State, society, and disability: Supporting families of children with autism in the People's Republic of China

This dissertation examines service provision at a non-governmental, parent-directed autism organization (NGO) in China. First, it looks at special structural features of this organization that may shape the form of parent education and services that it provides. In order to analyze the question of the relationship between organizational structure and parent services, comparative research at a state-run site (a children's mental health center) is included. The dissertation also examines the impact of parent services on parents, specifically in the areas of knowledge, skills, and attitudes. The dissertation research was conducted using qualitative methods, including observations, interviews, open-ended questionnaires that solicited descriptive data, and document analysis. Interviews were conducted with staff and parents at both sites.; The first results section demonstrates the important influences of funding structure, leadership, and staff relationships on service provision at the NGO. The second results section finds that parent education gives parents knowledge and skills to teach their children, particularly when various learning strategies are used, including hands-on implementation of instruction with feedback from a professional teacher. Findings also include the need for ongoing professional support and communication with other parents, in order to help maintain the gains that parents make while enrolled in an instructional program. The third section uses a comparison with a state-run organization as a lens for understanding the uniqueness of the NGO. Parent services were found to be more comprehensive and effective in the non-governmental organization. Two major differences between the organizations are the leadership structure and the nature of the organizations (one educational, non-governmental, the other medical, state-run), both of which impact motivation of staff. One consistent theme across both sites is parents' need for ongoing support.; Implications and recommendations are given regarding policy and practice. Providing more specific assistance to parents, as well as providing more intense teacher-child instruction time are two suggestions for practice. At the level of policy, cooperation between state and non-governmental organizations is encouraged. Because of parents' need for ongoing support, promoting support for replication of effective non-governmental models such as the NGO that is the focus of this dissertation is called for.