Abstract
Parents of children with autism spectrum disorders (ASD) experience higher levels of stress than parents of typically-developing (TD) children, due to differences in their children’s emotional functioning. The COVID-19 pandemic exacerbated the cognitive and practical demands on vulnerable populations and their families. The aim of this study was to examine parenting stress levels in parents of children ASD and TD children, considering the children’s emotional functioning (i.e., anxiety and cognitive emotion regulation strategies), and stressful life events deriving from the COVID-19 pandemic. The study involved 64 parent–child dyads comprising children from 7 to 16 years old, divided into two groups: 32 (26 M) children and adolescents with ASD but no intellectual disability, and 32 (26 M) with typical development. Our results show that parents of children with ASD reported higher levels of stress, but factors relating to the child and the context had a different influence on parenting stress in the ASD and TD groups. The higher level of parenting stress in the ASD group seemed to relate more to the children’s emotional characteristics, while the TD group was more affected by the unpredictable stressful events prompted by COVID-19. Families’ mental health should be considered a core aspect of supporting parents having to deal with both their child’s emotional adjustment and the challenges of the COVID-19 pandemic.
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Introduction
Children with autism spectrum disorders (ASD) struggle to manage their behavior, to communicate, and to establish social relations with their parents and other people (Al-Oran & Khuan, 2021) because social and communication deficits are characteristic of their condition (APA, 2013). Several studies identified more severe socio-communication impairments linked to higher levels of parenting stress (Allen et al., 2013; Batool & Khurshid, 2015; Hall & Graff, 2011; Rivard et al., 2014), although others failed to find such an association (Estes et al., 2009; Giovagnoli et al., 2015).
Parenting stress has been defined as a negative feeling prompted by the demands of parenting when they exceed an individual’s resources (Abidin, 1995), prompting them to adopt coping mechanisms to deal with their discomfort (Lazarus, 1966). Parenting stress can affect personal wellbeing, as well as family functioning, in the sense of supportive relationships between family members (Johnson et al., 2011). It can be caused by multiple factors relating to children’s and parents’ emotional functioning, and by contextual factors (Abidin, 1995; Östberg & Hagekull, 2000). Families in which a child has a diagnosed neurodevelopmental disorder experience more stress than other families, due to the manifestations of the child’s particular physical needs and/or social dysfunction (Seltzer et al., 2004). The difficulties associated with raising a child with ASD have been well documented. Several studies on parents of individuals with ASD identified higher levels of stress than in parents of TD children, who seem better able to deal with parenting stress (Hayes & Watson, 2013). In their meta-analysis, Hayes and Watson (2013) used a random effects model, and found that the mean effect size of the difference in stress levels between parents of children with ASD and parents of TD children was 1.58, which is large according to Cohen’s guidelines (Cohen, 1992). Higher general stress levels have been reported in mothers of children with ASD than in those whose children had other conditions, such as undifferentiated developmental delays or genetic syndromes (Eisenhower et al., 2005; Estes et al., 2009).
