Behavioural differences are common in Angelman syndrome, but they vary widely between individuals and can change over time. While people with Angelman syndrome share some common features, no two children or adults experience behaviour in the same way.
Many behaviours are closely linked to communication challenges, sensory differences, fatigue, pain, or difficulty regulating emotions. When someone has limited ways to express discomfort, frustration, or needs, behaviour can become a key form of communication. In some cases, a person may even appear settled or happy while experiencing discomfort.
Families may notice things such as:
Increased excitability, restlessness, or hyperactivity
Anxiety or distress, particularly in unfamiliar or overstimulating environments
Repetitive movements (such as hand flapping)
Changes in behaviour linked to sleep disruption, illness, pain, or transitions
Strong emotional responses, including laughter or distress that may seem out of context
Because behaviour is often communicating something, some families find it helpful to briefly note what is happening before, during, and after an episode of distress or behavioural change. This is sometimes referred to as an ABC approach (Antecedents, Behaviour, Consequences).
We’ve created an ABC Observation Worksheet that families can use if they find it helpful. Used simply as an observation tool, it can help identify patterns and provide useful information to share with healthcare or allied health professionals.
Support for behavioural concerns is usually most helpful when it is individualised and considers the person’s health, communication, environment, and supports.
asNavigators nurses can support families by providing general information, helping organise observations, and assisting families to prepare for discussions or referrals with their healthcare team.
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