It is well established that mothers of children with developmental and psychiatric difficulties are at risk for experiencing greater distress than mothers of typically developing children (Baker, Blacher, Crnic, & Edelbrock, 2002; Dumas, Wolf, Fisman, & Culligan, 1991; Hauser-Cram et al., 2001; Hodapp, Ricci, Ly, & Fidler, 2003; Johnston et al., 2003; Rodrigue, Morgan, & Geffken, 1990). Several studies suggest mothers of children with autism spectrum disorders (ASD) may experience higher levels of distress than mothers of children with other disabilities (e.g., Gallagher & Bristol, 1989). For example, mothers of children with ASD have demonstrated lower psychological well-being and coping compared with mothers of children with Down Syndrome, Fragile X and cerebral palsy (Abbeduto et al., 2004; Blacher & McIntyre, 2006; Eisenhower, Baker, & Blacher, 2005; Kasari & Sigman, 1997). Mothers of children with ASD also report higher stress and depressive symptoms compared with mothers of children with broadly defined developmental delay (Dumas et al., 1991). Two studies found comparable stress levels in mothers of children with ASD and externalizing disorders (Donnenberg & Baker, 1993; Dumas et al., 1991), but no study to date has found a group of mothers with higher distress levels than mothers of children with ASD. This work has contributed to our understanding of family processes and has provided evidence suggesting mothers of children with developmental disabilities, particularly autism, maybe at risk for a range of challenges to their psychological functioning.
Mothers face unique challenges related to characteristics of children with ASD. Specifically, autism, unlike other forms of developmental disability, impairs social relatedness, which may be emotionally painful for mothers. Many, but not all, children with ASD also exhibit very unusual language and communication patterns, such as stereotyped speech, and odd and ritualistic behaviors. Such behaviors may pose difficulties for mothers when they spend time with their children in public situations, especially when uninformed people may misunderstand or misinterpret the child’s behaviors. Thus, characteristics of children diagnosed with ASD may account for increased maternal stress. Alternatively, higher levels of distress in mothers of children with ASD might not be primarily related to the unique challenges associated with ASD. It may be characteristics common to children with a range of developmental disabilities, such as the presence of problem behaviors and impaired adaptive functioning, are present to a higher degree in children with ASD. It may be increased levels of these common child characteristics, and not autism specific characteristics, lead to increased stress in mothers of children with ASD.
There is mixed evidence regarding the contribution of child problem behaviors and impaired adaptive functioning to increased maternal distress. In terms of problem behaviors, research by Konstantareas and Homatidis (1989) found that self-injury was the strongest predictor of parental stress in a sample of 44 children with autism. This finding is consistent with studies of children with non-autistic developmental disabilities in which problem behaviors have emerged as the most consistent child-related source of parental distress (e.g., Baker et al., 2002; Beck et al., 2004; Hauser-Cram et al., 2001; Hodapp et al., 2003). Recent studies have also suggested that this pattern may be present in mothers of children with ASD (Abbeduto et al., 2004; Blacher & McIntyre, 2006; Dumas et al., 1991; Hastings & Brown, 2002). Another potential child characteristic that may contribute to increased parent stress is impaired adaptive functioning. Parents of children with lower daily living skills (a specific facet of adaptive behavior), may face increased child-rearing responsibilities. For example, children with lower daily living skills need greater assistance with a range of basic activities, from dressing, to bathing, to toileting. These increased demands may lead to increased parenting stress or psychological distress. However, evidence is mixed regarding the relationship between adaptive function and parental distress. Two studies have reported that better adaptive functioning in children is associated with increased maternal well being (Fitzgerald, Birkbeck, & Matthews, 2002; Tomanik, Harris, & Hawkins, 2004). Two studies report no association between parental stress and adaptive skills (Beck et al., 2004; Lecavalier, Leone, & Wiltz, 2006). In the current study, we assessed both child daily living skills and child problem behavior, in addition to child diagnosis, as potential contributors to maternal stress.
The discussion thus far has centered on understanding child characteristics as contributors to maternal parenting stress and psychological distress. However, findings may vary depending upon how parenting stress and psychological distress are measured. For example, Rodrigue, Morgan and Geffken (1990) found that parental stress was higher in parents of children with ASD compared with children with idiopathic developmental delay and typical development, but only on certain dimensions of parental stress. Perceived parental competence and marital satisfaction were lower in parents of children with ASD, but self-blame and disruption of finances and activities were equivalent in the ASD and DD groups. No group differences in family cohesion and mother child interaction were found between groups. Beck and colleagues (2004) found that mothers of children with general delays did not have higher levels of depression or anxiety compared with normative samples, but they did have high parenting-related stress. Greenberg and colleagues (2004) found no differences in overall level of optimism, depression, well being or health among mothers of adult children with autism, Down syndrome and schizophrenia. However, mothers of children with Down syndrome reported closer relationships with their children and correlates of parental stress differed by group.
The present study was designed to investigate the relative contribution of child characteristics including diagnosis, problem behavior, and adaptive functioning, to increased maternal parenting stress and psychological distress in mothers of children with autism. We compared mothers of children with autism to mothers of children with developmental delay without autism to control for unmeasured, general factors associated with raising a child with a disability. The two groups were matched on both cognitive ability and age, allowing inferences about child-related factors that may be related to increased parent stress over and above general child developmental level. We also paid careful attention to the diagnostic status of participating children. We directly evaluated all children in the ASD and DD groups and utilized the research criteria recommended by the NICHD Collaborative Programs for Excellence in Autism (CPEA) to determine diagnostic status (see Method section for detailed description). Prior research on maternal stress has not always distinguished between autism and other developmental disabilities (e.g., Beck, Daley, Hastings, & Stevenson, 2004; Bristol, Gallagher, & Holt, 1993). When prior research did distinguished between autism and other disabilities the diagnostic criteria and diagnostic methods used were often not comparable to current diagnostic criteria and methods. This study will allow investigation of the phenomenon of increased maternal stress in autism using current diagnostic criteria and methods and will directly investigate child characteristics that may contribute to this phenomenon. We measured maternal stress in two ways; first, as it relates to parenting (referred to as “parenting stress” in this paper) and second, as psychological distress (a combination of depressive and anxiety symptom scores on the BSI) in mothers.
The study hypotheses are (1) parenting stress and psychological distress will be higher in mothers of children with ASD compared with mothers in the DD group, (2) children in the ASD group will have increased problem behavior and decreased daily living skills compared with the DD group, and (3) child problem behaviors will be more strongly related to maternal parenting stress and psychological distress than child daily living skills within both the ASD and DD groups.