Apart from their social deficits and problem behaviors, children with ASD reportedly also have numerous internalizing problems, such as cognitive emotion regulation issues or anxiety (Rieffe et al., 2011; White et al., 2014). Emotion regulation concerns the ability to manage experienced and expressed emotions in order to complete goal-directed actions (White et al., 2014). The ability to modulate our own emotions adaptively is a prerequisite for controlling behavioral outcomes, social interactions, and psychological health (Raza et al., 2021). The way in which our minds manage emotionally arousing information can be described as a “cognitive emotion regulation strategy” (Thompson, 1991). It is a rational approach to adjusting our way of thinking in order to manage our behavior and solve problems. Cognitive emotion regulation strategies may be adaptive and maladaptive (Garnefski et al., 2001). Emotion regulation approaches are negatively associated with externalizing behavioral problems, such as conduct problems and hyperactivity (Walton & Flouri, 2010). Children with ASD reportedly have weaker adaptive cognitive coping strategies when they have to deal with negative life events (Rieffe et al., 2003, 2011). Internalizing and externalizing regulatory difficulties have consequently been found to reliably predict general stress levels in parents of children with ASD (Hastings, 2003; Lecavalier et al., 2006). Daily care activities may be complicated by maladaptive emotional control and anxiety, with mothers of children with ASD reporting more severe stress relating to their child’s poor self-regulation skills (Davis & Carter, 2008). Parenting stress can also influence a child’s regulatory behavior and emotions as a result of inappropriate parenting practices including emotional rejection, unsupportive behavior, controlling methods, and harsh discipline (Denham et al., 2000; Rapee, 1997). Parents’ coping strategies are also associated with their levels of parenting stress relating to their child’s functioning (Rivard et al., 2014). To avoid emotional problems and anxiety in children and adolescents, it would be useful to know if the family system might be a source of anxiety. Parents of children with anxiety issues usually have high levels of anxiety themselves (Turner et al., 1987), giving rise to a two-way interaction: children with severe anxiety and emotional dysregulation elicit stress in their parents; this parenting stress prompts a parental behavior that exacerbates the child’s anxious behavior and recourse to maladaptive affective regulation strategies as a way to cope with stressful situations (McLeod et al., 2007). This vicious circle has observable effects on the family system, preventing members from developing effective communications, and assertive behaviors with one another, for example. On the other hand, a well-functioning family can be a great source of support for parents, especially during a crisis (Johnson et al., 2011). That said, the role of parenting behaviors in causing, sustaining or containing a child’s emotion dysregulation still needs to be fully understood.
The literature on stress suggests that life events characterized by a large magnitude, high intensity, long duration, and unpredictability tend to represent the most stressful conditions for humans (Rabkin & Struening, 1976). This is the case of the COVID-19 pandemic that began in 2019, which has been disrupting societies worldwide for more than two years. Common psychological reactions to mass quarantine measures, rising numbers of new cases, and anxiety-inducing information delivered by the media led to people suffering a deterioration in their emotional control, social relations, and psychological wellbeing (Serafini et al., 2020). The COVID-19 pandemic added to the burden on parents’ cognitive and practical resources, partly due to problems with health and social care services, and to the closure of schools. Social interactions were limited, so parents could not draw on the help of grandparents or nannies in caring for their children, nor could they benefit from the live emotional support of friends. Most parents had to take time off work, unless they could work from home, and some lost their jobs as a result of the economic and financial crisis brought on by the pandemic (Moscardino et al., 2021). Children had to deal with the disruption to their everyday routines (e.g., home schooling, the closure of sports centers), and suffered from social isolation and loneliness (Loades et al., 2020; Crisci et al., 2021). Along with the impact of the COVID-19 pandemic on both parents and children, any lack of parental involvement to help their children deal with their affective reactions would have exacerbated the latter’s emotion dysregulation. Parents who committed to managing their child’s internalizing and externalizing behaviors during the pandemic may have been able to provide them with more emotional support (Spinelli et al., 2021). Looking at the other side of the coin, more emotionally adjusted children were found associated with parents with better strategies for coping with the pandemic, in the sense that mindful parents succeeded in translating their children’s strengths into positive parenting dispositions (Moran et al., 2022).
Vulnerable populations, such as individuals with mental health issues or disabilities and their caregivers, have been more affected than those with no physical or psychological impairments (Thorell et al., 2022). Some studies reported high levels of stress and disruption to life during the pandemic in people with ASD and their families (Manning et al., 2021). Children and adolescents with ASD find it particularly difficult to deal with novel situations that oblige them to change their routines to adapt to environmental demands (APA, 2013). Unexpected events prompt different schedules that can feed their anxiety (Clark et al., 1999). While the daily life of children with ASD has been particularly affected by the COVID-19 pandemic, a distinction has to be made within the autistic spectrum. ASD form a heterogeneous group of conditions characterized by different symptoms with different levels of severity, distributed along a continuum from mild to severe. People at the mild end of the spectrum have a normal intellectual functioning, less severe symptoms, and fewer behavioral issues. Recent studies indicate that children with ASD who have more frequent and intense disruptive behaviors were likely to suffer more from the challenges imposed by the COVID-19 pandemic (Colizzi et al., 2020). The lack of healthcare and support due to lockdowns affected these children more severely, and their parents struggled to deal with it. Children with mild forms of ASD and no intellectual disability are more adaptable, rarely need healthcare services, and their caregivers consequently reported becoming less stressed (Colizzi et al., 2020; Manning et al., 2021; Mumbardó-Adam et al., 2021).
