The most important entity for a child with autism is the child’s family. Parents and other family members are essential resources, and their interactions with their child constitute the most important influences on the child’s learning and development. But the influences are complex and multidirectional. Not only do parental interactions help guide the child’s social, cognitive and emotional growth but, simultaneously, the child’s characteristics and actions continually influence family members’ behavior and, indeed, the functioning of the entire family system.
It is also understood that the presence of a disability, such as autism, produces powerful and indelible changes in the family system. The extent and quality of the changes, however, depends upon the severity of the disability and numerous features of the family system. In some cases, the changes introduced by a disability can be disruptive, sometimes leading to family dissolution, while in other cases the changes can represent a source of new strength and increased family unity (Turnbull & Turnbull, 2001).
One feature that can readily exacerbate challenges in family functioning is the presence of problem behaviors, such as aggression and persistent and violent tantrums. Even when families are cohesive and resolute, uncontrolled problem behaviors of a child with autism can present tremendous disruptions to family routines, both in and outside the home. Problem behaviors can make it extremely difficult to complete ordinary activities, such as getting ready for school, sitting down for a family meal, going to the grocery store or enjoying recreational outings. Many families emphasize that problem behaviors are a major source of parenting stress, and that they oblige elaborate accommodations as families seek to reduce the chances of problem behaviors occurring, especially in public places (Fox, Vaughn, Dunlap, & Bucy, 1997; Fox, Vaughn, Wyatte, & Dunlap, 2002). It is common for families to avoid activities altogether in order to prevent the social humiliation and the physical and emotional risks that can accompany a child’s public display of problem behaviors. Such avoidance, of course, results in fewer occasions for the child to benefit from home and community learning opportunities and for the family to participate in typical community outings. In short, severe problem behaviors can impose significant impairment on a family’s functioning and quality of life.
Given the serious consequences associated with uncontrolled problem behaviors, a need exists for interventions that are effective in preventing or substantially reducing these behavior patterns in home and community contexts. The principles of Applied Behavior Analysis (ABA) and the pragmatic procedures of positive behavior support provide such workable solutions.
What is Positive Behavior Support?
Positive behavior support (PBS) is a practical approach, derived largely from ABA, which is intended to improve quality of life and reduce occurrences of problem behavior (Dunlap, Carr, Horner, Zarcone, & Schwartz, 2008). PBS involves a process of functional assessment and an assessment-based behavior support plan. Ordinarily, the support plan includes multiple components involving the following: (1) teaching the child functional (usually communicative) alternatives to problem behavior, (2) adjusting the antecedent environment to remove triggers for problem behavior and increase stimuli associated with desired prosocial responding, and (3) increase the availability of positive reinforcement for desired adaptive behavior. The specific procedures in each of these areas are selected from an array of strategies that have been demonstrated to be effective in applied research.
PBS is a collaborative process in that the people who will be responsible for implementing the support plan (e.g., parents) are also the people who are most important in determining the components that will be included in the plan. In other words, the plan itself is based not only on the results of the functional assessment and intervention strategies that have been described as effective in the research literature, but also on the congruence between the procedures and a family’s ability and willingness to use them in the settings where they will be needed. If a potential intervention strategy does not meet these three criteria, then a different strategy is selected. Fortunately, in most cases, there is a substantial assortment of intervention procedures that could be selected, depending upon the needs and preferences of the parents or other interventionists. Details about the process of functional assessment and the development of a behavior support plan are presented in a number of excellent resources on the Internet and in articles and books (e.g., Bambara & Kern, 2005; Carr et al., 1994; Hieneman, Childs, & Sergay, 2006; Janney & Snell, 2008).
Implementing PBS with Families
The process of family-centered PBS is developed and implemented by a team. The team may include a variety of people who are involved with and care about the child and family (e.g., extended family, friends, teachers, other professionals), but it must at a minimum include the key family members who will be responsible for implementing the intervention and an individual who is knowledgeable and experienced in behavioral principles, the PBS process and family dynamics. The family member(s) are the most important team members as they are the ones who provide detailed information about the child’s and family’s needs, goals, preferences, characteristics, history and comfort with various intervention options, and who will be ultimately responsible for carrying out the intervention. The behavioral expert provides guidance in the PBS process of assessment and intervention, information about evidencebased practices and assistance to the family in effectively implementing the plan. The primary objectives of the behavioral expert are to help the family design and implement an effective intervention strategy and, in doing so, help the family acquire the basic knowledge of PBS needed to repeat the process if, or when, problem behaviors recur in future circumstances and new and different routines.
