Genetic Counseling Program

Untitled Document

Characterization of Preoccupations in Children with Williams syndrome. By Christine McPhillips

A survey was conducted through the national Williams Syndrome Association to learn more about the nature of the preoccupations in children ages three to eighteen. The survey focused on preoccupations that have been previously reported in the literature and in anecdotal accounts. When a parent indicated a preoccupation was present, they were then asked a series of follow-up questions concerning the onset and duration of the preoccupation, the severity, whether the child had ever been afraid of the item, the level of parental concern due to the preoccupation, and the sensory systems involved. In this study, 97% of respondents reported at least one preoccupation. On average a child had 8.6 preoccupations. All items queried were endorsed by at least one parent. A variety of items were among the most common including people familiar to the child, lawn equipment and fire trucks. The average age that preoccupations started was 4.2 years. Only 17.2% of preoccupations were reported to have ended. Of those, the average age for a preoccupation to end was 7.1 years. Children with ADD or ADHD were had more preoccupations on average than children without this diagnosis. Approximately 29% of preoccupations were reported to have involved fear at one time. The majority of preoccupations were reported to be mildly disruptive or not disruptive to the child's routine. Approximately 25% were reportedly moderately or very disruptive. Most (88%) were not concerning or were mildly concerning for the child's safety. Also, 8.1% of preoccupations had caused an injury, although all injuries described were minor. This information may be important for anticipatory guidance for families of children with Williams syndrome.

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