Anxiety and Williams Syndrome

Many individuals with Williams syndrome have anxiety that may begin in childhood and last through adulthood. Some have anticipatory anxiety, or fear of what “may” happen. They can fixate on topics or situations that cause them anxiety and worry about people or situations that may occur.

The use of social stories can be used to discuss future occurrences and “tell a story” about what is going to happen. These can be personalized to include pictures of the child, pictures of places or sources of anxiety. This will allow the child to talk about his or her fears and the source of their anxiety and provide a sense of familiarity with the situation, event or place. Ask your child to “read” the story to you and it may provide a calming effect for them.

Allow him or her to see the source of anxiety. If your child becomes anxious about the fire alarm at school, allow him or her to go “see” the fire alarm and ask the school to allow him or her to watch as the fire alarm is pulled. This allows for the child to become more familiar with the source of anxiety and can have a calming, comforting effect. If you child fears vacuum cleaners or lawn mowers, as is common with many children with Williams syndrome; you can set up a situation where the child can see the vacuum or the lawn mower, then progressively work slowly towards the steps of completely having the child interact with the source of anxiety.

It is sometimes best not to talk too much into the future with your child. The anticipatory anxiety can be overwhelming for them. Individuals with Williams Syndrome tend to fixate on favorite or positive upcoming events and this can lead to unnecessary anxiety. This can also cause difficulty if plans need to change and the upcoming event does not occur as originally planned.

As with any child, you will learn what works best for him or her.

The following are triggers that we commonly see in individuals with Williams syndrome:

• Changes in schedule, routines, or expectations
• Anticipation of upcoming events
• Sensory overload (excessive noise, lights, smells, etc.)
• Fixations, fears and phobias
• Worry about upcoming events
• Worry about upcoming social situations
• Taking away or being away from a preferred interest
• Not being allowed to engage in repetitive behaviors

The following is a list of the ways that anxiety commonly presents itself in Williams syndrome:

• Increase in repetitive and sensory seeking behaviors
• Increase in challenging behavior
• Separation anxiety (particularly from parents)
• Perseveration of topics
• Difficulty modulating emotions

Few children with Williams syndrome are intentionally “bad.” Some may have difficult and unexpected behaviors. Each child is different, and knowing your own child is key to taking action. Is your child extra-sensitive to sound and other sensory input? Does he or she need lots of sensory input, or perhaps limited sensory input? What causes anxiety one day, may have absolutely no effect on your child the next day. The more you know, the easier it is to find answers or adapt to a situation.

Your typical child may have been able to sit still through a full dinner hour. But that’s not a reasonable expectation for some children with Williams syndrome. Consider starting with a smaller goal– sitting still for ten minutes, eating with a fork, or whatever you think he or she can handle– and building toward the larger goal of sitting through a full meal.

Safety is key. And for children with Williams syndrome, creating a safe environment can be a challenge. Since so many of your child’s behaviors may have the potential to be dangerous, it’s important to take precautions such as bolting shelves to the walls and floor, putting a dead bolt on the front door, and latching cabinets securely. Children may be fascinated with the lawn mowers outside and attempt to leave the house to discover them. Know the safety concerns and take appropriate precautions.

Many children with Williams syndrome either crave or over-respond to sensory input. Some alternate between the two extremes. Very often, “bad” behavior is actually a reaction to too much or too little sensory input. By carefully observing your child, you may be able to figure out what’s setting him off. It may be a certain sound frequency, interruption of a routine or an inability to explore their source of fixation.

To learn more about Williams syndrome, go to www.wschanginglives.org.