Parent and School Autism Wars: A Civil Rights Struggle

Parent and School Autism Wars: A Civil Rights Struggle

Based on the civil rights principal of equal educational opportunity, the Individuals with Disabilities Education Act (IDEA) guarantee an appropriate education to all students with disabilities. The 1997 IDEA amendments mandate that parents of children with disabilities have a right to be involved with the school district in education decisionmaking processes, meetings, and records of their children. Yet some parents of children in special education feel that schools do not welcome their participation. Parents of children with autism constitute one group of such parents who continually struggle with concerns about the poor quality of education that their children receive. Their perseverance to obtain not even an ideal--but "appropriate"-- education for their children requires continuous parent involvement. These parents often report feeling that the education system views them as demanding, hostile, and interfering adversaries (Hart, 1993; Jordan & Powell, 1995; Muskat & Redefer, 1994).

To improve parent/school relationships, fulfill educational rights, and improve services to children with autism in schools, it is important to gain insight into the lives of these students and their families. The purpose of this study was to explore the life issues (both home and educational) of a group of parents of children with autism. Information gathered on these issues form the basis of suggested concrete guidelines for teachers and administrators to follow to improve school/parent relationships and services for this population. A broader utility of this study is to inform educators and policy makers about the experiences of these parents to foster a better understanding of the viewpoint of parents of students in special education. Building empathy, trust, and understanding between educators and parents of children with autism can be the first step in the schools delivering the education that the law requires.

Working with children with autism and their families is an important issue. According to the U.S. Department of Education, identification of children with autism increased 79% from 1993-1997. This increase is not proportional to other disabilities, since the increase in identification of all disabilities from the same period was only 9.5% (National Center for Education Statistics, 1998). Over 500,000 people in the U.S. have some form of autism or pervasive developmental disorder, making it one of the most common developmental disabilities (Autism Society of America, 1999). Yet many professionals in healthcare and education do not have the knowledge or preparation to work with this growing population (Autism Society of America, 1999; Hart, 1993; Jordan & Powell, 1995; Muskat & Redefer, 1994).

The prevalent discord existing between parents of children with autism and educators is an increasing concern. To ensure the success of these students, both parents and professionals must make progress in understanding the perspectives and concerns of each other in order to build positive parent/school relationships and improve educational programming for students with autism.

The immediacy and complexity of the school/parent relationship within the context of autism demands a more intimate, in-depth method of inquiry. Designed as "insider" research, the researcher had been the tutor for the selected participants' children, providing educational advocacy and support and developing friendships with the mothers of the three families for over three years. Thus, the researcher was able to use intimate background knowledge about the participants and their district where she had worked, to determine their relevance to the study. The qualitative Portraiture methodology was used in conducting this study to integrate the close relationships between the researcher and the participants and build deep knowledge of their experiences. Portraiture uses methods similar to ethnography, such as living among participants and collecting data for long periods of time. This study evolved through multiple weekly contacts with the participants spanning more than three years.

Three families were selected for the study using intensity sampling. Several common characteristics existed between the three families that contributed to their selection. One major factor shared by all families was the amount of time spent working to solve problems within the same school district. Another element of interest was the common characteristics shared by all families that, despite being white and middle-class, did not lead to ease in navigating the school system. Finally, the strong support network that developed among the three families added depth to the information shared among them and strengthened their ability to advocate for their children. Although both mothers and fathers of children with autism report equal amounts of concern and stress in raising their children (Bebko, Konstantareas, & Springer, 1987), this study focused on the mothers

Informal data collection took place through the researcher's journal that documented three years of relevant conversations and experiences with the three participants, their children, and their school district. Formal data collection was conducted in one year and consisted of individual interviews, focus group interviews, and personal journals covering one of three focus areas: (a) experiences parenting a child with autism, (b) experiences with the educational system, and (c) suggestions for improving services for children with autism. During a time-span typically of a month and a half, one topic was examined through individual interviews with each participant, then concluded through a focus group interview on the same topic with all three participants. All interviews were conducted using interview guides with open-ended questions designed to lead to conversations on desired topics within each of the three focus areas.

In addition to interview data, both the researcher and each participant kept a journal spanning the 1999-2000 school year. The participants were also asked to provide any additional notes, school records, or correspondences during their entire experience with the school district.

A careful analysis of the participants' and researcher's experiences confirmed the highly conflictual relationship between these parents and their children's schools. The parents are dissatisfied with their children's programs and believe their contributions to their children's education, as mandated by IDEA, are unwelcome and interpreted as being demanding, hostile, and threatening. Despite the adversity, each year, each month, each day, the three participants push forward advocating for their children. They monitor their children's work, conference