This blog is based on the presentation “Managing Repetitive Behaviors & Improving Motivation,” given by Elizabeth Roof.
We have all heard the classic riddle: which came first, the chicken or the egg? When it comes to anxiety and repetitive behaviors in Prader-Willi syndrome (PWS), many parents and caregivers feel stuck in a similar loop. Does anxiety fuel repetitive behaviors, or do the behaviors increase anxiety?
The truth is that they are deeply connected, and understanding this relationship can make a meaningful difference in daily life.
Why Repetitive Behaviors Happen
Repetitive behaviors are often closely linked to anxiety: when someone feels anxious, uncertainty can be especially hard to tolerate, and even small unknowns can cause significant distress. When the world feels unpredictable, repeating a familiar action can provide temporary relief.
Think of scratching a mosquito bite. It feels good for a moment, but the urge to keep scratching quickly becomes hard to resist. Many repetitive behaviors in PWS work in a similar way. They soothe anxiety in the short term but can escalate into compulsions that are difficult to stop.
What Anxiety Looks Like in PWS
Anxiety in PWS does not always look like obvious worry. It can show up in many different ways, including:
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A constant need for reassurance
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A strong desire to control people or situations
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Pushback when faced with new situations
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Repeated questions about routines, schedules, or expectations
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Difficulty with transitions
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Visible worry or distress when plans change
If any of these sound familiar, you are not alone. These are common and understandable responses to uncertainty.
Self-Soothing vs. Repetitive Behaviors: What’s the Difference?
Not all repeated behaviors are the same. Elizabeth Roof emphasizes the importance of distinguishing between two types:
Self-Soothing Behaviors
These behaviors help calm the body and mind, such as tearing paper, fidgeting with a small object, or humming softly. These actions generally reduce stress and support emotional regulation.
Anxiety-Driven Repetitive Behaviors
These behaviors often begin as a coping strategy but quickly become difficult to stop. For example, repeatedly asking the same question may bring brief relief but can increase anxiety over time.
Helping your child build healthy self-soothing strategies is key. The more tools they have, the less likely they are to rely on compulsive behaviors, especially if these strategies are built into the day during predictable stress points.
Build Predictability (and a Little Unpredictability) Into the Day
A structured day is one of the most effective ways to reduce anxiety and repetitive behaviors, and that structure does not need to be rigid. Helpful strategies include:
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Create a Schedule, Together. Have your child help design a daily schedule. When they help create the daily plan, they feel more in control.
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Add a Touch of Chance. Using something like a spinner or dice for certain choices helps children gradually learn to tolerate uncertainty in a safe, controlled way.
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Incorporate Fun Movement and Breathing Breaks. Movement helps reset the nervous system, and keeping these breaks playful and enjoyable makes them more effective.
Helpful Strategies to Support Learning and Anxiety
Here are practical tools you can start using right away:
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Set a clear limit on repetitive questions. Three is a good number. After three times, calmly explain that you will not answer again.
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Let your child teach you something they are interested in, which channels their need for control in a positive way.
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Use everyday activities to practice new skills.
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Give appropriate responsibilities where your child can lead or help others.
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Talk openly about what they can control and what they cannot. Being concrete helps reduce anxiety.
The Power of a Visual Schedule
A visual schedule is one of the most effective tools for individuals with PWS. A good visual schedule:
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Shows the order of steps
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Provides a concrete and predictable guide
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Helps with transitions
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Builds independence
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Offers a clear sense of accomplishment
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Makes it easy to see what is coming next and when something is finished
Remember to keep referring back to the schedule throughout the day. It only works if it stays active and visible.
Motivation Matters
For strategies to work, your child needs to feel some sense of control. Helpful approaches to try include:
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Turning tasks into friendly competitions (like pedometer challenges)
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Using timers and other simple tools to keep activities moving
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Making tasks fun, since fun is motivating!
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Staying consistent with your words and expectations (“Say what you mean and mean what you say.”)
A powerful strategy is to strategically place preferred activities after less preferred ones. Remind the person with PWS that they will get to do Y once they finish X. This only works if the outcome is predictable: the desired activity must happen. You can delay it if needed, but never take it away—removing it increases anxiety and undermines trust. For example: “We will go for a walk when you finish making your bed.”
These approaches help build motivation, reduce anxiety, and encourage follow-through. Remember that behaviors naturally ebb and flow over time. That is normal. Do not fight it. Adapt with it.
Watch the Full Presentation
This blog is based on a webinar by Elizabeth Roof. While originally recorded during COVID, the strategies and recommendations remain valuable anytime. Watch the full presentation here.