Understanding the complex mechanisms behind the onset and persistence of parenting stress might prevent caregivers from establishing maladaptive coping strategies and ineffective behavioral responses. Greater levels of parenting stress might be triggered by children’s difficulties with regulating their feelings, and by their disruptive behaviors (Hastings, 2003; Lecavalier et al., 2006). The children’s emotional functioning should therefore be the focus of attention, and supported with appropriate interventions to modify any dysfunctional strategies, especially in the case of children with neurodevelopmental disorders. On the other hand, negative parenting practices (e.g., emotional rejection, controlling methods) should be discouraged in favor of an understanding and open attitude to a child’s needs (Denham et al., 2000; Rapee, 1997). More flexible interactions between family members leads to a better understanding of the strengths and weaknesses of their relationships, not only helping to reduce parenting stress, but also empowering positive dispositions and emotional control in relation to any negative contextual factors (such as the stressful life events caused by a pandemic). In the present study we examine factors relating both to the child and to the context that might lead to parental burnout, also looking at whether (and how) they have a different role and make distinct contributions in families with autistic children.
The present study
The aim of this study was to examine factors associated with parenting stress in primary caregivers of children with ASD with no intellectual disability (ID), as compared with TD children. We specifically planned to investigate: (a) differences in the levels of parenting stress between parents of children and adolescents with ASD without ID and parents of TD children, also considering the children’s characteristics (anxiety and cognitive emotion regulation strategies) and contextual factors (stressful life events relating to the COVID-19 pandemic); (b) the relationship between these children’s characteristics and contextual factors with the two groups under comparison (ASD, TD), and how their effects might be associated with parenting stress.
Based on previous findings (Al-Oran & AL-Sagarat, 2016; Al-Oran & Khuan, 2021; Baker-Ericzén et al., 2005; Keenan et al., 2016; McStay et al., 2014), we expected parents of children with ASD to show higher levels of stress than parents of TD children. As regards the influence of contextual factors associated with the COVID-19 pandemic on parenting stress, we expected caregivers of children using health services more intensively before the pandemic (Manning et al., 2021), and parents of children with more severe and frequent behavioral difficulties (Colizzi et al., 2020) to experience more stress. As our clinical ASD group included children with no ID (from the mild end of the spectrum) and their parents, we did not expect the stressful life events prompted by the pandemic to significantly affect parenting stress in this clinical group. Recent findings indicate that most families with autistic children SD reported that their offspring coped better than expected with lockdowns, as it gave them a chance (and more time) to empower communication, participation, autonomy, and family cohesion (Mumbardó-Adam et al., 2021).
On the other hand, we expected parents’ psychological wellbeing to have been more influenced by their child’s emotional functioning in the ASD group because more severe problems with emotion regulation have been found to predict higher levels of general stress in parents of children with ASD than in parents of TD children (Davis & Carter, 2008; Hastings, 2003; Lecavalier et al., 2006).
