Social Skills and Prader-Willi Syndrome

Tips for Improving Social Skills in People with PWS

Social skills and social connections are important for all of us. The term “social skills” is not only about friendships with others but is also about problem-solving, decision-making, self-management, and perspective taking in a social situation. Difficulties with social behaviors may interfere with learning, school experiences—including teacher acceptance—and future work opportunities, and psychological well-being.

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Social Skills and PWS

Most people with Prader-Willi syndrome need extra help learning effective social skills.  

There are many challenges that the person with PWS has to contend with that make developing good social skills difficult. These include hyperphagia, cognitive issues, emotional regulation difficulties, and motor planning challenges. Social skills challenges in PWS can overlap with those observed in autism spectrum disorder (ASD) but are not exactly the same. 

Children and adults with PWS are socially motivated but have a harder time learning by watching others’ social interactions, which is the way most typically developing kids learn social skills.   

Research is helping the PWS community to understand the social skills challenges facing people with PWS and to develop techniques for helping to overcome these challenges. 

Common Difficulties with Social Skills in PWS

Common social difficulties in PWS are seen with reciprocal (back-and-forth) communication, recognizing others’ emotions, empathy skills, and accurate interpretation of social cues.

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.

Social Skills in Children with PWS

Preschool and school-age children with PWS may be particularly affected by speech challenges and motor planning difficulties. Getting early intervention with speech and physical therapy can be very helpful for social skills development. Social skills difficulties in PWS can present physically, verbally, or cognitively. 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. 

Physical

People with PWS may look at the person’s mouth instead of their eyes during a social interaction. People with PWS also can have difficulties with physical distance with others (getting in someone’s “space bubble”). 

Verbal

People with PWS may have challenges with speech “apraxia” or “dyspraxia” (the brain has difficulty planning the movements needed for speech, and this may cause the person to say something different than what they meant to say). The person with PWS may also talk (a lot) about topics that may not interest others, often steering the conversation back to the favored topic. 

Social Cognition

People with PWS may have difficulty considering others’ feelings, not because they don’t care but rather because they have difficulty putting themselves in someone else’s shoes; as part of this they may have difficulty understanding how what they say affects others (e.g., saying in front of friends at a party, “I like this gift better than all the others”).

People with PWS may have difficulty considering others’ feelings, often because they have difficulty putting themselves in someone else’s shoes.

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Pretend or Imaginary Play

Another key area of social development that is specific to young children and connected to social cognition skills is pretend or imaginary play. Research shows that pretend play skills are related to positive outcomes in areas that people with PWS struggle with, such as social awareness, emotion regulation, and cognitive flexibility (limitations of which can be seen as rigidity and repetitive behaviors). Pretend play is important because 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. These skills have also been shown to improve for some children with PWS after parents are trained to incorporate more pretend play in interactions with their child. 

Hyperphagia

Another factor that is unique to PWS and likely affects the development of social skills is hyperphagia, which can start during the elementary school years. One theory is that hyperphagia may negatively affect social skills because it may deplete cognitive and social resources that children with PWS need in order to engage well in social interactions (e.g., 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). 

A study funded by FPWR is examining this issue in PWS by exploring social reward circuitry, which has to do with how much value we place on social behaviors (e.g., a smile, praise, positive connection with another person or peer). It may be that as hyperphagia sets in, there is a shift in the brains of people with PWS away from social reward to prioritize other things of value. 

Target Areas for Social Interactions in Children with PWS

When looking to improve the social interactions of preschool and school-age children with PWS, here are some appropriate target areas:

  1. Early intervention with speech therapy and physical therapy can be especially useful once your child is ready. As your child gets older, speech therapy done in a group context can allow for greater practice in real time and with 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.
  2. Include the child with PWS in social situations where play and interaction can be facilitated by others either in formal social skills groups, speech therapy groups, or friendship clubs. Encourage interaction and connection with peers who also have challenges or disabilities and with those who are developing typically. 

Include the child with PWS in social situations where play and interaction can be facilitated by others, such as formal social skills groups.

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  1. Include others in the play with your child with PWS when possible. Siblings, adults, and other kids (either older or younger) can be good playmates. Research on pretend play (cited above) has shown that including others improves play behaviors in those with PWS. People with PWS do better with concrete rules and supports in social settings, so it is helpful to include this aspect. 
  2. Find ways to help your child better recognize emotions in others. Practice this at home using social stories. There are many resources online to assist with this. You can also create a game at home with family members (“guess what I am feeling?”) to help increase your child’s learning in this arena. For other ideas that could help people with PWS (even those without ASD) to recognize and understand emotions in others, get creative, and make use of online resources such as Positive Action’s 20 Evidence‑Based Social Skills Activities and Games for Kids and this Stages Learning blog about autism
  3. Repetition is key and helps those with PWS to learn, so—practice, practice, practice. 
  4. Children with the UPD or imprinting defect genetic subtype of PWS are at particular risk for developing autism spectrum disorder; thus it can be useful to obtain an assessment for this as part of early intervention services. If they meet criteria for this diagnosis, this can open some doors for additional services and therapies that can assist in their social and cognitive development. In addition, children with UPD/ID might particularly benefit from social skills programs developed for those with ASD, even if they don't have a formal diagnosis of ASD.
  5. Applied behavior analysis (ABA) therapy may be helpful for addressing social skills challenges in PWS, especially if there is a co‑diagnosis of ASD, but even without this co-diagnosis there can be a benefit in PWS. 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:

Social Skills in Teens and Adults with PWS

Older teens and adults with PWS often continue to struggle in the social arena, but the degree to which they have challenges varies by age, cognitive development, and genetic subtype. 

