Prader–Willi Syndrome (PWS) is a medical condition that affects both males and females, and will affect them all their lives. People with PWS have an obsession with food and eating, low muscle tone & balance, learning difficulties, lack of normal sexual development, emotional instability and lack of maturity. PWS is a genetic disorder and in 99% of cases is not inherited.

Every person with PWS is an individual and not every person affected will have all characteristics.

Some common characteristics are:

  • the compulsion to eat and an obsession for food, leading to serious weight gain, if the diet is not managed.
  • changes in behavior as the child gets older, including, tantrums, stubbornness and mood swings.
  • poor social and emotional skills.
  • skin scratching and picking.

Programming Considerations

  • Be aware of each individual's capabilities.
  • Ask what support is required - do not assume without asking.
  • Remain aware of the planning and delivery of activities that include food.

Behaviour Management Issues

  • Be aware of what stresses and triggers can bring on a tantrum, aggression, skin scratching or picking and self-injury.
  • Where possible, maintain an individual’s routine.
  • Never leave the person alone with food.
  • Follow parents/carers guidelines for controlling food intake and punishment for taking food is not appropriate.

Further information

Prader-Willi Syndrome Association of Australia – www.pws.org.au

Prader-Willi Research Foundation of Australia-  www.praderwilli.org.au