Parent perspectives on role engagement: an investigation of parents of children with ASD and their self-reported roles with education professionals.(autism spectrum disorder)

This exploratory study employed qualitative methodology to analyze interview data that emerged from face-to-face interviews with eight parents of four children with autism spectrum disorder. The study focused on the roles these parents played as they monitored their children's educational programs and interacted with school professionals. The findings revealed that parent participants, especially mothers, consistently engaged in four roles: (a) negotiator, (b) monitor, (c) supporter, and (d) advocate. In addition, the degree of perceived parental trust in education professionals affected the extent of their engagement in the roles of negotiator, monitor, and supporter. The data also indicated that parents' education monitoring was mediated by the trust the parents placed on the education professionals. The authors discuss the implications of the findings for the improvement of parent-professional interactions and offer recommendations for future research.

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Estimates of the prevalence of autism spectrum disorders (ASD) have been increasing; for example, the Centers for Disease Control (CDC, 2005) have estimated the prevalence of ASD as 1 in 166 children. Approximately 141,000 children were served under the classification of autism for special education services in 2003; however, the CDC stated that "not all children with ASD receive special education services under the classification of autism, so the education data underestimate the actual prevalence of the ASDs." The impact of the prevalence of autism on administrators who provide support for services to children with ASD and on all professionals who work with children with ASD cannot be understated. Families of children with this diagnosis are obviously profoundly affected as well. An ASD diagnosis forges a relationship between education professionals and families that is necessary, interdependent, and similar to an arranged marriage with no possibility of divorce. This relationship can be tenuous and fraught with conflict or it can be supportive, mutually beneficial, and extremely rewarding.

The 1997 amendments to the Individuals with Disabilities Education Act (IDEA) mandated that parents of children with disabilities have the legal right to be involved in all aspects of their children's education. Although the IDEA's provisions are straightforward and fundamental, attitudinal and implementation complexities often blur the law's well-intentioned focus. For example, increased prevalence rates for ASD have led to an increased demand for educational services, in turn creating an additional burden for education professionals charged with providing needed services. Parents of children with ASD also often believe that the educational system identifies them as adversarial, demanding, and hostile (Muskat & Redefer, 1996; Powell & Jordan, 1991; Starr, Foy, & Cramer, 2001). Not surprisingly, cases involving parents of children with ASD and local educational agencies (LEAs) are legally and emotionally complex. Booth, Donnelly, and Horton (2000) noted, "No other group of cases has presented a bigger challenge to special educators and education lawyers" (p. i).

The importance and benefit of parental involvement in the education of all children, regardless of their diagnoses, have been well documented (e.g., Alnge, Colvin, & Baker, 1998; Conderman & Katsiyannis, 1996; Dunlap, 1999; Lambie, 2000; Mahoney & Kaiser, 1999; Mundschenk & Foley, 1994; Sheridan & Kratochwill, 1992; Snodgrass, 1991; Turnbull, Turnbull, Erwin, & Soodak, 2006). The IDEA stipulates that parents must be invited to participate on their children's education teams as these teams identify and evaluate children for special education, set educational goals, and make service delivery choices (Office of Special Education and Rehabilitation Services [OSERS], 2000). In essence, the 1997 amendments to the IDEA legitimized parents' role in the education of children with disabilities (Turnbull, Turnbull, Shank, & Leal, 1999). Furthermore, parents have been identified as serving a key role in effective intervention strategies for children with autism (Feinberg & Vacca, 2000; Lord & McGee, 2001). Many researchers see parental involvement as a basic tenet of the special education system (e.g., National Center for Learning Disabilities, 2005; Turnbull et al., 2006).

