Resilience Within Families of Young Children with ASD

Resilience can be defined as the individual ability to quickly recover after an unpleasant incident, like a stressful parenting situation, it is a multifaceted construct, influenced by various biological, psychological, and social factors (Bateman et al., 2005; Tugade & Fredrickson, 2004). The concept of family resilience transcends the perspective of viewing individual family members as potential resources for personal resilience to parenting stress (Walsh, 2003). It emphasizes the examination of resilience within the family as a cohesive functional unit (Walsh, 2003). Individual- and family resilience are therefore particularly broad but different concepts, where using a framework such as the family resilience framework by Walsh (2003) can clarify. Given the gap in knowledge on individual and family factors contributing to resilience to parenting stress in young children with ASD, especially in fathers, separate research into factors that contribute to fathers' and mothers' resilience could be a first step after which resilience within families of the same young child can be explored.

Intrapersonal factors are the personal characteristics and factors of an individual that influence their actions, beliefs, and thoughts that contribute to their overall health and well-being (Harley et al., 2020). While there is robust literature on intrapersonal factors that can contribute to resilience (Joyce et al., 2018; Wu et al., 2013), and growing insight in resilience to parenting stress (Fang et al., 2024), when it comes to resilience to parenting stress in mothers and fathers of young children with ASD, studies are more limited (Bekhet et al., 2012; Ilias et al., 2018). Current literature indicates that mothers with good parenting efficacy, i.e., feelings of competency in their parental role, have been associated with well-being and positive parenting outcomes (Kuhn & Carter, 2006). Parenting efficacy was also positively associated to mother’s locus of control, i.e., the sense of control that mothers feel in their life/their capacity to influence their own thoughts and behavior and to be actively engaged with their child (Kuhn & Carter, 2006). The lack of parenting efficacy as well as maternal anger related to depression over time in mothers of toddlers with ASD(Carter et al., 2009; Ilias et al., 2018). Additionally, a low sense of coherence, reflecting parents’ view on life and capacity to respond to stressful situations, contributed to negative coping strategies in parents’, mostly in mothers of 3- to 7-year-olds with ASD (Pisula & Kossakowska, 2010; Siah & Tan, 2015). Also, frequent maternal anger, anxiety and worrying are associated to symptom severity in the child, stress proliferation, and increased negative thoughts in mothers of children with ASD aged 6–9-year-olds (Benson & Karlof, 2009). In summary, intrapersonal factors related to resilience to parenting stress in parents, mostly known in mothers of children with varying ages with ASD are parenting efficacy, locus of control, regulation of emotions and negative thoughts/worrying (Bekhet et al., 2012; Ilias et al., 2018).

Known contextual factors that contribute to parental resilience are the presence of social support, financial health, child’s age and ASD severity. Social support refers to the parents’ perception that they can be helped or understood by a close person (Siman-Tov & Kaniel, 2011). Social support, in most studies from family, friends or a significant other, has been identified as a protective factor in parenting stress in several studies, mostly in mothers of children with ASD in broad age ranges (2 till 21 years) (Ekas & Lickenbrock, 2010; Li et al., 2022; Siman-Tov & Kaniel, 2011; Tobing & Glenwick, 2007; Weinberg et al., 2021). Social support related to increased optimism, less stress, and fewer negative thoughts in mothers of children with ASD younger than 18 years (Ekas & Lickenbrock, 2010). Financial health was also a factor that was frequently reported to influence the level of stress among parents of children with ASD (Trentacosta et al., 2018). Also, the age of the child and ASD severity appear to be important, wherein parents with older children and lower ASD severity reported less parenting stress (McStay et al., 2013). Moreover, Kotera et al. (2020) emphasized the role of resilience within families as a contributing factor to the better coping capability of parents of children with ASD, suggesting that interventions aiming at enhancing resilience within families may positively impact parental well-being including reduced parenting stress (Kotera et al., 2020).

Parenting stress refers to the tension and pressure that parents experience while raising their child (Vermulst et al., 2015). Although a certain degree of parenting stress is desirable, chronic and/or overwhelming parenting stress may shift from a balanced mental and physical equilibrium, in which stress has a benefit of adaptation, toward distress: a feeling of extreme worry, sadness, or pain (Dijkstra-de Neijs et. al., 2020).

