The Autism Society Event and Education Recordings Archive

Interventions requiring family participation are considered a best practice for autism spectrum disorders. They are associated with a number of desired outcomes relevant to child development and family functioning. However, they do not produce uniformly successful results. Why do we still see children with problem behavior and families with poor quality of life years after the interventions are implemented? This session will try to address these questions and provide information on how families and practitioners can create more effective interventions. Family-based intervention for autism spectrum disorders (ASDs) is considered a best practice as it is strongly associated with a number of desired outcomes relevant to child development and family functioning (Koegel, 2000; Lucyshyn, Horner, Dunlap, Albin, & Ben, 2002; Harris, 1982). These interventions require family participation in facilitating interventions and include both applied behavior analysis (ABA) and positive behavior support (PBS). A major goal of carrying out family- based intervention is to help the target individual and all relevant stakeholders (teachers, parents, other caregivers) enjoy an improved quality of life (Carr et al., 2002). Although family-based interventions are a best practice, they do not produce uniformly successful results.            What defines an effective intervention? There are four dimensions that define effective intervention: independent variable integrity over time (sustainability), positive changes in child development, positive changes in family functioning, and maintenance of relevant positive changes. Independent variable integrity refers to the ability of parent to implement intervention in a consistent and accurate manner. Sustainability thus refers to the independent variable, namely, whether the intervention itself can be successfully and accurately implemented over time (Carr, 2007). Positive changes in child development refers to the child’s acquisition of skills as well as decreases in problem behavior. Positive changes in family functioning refer to improvements in the ability of families to complete daily routines and activities together at home and in the community. Maintenance refers to the durability of positive changes over time. The changes refer to the dependent variables, previously mentioned, relevant to both the child and the family.            This brings us back to the original questions posed. Why do family-based interventions not always work? Why do we still see children with problem behavior and families with poor quality of life years after the implementation of family based interventions? It is first important to consider what is necessary to allow these interventions to work in optimal situations. These mechanisms to intervention success are consistency and accurate attending without negative biases. Consistency is vital in working with children with autism for consistent and predictable systems of scheduling and the effective use of reinforcement techniques (Horner, Carr, Strain, Todd, & Reed, 2002; Cooper, Heron, & Heward, 1987). Attentional deficits and biases can compromise the accuracy of functional behavior assessments and data collection through ABA. Without accurate data collection and assessment, these techniques are likely to have much less success (Horner et al., 2002; Bruey, 2004).

What are the barriers to intervention success? So what prevents these mechanisms from occurring? I propose that there are other variables occurring in the family system that traditional ABA and PBS have not yet made a target for intervention. Parents do not facilitate interventions in a proverbial bubble. Instead the literature (to be reviewed) suggests that interventions occur within a family system that may be interwoven with barriers that prevent the mechanisms to intervention success from occurring. These barriers include: (1) marital/relationship discord, (2) maternal insularity (social isolation), (3) parental depression, (4) elevated parental stress, and (5) lack of material/financial (low SES and/or personal resources. Research from an extensive literature review will be presented on these “barriers” to successful interventions. Additionally, preliminary findings from our own study which looks at the relationship between family barriers and child problem behavior and family quality of life will also be presented. 

What can families and service providers do to address these barriers? The presentation will highlight suggested methods for how to implement and create family-based interventions for children with ASDs and how to effectively work with families and the family system to obtain the highest level of quality of life possible for their children with ASDs. Traditionally, interventions for children with autism focus solely on the child. However, these interventions may be overlooking the importance of the family system surrounding the child. The route to more effective family-based intervention may lie in addressing these family factors prior to or concurrently with child-focused intervention. Specifically, additional interventions could occur at the level of any of the five barriers: marital/relationship discord, parental depression, maternal insularity/social isolation, lack of personal resources, or parental stress. A model of family-based intervention that includes a focus on barriers could serve as a useful heuristic for constructing new and more effective interventions for children with ASDs. Families and service providers will be encouraged to recognize these additional areas and to seek out services for these areas. Suggestions of additional, complimentary treatments will be made. Some suggestions will include: marital counseling, individual counseling, parent support groups, respite care, and sibling support.

The goal of looking at family barriers is not to place blame on families but to draw attention to difficulties families experience. Having a child with an ASD can be stressful at times and is associated with an increase in depression, stress, lack of social support, and marital difficulties. Too often parents overlook the difficulties they are experiencing and focus their energy on obtaining direct services for their children. By focusing attention on the family system as a whole, we are encouraging parents and families to seek out services for themselves as a way of improving quality of life for both their child and their family as a whole.

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