Samuel
A clear example of the PBS process was described in an article by Buschbacher, Fox & Clarke (2004). The article was titled “Recapturing desired family routines: A parent-professional behavioral collaboration” and focused on a 7-year-old boy named Samuel and his family. Samuel was described as having severe developmental disabilities, autistic-like characteristics, Landau-Kleffner syndrome (aphasia with temporal lobe seizures), and severe and complex neurological problems. He lived with his biological parents, an older sister and a younger brother. For some time, regular family routines that were valued by Samuel’s parents and siblings had been disrupted, and virtually impossible to carry out, due to Samuel’s problem behaviors. These behaviors included screaming, biting, kicking, head butting, inappropriate touching and falling on the floor. In an effort to address these problems, the family was put in touch with a team of PBS consultants.
The PBS process began with a large team meeting that included Samuel’s immediate and extended family, his teachers, his speech-language pathologist and the PBS consultant. The meeting was intended to build a circle of support, provide a venue for describing the “whole Samuel” and identify priority areas that the family would like to see addressed. Samuel’s parents described three home routines to be improved through PBS action plans. The routines were dinner time, watching television together as a family and preparing for bed (and sleeping through the night).
A functional assessment was conducted for each routine. The functional assessment included a structured interview (O’Neill et al., 1997) with Samuel’s mother and father, followed by direct observations on four separate days conducted by the PBS consultant. The assessments led to refined definitions of the problems and hypotheses regarding the function, or purpose, of the problem behaviors. For instance, in the dinner routine, problem behaviors were presumed to be exhibited in order to obtain (or “request”) particular foods, beverages or attention. The problems during the bedtime routine involved multiple functions, including escape or postponement of the transition to bed, and requests for attention or a non-bedtime-related activity.
Following completion of the functional assessment, Samuel’s parents and the PBS consultant developed intervention plans for the three routines. Each plan had multiple components, including “prevention” strategies for reducing the likelihood that problems would occur (e.g., communication aids and choice boards), “teaching” strategies focused on helping Samuel learn communicative alternatives to problem behaviors (e.g., manual signs and gestures), and “reinforcement” strategies designed to strengthen Samuel’s existing prosocial behavior. Separate plans were developed for each routine, with the priority given to strategies that could be expected to be effective based on the research literature and that Samuel’s parents could use with comfort and fidelity on a daily basis. During the early stages of implementation, the PBS consultant provided coaching to Samuel’s parents, but after a few days the parents were using the procedures independently.
The results showed that Samuel’s problem behavior was dramatically reduced in a short period of time during all three routines to the point that the problems were no longer a disrupting influence. In addition, Samuel became more engaged with the routines, and his interactions with his parents became much more positive. An added benefit during the bedtime intervention was an increase in the number of times that Samuel slept through the night. And, finally, and perhaps most importantly, Samuel’s parents reported that, following intervention, they also used the process and procedures of PBS during other routines that did not involve the PBS consultant. This suggests a tremendously important outcome: the development of problem-solving competencies by Samuel’s parents for use in future situations that involve the challenge of problem behaviors.
John
John was a 10-year-old boy with Asperger’s syndrome who lived with his mother, father, grandmother and two younger brothers. John was functioning at grade level in most school subjects except for reading and, in most circumstances, his behavior was quite acceptable. However, the morning routine, from awakening until going to school, presented a major problem for the entire family due to John’s failure to complete his morning responsibilities and his tendency to engage in tantrums when pressured. These delays and disruptions caused havoc in the home, led to John missing his school bus and started the day on a disagreeable note for all members of the family.
The PBS process was much the same for John as it was for Samuel, except that it was simpler and required less time on the part of the PBS consultant and the family. After agreeing on the goals having to do with the morning routine, a functional assessment was carried out. Interviews and direct observations indicated that John’s failure to complete the routine had to do with his limited ability to track the sequence of steps he needed to complete, difficulty encountered in some of the dressing activities, and his tendency to be distracted by morning television and his pet hamster.
The intervention, developed by John’s parents with input from the PBS consultant, was comprised of several components: (1) a large chart depicting each step of the morning routine with Velcro pictures that could be removed when a step was completed; (2) modifications to some of John’s clothing to make it easier to complete the dressing tasks (e.g., self-tying shoe laces); and (3) a choice chart from which John could select a reward after successfully completing his dressing. The choices included items John could interact with while he ate breakfast.
This simple intervention package produced rapid improvements such that the morning routine was no longer disrupted by excessive delays or problem behaviors. In addition, the time required to complete the morning routine was reduced substantially so that John was regularly able to finish his breakfast well in time to catch the school bus. The entire family was grateful for John’s improved behavior (Clarke, Dunlap, & Vaughn, 1999).
Jeffrey
The previous case illustrations described family-centered PBS in home contexts. Before ending this article, it is important to emphasize that the same process can be applied to community contexts, including settings that have been associated with traumatic incidents related to a child’s problem behavior. There are several cases that have been described in the literature (e.g., Vaughn, Clarke, & Dunlap, 1997; Vaughn, Dunlap, Fox, Clarke, & Bucy, 1997), but one should be sufficient to demonstrate this point. Because the case followed the same PBS process described previously, the details will not be reiterated. Only the basic outlines of the example will be presented.