The importance of enhancing resilience within families to parenting stress is illustrated by the finding that mothers of children with ASD experience 1.5-times higher levels of daily parenting stress and that they present significant levels of stress-related mental and/or physical problems with elevated mortality hazard ratios compared to mothers of typically developing children (Dijkstra-de Neijs et al., 2020; Estes et al., 2009; Rezendes & Scarpa, 2011; Riahi & Izadi-Mazidi, 2012). Studies on paternal parenting stress reported varying results (Baker- Ericzén et al., 2005; Flippin & Crais, 2011; Grebe et al., 2021; Pisula & Porębowicz-Dörsmann, 2017; Rivard et al., 2014; Soltanifar et al., 2015). Relevant is that parenting stress in mothers and fathers seem to be different. Studies exploring the differences between parenting stress in fathers and mothers found varying results: some studies reported that fathers and mothers both experience high levels of parenting stress, others report that stress was only present in mothers (Baker-Ericzén et al., 2005; Flippin & Crais, 2011; Grebe et al., 2021; Pisula & Porębowicz-Dörsmann, 2017; Rivard et al., 2014; Soltanifar et al., 2015). Results within studies on the origins of parenting stress also vary, some studies show that both fathers and mothers experience the most parenting stress from the parent–child relationship, while other studies display that mothers experience more stress from their parenting role than fathers (Davis & Carter, 2008; Dijkstra-De Neijs et al., 2024). It was also reported that effects of parenting stress may affect mothers and fathers in different ways. Maternal parenting stress was related to disinhibited eating, abdominal obesity and metabolic syndrome. However, this association was not present in fathers (van der Lubbe et al., 2022).

The high risk for parenting stress among parents of young children with ASD, emphasizes the need consider parenting stress as a pathway to mental and physical health of both parents and the child. There is a need to understand parental resilience to stress in the context of raising a child with ASD. Given the limited literature available on stress and resilience to stress in fathers and mothers of young children with ASD, especially within the same family, the present study investigates family parenting stress i.e., do both parents within the same family with a young child with ASD experience parenting stress. In addition, we explore associated intrapersonal and contextual factors with fathers and mothers’ resilience.

The present study is a descriptive, correlational, cross-sectional study, assessing parental resilience in parents of young children with ASD. This study is part of the ongoing Tandem study (Dutch trial register: NL7534), approved by the Institutional Review Board of Leiden University Medical Center, the Netherlands (NL6378.058.18).

Parents were eligible for inclusion if 1) their child was diagnosed with ASD, and 2) the child was aged 3 to 7 years. Parents were recruited from Youz Parnassia Group, GGZ Delfland, and Yonx all mental health care providers in the Netherlands. Parents eligible for inclusion were asked by their child's psychologist for consent to be contacted by the research team shortly after their child being diagnosed with ASD. If parents agreed, contact details of the parents were passed on to the research team. The research team then screened the parents by telephone to verify whether they met the inclusion criteria and if they were willing to participate. If they did, an informed consent meeting took place where parents received detailed information about their study participation and signed an informed consent form. After informed consent, a research employee provided parents with a link with which they could enter explanation about the study and complete their questionnaires within Research Manager, a data management program. If parents had questions about the questionnaires, they could contact an employee of the research team by mail or telephone.

Parenting stress was assessed by self-report with the total parental stress scale from the Dutch parenting burden questionnaire (In Dutch: Opvoedbelasting Vragenlijst [OBVL] (Vermulst et al., 2015). The OBVL comprises out of 34 questions and uses a 1–4 response scale (1 = does not apply, 2 = does somewhat apply, 3 = does apply, 4 = totally does apply). Raw scores, used within the statistical analysis within this study, can be transformed into T-scores which give clinical meaning using norm tables, as presented by Vermulst et al. (2015). T-scores below 60 are seen in parents with a degree of desirable parenting stress, referred to in this article as ‘regular parenting’ stress. Scores of 60 < are interpreted as parents with moderate to severe parenting stress, which requires attention for the well-being of both parent and child and will be referred to in this article as ‘(sub)clinical parenting stress’. Explorative factor analysis has shown that the total parental stress scale within the OBVL is empirically demonstrated (Vermulst et al., 2015). The results of the factor analysis show that there is a good fit, which means that the theoretically assumed scales are also empirically confirmed (CFI = 0.965, RMSEA = 0.045) (Veerman et al., 2014; Vermulst et al., 2015). The norm population used within this study is the OBVL norm population (Vermulst et al., 2015). The norm population included data on 848 mothers of typically developing Dutch children (50.8% boys) from the general population (Vermulst et al., 2015). Within the literature it is common to use the Parental Stress Index (PSI) to operationalize parenting stress, with no Dutch version available we chose the OBVL, as the OBVL focuses mainly on characteristics of the parent in relation to upbringing and the quality of the parent–child relationship. This can be compared with the parent domain of the PSI (Abidin, 1983; Veerman et al., 2014; Vermulst et al., 2015).

