Question:
Male, 15 years old, unknown subtype
Hi there, Nurse Lynn. I have to ask this question; my son is 15 and he is constantly masturbating! I mean, I know teenage boys do this. It just seems an extreme. Should I be worried?
Nurse Lynn’s Response:
Obsessive-compulsive-like tendencies are common in individuals with PWS. These behaviors often stem from the cognitive and emotional profile associated with PWS and can manifest as repetitive behaviors, rigid thinking, and difficulty adjusting to changes.
As you stated, he is a teenage boy and, “extreme” can be subjective. However, consideration should be given to how this effects daily activities, social boundaries, and building healthy relationships both currently and in the future. There have been instances where people have gotten into trouble with the law or injured themselves, which is something we want to avoid.
Managing chronic masturbation or excessive sexual behaviors in individuals with PWS requires a thoughtful, compassionate, and structured approach. These behaviors may arise due to impulsivity, cognitive challenges, or difficulties with emotional regulation, rather than an increase in libido.
Here are some strategies to provide education and understanding
- *Reinforce the concept of privacy and how this aligns with social norms.
*Appropriate sexual education using language that is clear and non-judgmental. - *Set expectations such as this is something done only in your room with the door closed.
- *Consider the underlying triggers which could be boredom, frustration, stress or anxiety.
- *Monitor/supervise social media exposure for content that may inadvertently encourage inappropriate behaviors.
- *Encourage substitutions like exercise or engaging in other hobbies.
- *Teach skills for building respectful, healthy relationships as they mature.
- *Gradually teach self-monitoring and decision-making skills to help them develop autonomy while maintaining safety and boundaries.
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Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.