Disseminating information to families of children living with autism

Abstract

Autism Spectrum Disorder (ASD) is a complex neuro-developmental disorder that severely compromises functioning in multiple developmental domains (Rogers et al., 2006). Children with ASD often show deficits in the social domain (McClellan & Katz, 1992; Webster, Feiler, & Webster, 2003). Many children with ASD lack emotion regulation, and other key social skills related to social competence. There are a variety of sources of information available for families who have children with ASD. However, the information is typically not easily comprehensible for all populations. The presentation of the information is typically not sequential, and does not focus on all pertinent areas (e.g. deficits of autism, services available, how to obtain services, descriptions of research). Further, families with children with ASD often report that they feel isolated (Thomas, Morrissey, & McLaurin, 2007). The current project was therefore designed to provide families who have children with autism with a simple but informative web-based source of information about ASD, treatment options, and local resources for treatment and evaluation. The authors consulted several sources in order to develop the website. First, the authors conducted a literature search on ASD and ASD treatment options and effectiveness. Next, a needs assessment with families of children with ASD was conducted to reveal gaps in parents’ knowledge. Finally, the authors conducted a search of existing web-based information for families, including a search of local agencies and services for children and families. The information gathered from these sources was posted on an informational website, which was then evaluated by families of children with ASD in terms of usefulness and ease of use. Results of the web site evaluation revealed that the families found the web site to be concise, comprehensive, and helpful. Recommendations are made for future use of web site technology to assist families with ASD. The two authors collaborated on this web site project. Jacquelyn Peterson’s primary responsibilities included technical elements of webpage development and content on social competence. Janette Vernali’s primary responsibilities included providing content on emotion regulation, behavior regulation, in addition to reviewing and editing the webpage and links. Each author contributed to web site content on individual therapies, and collaboratively wrote this project document.