Understanding perceptions underlying the self-reported stress among parents of adolescents with autism spectrum disorder: Considerations for supporting families

Highlights

• In 214 parents of teens with ASD, perceived support, symptom predictability, and treatment beliefs were related to parents’ stress.

• Positive coping did not moderate the relationship between these perceptions and parents’ stress.

• How parents think about their adolescents’ ASD and within-family support may inform parenting stress interventions.

Abstract

Background

Parents raising adolescents with autism spectrum disorder (ASD) often report higher stress than other parents. The influence of parents’ internal, or cognitive, experiences (i.e., their own perceptions) on this elevated stress has yet to be explored. Addressing this gap may reveal opportunities for enhancing support for families by elucidating malleable targets for reducing parents’ self-reported stress and/or informing family-focused intervention. The Double ABCX Model of Family Adaptation is a framework for understanding how perceptions, social support, and personal resources (i.e., coping) may affect stress.

Methods

We examined parents’ perceptions about ASD, perceived support, and coping among 214 parents of adolescents with ASD. Regression analyses were used to explore whether these factors were associated with parenting stress among those raising adolescents with ASD. Moderation effects of positive coping on the relationship between parent perceptions and parenting stress were also explored.

Results

Parent perceptions about within family support, the extent of ASD symptom predictability, and treatment being able to ‘control’ ASD were related to parenting stress. However, positive coping did not moderate the relationship between these perceptions and parenting stress.

Conclusions

Study findings emphasize significant associations between specific parental perceptions and the self-reported stress among families of adolescents with ASD. Particularly important to parenting stress were how much parents’ perceived adequate support within the family, that treatment was useful for controlling their adolescent’s ASD, and that their adolescent’s symptoms were predictable. These findings suggest that the way parents think about their adolescents’ ASD and the adequacy of the support within their own families are associated with parenting stress, and therefore may serve as treatment targets for positively affecting whole family outcomes, as well as foundations for additional research.

Introduction

Adolescence poses numerous parenting challenges among those raising typically developing teenagers, and parenting demands during this stage are compounded when an adolescent has autism spectrum disorder (ASD). ASD core symptoms (i.e., social communication deficits, restricted interests/repetitive behaviors), along with associated emotional and behavioral problems, can affect not only the diagnosed adolescent but also their family. Moreover, while some ASD symptoms may change with age, the diagnosis represents a chronic condition and impairment persists across the lifespan (Shattuck et al., 2007). For these reasons, having a child with ASD creates unique caretaking challenges, and parents tend to experience high levels of stress at all stages of their children’s lives. To best support families, researchers and practitioners must understand whether parent stress is associated with malleable features that could represent risk (i.e., those associated with higher stress) and protective (i.e., those associated with lower stress) factors, particularly as adolescents transition toward adulthood. In this study, we tested specific parent perceptions related to parenting stress that could be the target of prevention and intervention programs for parents of adolescents with ASD.

Studies have consistently demonstrated that parents of individuals with ASD report high levels of stress (Griffith, Hastings, Nash, & Hill, 2010; Karst & Van Hecke, 2012; Kissel & Nelson, 2014; Weiss, Cappadocia, MacMullin, Viecili, & Lunsky, 2012). In fact, Hayes and Watson (2013) found significantly higher stress in these families compared with stress of parents raising typically developing children or children with other disabilities (e.g., Down syndrome, intellectual disability). Multiple and interrelated factors may contribute to this parenting stress, which may differ depending on a child’s age. For example, among parents of children under 4-years-old with ASD, perceived diagnostic severity was more predictive of parents’ stress than were behavior problems. Conversely, for parents with school-age children (i.e., ages 5- to 15-years), stress was more strongly associated with child behavior problems than with ASD severity (Osborne & Reed, 2009). Similarly, behavior problems exhibited by adolescents were a strong and consistent predictor of maternal distress (Abbeduto et al., 2004). While Hassall, Rose, and McDonald (2005) also found behavior problems predicted elevated parenting stress among those raising children and adolescents ages 6–16 years with intellectual disability, these researchers’ findings emphasized the strong role of parent perceptions in predicting parents’ stress.