To gain insight into factors that may contribute to resilience to parenting stress, we searched the literature with help of the search terms: ‘parenting stress', ‘parenting resilience', 'ASD', and resilience within families in the search engines PubMed and Google scholar with no time limit. The most recent peer-reviewed studies on resilience to parental stress are described within this study to gain insight into the current state of knowledge on this subject. To operationalize the factors, as found in our literature search, that contribute to resilience to parenting stress, we matched these factors to corresponding measuring instruments. For example, the factor 'locus of control' i.e., the degree to which people believe that they, as opposed to external forces have control over the outcome of things, was operationalized through the planning and organizing scale from the BRIEF-A. This scale measures the extent to which a person can manage current and future-oriented tasks, can anticipate to future events, can follow instructions, and achieve goals. The operationalized resilience factors are shown in Fig. 1. The corresponding measurement variables are further described below. To minimize the risk on a type II error we considered the research design by only adding variables from previous studies in line with our study i.e., studies on parents of children with ASD of older age and operationalizing them, which is visualized within Fig. 1, and by adding important covariates from previous literature that may influence errors within our analyses, such as ASD severity of the child. Subsequently we examined interaction effects and curvilinearity.

Parental planning & organizing, inhibition, and flexibility are subscales from the Behavior Rating Inventory of Executive Function-Adult questionnaire informant list (BRIEF-A) that measures an adult’s executive functioning at a descriptive behavioral level and is filled in by the other parent/partner, or a close acquaintance (Roth et al., 2011). Although the BRIEF-A is a questionnaire developed for screening executive functions in adults, at item level this is done by assessing daily behavior, i.e., adaptive functioning which emerge from a person’s underlying executive functions. The Planning & organizing scale measures the extent to which the adult can manage current and future-oriented tasks within a specific situation. The planning aspect concerns the ability to anticipate future events, follow instructions and achieve goals, and to devise in advance an appropriate step-by-step plan for carrying out an assignment or activity. The organizing aspect of this scale concerns the ability to organize information, actions, or materials to achieve a goal. The Inhibition scale measures the adult's inhibitory control, or the ability to inhibit, resist, or refrain from acting on impulses and the ability to stop certain behaviors at the appropriate time. The Flexibility scale measures the adult's ability to move smoothly from one situation, activity, or issue to another as circumstances require. Important aspects of this position are the ability to make transitions, solve problems flexibly, shift or alternate attention and shift focus from one mindset or topic to another (Roth et al., 2011). Exploratory factor analysis showed that executive functioning within the BRIEF-A can be demonstrated empirically, and the concept validity is good (Roth et al., 2011). The norm population used in this study is the Dutch BRIEF-A norm population, comprising 537 Dutch adults from the general population, age range 18–65 years (Roth et al., 2011). The raw scores on the above-mentioned scales were used in the analyses within this study.

The Emotion regulation scale from the BRIEF-A informant list concerns the manifestation of executive functions in the domain of emotions. This scale measures the extent to which an adult can modulate emotional responses. Weak emotion regulation can manifest itself in emotional lability or emotional explosiveness. To operationalize parental worrying, depressive thoughts, and internal positive cognitive appraisal the Depressive mood subscale from the Brief Symptom Inventory (BSI) was used (De Beurs, 2008) (Fig. 1). In this study the depressive mood subscale will be referred to as ‘worrying’, to clarify on whether there is actual psychopathology such as having a depression or parents are more worried/ruminate more on negative thoughts than other parents, the latter being what the depression subscale of the BSI measures. We find that worrying falls under the intrapersonal factors, as excessive worrying is related to gloominess or even depression which in turn is associated to maternal anger (Carter et al., 2009). The BSI is a self-report questionnaire which that provide insight into both psychopathological and psychological symptoms (De Beurs, 2008). Each item on the BSI is rated on a 5-point Likert scale, ranging from 0 ("not at all") to 4 ("extremely"). The BSI has been shown to have robust psychometric properties, with internal consistency coefficients ranging from 0.71 to 0.85 in its original administration. The norm population used in this study is the BSI norm population, comprising 1037 non-clinical adults above 18 years (Derogatis, 1993). The raw scores on the above-mentioned scales were used in the analyses within this study.

