All parents experience stress as they attempt to meet the challenges of caring for their children. Being a parent can bring much joy and excitement yet this also comes with great responsibility and many challenges. The demands of parenting include meeting children’s needs for survival like feeding, sheltering, and protection, but also include psychological demands for attention, affection, and help in controlling or regulating emotions. These demands can produce parenting stress which can be defined as “a set of processes that lead to aversive psychological and physiological reactions arising from attempts to adapt to the demands of parenthood” (Deater-Deckard, 2004, p.6). Adapting to the demands that come with parenting is a long-term, day-to-day obligation that is required in caring for and raising a typically developing (TD) child. However, how do the demands and resulting stresses change when faced with the responsibility of raising and caring for non-typically developing child, specifically a child who has been diagnosed with autism spectrum disorder (ASD)? And, how important is developing strategies to cope with the stress associated with the adaptations needed to care for a child with ASD?
Parenting stress is an expected and normal experience when it comes to caring for a child. However, much higher stress levels have been found in parents of children with ASD than that of parents caring for and raising a child without developmental disabilities (Steijn et al. 2014). ASD is considered by the American Psychiatric Association as a complex neurodevelopmental disorder characterized by persistent alterations in communication and social interaction and by the presence of stereotyped patterns of behavior, activities, and interests (2013). The demands and responsibilities placed upon parents coping with this complex disorder results in varying degrees of stress encompassing areas of their children’s functioning that are difficult to manage. The Autism Parenting Stress Index (APSI) is a tool that was designed to evaluate the parental stress as observed by the parent of a child with ASD. The APSI reflects the physical, social, and communication barriers imposed by the disability. The items on this test fall into three categories: the core social disability, difficult-to-manage behavior, and physical issues. The test is designed to indicate how much stress parents are experiencing and what factors are causing this stress (Silva & Schalock, 2012). Aside from simply evaluating the level of stress experienced by parents, the APSI also helps to identify areas where parents need support in developing strategies to cope with the higher levels of parenting stress that comes with caring for a child with ASD.
One study using the APSI (Silva & Schalock, 2012) found that parental stress related to caring for a child with ASD was four times that of parents with TD children. It was noted that they also experience more stress not only compared with parents of typically developing children, but also compared with parents of children with other developmental disabilities. Factors contributing to higher stress levels came as a result of parents’ fear for their children’s future, as ASD often reduces a child’s chance at independence, disapproval by others of the child’s behavior, difficulty in communicating with their child, lack of sufficient professional help as well as dealing with general behavioral problems associated with ASD (Pisula & Kossakowska, 2010). These stress-inducing factors are in addition to the typical stresses that come with caring for a child. Not only do parents of children with ASD have higher levels of stress, they also report lower levels of adaptive coping and resources than parents of children with typical development (Lee et al. 2009).
Coping strategies refer to a group of behavioral or cognitive efforts aimed at reducing stress levels, and they are considered a tool parents can use to adapt to the stressors associated with raising a child with ASD. Stressed parents who develop successful coping strategies not only provide a benefit to themselves, but also to the child with ASD. One study examined the bidirectional effects between parenting stress and child functioning in families of children with ASD (Rodriguez et al. 2019). It was found that parents who were stressed by their child’s ASD symptoms caused an increase in the severity of these symptoms. In turn, the increase in severity of symptoms causes even more stress for the parent. This points to the fact that effective coping strategies are essential in order to minimize the potentially detrimental effects of parenting stress. One study (Lyons & Leon, 2009) evaluated the different types of coping strategies that parents of children with ASD could utilize in order to minimize not only their own stress level but that of the child. These strategies were categorized as task-oriented coping (i.e., strategies that attempt to solve a problem, reconceptualize a problem, or minimize the effects of a problem), emotion-oriented coping (i.e., emotional responses, self- preoccupation, and fantasizing reactions), and avoidance-oriented coping, including social diversion (i.e., strategies that involve avoiding a stressful situation by seeking out others), and distraction (i.e., engaging in a substitute task). The study found that, depending of the severity of their child’s ASD symptoms, two strategies proved effective at dealing with parenting stress. Parents who rated their child’s ASD symptoms as more severe were successful in lowering their stress level by applying distraction coping strategies which involved engaging in pleasurable activities or tasks. Parents who rated their child’s ASD symptoms as less severe found their stress levels lowered by applying the social diversion strategy which involved connecting with others (i.e. family, friends, social groups) in an effort to avoid stressful situations by placing themselves in a non-stressful environment. Both of these strategies allowed the parents to re-enter the family feeling less stress.
The number of children diagnosed with ASD and related disorders has increased dramatically over the past 3 decades. It is estimated that 1 in 150 children have an autism spectrum disorder, including autistic disorder, pervasive developmental disorder and Asperger syndrome (Zablonsky, 2015). The challenges imposed on parents caring for these children are much greater than those faced by parents raising a typically developing child. With these challenges come and increase in parenting stress which has been found to affect the family as a whole. It is important that parents faced with the unique challenges of caring for and raising a child with ASD seek out interventions to help them develop effective coping strategies to ensure that that their own wellbeing, as well as the developmental wellbeing of their children, are not compromised.
References
Deater-Deckard, K. D., & ebrary, I. (2004;2006;). Parenting stress. New Haven: Yale University Press.
Lee, G. K., Lopata, C., Volker, M. A., Thomeer, M. L., Nida, R. E., Toomey, J. A., et al. (2009). Health-related quality of life of parents of children with high- functioning autism spectrum disorders. Focus Autism Dev. Dis. 24, 227–239.doi: 10.1177/1088357609347371
Lyons, A. M., Leon, S. C., Roecker Phelps, C.,E., & Dunleavy, A. M. (2010). The impact of child symptom severity on stress among parents of children with ASD: The moderating role of coping styles. Journal of Child and Family Studies, 19(4), 516-524. doi:http://dx.doi.org.ezaccess.libraries.psu.edu/10.1007/s10826-009-9323-5
Pisula, E., & Kossakowska, Z. (2010). Sense of coherence and coping with stress among mothers and fathers of children with autism. Journal of Autism and Developmental Disorders, 40(12), 1485-1494. doi:10.1007/s10803-010-1001-3
Rodriguez, G., Hartley, S. L., & Bolt, D. (2019). Transactional relations between parenting stress and child autism symptoms and behavior problems. Journal of Autism and Developmental Disorders, 49(5), 1887-1898. doi:10.1007/s10803-018-3845-x
Silva, L. M. T., & Schalock, M. (2012). Autism parenting stress index: Initial psychometric evidence. Journal of Autism and Developmental Disorders, 42(4), 566-574. doi:10.1007/s10803-011-1274-1
Steijn, D. J. v., Oerlemans, A. M., Aken, M. A. G. v., Buitelaar, J. K., & Rommelse, N. N. J. (2014). The reciprocal relationship of ASD, ADHD, depressive symptoms and stress in parents of children with ASD and/or ADHD. Journal of Autism and Developmental Disorders, 44(5), 1064-1076. doi:10.1007/s10803-013-1958-9
Zablotsky, B. (2015). Estimated prevalence of autism and other developmental disabilities following questionnaire changes in the 2014 National Health Interview Survey. Hyattsville, MD: U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, National Center for Health Statistics.