Parents of all adolescents, including those with ASD, must navigate issues related to puberty and address their children’s needs for increased independence. Specific issues that can present challenges for families of teens with ASD include youths’ desire and need for increased privacy, issues related to sexuality, maintaining personal hygiene, and safety concerns (Koegel, Detar, Fox, & Koegel, 2014), as well as protection from exploitation and needs related to social relationships (Cadman et al., 2012). While these concerns are common among parents of typically developing adolescents, ASD-related symptoms such as social difficulties and emotional and behavioral dysregulation may further complicate the family’s situation. By the time a child with ASD has reached adolescence, the chronic nature of parenting stress (i.e., “wear and tear” over time) may lead to increased perceived burden of parenting, higher levels of intrapersonal distress, and more negative mood states (Cadman et al., 2012; Morgan, 1988; Smith, Seltzer, Tager-Flusberg, Greenberg, & Carter, 2008).

How families respond to their children’s needs, including parents' approach to coping, can also be related to positive outcomes in families of those with disabilities, including empowerment, social involvement and accessing social support, and distribution of caregiver burden (Daire, Dominguez, Carlson, & Case-Pease, 2014; Singer & Powers, 1993; Smith et al., 2008). Parents who use active coping methods, such as educating others about their child’s disability and planning for the future may have lower stress and expressed depression (Digryte & Baniene, 2017; Hall et al., 2012). Importantly, differences in the coping methods used (e.g., problem-focused versus emotion-focused) are seen in parents of younger children compared with those of teens, and active or problem-focused coping is a better predictor of personal well-being compared with emotion-focused coping (Smith et al., 2008; Vernhet et al., 2018). Since a family’s collective ability to adapt in response to stress is influential on child outcomes (Baker, Seltzer, Greenberg, & Kaslow, 2011; Orsmond, Lin, & Seltzer, 2007), it is critical that professionals working with these families understand factors that may contribute to or protect against parenting stress.

In addition to coping, perceptions of adequate social support is a key protective factor against stress for parents of those with ASD (Derguy, M’Bailara, Michel, Roux, & Bouvard, 2016). Dunst, Trivette, and Cross (1986) broadly categorized social supports as either formal or informal. Social support can include emotional support (i.e., conveying esteem and acceptance), informational support (i.e., aiding in understanding and coping by providing information), social companionship (i.e., spending time with others), and instrumental support (i.e., providing material resources or services) (Cohen & Wills, 1985). Adequate social support has been associated with lower parenting stress overall, as well as with higher life satisfaction (Bristol, 1987; Lu et al., 2015; Paynter, Riley, Beamish, Davies, & Milford, 2013), while a lack of social support predicts poorer parent well-being and mental health outcomes (Boyd, 2002; Ingersoll & Hambrick, 2011). Moreover, the types of social support available to and used by families vary, and support from family and friends (i.e., informal support) has been identified as particularly helpful to parents because it has been associated with reduced parenting stress (Shepherd, Goedeke, Landon, & Meads, 2020) and improved quality of life (Marsack & Samuel, 2017).

Access to social support is related to lower stress and aspects of family adaptation, such as marital adjustment and parenting quality. However, parents’ perceptions about the helpfulness of social support may vary not only depending the type of support, such as informal support aforementioned, but also on their child’s age and, therefore, the needs of the child (Bristol, 1987; Tehee, Honan, & Hevey, 2009). Specifically, Tehee et al. (2009) found that parents of young adolescents aged 11-to-14 years perceived social support as significantly more helpful compared with parents of older adolescents (15-to-18-years) or young children (3-to-6-years). However, in another study, mothers of adolescents and adults with ASD reported higher anxiety when lacking informal support in the form of having fewer supportive persons in their social network (Barker et al., 2011). Findings such as these illustrate the complex and age-related relationships among various contributors to parenting stress.

McCubbin and Patterson’s (1983) Double ABCX Model of Family Adaptation is a theoretical model that helps conceptualize how a variety of factors, such as coping and social support, relate to family adaptation. Families’ perceived strain results not just from specific stressors or events (e.g., a child being diagnosed with a disability), but also from the “pile up” or accumulation of a variety of stressors over time. Studies applying the Double ABCX Model to parenting stress in ASD have examined the role that parent cognitive appraisals (i.e., parents’ perceptions of the impact that the child’s ASD has on their lives) may play in overall family outcomes. For example, the model has been used as a framework for examining relationships between positive adaptation and parents’ sense that their environment is predictable and understandable (McStay, Trembath, & Dissanayake, 2014; Pozo, Sarriá, & Brioso, 2014; Siman-Tov & Kaniel, 2011); positive perceptions of stressors (i.e., perceived positive aspects of having a child with a disability) (Paynter et al., 2013); or reframing stressors (Manning, Wainwright, & Bennett, 2011). While use of the Double ABCX framework to understand parent perceptions related to ASD makes a unique contribution to the literature, few studies have examined how parent perceptions may vary at different stages in the child’s life.

