Social Skills in Prader-Willi Syndrome

Individuals with Prader-Willi syndrome (PWS) often face unique social challenges that can affect friendships, communication, and emotional well-being.

Many people with PWS genuinely enjoy being around others and are highly motivated to connect with family members, friends, and peers; however, they face several challenges that can make social interaction difficult.

Individuals with PWS often have difficulty:

• Understanding social cues
• Recognizing emotions in others
• Reciprocal (back-and-forth) conversations
• Understanding another person’s point of view
• Emotional regulation
• Cognitive flexibility
• Maintaining appropriate personal space

There are many challenges that the person with PWS must contend with that make developing good social skills difficult. These include:

Hyperphagia- Preoccupation with food may deplete cognitive and social resources that children with PWS need to engage well in social interactions. If they’re hungry or thinking about food, they may not be as focused on playing or trying to understand what their friend is doing or feeling.

Cognitive Differences - Many individuals with PWS struggle with flexible thinking, problem-solving, and interpreting social situations. 

Emotional Regulation Challenges - Difficulty managing frustration and disappointment can interfere with friendships and participation in social activities.

Speech and Motor Planning Difficulties - Speech apraxia, dyspraxia, and communication delays can make conversations and participating in social activities more challenging

PWS and Autism Spectrum Disorder

Social skills challenges in PWS can overlap with those observed in autism spectrum disorder (ASD) but are not exactly the same. One key difference is in ‘social motivation’. People with PWS often desire and very much enjoy social interactions and friendship but have challenges navigating these relationships due to difficulties with specific social skills such as repetitive conversation topics, behavioral and cognitive rigidity and emotional regulation.

Role of PWS Genetic Subtype

People with the maternal uniparental disomy (UPD) or imprinting defect (ID) genetic subtypes are more likely to have greater challenges with social skills and to be diagnosed with ASD compared to those with deletion, but research has shown that all genetic subtypes of PWS (deletion, UPD, and ID) show social challenges and can benefit from support in developing their social skills.

Unlike typically developing children, many individuals with PWS do not naturally learn social skills simply by observing others. As a result, social skills often need to be taught intentionally and practiced repeatedly.

Preschool and school-age children with PWS may be particularly affected by speech challenges and motor planning difficulties. Early intervention for speech and physical therapy can be very helpful for social skills development.

Social skills difficulties in PWS can present physically, verbally, or cognitively. The following are some specific ways in which these social challenges may show up in your loved one with PWS. You may also see many of these same challenges continue through the teen and adult years.

When looking to improve the social interactions of preschool and school-age children with PWS, here are 8 ideas to try:

Speech therapy and physical therapy can be especially useful. As your child gets older, speech therapy in a group setting can provide more real-time practice and facilitation by the group leader. You can also suggest including typically developing peers in the group. You want your child to have lots of opportunities to practice and generalize social skills in real time with a friend, beyond just working with the therapist.

Research shows that pretend play skills are associated with positive outcomes in areas where people with PWS struggle, such as social awareness, emotion regulation, and cognitive flexibility.

Pretend play is a key component of social development. It helps children learn to take in others' perspectives, transfer knowledge from one situation to another, and balance their own ideas with those of others. These skills lay a foundation for higher-order cognition and thinking skills.

Research published in 2021 by Dimitropoulos, et al., showed that a six-week remote “pretend play skills” intervention can improve social and cognitive skills in school-age children with PWS. These skills were especially improved when other “players” were included in the play situation.

ABA therapy can be helpful for building and practicing social skills and for teaching emotional regulation skills. Also, some young children with PWS have extreme behaviors (e.g., tantrums) that can interfere with developing social skills and making social connections. ABA or other therapies focused on managing these extreme behaviors may help reduce these behaviors and therefore give your child more opportunities to make friends and practice social skills. Learn about ABA for PWS in this video:

Why do Teens and Adults with PWS Experience Social Challenges?

Teens and adults with PWS have ongoing challenges with reciprocal (back-and-forth) communication and with recognizing emotions. Some people with PWS find it especially challenging to clearly distinguish negative emotions in others, such as sadness, anger, and fear. In a 2019 study by Dykens et al., participants made gains in detecting social cues over the two-year study period, but they still had difficulty accurately perceiving others' intentions (e.g., judging sincere vs. insincere intentions).

Researchers have found that people with PWS take longer than typical participants to process facial cues for emotions (Debladis et al., 2019). In everyday interactions, this may make it harder to quickly recognize how another person is feeling. The study also found that individuals with PWS due to UPD spent less time looking at the eyes and more time looking at the nose and mouth when viewing faces. Because the eyes often provide important clues about emotions and social intent, this difference in visual attention may contribute to some of the social challenges experienced by people with PWS.

Adults with PWS also have greater difficulty processing voices and sounds than typical individuals. Researchers have found that people with PWS may take longer to process voices and other sounds (Debladis et al.). These findings suggest that people with PWS may need more time to interpret auditory information. Because social interactions rely heavily on recognizing voices, understanding tone, and responding quickly to spoken information, these differences may contribute to some of the social communication challenges experienced by individuals with PWS.

Taken together, these studies help explain why social situations can be particularly challenging for individuals with PWS. Difficulties recognizing emotions, interpreting facial expressions, processing voices and sounds, understanding another person's perspective, and responding flexibly in social situations can all affect relationships and day-to-day interactions. Importantly, these challenges are not a reflection of a lack of interest in connecting with others. Many individuals with PWS are highly social and enjoy spending time with family and friends, but they may benefit from additional support in learning and practicing social skills. The good news is that research is helping us better understand these challenges and identify effective strategies and resources that can support social development across the lifespan.

• improved overall social function
• fewer behavior problems
• using calming techniques to help manage emotions in day-to-day situations
• connecting with other group participants

Key Takeaways

Social skills can be challenging for individuals with PWS, affecting friendships, family relationships, school, work, and community participation. Research has shown that people with PWS may process social information differently than their typically developing peers, making it harder to recognize emotions, interpret social cues, understand others' perspectives, and navigate complex social situations. At the same time, many individuals with PWS are highly motivated to connect with others and build meaningful relationships.

The good news is that social skills can be taught, practiced, and strengthened over time. Early intervention, structured opportunities for social interaction, and targeted programs such as BOSS can help individuals with PWS build confidence and develop important social and emotional skills. Ongoing research continues to improve our understanding of social development in PWS and is driving the creation of new resources. As our knowledge grows, so do the tools available to help individuals with PWS build stronger relationships and thrive in their communities.