disorder, we’ve shared tons of fun blog posts, photo shoots and videos with her over the years.
One of my favorites is this cute video from when she was 7 years old. She’s sharing how she overcame her fear of getting her ears pierced. It’s a helpful blog post and video for kids and their parents who are wondering about where to get ears pierced.
We also had such fun creating ShopJustice shopping haul videos in 2015 and 2016.
In the videos, you’ll notice that Olivia is not doing any stereotypic movements. That is because while she is actually talking, she doesn’t do the movements, and we have cut out all the clips where her CMS shows. When the other kids are talking, it is hard for Olivia to sit still and not resume her stereotypic movements. While we could choose to let the movements show in the videos, she’d rather we didn’t. So with a little time on extra “video takes” and editing, we make it work. Her cousins are super patient and completely understanding.
I love how these videos capture their wonderfully unique personalities and especially their sweet voices at these young ages.
Here’s their shopping haul video from 2015…
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