Examining the relationship between stress and lack of social support in mothers of children with autism.

A selective, critical literature review is presented on the relationship between stress and the paucity of social supports for mothers of children with autism. The published literature reviewed reveals an association between challenging child characteristics and a mother's inclination to seek social support, with mothers under greater stress being more prone to pursue social support. For mothers of children with autism, informal support appeared to be a more effective stress-buffer than formal support. The cumulative results of several studies illustrated that parents who received support related better emotionally to their children. Furthermore, low levels of social support were the most powerful predictors of depression and anxiety in mothers.

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Parenting a child with a disability can produce great stress and a sense of imbalance in the family system (Burrell, Thompson, & Sexton, 1994). It is important that parents have a means to cope with such stress, and one factor that has been shown to alleviate parental stress is social support (Bristol, 1984; Dyson, 1997; Sharpley, Bitsika, & Efremidis, 1997). However, the ability of social support to serve as a stress mediator has been found to be related to the parent's gender. For example, Krauss (1993) found that social support contributed to lower maternal stress, yet for fathers it was not a significant contributor to lower stress levels. Such findings may reflect the fact that typically the majority of caregiver demands are placed on mothers of children with disabilities (McLinden, 1990).

As a group, mothers of children with autism appear to be the most adversely affected by the stress-related factors that result from rearing a child with a disability. Sanders and Morgan (1997) reported higher levels of stress in mothers of children with autism when compared to mothers of children with other developmental disabilities (e.g., Down syndrome). According to Sharpley et al. (1997), the three most stressful factors associated with parenting a child with autism are (a) concern over the permanency of the condition; (b) poor acceptance of autistic behaviors by society and, often, by other family members; and (c) the very low levels of social support received by parents.

Dunst, Trivette, and Cross (1986) defined social support as a multidimensional construct that includes physical and instrumental assistance, attitude transmission, resource and information sharing, and emotional and psychological support. Social support may also refer to formal services one receives from professional-based organizations, and/or services from more loosely structured organizations (e.g., social clubs, churches) that the family deems important to their lifestyle. This literature review will examine four aspects of social support, which fall into one of two categories: precursors that lead mothers to seek out social support and the actual use of social support to alleviate stress. First, the review will investigate the characteristics of users of social support and the characteristics of their children that lead parents to seek that support. Second, the review will look at the stress that mothers experience due to a lack of social support. Third, the review will consider the positive effects of social support (informal or formal) on maternal stress. Finally, the literature review will examine the effects of social support on parenting children with disabilities.

This article reviews research from professional peer-reviewed journals and two edited books (Schopler & Mesibov, 1983, 1984) concerning the use of social support to alleviate stress in mothers of children with autism. All reviewed literature was found by conducting a search on the ERIC database using the keywords social support, autism, mothers, parents, and developmental disabilities. This is not an exhaustive review; the articles span 20 years (from 1979 to 1999). No articles related to the use of social support by mothers of children with autism were found past 1999. The articles that will be reviewed used a variety of research methods, including parent questionnaires, self-report measures, and analytic research designs to obtain their findings.

Measures

Three self-report instruments were commonly used to measure the magnitude of stress experienced by parents of children with autism, and the social supports (formal or informal) available to them.

Parenting Stress

Two stress measures were routinely used in the reviewed literature: the Parenting Stress Index (PSI; Abidin, 1983) and the Questionnaire on Resources and Stress (QRS; Holyroyd, 1974). Other less commonly used stress measures are mentioned in the review. The PSI is a self-report measure designed to determine the degree of stress in the parent-child system. The stress index is divided into two domains: child characteristics and parent characteristics. The division of the domains permits the differentiation of stress that is primarily child related from that which is related to other aspects of parenting (Robbins, Dunlap, & Plienis, 1991). The QRS is a 285-item true-false measure designed to assess the possible pattern of parental stress.

Family Support

The most routinely used measure of family support was the Family Support Scale (Dunst, Jenkins, & Trivette, 1984). Again, less frequently reported measures of family support are referred to within the review. The Family Support Scale is an 18 item self-report scale measuring different sources of support (e.g., spouses, friends) that parents have found useful in rearing the young child with a disability (Dyson, 1997).

Precursors to Seeking Social Support

This section will address three topics related to mothers' inclination to pursue social support. First, it will examine the particular characteristics mothers possess that lead them to seek social support. Second, it will concentrate on how the characteristics of the child with autism interact with those of the mother to further influence her decision to obtain social support (and perhaps further limit her choices). Last, it will look at the negative effects that can accrue when social support is unavailable.

User Characteristics

User characteristics refers to those inherent qualities or external factors that persuade the mother to locate social support. One of the main precursors that lead mothers of children with autism to seek social support is the amount of stress they are experiencing as a result of rearing their child (Sharpley et al., 1997). A high level of stress in mothers of children with autism has been well documented (Bristol & Schopler, 1983; Koegel et al., 1992). Five studies were found that examined the characteristics of mothers of children with autism. Koegel et al. proposed that they have a "consistent stress profile" associated with rearing the child. This conclusion was based on a study that involved 50 mothers across cultural and geographic environments who had children of different ages and functioning levels. All mothers in the study were found to be stressed according to the QRS. Elevated stress levels due …