Behaviour Management Strategies
1. REMEMBER THE 4C’S: BE CALM, CONSISTENT AND CLEAR – AND AVOID CONFRONTATION
Create a calm environment: People with PWS can be ‘hyper-reactive’. The best environment for someone with PWS may be one where everyone responds calmly and one that is not too busy or noisy. (It is known that some people with PWS may have heightened sensitivities to sound, smell or touch.) Always speak calmly – your tone of voice is often more critical than the words used. Slow down your instructions – remember many people with PWS have a processing delay. Allow plenty of time to transition from one activity to the next.
Use consistent and clear rules and routines: People with PWS have a preference for routine. Visual supports and schedules are very helpful because predictability reduces anxiety. In general, people with PWS are also rule followers. Rules provide understanding for what is expected and how to behave. Rules and routines lower anxiety. If changes to rules and routines are necessary, it is important to provide advance warning and allow extra time for processing these. If the person with PWS has concerns, be sympathetic and check their understanding, but be consistent and do not give in to demands.
People with PWS can appear to have a greater level of understanding than they actually do. Always use clear, literal language and ask questions to check on their understanding about what is happening next and what is required of them. An increase in repetitive questions or perseverating on a topic are signs that anxiety levels are raised, perhaps due to uncertainty or confusion. Answer questions specifically to provide reassurance, but once understanding is checked, limit questions and redirect thoughts.
Avoid confrontation: Try to avoid using “no” and rephrase in the positive instead, e.g. “We can go to the park tomorrow,” rather than, “No, we can’t go to the park now.” When disappointment, anxiety or frustration lead to outbursts or non-compliant behaviour, don’t tell them to calm down or attempt to talk them out of it. Instead, show empathy for their feelings and try to meet them halfway, e.g.“You’re upset. I can see how you might feel it’s unfair.” Offering the person a limited number of choices may also help them to recover a sense of control. But do not engage in a power struggle. Just keep restating and explaining what needs to happen in a clear, low key, matter of fact way, and allow the individual lots of time and space to process and work through their initial oppositional reaction. Ignoring unwanted behaviours as much as possible and responding to escalation in a calm, indifferent manner is helpful because this helps keep anxiety low. This approach takes considerable time and effort on the part of the carer, and may seem as though you’re letting the person get away with behaving poorly at times. It’s worth keeping in mind that people with PWS cannot simply learn to manage their emotions, and most individuals will always need external supports in times of stress.
2. USE POSITIVE BEHAVIOUR MANAGEMENT
People with PWS usually respond well to positive reinforcement of desired behaviour. This may be as simple as verbal praise, or scheduling a less preferred activity and asking for it to be completed prior to a preferred one. It may involve earning rewards using a token system. Punishment does not serve to teach a person with PWS what behaviour is required, and instead usually escalates unwanted behaviours and creates a meltdown.
3. USE THE PRINCIPLES OF FOOD SECURITY
The quality and type of food a person with PWS eats can affect their behaviour. In general, a diet that is low in sugar and processed foods is best. Sweet foods have been shown to be highly rewarding for people with PWS, even more so than a typical person, and may drive obsessive thoughts and behaviours more than other foods. Many individuals do better on a lower carbohydrate diet. However, even with an excellent diet, most people with PWS will always be hungry and a preoccupation with accessing food can lead to anxiety and behavioural issues.
In order to reduce anxiety about how and when food will be obtained, people with PWS need ‘Food Security’. Food Security is a concept coined by PWS specialists Linda Gourash, MD and Janice Forster, MD, from the Pittsburgh Partnership. It consists of the following 3 principles: