The evolution of a communication tool: Autism Spectrum Disorders Risk Alert (ASDRA). A case study of GeneticaLens

This thesis is a case study describing the efforts of a team of media producers and medical experts to develop a new communications tool: Autism Spectrum Disorders Risk Alert (ASDRA). ASDRA integrates digital technologies with diagnostic descriptive categories to create a video intensive, highly interactive, web-accessible tool that will enable pediatric practitioners worldwide to quickly identify the risk indicators of Autism Spectrum Disorders (ASD). The need is documented: Families of children with autism and other rare developmental disorders spend months, even years, searching for a diagnosis - time that should be devoted to therapies. The prototype for ASDRA is The Angelman Project, a system of video documentaries and clips on the rare disorder Angelman syndrome (AS). Originally intended to help families desperately in need of information on AS, the Angelman Project used video to bring the static, written descriptions in the medical manuals to life and demonstrated the limitations of the traditional tools used in diagnosing rare developmental disorders. Text-descriptions fall far short in assisting health care providers to identify the myriad combinations of symptoms and behaviors found in rare developmental disorders (of which there are over 5,000) and behaviorally based disorders (which have a wide range of often-subtle symptomatic behaviors, such as autism). The thesis describes how a multi-disciplinary group, including doctors, scientists, media/technology specialists, and parents came together to develop a better diagnostic tool for AS - documentary videos and short, expert-coded behavioral clips from which a general practitioner could actually SEE the appearance and behaviors that characterize rare and not often seen disorders. Further, the thesis captures the newly evolving reality that families of children with rare and developmental disorders are continually assuming much more responsibility for healthcare research. Far from being passive, families of children with AS provided the data that experts used to develop the diagnostic criteria for the syndrome. The thesis also describes the systems created in the Angelman Project for filming, editing, retrieval on demand and database building that are now being applied to autism, a disorder that is even more complex, more difficult to diagnose and far more prevalent than Angelman syndrome