Understanding the causes of anxiety in PWS helps to process the questions
Anxiety in PWS is driven by a deep, biological need for sameness
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It was 6:47 a.m. when our son Jake, who has Prader-Willi syndrome (PWS), asked for the eighth time, “When are we leaving for our weekend vacation to Colorado?”
The trip was three days away, and I gave the same answer I’d provided seven times before: “We are leaving on schedule.” I watched something visibly unknot in his face, just for a moment, before the countdown to round nine began.
If you’re a caregiver to a child with PWS, you might be familiar with this scene. Maybe your story involves dinner. Or perhaps it’s Amazon’s package-tracking page, checked so many times that your child can recite the estimated delivery window in their sleep. Or maybe it’s something else entirely. Whatever the specific loop, you know the feeling: the gentle, grinding hum of anxiety that runs underneath life with PWS, equal parts exhausting and heartbreaking.
Here’s the thing, though: The vacation question isn’t really about vacation.
Seeking certainty
Research published in the Journal of Intellectual Disability Research found that over 78% of children with PWS showed repetitive questioning following changes in routine or unmet expectations. These questions, the study said, appear to function as a strategy to restore a sense of predictability to the environment. In other words, asking “When are we leaving for vacation?” over and over isn’t just perseveration. It’s a coping mechanism. The brain is seeking certainty.
The same study found that 87% of individuals showed negative emotional behavior after unexpected changes in routine — a statistic that will surprise absolutely no PWS caregiver who has ever had to announce a last-minute change in plans.
This is the landscape of anxiety in PWS. Researchers describe it as one of five core behavioral domains in what’s called the “PWS personality” framework — not a character flaw, and not a bad habit, but a neurologically rooted feature of the syndrome, driven by cognitive rigidity and a deep, biological need for sameness. The brain is, quite literally, wired to need certainty.
Which explains the Amazon tracking. If a package is coming on Thursday, the tracking page is updated today, and it will be updated again in 20 minutes, and again after lunch, because upon every refreshing of the page, the answer is still there: It’s still Thursday. Certainty is restored. Until it isn’t — because then we go into a tailspin about the exact time it will be here. I may need to change my Amazon password!
And then there are the truly unpredictable things. Just yesterday, a water pipe broke in our kitchen. It wasn’t a drip, it was a break — the kind that involves rushing water that gets you soaked when you try to turn off the valve. For most people, this is stressful but manageable. For someone with PWS, an unexpected event of this magnitude — wet floors, loud fans drying the floor, strange people in the house, no clear timeline, a normal routine completely derailed — can trigger a spiral that lasts well beyond the moment the plumber leaves. The event itself is resolved, but anxiety doesn’t always get the memo.
The toll this takes on caregivers is real, and it deserves to be said plainly. Navigating someone else’s anxiety around the clock, while also managing your own nervous system, is exhausting work. It can make you feel like you’re failing when you’re actually just tired.
In 2023, a team of researchers published a new measurement tool called the PWS Anxiousness and Distress Behaviors Questionnaire. Developed with input from more than 400 caregivers, it is designed to measure anxiety-related behaviors in PWS and to track whether treatments are actually helping. That kind of validated tool matters enormously. It means the research community is taking this seriously, building the infrastructure to test real interventions, and listening to the people who know PWS best: families like ours.
Understanding why the anxiety happens doesn’t make it disappear. But it does change something. When I hear that vacation question for the 12th time, I can remind myself that this isn’t defiance, it isn’t manipulation, and it isn’t something I caused. It’s my son’s brain reaching for solid ground in a world that feels uncertain. And sometimes, knowing that, I can answer with just a little more patience.
And, of course, I can’t forget the humor when unexpected things happen, like a kitchen water pipe breaking. Because now we may not leave for vacation on schedule!
Note: Prader-Willi Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Prader-Willi Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Prader-Willi syndrome.
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