Facilitating Caregiver Adaptation to Autism Spectrum Disorders: The Role of Perceived Control

Background: Caregivers of children with Autism Spectrum Disorders (ASDs) must confront different struggles as they adapt to having a child with ASD, including finding a diagnosis and proper treatment, and making long-term care decisions [Sicile-Kira, 2004].  This process of adaptation is influenced by several well-studied factors, such as perceived severity, coping strategies, and the age of the child, as well as many less-well-understood factors including perceived personal control (PPC).  Currently, most clinical interventions aimed at facilitating adaptation focus on information giving or encouraging the use of problem-focused coping strategies, such as planning for the future.  However, for conditions that have unclear causes, prognoses, and recurrence risks, such as ASD, the level of uncertainty surrounding the condition may impact the utility or availability of some of these traditional interventions. Therefore, interest in developing interventions targeted at other factors involved in adaptation, such as perceived personal control, is growing [Berkenstadt, et al., 1999].  A better understanding of how perceived personal control relates to adaptation is needed in order to identify whether and how to target control perceptions through new clinical interventions aimed at enhancing adaptation. 

Objectives: This study aimed to 1) describe the control beliefs of caregivers of children with ASD and 2) determine how those beliefs relate to adaptation.

Methods: Caregivers (N=324) were recruited through support groups and websites.  Caregivers rated the amount of control they had over five domains of their child’s ASD (daily symptoms, long-term course, medical care and treatment, general, and control by others), and answered open-ended questions about control.  Participants also completed the Mishel Uncertainty in Illness Scale, the Ways of Coping Checklist, and a newly-developed measure of adaptation.

Results: Caregivers in our study reported having moderate amounts of control over each domain, with significantly higher control perceptions in medical care and treatment (p<0.05).  Multiple regression analyses suggested that control in general and over the long-term course were predictive of a caregiver’s overall adaptation (p<0.01 for both), as were the time since a child’s diagnosis, caregiver’s sense of self-efficacy, household income, and child’s age at first symptoms (p<0.01 for all).

Conclusions: Overall, our results support the importance of control in the process of caregiver adaptation, and suggest possible targets for interventions.  In particular, they suggest that the relationships of caregivers with providers may play a critical role in the amount of control they believe that others have over their child’s ASD (so-called participatory control), which may facilitate the process of adaptation. Our results also suggest the need to focus on facilitating gains in long-term control, and provide support for Shelley Taylor’s Cognitive Theory of Adaptation (Taylor, 1983), which suggests that control beliefs need not be consistent with actual control in order to be adaptive.  In particular, the data suggests that long-term control beliefs are strongest in caregivers who believe that the treatments and therapies that they are doing on a daily basis will give their child the best long-term outcomes.   Further studies are needed to develop and test interventions that target PPC.