Understanding What Stereotypies Are—And What They Aren’t

Olivia was around 5 months old when her parents, Danielle and Brendan Collins, noticed she was making unusual movements.

“She would redirect her gaze up and hold it there,” says Danielle. “She would also stiffen her body.”

Because these types of behaviors can fade as a child gets older, the family’s pediatrician recommended waiting to see if that would be the case for Olivia. But the movements progressed, and at nearly 3 years old, Olivia had begun rocking and rhythmically moving her hands. It was then that a neurologist diagnosed Olivia with stereotypic movement disorder.

Olivia is now 5 years old. “She’s such a wonderful kid,” says Danielle. “She’s super smart, so connected, and intuitive. I swear she came out of my womb talking. She’s fun, she’s happy.”

Stereotypic movement disorder is a condition in which a person shows repetitive, rhythmic movements that appear to have no specific purpose. These behaviors might include things like hand flapping, wrist rotations, finger flicking, body rocking, head nodding, or mouth stretching. Stereotypies can be associated with conditions like autism spectrum disorder, attention-deficit/hyperactivity disorder, and anxiety, but otherwise typically developing children can have them too, which was the case for Olivia.

Doctors diagnose this condition through careful observation and by ruling out other movement issues. However, even though there is a lot of research on some of the conditions associated with motor stereotypies, there’s not much at all on stereotypies themselves, leaving neurologists like Olivia’s with little information to share with Danielle and Brendan. So, even though the family finally had a diagnosis, it didn’t come with a lot of answers.

It was through her own search for answers that Danielle came across a study at Yale Child Study Center investigating motor stereotypies. She applied, and soon after, the Collins family found themselves en route to New Haven from Long Island, N.Y., to take part.

That study, led by Katarzyna Chawarska, PhD, Emily Fraser Beede Professor of Child Psychiatry in Yale School of Medicine’s Child Study Center, and funded by an anonymous donor, is part of ongoing research into motor stereotypies, their underlying cognitive and brain mechanisms, and their clinical management.

“In the past two years, we have made several discoveries about expression of motor stereotypies in young children and their links with important cognitive and affective aspects of development,” says Chawarska.

For families taking part in the research, the work provides answers and a sense of community.

“We feel so thankful that they’re doing this research because for parents like us who felt alone and had so many questions, they’re a light at the end of the tunnel,” says Danielle.

When children and their families visit Chawarska’s lab, parents fill out questionnaires and take part in interviews, while the children participate in experimental studies and receive a clinical assessment.

“My job is to help understand the entire child, not one area of their development,” says Mariana Torres-Viso, PsyD, BCBA-D, a clinical psychologist and behavior analyst on the research team. “I’m doing standardized clinical assessments to get a sense of their cognitive, social, and emotional skills, and their language.”

Because there are a lot of factors in these sessions that could affect how a child performs in a standardized assessment—new room, new people, new toys—“parents and clinicians work together to better understand the kid’s story,” as Torres-Viso says.

“We never lose sight of the fact that parents are the experts on their child,” she adds. “So, it’s about collaborating with the parents to really get a comprehensive picture of their child’s abilities. For older children, we ask about what the stereotypies mean to them to make sure that we ground our research in their perspective as well.”

A key feature of this research is its focus on motor stereotypies across multiple conditions instead of just one. Chawarska aims to determine whether motor stereotypies appear similarly across various conditions and are driven by the same biological mechanisms, which would suggest they could be targeted with similar intervention approaches. And her team is finding that might be the case. A study from the researchers currently under review suggests that in young children, regardless of the condition, motor stereotypies manifest in a similar way.

Another recent study of theirs, published in the Journal of Child Psychology and Psychiatry, included toddlers with autism or other neurodevelopmental concerns, such as global delays, emerging anxiety, or attention-deficit/hyperactivity disorder. The study included more than 600 2-year-olds, most of whom returned for reevaluation about 18 months later.

“We found that the presence of motor stereotypies in very young children often forecasts later developmental challenges in social, cognitive, language, or motor skills,” says Chawarska. This told the researchers that stereotypies are something to pay attention to even when toddlers appear to be developing typically.