Among non-ASD populations, studies within the health-related literature examining adults’ illness perceptions have identified associations between perceptions and specific emotional, behavioral, and health outcomes such as the use of particular coping strategies, psychological well-being, social functioning, and vitality (Hagger & Orbell, 2003; Van Erp et al., 2018). Though ASD is not considered by most as an ‘illness’, it is a chronic condition with lifelong challenges associated with the diagnosis (American Psychiatric Association, 2013). For this reason, approaches used for studying perceptions related to chronic illness may be useful when working to understand parents’ ASD-related perceptions. Leventhal’s widely used Self-Regulatory Model of Illness Representation (Leventhal, Nerenz, & Steele, 1984; Leventhal, Leventhal, & Cameron, 2001) provides a useful framework that can be applied to research regarding how parents’ perceptions about their child’s ASD bidirectionally influences their coping and treatment-seeking behaviors. Components of this model include knowledge about the chronic condition itself, as well as perceived cause, consequences or impact, timeline or course, and curability and controllability. When using this model, many similarities emerged between how parents perceive ASD and how they conceptualize other chronic illnesses (Mire, Tolar, Brewton, Raff, & McKee, 2018).

Using the Illness Perception Questionnaire-Revised (IPQ- R; Moss-Morris et al., 2002) adapted for ASD (IPQ-R-ASD), parents’ illness perceptions were found to contribute to their information-seeking and treatment choices for their children with ASD (Al Anbar, Dardennes, Prado-Netto, Kaye, & Contejean, 2010; Mire, Gealy, Kubiszyn, Burridge, & Goin-Kochel, 2017). Similarly, when a shortened version of the IPQ-R (B-IPQ; Broadbent, Petrie, Main, & Weinman, 2006) was used, Gatzoyia et al. (2014) found correlations between several parental illness perceptions and their depressive symptoms and psychological distress. Taken together these findings highlight the importance of understanding parents’ perceptions when working to better support families raising youth with ASD. It is unclear, however, which specific parental perceptions may contribute to parenting stress among parents facing the unique challenges of raising teenagers with ASD. These are important to identify as a first step to developing and testing approaches that may mitigate the harmful effects of stress.

Little is currently known about the influence of parents’ perceptions on the elevated stress common among those raising adolescents with ASD. Addressing this gap represents an opportunity to target malleable factors (i.e., perceptions) that may contribute to self-reported stress among parents. More specifically, it is possible that decreased parent stress could affect child and whole-family outcomes, yet a first step is understanding contributors to parenting stress in this population that may be viable intervention points. Relatedly, given the unique demands and stressors faced by parents of adolescents, research is needed to better understand how parents’ perceptions about their adolescents’ ASD, perceptions of available social support, and parents’ own coping may relate to the parenting stress experienced during this stage of their children’s lives. Exploring these interrelated factors was the purpose of the current study. Two specific research questions were investigated:

• Are parents’ perceptions about their adolescents’ ASD diagnosis and parents’ self-reported perceptions about their social support related to parenting stress? We expected that parents’ perceptions about their ability to control their children’s ASD symptoms and the predictability of their children’s symptoms would be negatively related to parenting stress, based on previous health-related literature linking similar perceptions to health outcomes such as psychological well-being (Hagger & Orbell, 2003; Van Erp et al., 2018). Additionally, we expected parents’ perceptions of informal support (e.g., family support, social support) to be negatively related to parenting stress, as these types of support have been associated with positive parent and family outcomes among parents of children with ASD (Cohen & Wills, 1985; Shepherd et al., 2020; Tehee et al., 2009).

• Does parents’ positive coping moderate the relationship between parent perceptions about ASD and parenting stress? We expected that active coping would moderate the relationships between specific perceptions and parenting stress. This was hypothesized because coping approaches may “buffer” the negative impact of specific perceptions on parenting stress since parents’ use of active coping methods have been associated with lower parenting stress (Digryte & Baniene, 2017; Hall et al., 2012).