With permission of the author, Harold Longenecker, Ph.D. This is an informal summary of his (so far) unpublished research.
Dear Research Participants and Helpers,
I address this letter to both the parent participants and to those individuals who were helpful in spreading the word of my project to others. I cannot thank you enough for all of your generous support. The response I received to my request for participants was tremendous, and I realize it represents a significant donation of your time and care. Without this network of support this research could not have been completed. Many parents contributed extremely useful commentary about their experiences, which helped to give life and context to the study's findings. Much of your commentary found its way into the dissertation text.
There is widespread recognition that having a child with autism is highly demanding and much speculation about the factors that might complicate parental adjustment. While the benefits of education are clear in terms of acquisition of skills, school can also precipitate parent stress and worry. Very little research addresses how involvement in an educational program relates to parent stress levels. The intent of this study was to compare how two commonly available types of training programs for children with autism are differentially associated with stress levels and locus of control of parents. "Parental locus of control" refers to parents' view of how "in control" they are, that is, how able to influence their child's behavior.
This dissertation compared the current level of stress and parental locus of control reported by parents whose children with autism are receiving intensive Applied Behavior Analysis (ABA) intervention services with those whose children are receiving traditional, school-based programming. In the treatment of autism, ABA interventions are focused, behaviorally based methods of teaching social and language skills to children with autism and typically require significant parent participation and training. Such programs are generally based on the teaching model developed by Dr. Ivar Lovaas and consist of one-on-one, intensive, behavioral intervention, using precision teaching techniques.
Traditional school-based programs are considered to be those interventions that do not have a parent participation component, intensive one-on-one training, or a specific data-driven treatment orientation. While school-based programs may incorporate some behavioral methods, they vary widely in treatment orientation and special education philosophy. The parent experience in this condition is typified by sending the child with autism to a center-based program and little or no active involvement in the child's treatment beyond periodic Pupil Evaluation Team (PET) meetings.
Participants were recruited from parent support organizations and schools throughout the United States and asked to complete a packet of three questionnaires: (a) the Parenting Stress Index, (b) Parental Locus of Control Scale, and (c) a background questionnaire to control for the potential influence of several variables on reported stress levels and perceived locus of control.
One dramatic finding of the study was that 80% of parents reported levels of stress above the 85th percentile compared to parents in the general population, regardless of educational program. It was found that parents of children with autism participating in traditional school-based programs on average reported higher levels of overall stress and stress related to child characteristics than parents of children in ABA programs. Secondly, it was found that parents' internal locus of control orientation in self-report of parental efficacy and control of their child's behavior was generally higher for those parents whose children are engaged in an ABA intervention vs. those with children enrolled in traditional school-based programs. These results support the research hypotheses.
The findings are consistent with the manner in which an ABA program might be expected to influence a parent's experience. Faced with the crisis of an unknown, highly impairing, and disruptive condition afflicting their child, parents' existing capabilities are bound to be inadequate to meet the demands they face. The ABA educational model may enhance and expedite the family's recovery from crisis by directly involving parents in collective group action to reduce and manage demands. This is achieved through provision of informational and moral support, training, and modeling of specific teaching and behavior management strategies, and direct and intensive intervention to remediate their child's deficits and behavioral challenges. ABA group parents' relatively lower reporting of stress associated with child characteristics (such as difficulty with adaptation, demandingness, etc.) may be attributable to a change in the child as a result of treatment, reinforced by empirical evidence of change available through the ABA data collection process. Furthermore, it is not surprising that parents who have the benefit of participation in ABA programming feel increased efficacy and a sense of control of their child's behavior.
Contrary to expectation, it was found that the longer the involvement of families in traditional school programming, the greater the degree of benefit in these domains. This trend did not hold for parents of children in ABA programming. One possible explanation for these findings is that the effect of ABA programming on parent stress and locus of control may be achieved more rapidly, and that does not reflect what may be a natural and expectable accommodation to stress over time in the absence of such intensive intervention.
In all research designs there are relative strengths and weaknesses to take into account when interpreting the results. In this study, one delimiting factor is that the assignment of participants into ABA and traditional school-based conditions was done by self-report and therefore may imply a greater degree of within-group similarity than actually exists. ABA programs are subject to some variability in the way and degree to which ABA principles are applied, and so may differ in their impact. Even more to the point, the traditional school-based programs reported by parents varied greatly, ranging from circumstances in which a child with autism might receive virtually no individualized services to those in which children received highly structured and coordinated interventions which included speech therapy, occupational therapy, and elements of behavior modification. It is hard to know how aggregation of these program variants into two broad categories may have skewed or diluted the results.
The voluntary commentary provided by parents highlighted another issue that influences interpretation of these findings and clearly requires address in future research into parent stress and educational programming. That issue is the stress generated by parents' efforts to secure appropriate services for their children. Prevalent in parents' comments were complaints or at best mixed reviews about the impact of the education system on their experience, and were well represented among participants with children in both kinds of programs. As one parent summarized the experiences of parents in her autism support group, "All have school placement nightmares, police called on child, suspensions, no money available from Regional Center, services not available, denied or cut off before completed." There were numerous complaints about having to fight for appropriate services for their child, with many reporting undergoing due process hearings. Often in areas where services are available school systems and insurance will not fund them, resulting in many parents reporting financial strain from paying for services themselves and/or personally providing most of the services. In areas where services are not available, parents complain of educators uninformed about autism and unwilling to listen. Some parents report they consequently moved their families to other areas to find services. Others have chosen to home school their children. Many parents made clear that they associate ongoing stress as much or more with school conflicts as with the child's behavior.
The implication for research suggested here clearly is that how specific educational approaches may influence parent stress and locus of control may be confounded by the extent of conflict to which parents were subject to secure these services. Consequently, it would be desirable to survey parents of autistic children more specifically about their experiences with educational systems to better elucidate how interactions with these systems created additional stress and/or improved a family's capability in meeting demands. Of course, the implications for educational policy are enormous and damning.
Once again, thanks for your participation and my sincere best wishes to you and your families.
Harold Longenecker, Ph.D.
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