Understanding Williams Syndrome: Behavioral Patterns and Interventions

Understanding Williams Syndrome: Behavioral Patterns and Interventions

Understanding Williams Syndrome: Behavioral Patterns and Interventions

Understanding Williams Syndrome: Behavioral Patterns and Interventions


In the last 20 years, Williams syndrome has captured the interest of large numbers of scientists and attracted considerable media attention in spite of its rarity (estimated at no more than one in 30,000 births). Those diagnosed display a unique pattern of behavioral, cognitive, and physical limitations and strengths with fascinating neurogenetic implications-a pattern that poses enormous challenges to their parents and caregivers. The authors, a specialist in learning disabilities and a developmental psychologist, review basic information about Williams syndrome, its medical conditions, paradoxical profile, and neurobiological mechanisms; and discuss distinctive features of the language and perceptual and motor performance of children and adults with the syndrome. Offering strategies for building on the first and dealing with the second, they describe typical aptitudes, such as social skills, curiosity, memory, and musicality; and behavioral problems, such as fears and anxieties, distractibility, impulsivity, poor adaptability, low frustration tolerance, and atypical activity. They examine differences between Williams syndrome and other developmental disorders, such as Down syndrome, Fragile X, Prader-Willi, ADHD, and autism, and similarities in its symptoms to those of anxiety disorder, simple phobias, obsessive-compulsive disorder, and depression. They organize their problem-specific alternatives for treatment into five major categories, and summarize important points about characteristics and interventions in numerous helpful tables. Finally, they consider promising new directions for research, clinical intervention, education, and systems for care delivery. Throughout, they stress variations among individuals and subgroups in ability level, skills, talents, and problem severity; and emphasize the necessity of recognizing these components in planning treatment on an individual basis. Comprehensive and readable, Understanding Williams Syndrome: Behavioral Patterns and Interventions is an essential guide for all those professionally, scientifically, or personally involved with this so frequently misunderstood and underserved population-psychologists, psychiatrists, social workers, and other mental health professionals; special educators, and vocational counselors; speech-language, physical, and occupational therapists; audiologists; physicians; and parents.


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 . . .

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