Parents are often overwhelmed by the challenges presented by a child with an autism spectrum disorder (ASD). Research has shown that parents of children with ASD exhibit a characteristic stress profile which includes anxiety related to the child's uneven intellectual profiles, deficits in social relatedness, disruptive and maladaptive behaviors (internalizing and externalizing problems) and long-term care concerns. Among these stressors, the child’s maladaptive behavior profile is most reliably linked to parent stress. Studies also indicate that raising children with ASD is associated with higher levels of parenting stress and psychological distress than parenting typically developing children, children with a physical disability, or children with developmental delays without ASD. Mothers, in particular, appear to face unique challenges related to the characteristics of ASD. Because autism impairs social relatedness and adaptive functioning, parent stress can decrease helpful psychological processes and directly influence the parent or caregiver’s ability to support the child with disabilities.
Increased attention is now being given to the psychological well-being of parents of individuals with ASD. A number of studies have examined the factors that can influence the impact of children’s problem behavior on parent mental health. A recent study appearing in the Journal Autism examined the relationships between child problem behavior, parent mental health problems, psychological acceptance (e.g., accepting and not being adversely influenced by negative emotions and thoughts that a parent may have about their child), and parent empowerment (e.g., actively attempting to change or eliminate potentially stressful events through the application of knowledge and skills).
The participants included 228 parents of children diagnosed with ASD aged 6–21 years old (81.5% boys; mean age = 11.80, SD = 3.58). Children’s diagnoses, as reported by parents, included Asperger Syndrome (54%), high functioning autism (14%), PDD-NOS (13%), and autism (19%). Roughly 77% of these children were placed in full-inclusion classrooms. Most parents were female (93%) and the child’s biological parent (93%). Parents completed an online survey assessing social competence and problem behaviors, severity of autistic traits, negative life events, psychological acceptance, family empowerment, and psychological distress.
The researchers found that the more positive parents’ psychological acceptance and empowerment, the less they reported severe mental health problems. Although greater parent empowerment was associated with fewer parent mental health problems, psychological acceptance had the greatest impact on parent mental health problems, after controlling for ASD symptomatology, negative life events, parent and child gender, and child age. As child problem behavior increased, parent psychological acceptance decreased, resulting in an increase in parent mental health problems. These results suggest that problems that are persistent, stressful and not easily managed via an active problem solving approach may negatively impact the individual’s process of psychological acceptance, which in turn can lead to reduced adjustment.
This study has several important implications. The relatively chronic nature of behavior problems in children with ASD may explain why acceptance is a more significant psychological construct for explaining parent mental health than is empowerment. If difficulties are manageable and support readily available, then an active, problem-focused coping style would be related to improved parent adjustment. However, for children with ASD who exhibit more persistent behavior problems, or for highly stressed and frustrated parents, a problem-focused process may not be enough to ensure positive parent adjustment. If problems are less controllable and/or support less accessible, it may be impossible for parents to focus exclusively on trying to change or avoid their current experience. The authors comment, “In these situations, parents need a different coping strategy, one that allows them to acknowledge their current experience without trying to change it or avoid it.” Therefore, it may be critically important to understand and evaluate the situation of the family, and offer parents both types of coping skills (acceptance and empowerment) for use across different situations.
Importantly, this study supports the exploration of acceptance and mindfulness-based interventions as effective approaches for parents of children with ASD and underscores the importance of considering the parent psychological experience when developing treatments for child problem behavior. The authors conclude, “Child-focused therapy should not focus exclusively on the child. At the same time that we provide parents with skills and supports to improve their children’s experience, we must also invest in helping parents to deal with their own emotions and coping strategies.” Further research is needed to investigate the effectiveness of such interventions, and other parent-focused therapies, with controlled designs and large, diverse samples of parents.
Weiss, J. A., Cappadocia, M. C., MacMullin, J. A., Viecili, M., & Lunsky, Y. (2012). The impact of child problem behaviors of children with ASD on parent mental health: The mediating role of acceptance and empowerment. Autism, 16, 261-274. DOI: 10.1177/1362361311422708
The online version of this article can be found at http://aut.sagepub.com/content/16/3/261
Lee A. Wilkinson, PhD, CCBT, NCSP is author of the award-winning book, A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools, published by Jessica Kingsley Publishers.