People with PWS have a set of behaviours which are so characteristic of the syndrome they are known as a behavioural phenotype. Most are linked to the hypothalamic dysfunction and/or cognitive problems. However, these behavioural challenges vary considerably in mildness and severity from person to person, and over time and circumstances. Behaviours shown by toddlers and very young children are usually very similar to those who do not have PWS.
The following links are sections from the PWS Journey.  Families can obtain a hard copy of the whole PWS Journey,  which is updated as their child reaches the next age range, by becoming a member of PWSA UK

Behaviour Management


Skin-picking is common in PWS – about 70% of people display this behaviour at one time or another. It is thought to be a coping strategy on the part of the person.  It may be mild or severe and may not happen all of the time. For tips on how to manage this, see the behaviour management links above. Also:

Skin-picking in people with Prader-Willi syndrome (IPWSO Famcare) 

Challenging behaviour in PWS

Behaviour can become aggressive or violent, although this does not manifest in everyone with PWS, and may be a response to external pressures and stress. The following information may be helpful in understanding and managing this type of behaviour.

Others source of information about behaviour management

Managing a Meltdown (IPWSO Famcare) 

Coping with Change  (IPWSO Famcare) 

Confabulation (Story- telling) (IPWSO Famcare) 

Strength in Boundaries (IPWSO Famcare)

Understanding and reducing problematic behaviours in persons with Prader Willi syndrome - Dr. Kate Woodcock (Frambu Centre, Norway)


Contact Us

If your son or daughter is displaying severe or unusual behaviours or if you have a question about behaviour, please contact us.