Methods
Participants
The study involved 64 parent–child dyads, with children between 7 and 16 years old, divided into two groups: 32 (26 M) children and adolescents with ASD but no ID, and 32 (26 M) matched TD children. The TD group for comparison consisted of healthy children with no psychiatric, neurological or neurodevelopmental disorders. They were enrolled and examined individually at school. The clinical group was enrolled via local community contacts, at centers specializing in neurodevelopmental conditions. All participants in the clinical group had been previously diagnosed with ASD according to the DSM-IV-TR or DSM-5 (APA, 2000, 2013) or ICD-10 (WHO, 1992) criteria. Diagnoses of ASD were also confirmed by administering the Autism Diagnostic Interview - Revised (ADI-R; Rutter et al., 2005). Only participants who scored above the cut-off on the three modules of the ADI-R, including social development, communicating ability, and repetitive behavior, were considered. Children with ASD who were taking medication, or with other known genetic conditions, neurological diseases, comorbid psychopathologies or physical disabilities were excluded. All participants were native Italian speakers, and none had any visual or hearing impairments. Participants were only included in this study if they achieved a standard score of 80 or more for total IQ on the Wechsler Intelligence Scales (WISC IV; Wechsler, 2003).
The children in the two groups did not differ statistically in terms of chronological age [F(1, 62) = 0.19, p = .85; Cohen’s d = 0.05], gender distribution [26 M, 6 F for each group], or total IQ [F(1, 62) = -1.09, p = .27; Cohen’s d = − 0.27]. A summary of the participants’ characteristics is shown in Table 1.
Materials
Parenting stress
The Parenting Stress Index, Fourth Edition, Short Form (PSI-4 SF; Abidin, 2012) is a 36-item measure used to explore parental stress levels, considering parents’ relationship with their children. Due to the nature of this multidimensional construct, the tool is divided into three 12-item, empirically derived domains: Parental Distress (PD), Parent-Child Dysfunctional Interaction (PCDI), and Difficult Child. A total stress scale is obtained from the sum of all three subscales. Responses to 7 items are summed to obtain a Defensive Responding score, which may suggest caution in interpreting the scores obtained on the subscales. Participants respond on a 5-point Likert scale (1 = strongly agree, 2 = agree, 3 = unsure, 4 = disagree, 5 = strongly disagree). Raw scores are considered: the higher the score, the higher the level of parenting stress. Cronbach’s alpha = 0.89 (for the total score).
Child’s anxiety
The parent’s version of the Multidimensional Anxiety Scale for Children (MASC-2; March, 2012) was administered. This is a 50-item questionnaire that generates a total score, and scores on six subscales: Separation Anxiety, Generalized Anxiety Disorder (GAD), Social Anxiety (consisting of Humiliation/Rejection, and Performance Fears), Obsessions and Compulsions (OCD), Physical Symptoms (consisting of Panic, and Tense/Restless), and Harm Avoidance. The scale goes from 0 (never) to 3 (often). Raw scores are converted into T scores using normative data that take the child’s age and gender into account. This tool also comprises an Inconsistency Index that identifies potentially unreliable ratings by comparing scores on eight item-pairs with the highest bivariate inter-item correlations from the development sample. The total score (Cronbach’s alpha = 0.92) was considered for the present study.
Child’s emotion regulation
A self-report scale was developed ad-hoc for this study to assess nine conceptually distinct cognitive emotion regulation strategies (CERS) based on the Garnefski et al. (2001) model: four negative (Self-blame, Other-blame, Rumination, Catastrophizing), and five positive (Putting into Perspective, Positive Refocusing, Positive Reappraisal, Acceptance, Planning). The tool includes 18 social stories that elicit a negative emotion (i.e., fear, sadness, and anger). For each story, there are four possible answers, two representing positive emotion regulation strategies, and two representing negative strategies. There are 36 positive and 36 negative strategies in all. Children have to choose two of four possible answers that reflect what they would have thought or done in a given scenario. One point is awarded for each positive strategy they choose (e.g., Acceptance), and 0 for each negative one (e.g., Rumination). The higher the score, the better a child cognitively regulates their emotions. Here is an example of a social story: “Your gym teacher names two of your classmates to form two handball teams. You get picked last. You are sad. What do you think about it? (a) You have not been picked because you are no good at sport (Self-blame); (b) Your classmates are mean (Other-blame); (c) From now on, you will work harder, so that you will be chosen next time (Planning); (d) It’s not important to be picked right away (Acceptance)”. Cronbach’s alpha = 0.70.
