Date of Award

2014-08-14

Degree Name

PhD Leadership Studies

Dissertation Committee

Lea A. Hubbard, PhD; Anne M. Donnellan, PhD; Steven A. Gelb, PhD

Keywords

Autism advocacy and research organizations, Autism Spectrum Disorders--ASDs, comparative study, efficacy, Leadership studies, mixed methods study, quantitative, self-evaluations, support services, young adults

Abstract

Autism has been prominently featured in the news headlines of the Western world for well over 30 years. A reported rise in the incidence of autism has sparked a corresponding increase of interest in research, treatment modalities, and political considerations related to Autism Spectrum Disorders (ASDs). The first autism organization in the United States, the National Society for Autistic Children, currently the Autism Society of America, was founded in 1965, devoted to autism research, resources, and services; the dissemination of information; and support and advocacy. Organizations devoted to autism research, resources and services, the dissemination of information, support and advocacy have since multiplied. Despite a proliferation of these similar organizations, little research has examined their effectiveness. Particularly scarce are studies on the usefulness of organizations to the young adult population with ASDs. For this study, young adults are defined as those having exited from secondary education and roughly inclusive of ages 18–29. This current age group was affected by the 2006 law mandating transition services to post-school options that commence at age 14. The present study used a mixed methods approach to evaluate service organizations and assess their efficacy to fulfill their mission statements with regard to the target population. This study consisted of an online quantitative survey, followed by qualitative case studies of six purposively selected organizations that provide autism research, advocacy, and service. The process of organizational self-evaluation and the quantity and quality of services provided, as reported by young adults with ASDs and their families, was the initial focus. Organizational self-evaluations were then compared to interviews with young adults with ASDs and their family members. Interview questions focused on individuals' needs and how well their needs are met by the organizations. The federally mandated Interagency Autism Coordinating Committee identified a deficiency in knowledge with respect to adult services, supports, and community inclusion. This study is significant in that it considered organizations that purportedly provide services to young adults with ASDs, but identified the gaps in service and support, as defined by young adults with ASDs and their families, and examined how and why autism organizations currently fail to respond to their needs.

Document Type

Dissertation: Open Access

Department

Leadership Studies

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