Social support and social economic status (SES) are assessed using parental self-report on the 'Social relationships’ and ‘Environment’ scale of the World Health Organization Quality of Life (abridged version) questionnaire (WHOQoL-BREF), (World Health Organization, 1996). The WHOQoL-BREF is a self-report questionnaire comprising 26 items with a 1–5 response scale (1 = not at all, 2 = almost not, 3 = average, 4 = pretty good, and 5 = completely). Internal consistency, item–total correlations, discriminant validity, and construct validity through confirmatory factor analysis indicate good to excellent psychometric properties of reliability and tests of validity (Skevington et al., 2004; Trompenaars et al., 2005). The social support scale comprises out of three questions on satisfaction with personal relations, sex life and social support from friends. The environment scale comprises eight questions on how satisfied a person is with the environment they live in. Literature recommends that normative values obtained in the general population serve as norm population (Fayers & Machin, 2007). Since Dutch general population norms are lacking, a cohort from the general Australian population (n = 396, 64% males, mean age of 48.2 years, sd = 17.3) assessed by Hawthorne et al. (Hawthorne et al., 2006) serves as norm group.

We used a cross-sectional study design to gain insight into factors contributing to resilience to parenting stress in parents of young children with ASD. We explored if the operationalized variables (Fig. 1) were normally distributed and were then compared with norm populations using the Chi square test.

To study the presence of family parenting stress i.e., do both parents in families with a young child with ASD experience parenting stress, we calculated percentages of families in which both parents experienced regular or (sub)clinical parenting stress, and in which family’s fathers reported regular, and mothers reported (sub)clinical, or fathers reported (sub)clinical and mothers reported regular parenting stress, measured with the T-scores from the OBVL total scale.

To study associated factors with maternal and paternal resilience, correlations were used. Variables that were significantly correlated with maternal or paternal parenting stress were included in two linear regression analyses using the enter method: one for fathers and one for mothers. Herein data from single/solo participating parents were included.

To explore which of these individual parental resilience factors relate to family parenting stress, a family parenting stress variable was created. The family parenting stress variable comprises the added raw scores of maternal and paternal parenting stress, measured with the OBVL total score, within the same family, or parents of the same young child with ASD. Herein data from single/solo participating parents were excluded. Variables that significantly relate to maternal or paternal parenting stress from the previous linear regression analysis are included as independent variables in a third regression analysis with family parenting stress as the dependent variable, when assumptions where met. Within this linear regression, we also examined whether, in addition to main effects, there could be interaction effects or curvilinearity. To examine interaction effects interaction variables were created by multiplying the independent variables with each other. A higher arc multiple regression analysis was than performed entering the independent variables in step one and the interaction variables in step two. Curvilinearity was examined by creating squared variables of the independent variables. A higher arc multiple regression analysis was than performed entering the independent variables in step one and the squared independent variables in step two.

A total of 249 individuals participated within this study comprising 74 families with data from both mother (n = 87) and father (n = 78) of the same child with ASD (n = 88, 80.4% boys). Although welcomed, within this study population there were no families present with other family makeups than single parent or one father and one mother. There were 13 single/solo mothers and 1 single/solo father. Mothers of young children with ASD had higher levels of parenting stress than mothers of typically developing children (χ²(2) = 85.7, p < 0.01). Mothers also showed more difficulties with their inhibition skills (χ²(2) = 13.8, p < 0.01) and experienced a poorer quality of their social relations (χ²(2) = 273.4, p < 0.01) and social economic status (χ²(2) = 106.9, p < 0.01) than women from the norm population. Additionally, mothers reported earning less compared to the Dutch female population (χ²(2) = 6.5, p < 0.05). Fathers were between 25 and 58 years old (Mean = 38.2, sd = 7.5). Fathers experience higher levels of parenting stress than mothers of typically developing children (χ²(2) = 141.1, p < 0.01). Fathers experienced a poorer quality on their social relations (χ²(2) = 124.8, p < 0.01) and social economic status (χ²(2) = 150.2, p < 0.01) than males from the norm population. Fathers reported earning more compared to the Dutch male population (χ²(2) = 12.48, p < 0.01) (Table 1). Children were aged between 3 and 7 years old (Median = 5, IQR = 2). Autism severity (ADOS-2) scores ranged from 1 (low ASD severity) to 10 (high ASD severity) (Median = 8, IQR = 3).