Stressful life events related to the COVID-19 pandemic
We used an adapted version of the List of Threatening Experiences Questionnaire (LTE-Q; Brugha & Cragg, 1990; Moscardino et al. 2021) to assess parents’ stressful experiences in the previous six months (e.g., ‘death of a loved one’, ‘major physical injury’), with four additional pandemic-specific items (e.g., ‘fear of contracting COVID-19’). Parents were asked to report whether they had experienced any of these events using a dichotomous scale (1 = yes, 0 = no), with higher scores indicating exposure to more stressful experiences. The higher the score, the more numerous the pandemic-related stressful life events affecting family functioning. Cronbach’s alpha = 0.72.
Procedure
All children and adolescents attended a screening session to assess their total IQ on the Wechsler Intelligence Scales (WISC IV; Wechsler, 2003). Only participants who had an IQ of 80 or higher were selected to take part in the study. The diagnoses of ASD were confirmed by applying the Autism Diagnostic Interview—Revised (ADI-R; Rutter et al., 2005). In a second phase, children individually completed the CERS questionnaire at the place where they were enrolled. The session lasted about 25 min, and was managed using a laptop computer with a 15-inch LCD screen to facilitate sanitizing procedures because of the COVID-19 risk. Parents completed questionnaires implemented in Qualtrics (Qualtrics, 2005) online. The study was approved by the research ethics committee at the University of Padova (Italy), and all parents had given their prior written consent to their children’s participation by signing an informed consent form.
Statistical approach
First, a series of univariate ANOVAs were performed to estimate differences between the groups in the measures of interest (see Table 2). Effect sizes were also computed for all tasks, using Cohen’s d, which expresses the effect size of the pairwise comparisons between the groups for the factors considered.
Second, a hierarchical linear regression analysis was conducted to investigate the association between the dependent variable (parenting stress index; PSI) and the hypothesized predictors (child’s age, group [ASD vs. TD], child’s scores in the cognitive emotion regulation strategies [CERS] questionnaire, and Multidimensional Anxiety Scale for Children 2 [MASC], stressful life events related to COVID-19 [LTE-Q-m]). In the first model we included group-matching variables (i.e., age, and IQ) as predictors; in the second model we included age, IQ and Group; and in the third we added MASC and CERS, and LTE-Q-m. The interactive effect of Group (i.e., ASD, TD) with MASC and CERS, and LTE-Q-m was included in the fourth model. The R-square (and R-square adjusted) was computed. The best model was selected using information-theoretic (I-T) approaches, considering the Akaike information criterion (AIC), and the relative likelihood (l) of each model (Burnham et al., 2011). The AIC is an estimator of prediction error and therefore of the relative quality of statistical models for a given set of data, whereas l compares the relative plausibility of different candidate models. The AICs, Δ°AICs, and l s were computed for each model. The model with the highest AIC minimizes the estimated information loss. The Δ°AICs reflect the difference in AIC with respect to the full model (M0). The closer l comes to 1, the more the model is conceivable, and l = 1 indicates that a model is the most plausible.
The data were analyzed using R version 1.3.1093 (R Core Team, 2015). The “lme4” package was used to run the regression (Bates et al., 2015), and the “ggplot2” package to obtain the graphical effects (Wickham, 2009).
Results
Preliminary analyses
Descriptive statistics and statistical comparisons between the two groups (ASD and TD) are presented in Table 2. The two groups differed statistically on PSI, F(1, 62) = 2.84, p = .006, Cohen’s d = 0.71, and MASC, F(1, 62) = 3.68, p < .001, Cohen’s d = 0.92, with higher scores for the ASD group. No significant differences between the groups emerged for CERS or LTE-Q-m. Additional descriptive results of the correlation analyses by group revealed significant correlations for the ASD group between PSI and MASC, r = .35, p = .04, PSI and CERS, r =-.71, p < .001, and CERS and MASC, r =-.50, p = .003. For the TD group, significant correlations emerged between PSI and MASC, r = .36, p = .04, and between PSI and LTE-Q-m, r = .56, p < .001.
