Tip of the Week: Supporting safe social media use

How to support safe social media use for individuals with Prader-Willi syndrome: “SOCIAL MEDIA”

Access to the internet is considered a human right, and when monitored can be a helpful life tool. Just as with any new experience, it is crucial to prepare the person with PWS to ensure a safe and helpful experience. People with PWS are vulnerable to victimization and manipulation and therefore should be monitored while using social media. Over time, monitoring can decrease as self-preservation skills are attained and utilized. There is no escaping the presence of social media in our world today. Social media has replaced many of the traditional forms of communication between family and friends and allows for in-the-moment connections that we may not have otherwise. If used as simply a communication tool between known persons, social media can be an effective and important tool. But what happens when it is not used solely between family and friends and someone falls into the abyss of unknowns, strangers, and obscurities? The person with PWS is especially susceptible to exploitation and manipulation in the world of social media and at the same time, it can be a resource to fight loneliness and isolation if used properly. How do we teach safe online practices? How do we teach someone to recognize ill intent? “SOCIAL MEDIA”:

S – Suggest appropriate websites and platforms. Certain platforms are safer than others. Research the platforms that the person in your life with PWS is using and make sure they are appropriate.

O – Opportunities are endless and opportunistic people are out there. There are many people online who do not have the best interest in mind of the person in your life with PWS. Know that often times an individual with PWS will love the attention he or she gets from his or her online “friends.” In the past, we have heard of examples in which:

  • Food seeking: someone online will offer to bring food to someone’s house. This enables them to get personal information, such as the house address.

  • Sexual attention: someone online will ask to meet up at a designated location in hopes for an inappropriate encounter. This creates an immediate risk.

  • Friendship: While social media can be a great resource in order to make friends with common interests, the most important thing is the interests are an appropriate commonality between the two.

C – Communicate safely. Talk to the person in your life with PWS about what information is “personal” and what information is okay to discuss with others. For example, nobody should be giving our personal addresses, last names, social security numbers, bank numbers, and locations, or anything that can be used in an online search to dig for more information.

I – Involve the person with PWS in conversations about safe social media use. In order for all parties to be on the same page about safe social media use, it is critical to have a group discussion. This involves anyone who will be interacting with the person online during social media times, for example, a grandparent or day-program staff.

A – Adjust internet settings. As the “owner” of internet access, you can adjust what sites are off limits and block them. Talk to your internet provider about which sites you want blocked. Many of the new internet providers also enable you to provide time frames in which internet is accessible. Create a schedule so that someone is not online all day, every day.

L – Learn passwords. Talk to the person in your life about a safe password. Know this password so you can gain access to social media sites in the event of an emergency. You may also be able to link accounts for certain sites.

M – Media can be dangerous. The internet allows us an endless amount of information. Not all the information is appropriate or safe.

E – Entertainment websites can lead to other inappropriate platforms. Often times advertisements on social media

sites, or pop-ups, can click-through to sites that may otherwise not be blocked. Block all pop-ups on your internet platforms and make sure to keep an eye out during social media use times.

D – Demonstrate safe social media use. Lead by example.

I – Inappropriate conversations can lead to inappropriate meetings.

A – Anonymity can be dangerous. Online people are simply identified by screen names. This can lead to mean or inappropriate things being said that can cause pain and anxiety. Know that instances such as this may occur, and have a plan for how to talk to the person with PWS about their value, and the inherent anonymity of the internet.


Patrice Carroll, Latham Centers’ Director of PWS Services, is world-renowned for her Prader-Willi syndrome expertise. She works with Latham students and residents, their families, and other experts, continuously learning and teaching about PWS best practices. If you have PWS-related questions, we invite you to email TipTopics@LathamCenters.org.

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