Although parental involvement has been designated as beneficial and is mandated by the IDEA, reports of parental involvement have not been encouraging. In early studies of parental involvement in special education, parents of children with disabilities reported attendance at Individualized Education Program (IEP) or Individualized Family Service Plan (IFSP) meetings but claimed they had little or no involvement in developing objectives, interventions, or methods of evaluation (Goldstein, Strickland, Turnbull, & Curry, 1980; Yoshida, Fenton, Kaufman, & Maxwell, 1978). In more recent studies, parents of children with disabilities, including ASD, have reported no involvement with IEP or IFSP plans, lack of choices in services, or lack of effective services (Able-Boone, Goodwin, Sandall, Gordon, & Martin, 1992; Kohler, 1999; McWilliam, Young, & Harville, 1995; Osher, 2005; Spann, Kohler, & Soenksen, 2003).

Studies involving parents of children with ASD have reported significant communication problems between home and school (Feinberg & Vacca, 2000; Kohler, 1999), although effective communication is vital to enhancing parental involvement, partnerships, and family-centered approaches to service delivery (e.g., Lambie, 2000; Mahoney & Kaiser, 1999; Murphy, Lee, Turnbull, & Turbiville, 1995; Turnbull et al., 2006). Ineffective communication can often occur during periods of conflict between professionals and parents of children with disabilities. Lake and Billingsley (2000) identified communication difficulties as one of the contributing factors in the escalation of conflict to the point of mediation within the due process system. Yet, conflict does not always escalate to the point of due process hearings, nor is it necessarily something to avoid, for it may serve as an impetus for solving problems and improving programming. Unfortunately, as Feinberg and Vacca have pointed out, "Once conflicts begin, the win-lose mentality of litigation has replaced the complexity of cogent discussion" (p. 135).

Parental involvement is a complex issue. Historically, research has focused on what parents do to engage in their children's education and has not focused on the process of parental involvement (Barton, Drake, Perez, St. Louis, & George, 2004). Barton and colleagues suggested that parental involvement is too narrow a term and should be broadened to a more comprehensive term, such as parental engagement. According to Barton et al., parental engagement encompasses the complexity of the relationship between parents and school and is viewed as a "dynamic, interactive process in which parents draw on multiple experiences and resources to define their interactions with schools and among school actors" (p. 3).

Parental engagement is a critical issue in the education of children with ASD. In this study, we investigated parental perspectives on interactions between parents of children with ASD and education professionals. We employed qualitative methodology and focused on the following research question: How do parents of children with ASD describe their relationships with education professionals and their roles in their children's educational programs? This report is intended to initiate discussion concerning the complex, dynamic relationships between parents of children with ASD and education professionals.

Method

We selected a qualitative research design as the methodology for this exploratory study because it lends itself to the systematic collection, organization, and interpretation of data gained through interviews (Malterud, 2001). More specifically, collective case study methodology allowed us to see processes and outcomes across several cases and afforded opportunities to develop a deeper understanding of the participants' experiences through more powerful descriptions and explanations (Miles & Huberman, 1994). The use of collective case study methodology also gave us reassurance that events in only one case were not "wholly idiosyncratic" (Miles & Huberman; Stake, 2000).

Participants

To allow for maximum opportunities for comparable analysis (Strauss & Corbin, 1998), this study used purposive sampling in the recruitment of participants. To be eligible to participate in the study, parents had to meet the following selection criteria: (a) be the biological parent of a child with ASD, (b) be married, and (c) have a child with ASD enrolled in the public school system at the preschool or primary school level at the time of the initial interview. At a parent support group meeting, we asked for volunteers to participate in the study. The result was four cases, each composed of a married couple, for a total of eight individual participants for this study. Their children ranged in age from 6 years to 8 years, with two children in preschool and two children in elementary school at the time of the initial interviews. All four children were boys. Although the boys attended four different schools, the schools were located in the same school district. The school district was located in a Midwestern city with a population of approximately 150,000. The families were

* Emily and Ned G. and their son, Pete,

* Gayle and Ron C. and their son, Scott,

* Kathy and Tim N. and their son, Ben,

* Linda and Ken S. and their son, Kip (see Note).

Specific demographic information on the participants and the characteristics of their children are presented in Table 1.

All participants were considered to be middle class in terms of economic status. All of the fathers and one of the mothers were employed in white-collar occupations; the remaining three mothers were not employed …