Date of Award
Morgridge College of Education
Elinor Katz, Ph.D.
Roger Salters, Ph.D.
P. Bruce Uhrmacher
Autism, Disability history, Educational criticism, Connoisseurship, Oral history, Parent engagement, Systems change
A qualitative research highlights how parent driven "communities of support" create lasting change in schools and communities, through the unique blend of the two methodologies, oral history and educational criticism and connoisseurship.
In recent years, schools and communities are unusually impacted by an escalating wave in the diagnosis and treatment of persons with Autism. In 2010, the Center for Disease Control's Report stated 1 in 110 U.S. children are diagnosed with Autism. Yet long before this official report, parents and professionals affected by Autism and other disabilities were busy during the last half of the 20th century, seeking out ways to treat, cure and increase the quality of the children's lives. They were part of the disability advocacy movement that forged legislation in special education, pre-school early identification/education and pioneering therapeutic treatments.
Among these pioneering early groups in the Autism community, are the parents and professionals who founded FEAT (Families for Early Autism Treatment), in 1994. Their intent was to promote high quality school programs and services for children with Autism. Their creative efforts serve as a model for parents of children with disabilities everywhere. Through perseverance and concerted action, they channeled their personal loss and grief into a positive force, creating a community of support advocating for change in their schools and community.
This research discovers valuable information about parent organization efforts, perspectives of FEAT's strategies, along with practical applications for a model which may be useful for other parent organizations seeking to change their schools and communities.
A hybrid research methodology was implemented. Building on the qualitative design of oral history; this research records and interprets living disability rights history. Utilizing Eisner's educational criticism and connoisseurship, it also illuminates research results with an enlightened pen, through poetic representation. These two qualitative methodologies, oral history and educational criticism and connoisseurship, guide the data collection, analysis, interpretation, and literary presentation of this research. The parents and professionals, as the five founders of FEAT were interviewed three times and tape-recorded. The tapes were transcribed, studied, analyzed and poetic representations of their personal insights were written and displayed.
Answers to the research questions were gleaned through analysis, highlighting the founders' challenges, resources, the impact of their efforts, and a detailed list of recommendations for other parents, community leaders and educators.
Through the technique of educational criticism and connoisseurship, research findings were further analyzed. The themes emerging from this study are: direction for advocacy, building for change and impact of legacy. The founders' insights and perspectives of their life experiences provided study implications focusing on the autism related issues of urgency, advocacy, effective treatment, public awareness, research, policy planning and communities of support. Resulting recommendations hold significance for those who work with and advocate for persons with autism and/or for those who make policies that guide autism research, services and programs.
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Bethany Kristin Mickahail
Received from ProQuest
Mickahail, Bethany Kristin, "Parents as Change Agents in Their Schools and Communities: The Founding of Families for Early Autism Treatment (FEAT)" (2010). Electronic Theses and Dissertations. 426.
Education policy, History of education