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Relationships and PWS

This survey delves into the dynamics of relationships involving individuals with Prader-Willi Syndrome (PWS), addressing challenges and offering insights. It emphasizes the importance of empathy, understanding, and skill-building in fostering healthy relationships for individuals with PWS. The discussion covers topics such as the impact of cognitive impairments on relationship skills, the role of families and providers in relationship encouragement, and the distinction between biological and developmental age in forming relationships. Engaging questions prompt reflection on promoting friendships, navigating sexuality, and supporting individuals with PWS in relationship matters.

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Relationships and PWS

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  1. Relationships and PWS Patrice Carroll, MSW Amy McTighe, Ph.D

  2. Survey of the audience… • How many people have a teenager with PWS? • How many people have a loved one that is over 18 with PWS? • How many people have a person with PWS that has a girlfriend or a boyfriend? • How many people have a person with PWS that has full understanding of what an “intimate relationship” means? • How many people have a person with PWS that talks frequently about starting a family? • How many people have a person with PWS that has frequent “drama” in relationships with the same and/or opposite sex?

  3. Human Relationships • All human beings are wired to pursue and form meaningful relationships • This is not different for persons with PWS! • Having a good understanding of a relationship makes a difference. • Having a “baseline” of the understanding of what a relationship (intimate and platonic) means for a person with PWS is the key to success. • Understanding the difference between meaningful behavior and “PWS behavior” when dealing with relationships is also key!

  4. What do people with PWS think about relationships?

  5. Key question • Healthy relationships are a key factor in living a quality life. • Disruptions in appropriate social skills, cognitive impairments and challenges in day to day living can impact a persons ability to form and keep relationships. • Is a person less deserving of meaningful relationships simply because they need more support in creating and keeping them or should we, as family and caregivers, work to create an environment where relationships skills can be learned and improved upon with practice and support?

  6. Development and emerging sexuality • Early adolescence and the role of hormones • Sexual development vs. emotional development • Maintaining a healthy relationship through developmental stages

  7. From the beginning… • Teach accountability from the start • Each family member is equally as important as the other. Needs of siblings are different but equal. • Repairs teach empathy and relationship building- use them!

  8. When a good thing goes bad… • Stalking • Fantasy relationships • False accusations • Lack of personal boundaries • Lack of personal accountability

  9. Questions to answer: • How can we best encourage friendships and what skills are needed? • Should people diagnosed with PWS engage in sexual relationships? • What role do families and providers play in encouraging, teaching and/or discouraging individuals to have intimate relationships? • What about the difference between biological age and developmental age? • How do we best teach the skills needed for safe sexual encounters? • Do we, as family members and providers have a role in choosing partners, starting or ending relationships?

  10. Questions and Resources

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