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 with teachers, attend meetings, make follow-up phone calls, contribute ideas, assist with homework, pay for tutors and other support services, and continue their self-education. They are not oppositional parents asking for something beyond what is guaranteed under IDEA. They are civil rights leaders.
Through their own advocacy efforts, the three mothers in this study have increased awareness of autism, empowered other parents of children with autism, developed a local chapter of the autism society, and are working to make legislative changes. However, they cannot make the necessary changes alone. Ultimately schools need to make progress toward understanding parents ' issues and concerns, and finding appropriate responses both personally and programmatically to improve relationships and services to these families.
Common themes found within the experiences of all three participants will be presented as six phases to provide a framework for understanding the participants ' experiences. Although some parents may move through the phases as presented, no such limitation exists, as transition through the stages can occur in multiple directions. The phases intend to provide a structure for understanding a complex set of dynamics. Phase one, the Discovery Phase, describes the discovery of autism in their children. Phase two, the Naive Trust Phase, shows parents turning with trust to the educational system. Phase three, the Awakening Phase, details how parents react when they find out the educational system fails to appropriately educate their children. Phase four, the Confrontation Phase, represents the participants ' understanding of why educators ' misperceptions about parents lead to confrontation. Phase five, the Advocacy Phase, describes the parents becoming advocates for their children and other children with autism. Phase six, the Hope Phase, represents the ideal that comes to drive parents ' advocacy efforts.
Many policies are already in place addressing parent involvement and the needs of students with disabilities. However, implementation of these policies can be improved through changes in practices by both parents and schools. Policy and practices regarding parent involvement and programming for children with disabilities should be examined and improved systemically so that parents do not have to go through the six phases, struggling to realize the hope of appropriate programs for their children.
Several federal, state, district, and campus policies are in place to ensure appropriate services for children with disabilities. However, as illustrated in this study, the existence of policies does not guarantee implementation. The following suggestions for practice are based upon statements made by the three participants, literature relevant to autism, and my own experiences dealing with existing school programs. Although schools face great challenges such as the shortage of qualified teachers, the participants strongly believe that some systemic reform could reasonably be implemented without requiring a costly overhaul of the entire educational system. These suggestions envision improved services to children with autism as well as improved relationships between parents and educators. Practices focusing on preventing parent/school conflicts could help avoid some of the costly emotional battles that erupt over disagreement related to appropriate educational programming. Although these suggestions are best applied systemically, for purposes of clarity, they have has been divided into suggestions for teachers and suggestions administrators.
Throughout our interviews and discussions, the three participants have repeatedly acknowledged their awareness of the great challenges teachers face. In addition to demands in the classroom, the participants also acknowledged that many teachers face difficult political issues such as keeping different groups happy such to include influential parents, administrators, and at times fellow teachers. All three participants have expressed desire to support teachers with their arduous tasks, yet find their efforts are often interpreted by teachers as interference instead of assistance. However, the participants and literature focused on a few key areas that could greatly improve services to and relationships with children with autism and their families. Suggestions presented on these areas will cover effective communication, respect and trust, and improvements in program implementation.
In addition to teachers, administrators have been identified in literature and by parents as another key factor in providing appropriate services for children with autism and their families. Full implementation of a child 's IEP cannot occur without carefully planned administrative support. Administrators are important in the IEP progress due to their power in making campus-level decisions and creating a climate that shows concern for all students. Suggestions for administrators include a list of qualities to seek when hiring skilled teachers, how to best support teachers, effective facilitation of IEP meetings, and how to obtain important procedural knowledge in order to provide effective support for special education programs.
Parent involvement has gained support through research showing a significant and positive affect on student achievement in schools. This finding has prompted schools and districts to include goals in their missions and practices to foster and increase parent involvement. However, there is little agreement on the role of parents in schools, or if the involvement of all parents is desired. Despite the amendments in the 1997 IDEA increasing the role of parents in educational decision-making, parents of children with disabilities still report encountering school barriers to involvement. Disagreements between these parents and educators center around the role of parents, communication, and organizational issues within the school.
The relationship between parents of children with autism and school personnel appears to be even more adversarial, and in some cases quite oppositional. This study suggests that the unique features of autism, combined with a lack of available information and training in autism, explain why parents and schools encounter conflicts when parents assert their involvement rights. The six phases of the parent/school relationship provide a framework for understanding the chain of events that often occur as parents receive a diagnosis of autism, and interface with the education system to obtain an appropriate education. Understanding these events, along with implementing appropriate suggestions for teachers and administrators represent an important first step in improving implantation of policies and services for this unique and growing population.

References
Autism Society of America (1999). Autism Society of America Homepage. [On-line]. Available at www.autism-society.org.
Bebko, J. M., Konstantareas, M. M., & Springer, (1987). Parent and professional evaluations of family stress associated with characteristics of autism. Journal of Autism and Developmental Disorders, 17(4), pp. 565-577.
Hart, C. A. (1993). A parent 's guide to autism. New York: Pocket Books.
Jordan, R. & Powell, S. (1995). Understanding and teaching children with autism. New York: John Wiley & Sons.
Muskat, L. R. & Redefer, L. A. (1994). Pitfalls in educational programming for autistic children in the United States of America. US Department of Education. (ERIC Document Reproduction Service No. ED 406 794.

References: Autism Society of America (1999). Autism Society of America Homepage. [On-line]. Available at www.autism-society.org. Bebko, J. M., Konstantareas, M. M., & Springer, (1987). Parent and professional evaluations of family stress associated with characteristics of autism. Journal of Autism and Developmental Disorders, 17(4), pp. 565-577. Hart, C. A. (1993). A parent 's guide to autism. New York: Pocket Books. Jordan, R. & Powell, S. (1995). Understanding and teaching children with autism. New York: John Wiley & Sons. Muskat, L. R. & Redefer, L. A. (1994). Pitfalls in educational programming for autistic children in the United States of America. US Department of Education. (ERIC Document Reproduction Service No. ED 406 794.