Abstract
Resilience plays a pivotal role to offset stress among families of children with autism spectrum disorder (ASD). Although the majority of previous studies investigated resilience in parents, it is unclear what factors contribute to resilience in children. Thus, we aimed to explore resilience experienced by parents of children with ASD and how it affects children’s resilience. We invited 50 parents of a child with ASD, 13 years old or younger, across various Canadian provinces in an online survey. Parental resilience was positively associated with household income and negatively associated with parental stress. Resilience in children with ASD was positively associated with their social participation at home and community. Findings indicate a relationship between resilience in children with ASD and their participation, suggesting new ways to increase resilience in children with ASD by enhancing their participation.
1. Introduction
Autism spectrum disorder (ASD) is a neurodevelopmental disorder affecting 1 out of 59 children [1]. This disorder is identified by early demonstration of social communication deficits in addition to repetitive and restrictive behaviours and interests [2]. Given the long-term need for behavioural interventions and rehabilitation services for individuals with ASD, parents and caregivers of children with ASD usually face an economic and personal burden in providing resources for their child.
For parents, it is often difficult to predict their child’s behaviour due to the unique expression of the disorder and communication patterns [3]. As a result, parents raising children with ASD experience significant levels of stress that may impact family functioning [4]. Social support such as family emotional support can help reduce parental stress [3]. Financial support is another important consideration for parents as children with ASD require more support in the form of therapeutic services and caregiving than neurotypically developing children [5]. Given the life-long nature of ASD, parents of children with ASD experience high levels of stress and anxiety [4]. The ability to be resilient, that is persevering successfully through adversity, enables parents to maintain a functioning family, reduce stress levels, and better support the child [6].
Resilience is often defined as a dynamic process encompassing positive adaptation within the environment. Resilience can include the cumulative effect of personal attitudes, beliefs, and skills, enabling individuals to be successful in the face of adversity [7, 8]. According to the theoretical framework about resilience, individuals’ resilience is determined based on how well they can balance both risk and protective factors [8, 9]. Several models including ABC-X model or double ABC-X model can provide frameworks to identify factors that determine the relationship between stressful events and crises in families. The stressor event (A), the resources available (B), the family’s perceptions of the stressor (C), and the likelihood of crisis (X) can help analyze stress and coping within families [10]. The resiliency model of family stress, adjustment, and adaptation describes a family’s ability to adapt to their adverse situation based on their resources including the family, social and community support, and coping abilities [11]. In a collaborative model of resilience, the contribution of systems in the community, family, and other groups assists in developing resilience among individuals and can help support their wellbeing [12–14].
Resilient parents are receptive to the ongoing needs of the child with the disability [15]. However, several risk factors including symptom severity or difficulty level, the number of children with ASD, financial difficulty, and marital quality may contribute to the parental stress and their resilience [16]. Behaviours supporting resilience were often observed to be related with family cohesion, parental acceptance, dyadic parent unity, and parental positive engagement [17, 18]. It has been shown that self-reported parental stress can be mediated by perceived level of resilience [16, 19]. Parents who see themselves as able to cope with parenting challenges report lower stress levels [20, 21].
Resilience is not only critical for parents of children with disabilities, but for children with ASD to be able to navigate and thrive in an ableist world. Having a developmental disability such as ASD decreases social participation and may lead to negative life outcomes [22]. Furthermore, children with ASD are more likely to experience peer exclusion and bullying, which may result in reduced social activities. Both the number of friends and ability to sustain friendships are usually reduced in children with autism, further limiting social engagement [23]. Combined with the intrinsic challenges of living with a disability, living in an unstable and stressful environment may only exacerbate those challenges. As parents become more resilient, empowering their children with ASD to persevere through adversity, may result in stronger resilience skills for the child.
Although previous literature has explored resilience in parents, there is very limited information about resilience in children with ASD. As parents develop skills to increase resilience and improve family functioning, resilience in the child with ASD might develop concurrently. The objective of this study was to explore stress and resilience experienced by both parents of children with ASD and their children. We were interested in identifying factors that may promote resilience in children and parents and what, if any, connection exists between a parent’s level of resilience and their child’s level of resilience. Given the effects of social participation on emotional wellbeing, we hypothesized that social participation in children with ASD is positively associated with children’s resilience. Furthermore, we hypothesized that parental stress level can negatively affect their resilience.