Hierarchical regression analysis
To investigate the association between the parenting stress index (PSI) and the hypothesized predictors, we adopted the above-described model selection strategy. As shown in Table 3, our model fitting procedure revealed that the best-fitting model was Model 4: PSI∼ Age + IQ + Group + CERS + MASC + LTE-Q-m 9 + Group*CERS + Group*MASC + Group* LTE-Q-m (AIC = 154.28, Δ°AIC = 32.42, l = 1). Taken together, our variables in the best fitting model accounted for 57% of the variance calculated using the R-squared (Adj R-squared = 49%), adding around 53% of variance to the first model which included only Age and IQ, and 42% when Group was added in the second model. Regarding the main effects, only CERS, t= -4.96, p < .001, was significantly associated with PSI: higher scores for children’s adaptive emotion regulation strategies were related to lower levels of parenting stress. Two interaction effects were found statistically significant: between Group and CERS, t = 2.70, p = .009; and between Group and LTE-Q-m, t = 2.47, p = .01. More specifically, as shown in Fig. 1, higher scores for children’s adaptive emotion regulation strategies coincided with lower levels of parenting stress in the ASD group, but not in the TD group. Instead, higher ratings for stressful life events associated with the COVID-19 pandemic were related to a higher level of parenting stress in the TD group, but not in the ASD group. No other statistically significant main or interactive effects emerged.
Significant interaction effects of Group*Child’s emotion regulation, and Group*Stressful-life events related to the COVID-19 pandemic for the best-fitting model, with the parenting stress index as the dependent variable. Error bands represent 95% confidence intervals.
Parenting stress = PSI (Parenting Stress Index 4 short-form); child’s emotion regulation = CERS (Cognitive emotion regulation strategies); stressful-life events related to the COVID-19 pandemic = LTE-Q-m (List of Threatening Experiences Questionnaire-modified)
Discussion
The present study aimed to investigate stress in parents of children and adolescents with ASD without ID, by comparison with parents of TD children. The different role of a child’s regulatory problems (anxiety and cognitive emotion regulation strategies) and contextual factors (stressful life events relating to the COVID-19 pandemic) in predicting parenting stress was also examined.
As regards our first aim, we found that parents of children with ASD experienced significantly higher levels of stress than parents of TD children. Our results are in line with previous empirical findings (for a meta-analysis see Hayes & Watson, 2013). The demands of raising a child with social and communication impairments, and behavioral problems may exceed parents’ resources, leading to higher levels of stress (Allen et al., 2013; Batool & Khurshid, 2015; Rivard et al., 2014). Parenting stress might have multiple causes, such as the child’s functioning, but also contextual factors (Abidin, 1995; Östberg & Hagekull, 2000). As reported by Hastings (2003), the most common child-related factors that can cause stress in parents of children with ASD are the severity of their children’s disability (intellectual functioning, adaptive skills, care needs), and their internalizing and externalizing behaviors. We found a significant difference in the anxiety levels of children with ASD compared with TD children, with the former presenting more severe symptoms of anxiety, as frequently reported in previous studies (Gillott et al., 2001; Kim et al., 2000). Co-morbid anxiety often interferes with daily functioning in children and adolescents with ASD (MacNeil et al., 2009). On the other hand, our analysis did not suggest that the ASD group’s cognitive emotion regulation strategies were less effective than those of the TD group. This is probably because our clinical sample only included autistic children and adolescents without ID, with mild behavioral impairments, and quite good adaptive skills. As for the contextual factors influencing parenting stress levels, no significant differences emerged between our two groups regarding stressful life events related to the COVID-19 pandemic. This is probably because the ASD individuals involved in our study do not routinely need the healthcare or other services that became unavailable during lockdowns. Our findings are therefore likely to reflect a less severely stressful situation than in families of children with poor adaptive functioning (Colizzi et al., 2020; Manning et al., 2021), and this is a matter that would need to be examined in further studies.