One of their next questions was whether repetitive movements are more common in toddlers who are prone to distress or in those who have difficulty regulating their behavior.

To explore this, the researchers investigated whether a propensity toward distress in toddlers was associated with the later intensity of stereotyped movements. “For instance, some children will react more negatively to novel situations or minor frustrations. Are these the kids who might do more of these repetitive behaviors to calm themselves or escape from something that’s bothering them?” says Chawarska.

The researchers also explored whether the ability to regulate behavior was linked to stereotypies. “Perhaps the kids with repetitive movements are doing it because brain mechanisms that help them regulate their behavior function differently,” Chawarska explains.

They discovered that in toddlers, stereotypies have less to do with distress and more to do with behavior regulation. Their findings will be published in the Journal of the American Academy of Child and Adolescent Psychiatry Open.

“If their regulatory behaviors—sometimes called ‘executive functions’—are weakened, they have a stronger propensity toward more severe repetitive symptoms later in childhood. And that speaks to potentially shared underlying brain mechanisms,” says Chawarska, who’s now diving deeper into the mechanistic links between motor stereotypies and executive functioning in early childhood. “If we are right, this could inform us about the best ways of intervening in children for whom motor stereotypies interfere with daily functioning.”

Intervention is another focus of the group’s research, including both how to intervene and whether intervention is necessary.

“Just because something is different, doesn’t mean that it has to be changed,” says Torres-Viso. If, say, a child flaps hands when they get excited, but it doesn’t keep them from playing or from paying attention to their teacher, does that need to be addressed? “We all engage in some idiosyncratic behavior—I bite my cheek as I think. But just because it looks different, doesn’t mean I have to change it,” she says.

“When we ask people who have motor stereotypies how they feel when they perform them, some say that it’s calming, that it helps them cope with stressful situations,” says Chawarska. “That suggests it has certain regulatory functions.” Trying to eliminate or suppress these behaviors may not be the best way to help the child.

Even when interventions are recommended, such as when repetitive behavior interferes with learning, limits chances to play with others, or draws unwanted attention, intervention can look very different for each child. It should always begin with a careful understanding of the behavior itself, says Torres-Viso.

“The most important first step is figuring out when these behaviors tend to show up and what happens right after, since this helps us understand what purpose they may be serving for the child,” she says. “Once there is an understanding of the ‘why,’ then treatment can become highly individualized.”

For some children, this might involve learning strategies to redirect themselves to other activities. For others, it may involve recognizing rising anxiety and building strategies to manage it. For some families, the goal may not be to change the behavior directly, but to adjust the environment, such as helping the child explain their behaviors to peers or creating spaces where they feel more comfortable being themselves.

“Now we’re diving more deeply into understanding what stakeholders need,” says Chawarska. “We’re asking parents of young children what is it that concerns them, what they would like, and what they expect from health care professionals. And we’re also talking to kids who have motor stereotypies; we want them to tell us about it, to give us their perspective.”

The goal of this part of the work is to shape clinical practice regarding motor stereotypies, “to help people in the way that they want to be helped,” she says.

For Torres-Viso, that’s one of the rewarding aspects of this work.

“We have data now that says these motor stereotypies are happening across diagnostic spectra. What that means from a clinical standpoint is that when I see a kiddo engaging in repetitive movements, I know that means nothing in and of itself. We need more information! So, the presence of these behaviors, in a way, should prompt us to think about a kid with much more nuance,” she says. “My hope is that this work also helps inform our colleagues about what motor stereotypies are and what they are not and enables people to become better diagnosticians. And I hope it helps families understand what’s going on for their child from a more individualized standpoint.”

This has certainly been true for Olivia’s family.

“We feel so much better now than when we first got Olivia’s diagnosis,” says Danielle. “The research team had so much information and they knew so much about it. You could really tell that they were passionate about it and that they cared. We got a lot of our concerns answered, and it really helped us to feel like we weren't alone anymore. We know more about what the future will look like.”