The diagnosis of autism spectrum disorders in the US: Trends and family experiences
by Kozub, Mary L., Ph.D., INDIANA UNIVERSITY, 2008, 205 pages; 3319917

Abstract:

The recent rapid increase in the prevalence of autism spectrum disorders (ASD) has brought the issue of autism into public awareness. Autism, once considered rare, has recently been estimated to occur in one in 150 American children. The effect of autism on families can be devastating. Parents experience feelings of loss coupled with social stigma, isolation and difficulty in finding, obtaining and financing services. The inclusion of a child with a disability such as autism is a challenge to family routines and resources, as well as public identity and the negotiation of power. This study describes trends in resource utilization and parent perceptions of obtaining a diagnosis of ASD. A mixed methodology approach was applied, which utilized an online questionnaire to gather information on trends in use, availability of resources and parent satisfaction; and interviews, to gain an understanding of the parent perspective of diagnosis, including their appraisal of the services they received. Results of the initial questionnaire indicate that parents utilized those services which they considered to be resources for autism evaluation, including educational, county and clinical services, often in combination. Parent reports of services utilized and their perceptions of the diagnosis process were consistent across socioeconomic levels for the participant population. The interviews revealed a wide range of experiences which included family perceptions, diagnostic procedures and support as key themes. Parents critiqued services they received and provided suggestions for improvement in the procedures of autism diagnosis. Kleinman's explanatory model provided the framework for the analysis of the parents' perceptions through the description of the meanings they applied to their experiences. The contributions of this study include the addition of the meaning of autism through the lens of support, provided to the parents by professionals, systems and key others, as well as parents' provision of support to each other. Further, the analysis of the meaning of support is used to describe a strong network of resources and support developed by parents, which could serve as a model for professionals who work with families affected by ASDs.

 
AdviserSarah D. Phillips
SchoolINDIANA UNIVERSITY
SourceDAI/A 69-08, p. , Nov 2008
Source TypeDissertation
SubjectsCultural anthropology; Special education
Publication Number3319917
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