Tics and Stereotypy in Children – Lessons from a Six Year Old

The other day, I overheard a surprising and profound conversation between my six year old Julia and her 4 year old cousin Olivia that makes me wish we’d all see the world with the wisdom of children…

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My 4 year old Sophia had been chewing on her shirt sleeves again and I was changing her into a dry shirt.

Julia: “Sophia has a really bad habit of chewing on her shirt sleeves.”

Olivia: “That’s not a REALLY bad habit. A REALLY bad habit is “ticking”.

Olivia has stereotypies which are involuntary repetitive movements often seen in autism spectrum disorders, (such as arm flapping,) and in her case stereotypic movement disorder, which can occur in typically developing children like Olivia.

Olivia’s stereotypy is a very noticeable clenching and contorting of her jaw, hands and body — almost resembling a small seizure.

Stereotypy is sometimes called stimming in autism, and while it’s technically different than “tics“, we often have used the simpler name to explain it to the kids. We sometimes say “Oh that’s just her tics.”

As soon as Olivia mentioned her “tics”, she seemed a little embarrassed, changed her mind and started to make up something else to claim to be a bad habit… but Julia interrupted her…

Julia: “No, ticking isn’t a bad habit. It’s just part of who you are.”

My jaw dropped. Wow.

Me: “Thank you Julia! That is so very true. Thank you for pointing that out. High-Five!”

Julia: “Yeah, a really, really bad habit is SMOKING!”

Me: “Yes, Julia. You are so very right!”

What is Stereotypy? Is it the same thing as Tics?

Unlike tics, stereotypies usually begin before the age of three. In Olivia’s case, her stereotypies began as a newborn and were diagnosed shortly after her second birthday. Because Olivia is so young, it has only been in the last year or so that Olivia has understood people talking about her stereotypies or “tics.”

Olivia has only referred to her “tics” a few times, but of course Janice, (my twin sister and Olivia’s mom,) and I have often worried about how her stereotypies will affect her socialization and her self esteem. To hear Olivia actually refer to them as something that was “wrong” with her was heart breaking, but having Julia meet her insecurities with a confident reassurance made me so grateful.

The bond that Olivia has with my girls, Julia and Sophia, is one of Janice and my greatest joys in life. Olivia has a big brother, Jackson, but no sisters. So the opportunity for Olivia to have cousins who are as close to her as sisters of her own, is incredible.

While our girls are so attached to one another and crave each other’s company, I realize they will at times wound and disappoint one another as all siblings do.

But hopefully, as Olivia deals with the ramifications of this noticeable “difference” between her and her peers, her cousins will continue to remind her that stereotypy isn’t something that is “wrong” with her, it is just part of who she is.

And she is fabulous!

Additional information about tics and stereotypies:

“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.” — Excerpt from Wikipedia

You can also read more about Olivia’s diagnosis and an update on Olivia’s stereotypic movement disorder in Janice’s post, Diagnosis: Stereotypy

UPDATE on Olivia

It has been a few years since I wrote this post. Olivia is now almost seven and is starting second grade next week.

Olivia still has her stereotypies. Her movements are quite challenging for her — any time she has to wait or try to stay still, she is likely to begin the movements. She is not in control of them or when they happen.

It is particularly difficult at school or any time when she is trying to sit or stand still and listen to instructions. When her movements take over, she cannot listen or follow what someone is saying.

Olivia has a great attitude and takes it in stride, but we are obviously concerned how her movement disorder will impact her learning and self esteem.

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Thank you so much for your concern and interest in our sweet Olivia. We will continue to keep you updated and let you know if we learn more about how to help Olivia and other kids with tics and stereotypies.

Written by Susan Carraretto, co-founder of 5 Minutes for Mom.
Wanna chat? Find me at: @5minutesformom, @susancarraretto and Facebook.com/5minutesformom.

Comments

  1. says

    YAY Julia! I hope my daughter can get a boost like that from one of her peers someday. She still doesn’t yet realize that she is the only one that wears a vest or uses a nebulizer or takes pills before she eats anything (due to cystic fibrosis). But she is about to turn three and I know it is only a matter of time before she realizes she is “different”.