Of the 74 families in this study, in 32% of the families (n = 24) both mothers and fathers experienced regular parenting stress. In 36% of the families (n = 27) both mothers and fathers experienced (sub)clinical parenting stress. In 22% of the families (n = 16) fathers had regular and mothers (sub)clinical parenting stress an in 9% of the families (n = 7) fathers experienced (sub)clinical and mothers regular parenting stress compared to mothers of typically developing children within the same age group (Vermulst et al., 2015) (Fig. 2).

Mothers with less impulsivity (r = 0.24, p ≤ 0.05), better flexibility (r = 0.35, p ≤ 0.01), planning and organizing skills (r = 0.37, p ≤ 0.01), emotion regulation (r = 0.34, p ≤ 0.01) and less worrying (r = 0.31, p ≤ 0.01) related to lower maternal parenting stress. Mothers’ greater satisfaction with their social relationships (r = -0.42, p ≤ 0.01) and their social economic status (r = -0.26, p ≤ 0.05) related to lower maternal parenting stress.

Fathers with better emotion regulation (r = 0.27, p ≤ 0.05) and less worrying (r = 0.48, p ≤ 0.01) related to lower paternal parenting stress. Correlations were also found between the degree of fathers’ satisfaction with their social relationships (r = -0.52, p = < 0.01) and their social economic status (r = − 0.44, p ≤ 0.01) and paternal parenting stress (Table 2).

The variables that contributed to parenting stress from the previous linear regression analyses for mothers and fathers all correlate with family parenting stress; fathers’ worrying (r = 0.36, p ≤ 0.01) and satisfaction with his social relations (r = 0.55, p ≤ 0.01), mothers’ panning & organizing skills (r = 0.30, p = 0.01) and satisfaction with her social relations (r = 0.48, p ≤ 0.01). In the family parenting stress regression analysis, the enter method was used wherein the variables fathers’ depressive mood, fathers’ satisfaction with his social relations, mothers’ panning & organizing skills, and mothers’ satisfaction with her social relations, were entered. Results show that 49% of the variance in family parenting stress could be explained by fathers’ and mothers’ satisfaction with their social relations (fathers: F(5,61) = 11.88, p = 0.05; mothers: F(5,61) = 11.88, p ≤ 0.01). There is no interaction effect or curvilinearity (Table 4).

We included a large group of individuals (n = 249), comprising mothers (n = 84) and fathers (n = 74) of young children with ASD (n = 88) of which 74 families comprised data on the mothers and fathers of the same young child with ASD. Specifically, we assessed not only the individual parent, both mothers and fathers, but also the combined resilience of the family, in which mothers and fathers of the same young child with ASD were incorporated. This contributes to the robustness of our findings and provides a more dynamic view on parenting stress in families with young children with ASD, concerning the entire family, including the well-being of the child(ren).

There are also limitations within this study as the current study used a cross-sectional design, thus changes over time could not be observed. Also, although the operationalization of resilience to parental stress has been carefully done, resilience is a very broad concept, so the measured variables within this study may not be all-encompassing. Additionally, this study examines resilience from a psychological perspective which leads to new insights into this concept but still leaves questions regarding the underlying mechanisms between resilience, parenting stress and the physical health of parents of young children with ASD, as within this group also high risks on stress related diseases are present (Dijkstra-de Neijs et al., 2020). Finally, we would like to add that families within this study were not asked their preferences for autism terminology. The choice to use the APA terminology (ASD) comes from the research team.

In addition, future research might benefit from a more comprehensive approach on factors contributing to resilience within families to parenting stress in families with young children with ASD. For instance, by including physical parameters, providing a more holistic insight into mental and physical stress and resilience factors.