Jeffrey was a 9-year-old boy with multiple and severe disabilities that included medical challenges and significant problem behaviors, ranging from yelling and screaming to biting and head banging. His mother, Millie, was the primary caregiver for Jeffrey and his older brother. Millie also worked part time during the day. Jeffrey’s father was a truck driver who spent most of every week on the road. The family’s circumstance obliged Millie to include her two sons in community errands that had to be completed after work and school. However, Jeffrey’s behavior during these outings was often so disruptive that the errands were painfully difficult and sometimes impossible to complete. The community routines that Millie identified as priorities were: (1) completing transactions at a drive-through bank; (2) eating at a fast-food restaurant; and (3) making purchases in a large grocery store.
Millie worked with the PBS consultant to complete the functional assessments and develop intervention plans that could be used in the various settings. Although the challenges presented by Jeffrey’s behavior were substantial, the interventions proved effective in all settings, to the point that data collected six months following intervention showed no problem behavior in any setting (Vaughn, Dunlap et al., 1997). Millie summed up the impact of the PBS process by saying that Jeffrey is “a happier child; he’s happier in school, and everywhere we go he enjoys places a lot more. Overall, I think it’s helped him tremendously and has had a good impact on our family” (Fox, Vaughn, Dunlap, & Bucy, 1997, p. 204).
Summary
A family’s quality of life can be seriously impaired when a child exhibits severe problem behavior. Home and community routines that are ordinarily taken for granted can be anguishing exercises or altogether impossible to complete. The process of PBS, based largely on the principles of ABA, offers a means to resolve such problem behaviors in the home and community contexts in which they occur. Numerous studies have demonstrated the feasibility of PBS in family circumstances and illustrated the benefits that can result not only for the child, but for the entire family as well (Lucyshyn, Dunlap, & Albin, 2002).
References
Bambara, L., & Kern, L. (Eds.) (2005). Individualized supports for students with problem behaviors: Designing positive behavior plans. New York: Guilford Press.
Buschbacher, P., Fox, L., & Clarke, S. (2004). Recapturing desired family routines: A parent-professional behavioral collaboration. Research and Practice for Persons with Severe Disabilities, 29, 25-39.
Carr, E.G., Levin, L., McConnachie, G., Carlson, J.I., Kemp, D.C., & Smith, C.E. (1994). Communication-based interventions for problem behavior: A user’s guide for producing behavior change. Baltimore: Paul H. Brookes Publishing.
Clarke, S., Dunlap, G., & Vaughn, B. (1999). Family-centered, assessment-based intervention to improve behavior during an early morning routine. Journal of Positive Behavior Interventions, 1, 235-241.
Dunlap, G., Carr, E.G., Horner, R.H., Zarcone, J., & Schwartz, I. (2008). Positive behavior support and Applied Behavior Analysis: A familial alliance. Behavior Modification, 32, 682-698.
Fox, L., Vaughn B.J., Dunlap, G., & Bucy, M. (1997). Parentprofessional partnership in behavioral support: A quantitative analysis of one family’s experience. Journal of the Association for Persons with Severe Handicaps, 22, 198-207.
Fox, L., Vaughn, B., Wyatte, M.L., & Dunlap, G. (2002). “We can’t expect other people to understand”: The perspectives of families whose children have problem behavior. Exceptional Children, 68, 437-450.
Hieneman, M., Childs, K., & Sergay, J. (2006). Parenting with positive behavior support. Baltimore: Paul H. Brookes Publishing.
Janney, R., & Snell, M.E. (2008). Behavioral support. (2nd Ed.). Baltimore: Paul H. Brookes Publishing.
Lucyshyn, J., Dunlap, G., & Albin, R.W. (Eds.). (2002). Families and positive behavior support: Addressing problem behaviors in family contexts. Baltimore: Paul H. Brookes Publishing.
O’Neill, R.E., Horner, R.H., Albin, R.W., Storey, K., Sprague, J.R., & Newton, J.S. (1997). Functional assessment of problem behavior: A practical assessment guide. Pacific Grove, Calif.: Brooks/Cole.
Turnbull, A.P., & Turnbull, H.R. (2001). Families, professionals, and exceptionality: Collaborating for empowerment. Upper Saddle River, N.J.: Prentice Hall.
Vaughn, B.J., Clarke, S., & Dunlap, G. (1997). Assessment-based intervention for severe behavior problems in a natural family context. Journal of Applied Behavior Analysis, 30, 713-716.
Vaughn B.J., Dunlap, G., Fox, L., Clarke, S., & Bucy, M. (1997). Parent-professional partnership in behavioral support: A case study of community-based intervention. Journal of the Association for Persons with Severe Handicaps, 22, 185-197.
About the Author
Glen Dunlap, P h.D., is a Research Professor and the Director of the Division of Applied Research and Educational Support within the Department of Child and Family Studies, University of South Florida. He is a prominent researcher with over 35 years of experience, and has authored numerous publications.
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