    • says

      Thanks Nancy for sharing… I’m sorry I didn’t reply at the time. I was just updating this post and read your comment now.

      How is your daughter doing?

  2. says

    Julia- Thank you for teaching Olivia what a “REALLY BAD HABIT is” and being just a wonderful kid. Keep being true and speaking the truth.

    Susan, please pat yourself on the back. Parents are their child’s first teacher and obviously, you have taught your daughter empathy and understanding and wisdom.
    You are all awesome. Thank you for sharing this story.

  3. Rebecca says

    Hooray for Julia! She’s a little advocate in the making! My son has Tourette’s syndrome in which these involuntary movements are referred to as tics – when people ask him why he does what he does, he tells them that he has TS and explains what it is (he’s 10). Normalizing the situation as Julia did makes it easier for all to understand and accept.

  4. says

    What a great moment! My son has tics, and for a while we were seeing several come up one after another… now those have faded and he just has the one that is fairly constant (a vocal tic, a quiet string of huh, huh, huh, huh when he’s engaged in something like a movie, game, etc that requires concentration.) For her to realize that for some it’s just part of you, wow, awesome! :)

  5. says

    I love this post. Julia is my hero. I have a 2 year old twins, a son, and daughter who has CP and a movement disorder. I worry, worry and worry some more about how this will affect her self-esteem and confidence as she grows, but I hope that I will be as great of a parent as you all and my little boy will say something similar to Julia should E ever vocalize her uniqueness to anyone. Well done to Julia and to you all:)

  6. Melanie says

    I stumbled across your blog and I am so glad I did! My 5 year old has been diagnosed with complex motor sterotypies – movement disorder. He is starting kindergarten this year and his preschool teacher and I are concerned for him in the public school setting. He is an otherwise typical, normal developing and super smart little boy – but I am so worried about him getting teased. His teacher now gives him a lot of one on one and I know it is not the same in a public school setting. Any suggestions? The therapist they sent us to for occupational is awful. I took him to one visit and haven’t been back. She basically wants to punish him when he does his tics. No fun, or toys if he does the behavior. Yuck. Anyways I would love to hear your ideas!

    • says

      Oh my gosh — I can’t believe that OT punished the tics! HORRIFYING!

      For Olivia, as she gets older, the key for her seems to be motion. If she is sitting or standing still she enters the movements. I am really concerned about how this will impact her learning. She is entering second grade this year and she can’t sit and listen to someone give her instructions.

      We will try once again to use stress balls or other things to keep her body and mind engaged, but I am not sure it will help. I am thinking about starting biofeedback for her…

      Good luck and I am so sorry I just noticed your comment now!

      -Janice

  7. Amanda Seats says

    My daughter has primary motor stereotypes and I’m wondering if there i any information out there on diet and how it affects this condition.

  8. ChristinaC says

    Hi! My 2nd-grade son was just diagnosed with stereotypies, and it is a relief to read about them here, although I was hoping to hear that they would go away over time on their own. He doesn’t seem to have any other issues, although he’s a little on the anxious and obsessive side. The toughest thing is other kids considering him weird and his teacher worrying that he can’t get his work done to the best of his ability. Has anyone out there found helpful therapies? I’m open to everything – we’re going to try deep relaxation hypnotherapy this week, and I’m checking around for psychiatrists who specialize in stereotypies.

  9. Kim says

    My 9 year-old son has complex stereotypies. He showed signs when he was a baby and was diagnosed at 5 years old. The behaviour has not lessened at all over the years. It’s only now that his friends are noticing and calling it “weird”. He has mentioned that he keeps his hands under his desk at school and he tries to suppress it. When friends ask why he does it, he tries to ignore the question or just responds that it’s a habit. I tell him that he should only try to suppress it if it bothers him, and that he shouldn’t feel the need to change for other people. He does get left out of birthday party invites and other social events, which I suspect is related – and this breaks my heart, but I really don’t know how to deal with it except let him know that everyone is different, that I am super proud to be his mom and that I love him with all my heart.

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