OVERVIEW OF THE PARENT EDUCATION PROGRAM

Although the majority of services at the ARTC are provided to nearby families, ARTC’s parent education program provides services to children with autism and their families who live far from the center. With the growing number of children becoming diagnosed with autism spectrum disorders (ASDs) and a limited number of specialized centers, more families are searching for services for their children (Bryson, Clark, & Smith, 1998; Burton, 2002; Fombonne, 2003b; Gillberg, Steffenburg, & Schaufman, 1991; R.L. Koegel, Koegel, & Carter, 1999; Yeargin-Allsopp, Rice, & Karapurkar, 2003). ARTC’s parent education program provides an innovative service delivery system that expands existing resources and gives children and families access to specialized services. This chapter describes the program and describes a project that provided some initial findings through qualitative outcome data. The goal of this project was to begin to understand the types of support and experiences that families encountered as a result of participating in a parent education program. Although the findings are specific to ARTC’s program, the experiences that participating families have are likely similar to those of many other families who receive parent education as part of their child’s intervention plan. The purpose of this chapter is to discuss an intensive parent education program and the effect it can have on the families of children with autism.

BACKGROUND

A body of literature discusses the challenges that many parents face if their child is diagnosed with a disability such as autism. Parents of children with disabilities can endure high levels of negative stress, often reported to be in the clinical range as scored on standardized measures. This heightened stress can be due to the unknown prognosis for the child’s future and the family’s challenged expectations. It can also be related to obtaining high-quality specialized resources that the children often need. Children with ASDs require special education resources, as well as ongoing and intensive intervention and support. In regard to obtaining effective and appropriate support, researchers have identified common barriers that family members face (Ruef, Turnbull, Turnbull, & Poston, 1999; Turnbull & Ruef, 1996). Through focus group meetings, these authors obtained feedback from individuals with disabilities, their family members, and others who support them. They found that a lack of effective resources was a widespread barrier to effectively supporting families. This lack of resources was associated with a limited amount of services, lack of sufficiently trained staff members, high staff turnover, negative staff attitudes, and use of negative practices. Again, realizing the discrepancy between the specialized services available to families of children with autism as compared with the growing number of identified children, it is clear why families may struggle to find support for their children and themselves. In order to obtain these necessary services for their children, parents may be faced with excessive financial burdens and stress (Birenbaum & Cohen, 1993; Singer & Powers, 1993a).

In addition to the emotional and financial stress of trying to obtain appropriate services, parents of children with autism often deal with the stress caused from managing their children’s challenging behaviors. In children who have a diagnosis of autism, social communication is delayed and stereotypic behaviors are common. Many of these children rely on using early forms of communication, specifically disruptive behaviors, to get their needs met. They also engage in repetitive and stereotypic behaviors that also present challenges to parents who find it strenuous to successfully interact with their children in more prosocial ways. Research has shown elevated levels of stress for parents of children with autism due to the children’s scattered skills and engagement in repetitive and antisocial behavior (Moes, 1995; Plienis, Robbins, & Dunlap, 1988). Parents of children with autism reported greater stress related to caregiving responsibilities, cognitive impairment, disruption in daily activities, and long-term care for their children as compared with parents whose children did not have disabilities. Specifically, findings suggest that parenting a child with a disability increases stress in the areas of everyday management of disruptive behaviors, heavy caregiving responsibilities, and concerns about the child’s future when the parents are no longer able to care for the child (R.L. Koegel, Koegel, & Schreibman, 1991). Heavy caregiving responsibilities and problem behaviors can affect the family’s daily living situation by limiting engagement in leisure or recreational activities. For example, if a child has tantrums in public areas (e.g., a restaurant, the grocery store), the family may avoid taking their child into the community. For these reasons, families can develop feelings of social isolation and choose not to engage in such activities. For a family that enjoys spending time in community settings, having a child who engages in disruptive and stereotypic behaviors can be embarrassing, stressful, and overwhelming. This lifestyle alteration can serve as a source of stress for families. In turn, these areas of family stress can inevitably lead to a lowered quality of life for the children and for their family members. The increased stress for parents of children with autism was found to be consistent across family characteristics including geographic location, child’s age, and severity of impairment (R.L. Koegel, Koegel, & Surratt, 1992). In an effort to enhance program outcomes and to support families, many intervention programs for children with autism include a parent education component. Given that children with autism typically spend time engaged in self-stimulatory or other socially avoidant behaviors, they miss many natural opportunities to learn from their environment. Therefore, it has been suggested that they receive intensive intervention throughout the day and during their waking hours (L.K. Koegel, Koegel, Kelle grew, & Mullen, 1996; Lovaas, 1987). There is a large body of literature supporting the inclusion of parents as active team members for their children with autism, and the results of many studies have shown the benefits of this model. Unlike professionals, teachers, and service providers, parents typically spend more time with their children throughout the days and evenings or on weekends. Therefore, they can provide “round-the-clock” intervention for their children (R.L. Koegel, Koegel, Frea, & Smith, 1995).

INTERVENTION

The intervention program described in the remainder of this chapter focuses on teaching parents (i.e., primary caregivers) the skills of PRT to target their children’s motivation and improve their children’s social-communication skills. This work follows a programmatic line of research to assess and identify the effects of participation for families and their children. A previous work by R.L. Koegel and colleagues (2002) presented quantitative results from five participant families who lived in various areas of the United States prior to, during, and after they participated in the program. The results showed that each of the primary caregivers learned how to incorporate motivational techniques of PRT after a 25-hour parent education program. Each participating primary caregiver mastered the use of the PRT techniques and then successfully incorporated them into their use during natural daily routines at home (e.g., mealtime, bath time). The parents’ skills were shown to maintain for 3 months to 1 year following participation. Improvements were shown in the children’s social-communication skills as well. The children’s functional, social communication improved substantially and continued to improve as their caregivers persisted in utilizing the techniques. Aside from the improvement in learned skills, a rating of social validity was included to assess parental affect during play interactions. The results showed that after participation, the parents appeared happier, more interested in interacting with their children, and less stressed. These encouraging findings illustrate how parents can effectively learn strategies in a relatively short period of time and, by improving their own skills, can improve communication—a key area of functioning in their children.