"Managing a Meltdown" in People with Prader-Willi syndrome


Most people with Prader-Willi Syndrome (PWS) have meltdowns from time to time. This varies from person to person and is a serious problem for those families affected. The levels of anxiety seen in people with PWS cannot be understated. Most of the difficult, anti social behaviour demonstrated by people with PWS can be related to their inability to express and/or deal with anxiety or emotions they are feeling. They can be upset by something we would just take for granted, or it could be over something that occurred yesterday or last week, as well as something that may have just occurred but has not yet even acknowledged by others. It is often “either all or nothing”. They may become highly anxious about a particular meal being served slightly differently and they may show minimal emotion when a family member dies. Preparing them for outings or events is a key strategy for addressing potential anxiety.

People with PWS think differently! They take longer to process information they are given and may become confused when given too much information at the same time. They can present as stubborn or oppositional when really they are just taking time to 1) understand the information they have received and 2) respond with an appropriate response. If they do not like what they are hearing they may not be able to express this fact, but will instead “act out” the anxiety they are experiencing.