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Discover how to use natural learning opportunities to target and modify key behaviors in children with autismâ€”leading to widespread positive effects on communication, behavior, and social skills. Itâ€™s all possible with the innovative, widely used Pivotal Response Treatment (PRT), an empirically supported treatment for autism recognized by the National Professional Development Center on Autism Spectrum Disorders and the National Standards Project.
The product of 20 years of research from Robert and Lynn Koegel—co–founders of the renowned Autism Research Center at the University of California, Santa Barbara—this proven approach is now clearly presented in one accessible book. Keeping parents involved in every aspect of behavioral intervention, therapists and educators of children from preschool to elementary school will use the research-supported PRT strategies to
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Daniel Openden, Ph.D., BCBA, Vice President/Clinical Services Director, Southwest Autism Research & Resource Center (SARRC), 300 North 18th Street, Phoenix, Arizona 85006. Dr. Openden is Faculty Associate in the Division of Curriculum & Instruction at Mary Lou Fulton College of Education at Arizona State University. He has worked extensively with families with children with autism spectrum disorders on both federal- and state-funded research projects; provided consulting and training for school districts across the country; presented research at regional, state, and national conventions; and been published in peerreviewed journals and book chapters in the field. Dr. Openden has expertise in developing training programs for teaching parents and professionals to implement Pivotal Response Treatment (PRT) and is currently an associate editor for the Journal of Positive Behavior Interventions.
Robert Koegel, Ph.D., is a senior researcher at the Stanford School of Medicine. His research is in the area of autism, specializing in language intervention, family support, and school integration. He has published over 200 articles and papers relating to the treatment of autism, and several books on the treatment of autism and positive behavioral support. He is the Founding Editor of the Journal of Positive Behavior Interventions. Models of his procedures are used in public schools and in parent education programs throughout the world. He has trained many health care and special education leaders in the United States and abroad.
Lynn Kern Koegel, Ph.D., CCC-SLP, is a clinical professor at the Stanford School of Medicine. She has been active in the development of programs to improve communication in children with autism, including the development of first words, grammatical structures, pragmatics, and social conversation. In addition to her published books and articles in the area of communication and language development, she has developed and published procedures and field manuals in the area of self-management and functional analysis that are used in school districts and by parents throughout the United States and have been translated in other major languages. Dr. Lynn Koegel is the author of Overcoming Autism and Growing Up on the Spectrum with parent Claire LaZebnik, published by Viking/Penguin and available in most bookstores. In addition, she appeared on ABC's hit show “Supernanny” working with a child with autism.
Excerpted from Chapter 5 of Pivotal Response Treatments for Autism: Communication, Social, and Academic Development, by Robert L. Koegel, Ph.D., & Lynn Kern Koegel, Ph.D., with invited contributors.
Copyright © 2006 by Paul H. Brookes Publishing Co. All rights reserved.
Bradley, a 5-year-old boy with autism, lived with his mother, father, and 7-year-old sister in a suburb of a Southwestern city. Bradley's mother worked part time, and his father worked full–time in a small business. With both parents working, the family was lucky to have support from their maternal grandmother, who provided a significant amount of caregiving while Bradley's mother was working.
Bradley spoke in single words and short phrases to have his needs met. He also engaged in disruptive behaviors (e.g., screaming, tantrums, grabbing) when he was told "no" or when making the transition from a preferred activity (e.g., playing video games) to a nonpreferred activity (e.g., getting ready for school). In the area of play, he showed some interest in several toys, but his play often became repetitive (e.g., saying the same words after pushing a button, repeatedly landing on the same square of a board game). Socially, he showed some interest in other children, but he did not interact or play appropriately with them.
These behaviors prompted Bradley's mother to contact the Autism Research and Training center (ARTC) at the University of California, Santa Barbara, to participate in an individualized parent education program. She hoped to gain skills to increase Bradley's motivation to communicate, to reduce his aggressive and noncompliant behaviors, and to improve the family's interactions with him. Bradley's mother and babysitter participated in the program. During the week–long, intensive program, Bradley's mother learned techniques to address his motivation and to improve his social communication. She mastered the use of the motivational teaching techniques and identified teaching opportunities that could be transferred to the family's typical routines (e.g., meals, bath time, play time) at home and in the community. Most important, she became hopeful that her son would make progress in his communication skills and was eager to share her new experience and skills with others who interacted frequently with Bradley (e.g., Bradley's grandmother, teachers, and therapists).
When the family returned home, Bradley's mother successfully taught his father how to use the Pivotal Response Treatment (PRT) strategies with Bradley during play interactions. When the family visited with Bradley's grandparents shortly thereafter, Bradley's grandmother commented on the improvements in his language as well. The family has maintained a relationship with the parent educator through email and telephone contact. Three years after the family participated in the program, Bradley's mother still shares Bradley's progress through anecdotal stories about his academic and social success as a student in an inclusive elementary school classroom: Just wanted to say "Hi" and brag about my son. . . . He has a wonderful teacher and incredible "first grade friends". . . . [Bradley] is included full time — he doesn't even leave for special ed. He receives all his instruction in the regular class and is performing at or above grade level in all areas. His teacher tells me there are days at recess you would never know he has special needs. . . . [During a school game] he shouted, "I'm a winner!" and EVERY kid in that class cheered for him. They were all truly excited for him. It was one of those moments I just wanted to cry.
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.
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, Kellegrew, & 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). Educators and other service providers most likely provide support to children based on a set weekday schedule, during specific and regular periods of time, and in a particular setting such as a clinic room, classroom, or even in a room at the child's home. Conversely, parents are natural teachers for their children throughout the week and on the weekend. They are often with their children in numerous settings such as homes, stores, restaurants, airports, parks, beaches, museums, and movie theatres. In addition to the various settings in which parents are frequently with their children, parents also provide teaching opportunities across various daily routines such as mealtime, car rides, bath time, running errands, shopping, and bedtime. Therefore, a benefit of parent education is the likelihood that children's skills will more likely generalize because teaching occurs in many settings.
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