Behavioral services for individuals with Prader–Willi Syndrome: An initial examination of experiences, needs, and wants of caregivers
PWS caregivers want ABA but can’t find providers who know the syndrome—start learning PWS-specific behavior protocols.
01Research in Context
What this study did
Bedard et al. (2023) asked caregivers of people with Prader-Willi Syndrome about ABA. They used an online survey to learn what behaviors worry families and what help they want.
The team wanted to know how easy or hard it is to find ABA providers who understand PWS.
What they found
Families said problem behaviors are big and daily. Yet most cannot locate a BCBA who has ever treated PWS.
Caregivers want ABA, but they feel turned away because clinics say, "We don’t know this syndrome."
How this fits with other research
Garikipati et al. (2024) offers a fix: parents taught with 40 hours of training delivered ABA at home and kids gained skills. The PWS survey shows the same need for access; parent-led ABA could fill the gap.
Older surveys saw the same picture in autism. van Timmeren et al. (2016) found most preschoolers with ASD got zero behavior therapy. Bedard’s 2023 data say the empty-seat problem now hits PWS families too.
Lerner et al. (2022) asked 701 community providers how well they know ABA for autism and already found low familiarity. Bedard flips the lens to caregivers and hears the same result: "Providers don’t know us."
Why it matters
If you are a BCBA, you will meet PWS soon. Learn the basics now: food management, escape extinction safety, and reinforcement without edible treats. Offer parent coaching if you are not yet ready for 1:1 cases. One trained family can spread your name to a whole PWS support group.
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02At a glance
03Original abstract
AbstractPrader–Willi Syndrome (PWS) is a rare neurogenetic disorder that presents with a variety of behaviors that could be considered challenging by caregivers, including excessive food consumption and volatile tantrums. Although these behavior challenges can be dangerous and interfere with successful daily living, previous research suggests that caregivers have trouble accessing effective interventions. Twenty‐seven caregivers of individuals with PWS completed a survey to assess their needs and wants for services addressing behavioral challenges related to PWS. The survey was classified into four sections: prevalence of behavioral concerns, current access or barriers to accessing behavioral supports, familiarity with applied behavior analysis (ABA), and specific needs when accessing behavioral services. Data were analyzed using descriptive statistics. Although caregivers reported struggling with behaviors, such as tantrums, repetitive behaviors, and rigidity, many identified barriers to accessing treatment, including difficulty in finding services or practitioners familiar with PWS. Applied behavior analysis shows potential for addressing many of the behavioral challenges associated with PWS reported by caregivers. As caregivers of PWS continue to advocate for ABA‐based therapy for the individuals they support, practitioners need to take into account the needs and wants of PWS caregivers and specific behavioral needs of individuals with PWS.
Behavioral Interventions, 2023 · doi:10.1002/bin.1957