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GeneticaLens - Future Projects

THE AUTISM PROJECT
Communication Deficits in Autism: A GeneticaLens Database Participants: Catherine McClain, MD, MPT, Developmental Pediatrician, Director of the CDD Associate Professor, UNM Department of Pediatrics; Chief of Development and Disability, UNM Department of Pediatrics; Medical Director of the Autism Diagnostic Clinic, The Center for Development and Disability, University of New Mexico School of Medicine, Albuquerque, NM. Pat Osbourn, MA, CCC, CED, Director, CDD Neurodevelopmental Division; Director, CDD Autism Diagnostic Clinic, The Center for Development and Disability, University of New Mexico School of Medicine, Albuquerque, NM and Louise Tiranoff Productions, Brooklyn, New York.

Background: While there is agreement on the general terms used to describe the behavioral differences in autism, unless one has worked with many children with this diagnosis, understanding the behavioral manifestation of specific terms is difficult. Observational data on Autism Spectrum Disorder (ASD) would be a useful teaching tool because of the broad range of behaviors seen in this disorder. GeneticaLens, a comprehensive database of video, textual, and photographic data, will greatly facilitate the diagnosis of, and improve the understanding of communication deficits seen in ASD. As an information system, GeneticaLens links text description of behaviors to motion pictures. The visual database developed through this project will aid educators in teaching others about the various communication behaviors seen in children with ASD.

Aims: The specific aims of this project are 1) to establish a CD-ROM, video database of observable communicative behaviors in children with ASD and to compare these behaviors with age matched children with typical development, Down syndrome, Angelman syndrome and other communication disorders and 2) to field test the use of the video database in teaching professionals such as pediatricians, speech-language pathologists, psychologists and others to recognize observable communicative behaviors in children with ASD and to be able to distinguish them from other disorders.

Activities: While there is much written on the communication behaviors in people with autism, there is little available that connects these text descriptions with the visually observable expression of these behaviors. We propose to address this by filming individuals with ASD of different ages and backgrounds in a wide range of settings and contexts. These films will then be catalogued, sorted and edited according to the GeneticaLens "template" established in the making of The Angelman Project, so that there is clear understanding of the relationship of the motion picture to a set of descriptive terms, on which experts in ASD agree. Through the use of moving images, The Angelman Project demonstrated many aspects of communication such as "receptive communication skills", that are difficult, if not impossible, to explain with the use of text alone. (See examples)

Long Term Goal: This pilot project will be part of a much larger project. The long term goal is to provide a significant decision support tool for healthcare professionals, researchers, and therapists by developing a web-based, easily accessible, video database addressing issues in ASD ranging from diagnosis, intervention and educational strategies to integration into the community.

Funding: We have applied to the National Alliance for Autism Research (NAAR) for funding. As yet, no funding has been received. Last Updated August 20, 2002.

If you are interested in getting involved in this project or would like to find out more, Contact Us

Also, read about our Pilot Study Initiated To Create the Groundwork for an Angelman profile within the Autism assessment using "GeneticaLens."

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