Reciprocal Communication and Recognizing Emotions

Research has shown that teens and adults with PWS have ongoing challenges with reciprocal or back-and-forth communication and with recognizing emotions. 

According to a 2019 study by Dykens et al., it appears especially challenging for some people with PWS to be able to clearly distinguish negative emotions in others such as sadness, anger, and fear. The participants did make gains in detecting social cues over the two-year study period, but they still had difficulty accurately perceiving the intentions of others (e.g., judging sincere vs. insincere intentions). 

Another recent study exploring this difficulty in recognizing and processing emotions (Debladis et al., 2019) found that all 39 adults with PWS in their study took longer than typical people to process facial cues for emotions. Using eye-tracking technology, they also found that people with PWS by UPD, in particular, spent less time looking at the eyes, which is the part of the face people typically focus on when talking and interacting with someone. People with PWS by UPD spent more time looking at the nose/mouth region. 

Processing Voices and Sounds

In another study, Debladis et al. examined processing of voices and sounds and found that adults with PWS had significantly greater difficulty in this area compared to typically developing people. Specifically,  people with PWS had greater difficulty identifying non-voice sounds, and those with the UPD subtype had greater challenges identifying voices than those with the deletion subtype. However, all of the people with PWS, regardless of subtype, struggled with voice and sound processing compared to typical controls with slower processing times. 

These recent studies highlight differences in the way people with PWS process incoming social information both visually and auditorily. Difficulty processing vocal and facial expressions of emotion has a direct impact on the ability to succeed in the social arena. These studies highlight potential targets for the development of new interventions focused on improving social connections for those with PWS. 

New studies highlight potential targets for the development of new interventions focused on improving the social connections for teens and adults with PWS.

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An additional recent research study in this area explored a social skills intervention for teens and young adults with PWS. This research group at Vanderbilt conducted an online virtual social skills intervention using an evidence-based curriculum modified specially for PWS. For the study, small groups of people with PWS met (via Zoom) with a facilitator several times per week for 10 weeks. Preliminary results indicate that social skills can be improved using a curriculum that focuses on interpreting facial cues to others’ emotions and intentions and encourages appropriate social interactions among group members with real-time feedback during the sessions. Homework, repetition, and practice of skills between sessions appeared to be crucial for learning these social skills. 

The study’s findings included the following: 

  • Participants had improved overall social function and fewer behavior problems as rated by parents and study investigators. 
  • Parents also anecdotally reported noticing their children using calming techniques learned in groups to help manage emotions in day-to-day situations. 
  • An important aspect for group participants was the ability to connect with other teens and adults with similar struggles in a safe group environment where challenges, as well as strengths, could be targeted. 

Target Areas for Social Interactions in Teens and Adults with PWS

  1. Review the suggestions in the section above for younger people with PWS. Many will still be helpful for older people. Some of these interventions may be more successful in teens or young adults because they will likely have greater cognitive capacity, which may allow them to better benefit from interventions and social skills supports. 
  2. You can give your child reminders or cues to look at the whole face or look into the eyes, which might help them better understand what the other person is feeling. You could play games or look for online resources to help your loved one to more accurately interpret emotions in facial expressions (see ideas above). This is a skill to continue to work on. 
  3. Applied behavior analysis (ABA) therapy may still be helpful for older people with PWS to address social skills challenges with the goals of building and practicing social skills and teaching emotional regulation skills. This can be a good vehicle to help people learn to more accurately read social cues, emotions, and others’ intentions. This is a good target for intervention given the research discussed above regarding challenges in these areas. 
  4. Potentially related to the challenge of misinterpreting others’ intentions, teens and adults with PWS may behave in ways that reflect feelings of being easily slighted. As a result, they may be quick to become frustrated or angry and to take things personally. This is likely related to findings in the recent studies cited above regarding difficulty understanding faces, interpreting others’ intentions, and processing voices and sounds. These can all be areas to target in ABA or other behavioral social skills interventions. 
  5. People with PWS are generally highly socially motivated but have a harder time learning by watching others’ social interactions, which is the way most typically developing kids learn social skills. Structure is helpful to anchor social activities, even for teens and young adults with PWS (e.g., play a game or do a craft or puzzle together rather than “sit and chat”). At this age, it is also very important to be clear and concrete about norms for social behavior for this age group. Build in accountability, especially that which relates to technology (people your age do not text their friend 25 times without a response; e.g., “the rule is text 1 or 2 times then wait for them to respond”). This blog and video on PWS and internet technology has more tips about helping those with PWS to be successful but also safe in the world of technology.

We gratefully acknowledge the contributions of Anastasia Dimitropoulos PhD and Elizabeth Roof MA for their input on this project.

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