Back in the early 1990s, we began to write a single chapter to be included in a reference work on Williams syndrome. Initially, we focused on responses to our parent questionnaires on the behavioral characteristics of children with Williams syndrome, the related literature, and interventions appropriate for children with this condition in the areas of language, perceptual-motor performance, aptitudes, maladaptive behaviors, and academic skills.
Over the past decade, our venture underwent one metamorphosis after another as we continued on our own personal odyssey toward “Understanding Williams Syndrome. ” One chapter became several and then an entire book, reflecting many of the major developments in the field of Williams syndrome. These include the emergence of significant topics, issues, and trends; identification of various problems and skills of individuals with Williams syndrome within each survey area; and the complex interaction between research and clinical practice.
Generally, progress begins with observations and comments by parents, teachers, other professionals and researchers that lead to the development of laboratory studies, testing procedures, and relevant interventions. This is epitomized in the enormous effort exerted to determine the level of ability displayed in the various components of language by children with Williams syndrome. Such findings suggested new ways to help them. Discovery of their narrative talents and love of performing led us to use storytelling, puppetry, and improvisation as psycho-educational techniques for the teaching of social skills. The receptiveness of many children with Williams syndrome to verbal reasoning and explanations inspired us to introduce “problem analysis” as an intervention strategy, especially in the area of maladaptive behavior. Their grasp of semantic relatedness influenced our use of association cues and simple metaphors as learning tools; their language and memory skills convinced us early on that self-talk is a very potent form of verbal mediation and behavioral control.
The “empathy” of individuals with Williams syndrome is another cogent example of how observations and parent reports, including responses to one item in our Utah Survey, have been extended by laboratory studies of empathy, as well as ways of channeling such sensitivities into adaptive kinds of behavior.
The saga of musicality provides a classic example of these connections between research and practice. Initial reports concerning the musical interests and talents of individuals with Williams syndrome were crucial to efforts to provide opportunities for the development and recognition of their musical skills. These efforts, in turn, led to laboratory studies examining such abilities as absolute pitch,