A Parental Perspective on Progress in a Child with Autism.

Abstract

This thesis examines the life story of a family’s triumphs and struggles raising a child with autism. The aim of the study was to understand the experience of one family, their perceptions of success/progress, and the factors that may be involved in that process. In conducting the research, the researcher recognizes that all children are different and unique. This study will not reveal the most effective way to approach or treat autism, but discuss a number of factors, such as risk and opportunity factors that may be influencing this child’s development. The purpose in exploring these findings is to suggest that there are numerous approaches to achieve positive outcomes for a young child with autism, and to expand on the discussion of possible factors promoting such progress or success. One family was selected in order to create an accurate picture of the family’s experiences raising an autistic child. The parents were interviewed using semi-open ended questions and the interview focused on their experiences with the following: signs of autism, the diagnosis, experiences following the diagnosis and treatment, understanding of diagnosis and how it has changed, entrance to the school system, parents view on their child’s progress, and views about what the future holds. The parents also completed questionnaires to confirm responses from the interview and create a clearer understanding of the various risk and opportunity factors involved in their child’s development. The child’s teachers and principal were also interviewed to gain a better understanding of the child in the school system and the teacher’s competence in the area of autism. The child was also observed in a number of settings and administered cognitive and ability tests to examine her ability. Additionally, previous psychological reports and childhood videos were also examined for additional insight into the family’s life and to create a biographical sketch of the child’s life. The responses and information were analyzed using qualitative techniques such as coding, meaning condensation, and meaning categorization. Further analysis of the data lead to the emergence of common themes and issues, which include: acceptance of the diagnosis, frustration with the school and health system, a sense of family values and expectations, perceived progress as real, and a sense of urgency for the family’s experiences to be heard. The findings of this study indicate that the parent’s perceived progress is likely real, based on the perceptions of the parents, teachers, professionals involved with the child, and the researcher’s observations. The family believes that the progress can be attributed to the early implementation of early intervention, speech language pathology, occupational therapy, and the family’s undying support. This thesis attempts to make visible the need for research in the area of progress in autistic children and the struggles that families endure along their lengthy path to success. It allows one family the opportunity to share their experiences, attitudes, and perceptions about the progress witnessed in their autistic child and what it took to get there.