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

5 – 10 years     10 – 13 years     13 – 18 years     18 – 25 years     25 – 40 years     40+ years


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) 

Aggressive and violent behaviour

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.

Aggressive behaviour in PWS

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)

Parenting Skills Workshop - 12th October 2017

A great opportunity for parents of children with PWS to learn about successfully supporting your child’s development through positive dietary management and communication. The day will also be of interest to teachers, respite carers and others who work with children with PWS on a regular basis.

Programme for the day

Booking form

Special Topic Day on Behaviour Management for Adults – July 2017

Prof Tony Holland – The Underlying Reasons for Behavioural Challenges in PWS

Laura Brame – Managing Anxiety and Aggression

Emily Marambakuyana – Managing Lifestyle Changes

PWSA UK Support Staff Team – Quick Tips on Behaviour Management

Contact us

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