As regards our second aim to distinguish between the contributions of child-related and contextual factors to parenting stress, we found that: weaker adaptive emotion regulation strategies in the child were associated with higher stress levels in the parents in the ASD group, but not in the TD group; but the COVID-19 pandemic is likely to have major effects on stress for parents in the TD group than for those in the ASD group.
In other words, the parents of children with ASD would be more affected by their child’s regulatory characteristics than by stressful life events. Examining the relationships between the difficulties of children with ASD and parenting stress levels is central to understanding the parents’ experience. As children with ASD grow up, their parents have to learn how to cope with negative feelings and stress relating to their child’s changing difficulties and care situations. They have to develop the ability to ignore sources of stress unrelated to their child’s needs. Parents of children with ASD are undoubtedly more involved in their child’s emotional development because individuals with neurodevelopmental conditions need more attention and support than their TD peers (Chiri & Warfield, 2012). Like many earlier reports (Davis & Carter, 2008; Hastings, 2003; Lecavalier et al., 2006), our findings show an association between the ability of children with ASD to emotionally self-regulate and parenting stress levels. Previous studies (for a recent review see Al-Oran & Khuan, 2021) showed that common symptoms of ASD that have to do with emotion regulation (e.g., behavioral problems) strongly increase parental strain. Such children’s emotion dysregulation is likely to have been exacerbated by the challenges posed by the COVID-19 pandemic, and this could have added to their parents’ stress and their ability to cope with the pandemic (Moran et al., 2022).
Our findings showed instead that parents of TD children were more severely affected by contextual stressful life events relating to the pandemic than parents in the ASD group. Parents of TD children may have found the pandemic more stressful because they had to balance the demands of personal life, work, and family without any outside help, and adapt their routines (Spinelli et al., 2021). Parents of children with ASD might be more resilient, and emotionally and practically better prepared to deal with ambiguities and social barriers that every family experienced with the COVID-19 pandemic. Parents of children with ASD have to deal with negative social outcomes, hostile environments, and uncertainty every day (Broady et al., 2017; Caronna et al., 2007). Their focus on their child’s difficulties might empower them to use defense strategies against unpredictable and uncontrollable events like the COVID-19 pandemic. Parents of children with developmental difficulties may also have seen the more positive effects of home-schooling during the pandemic, which could involve fewer conflicts, more flexibility in managing schoolwork, and less anxiety due to peer rejection and academic worries (Thorell et al., 2022). Our findings, like those of Mumbardó-Adam et al. (2021), suggest that families had more opportunities to interact with their children and adolescents with ASD. Parents could spend more time with them, communicating better and teaching them new skills. In short, although families were all obliged to develop new strategies to deal with pandemic lockdowns, those with an autistic child may have been better prepared than families with TD children, in which difficulties are not on the daily agenda. The combination of a more positive attitude in the autistic children with their parents’ opportunity to pursue family cohesion during lockdowns could have protected these families from the stress related to the pandemic.
Despite the novelty and significance of our findings, some limitations of the present study need to be taken into account. The small sample size of our study prevents us from generalizing our findings to the whole population of ASD without ID. Further studies on larger samples could also conduct more sophisticated analyses to investigate other variables potentially influencing the relationships between an autistic child’s characteristics, contextual factors, and parenting stress. The smaller proportion of female participants in our sample also prevented us from conducting any gender-specific analyses. Future studies should try to collect larger numbers of females with ASD in order to examine whether the children’s gender influences parenting stress levels. Finally, the stressful effect of the COVID-19 pandemic was only assessed in the parents involved in our study. Further research should compare children’s and parents’ experiences relating to such stressful life events.
Our findings point to some important policy implications for the future. During lockdowns, all of our families benefited from having more time to interact with their children, but parents of TD children experienced more parenting stress as well as the stress prompted by the pandemic. Some parents may struggle to cope with such situations of uncertainty, and the demands of their parental role may exceed an individual’s resources. Although the pandemic would have meant they had more time to carry out their daily activities at home, parents might feel overwhelmed by their family duties when confined within the walls of their home and isolated from the outside world. Parenting stress levels might consequently have risen more steeply for people who usually spend less time at home. In practical terms, the pandemic lockdowns prompted a rapid increase in families’ unstructured free time, so it might be useful to educate both adults and children to manage their leisure activities (e.g., sport) more independently, but also to focus on virtual learning opportunities. A key factor for preventing negative psychological consequences of unexpected contextual life events for parents may be to focus on how they deal emotionally with their ordinary duties, not only in emergencies. Clinical and educational practices aimed at empowering parents and children, enabling them to develop more positive dispositions and to regulate their emotions, could help them to cope with negative contextual factors (Spinelli et al., 2021).
Parents of children with neurodevelopmental disorders are generally more involved in their child’s care. Their more intensive parenting role has been found to protect them to some degree against unpredictable negative events like the COVID-19 pandemic (Spinelli et al., 2021). Stress levels in parents of autistic children have been found more related to the child’s emotional adjustment, confirming these families’ need for greater support from services and society in general (Hastings, 2003; Lecavalier et al., 2006). Although people with ASD were considered at greater risk of suffering emotional (and also physical) consequences of the COVID-19 pandemic, services for these people were difficult to access. Needs-based support services often postponed the assessments needed for a formal clinical diagnosis. Community-based non-profit care centers experienced greater financial instability, and many of them had to close permanently. That said, some outpatient and in-home services quickly converted to providing telehealth care, which has proved a valid form of support for many families with autistic children, and is still ongoing (Baweja et al., 2022). Telehealth has been considered as a more flexible, alternative way to provide individual and family therapies, addressing emotional, cognitive and behavioral difficulties at all stages of life (Griffiths et al., 2006; Myers et al., 2008). Policy recommendations should therefore include the mandatory availability of alternative healthcare for families with autistic children to provide psychosocial support in the event of an emergency. State funding should be allocated for this type of treatment, and provide health personnel with proper insurance coverage, psychological support, and continuing professional education so that they can effectively manage stress-related issues in individuals with ASD. Media communications should address the discomfort that families (both with and without children with ASD) might have experienced during such a situation of uncertainty as the pandemic, also informing the public about how to cope with anxiety and negative feelings (Li et al., 2020). Finally, meaningful collaborations between families, caregivers, and health experts should be pursued to maximize the potential of these good policy recommendations (Baweja et al., 2022).
In conclusion, our findings suggest that, although parents of children and adolescents with ASD experienced higher levels of stress, the children’s characteristics and contextual factors played a different role in our ASD and TD groups. Parents of children and adolescents with ASD seemed to experience more stress relating to their child’s emotional characteristics, while parents of TD children were more stressed by the fallout of COVID-19 pandemic. We may need to prepare for further, long-term negative effects deriving from the COVID-19 pandemic on levels of parenting stress. Families’ mental health should be seen as a primary issue, as parents need support in dealing with the challenges of balancing the demands of work and family when such uncontrollable life events occur (such as having to quarantine due to contact with COVID-positive individuals) (Spinelli et al., 2021).
Data Availability
The datasets generated and/or analyzed as part of the present study are available from the corresponding author on request.
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Lievore, R., Lanfranchi, S. & Mammarella, I.C. Parenting stress in autism: do children’s characteristics still count more than stressors related to the COVID-19 pandemic?. Curr Psychol 43, 2607–2617 (2024). https://doi.org/10.1007/s12144-023-04441-3
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DOI: https://doi.org/10.1007/s12144-023-04441-3