Supporting caregivers: Enhancing parental well-being through resources for autism care in school-based family counselling

Abstract

Despite the rise in autism diagnoses and the growing need for parental support, few studies have examined how a sense of control reduces distress. This study explored relationships between social support, sense of control, stress, anxiety and loneliness among parents of children with Autism Spectrum Disorder (ASD), with implications for school-based family counselling. A cross-sectional study with 96 parents of children with ASD aged 6 to 12 years used questionnaires assessing stress, social support, sense of control, anxiety and loneliness. Data analysis employed Pearson’s correlation and stepwise regression. Results confirmed negative relationships between social support, sense of control, stress, loneliness and anxiety. Higher levels of social support and sense of control were linked to lower stress, anxiety and loneliness. Sense of control emerged as a key predictor of distress, explaining 25% of the variance beyond demographic factors. Social support, while helpful, did not significantly enhance the model when sense of control was included. Fostering a sense of control is essential in reducing distress among parents of children with ASD. Findings inform strategies for school-based family counsellors to strengthen personal and social resources, enhancing parental well-being.

Keywords

Autism spectrum disorder (ASD)parental stress sense of control social support well-being school-based family counselling

Introduction

Autism Spectrum Disorder (ASD) is a neurodevelopmental condition characterized by repetitive behaviours, restricted interests and difficulties with communication and social interaction, and is typically diagnosed in early childhood (American Psychiatric Association, 2013; Lira Rodriguez et al., 2022). Parents of children with autism face unique challenges, including heightened stress due to communication barriers and the constant need for care, which can negatively affect their mental and physical well-being (Lai et al., 2015; Mello et al., 2022). This stress is influenced by internal factors such as a sense of control and external factors such as social support (Falk et al., 2014; Weinberg et al., 2021). Anxiety and loneliness often exacerbate this distress (Mak & Kwok, 2010). The Conservation of Resources (COR) framework (Hobfoll et al., 2002) highlights that stress arises when individuals perceive a threat to or loss of critical resources, such as social support or a sense of control. This framework underscores the vital role these resources play in mitigating stress and improving well-being while explaining how their depletion can heighten anxiety and loneliness.

School-based family counselling offers a crucial platform for addressing these challenges, particularly in supporting parents of children with ASD. By integrating evidence-based strategies into schools, counsellors can help parents strengthen internal resources like a sense of control and external resources like social support, mitigating stress and promoting well-being (Hess et al., 2011; Sheridan et al., 2016). Research demonstrates that collaborative school-family partnerships not only enhance parental resilience but also contribute to improved child outcomes by fostering supportive and inclusive environments (Lusse et al., 2019). The present study builds on this framework, contributing to the field of school-based family counselling by highlighting actionable insights to support parental well-being.

Despite the growing prevalence of autism in Israel, limited research has explored the experiences of students with Autism Spectrum Disorder (ASD) within the educational system. According to the National Association for Children with Autism (ALUT), the prevalence of autism in Israel is 1 in 100 children, which is consistent with rates reported in the United States (Dromi et al., 2018). Furthermore, the ratio of boys to girls diagnosed with autism in Israel is also similar to that found in the United States (Dromi et al., 2018). While many students with autism attend regular schools under inclusive education policies, there remains significant variability in the availability and implementation of supportive services like school-based family counselling (SBFC). These programmes are not yet universally established, leaving gaps in understanding how SBFC can address the unique needs of families navigating the challenges of autism. By focussing on the interplay of parental stressors and supports, this study aims to fill a critical knowledge gap in how schools in Israel can serve as effective partners for families of children with ASD.

Understanding the interplay between sense of control, social support, anxiety and loneliness is key to developing interventions that can alleviate parental stress and improve well-being. The current study explored these relationships to gain a clearer understanding of how these factors impact the mental health of parents of children with autism. Given the rising prevalence of autism (Maenner, 2020), this research is critical for informing school mental health practitioners on how to better support parents in managing the complex challenges of raising children with autism (Centers for Disease Control and Prevention, 2021).

Despite these challenges, some parents find empowerment through their experiences, transforming adversity into advocacy or career change (Waizbard-Bartov et al., 2019). Early parental adaptation is essential for long-term well-being, whereas low adaptation can increase stress and lead to behavioural problems in children (Hock et al., 2022).

Parental Stress arises when the demands of caregiving exceed available resources, leading to feelings of inadequacy and negative self-perception (Karst & Van Hecke, 2012; Mello et al., 2022). Parents of children with autism are particularly vulnerable to stress due to the unique challenges they face, including behavioural issues that exacerbate their stress (Zaidman-Zait et al., 2014). Studies have consistently shown that parents of children with autism experience higher levels of stress than parents of typically developing children, significantly affecting both their physical and mental health (Lai et al., 2015; Padden & James, 2017).

Social Support, whether emotional, informational or practical, plays a crucial role in reducing stress for parents of children with autism, fostering personal growth and improving well-being (Recio et al., 2020; Weinberg et al., 2021; Yan et al., 2022). Support from close friends, family and peer groups can significantly alleviate stress and contribute to better mental health outcomes in this population (Drogomyretska et al., 2020).

A Sense of Control – belief in one’s ability to influence life events – is critical for managing stress among parents of children with autism. Parents with a higher sense of control tend to experience lower stress levels and better health outcomes (Cantwell et al., 2014). Factors such as time management, family involvement and the ability to cope with external criticism can influence parents’ sense of control (Frantzen et al., 2016). Research highlights the importance of fostering a sense of control to enhance parental well-being and improve children’s ability to manage their children’s development (Falk et al., 2014).

Loneliness is another significant factor, as parents of children with autism often experience heightened loneliness and social isolation due to caregiving demands and limited social support (Lei & Kantor, 2021). This isolation can deepen stress and contribute to mental health issues, such as depression and anxiety (Scherer et al., 2019). The constant need to advocate for their child’s needs can further amplify feelings of loneliness, thus impacting psychological well-being (Mak & Kwok, 2010; Sipowicz et al., 2022).

The current study sought to explore the interplay between social support, sense of control, parental stress, anxiety and loneliness in parents of children with ASD to elucidate how these factors collectively influence parental well-being. Understanding the dynamics between internal factors, such as sense of control, and external factors, such as social support, is crucial for developing effective interventions to alleviate parental stress and improve mental health (Hasson-Ohayon et al., 2018; Robinson & Weiss, 2020).

Parents of children with ASD often experience higher levels of stress compared to parents of typically developing children, primarily due to the unique challenges of managing behavioural issues and ongoing caregiving demands. The lack of social support and increased feelings of loneliness can exacerbate this stress, leading to psychological difficulties such as anxiety and depression. Conversely, a strong sense of control and sufficient social support can act as buffers, reducing the negative impact of stress and enhancing well-being. The current study aimed to test the following hypotheses:

H1: A negative relationship will be found between social support, sense of control and parental stress, loneliness and anxiety, indicating that higher levels of social support, sense of control will be associated with lower levels of parental stress, loneliness and anxiety.

H2: Sense of control and social support will predict parental stress among parents of children with autism.

Method

Participants

In this cross-sectional study, 96 parents of children with autism participated, all of who were Jewish. The children were aged 6 to 12 years, which corresponds to elementary school grades in Israel. The sample included 75 females (83.3%) and 15 males (16.7%), with an average participant age of 39.66 (SD = 5.30). The majority of the children were boys (71, 78.9%), while 19 were girls (21.1%). The average age of the children was 8.41 (SD = 2.03), and the average time (in years) since the child’s diagnosis was 4.52 (SD = 2.41; Table 1).

Table 1.

Demographic data of study participants (N = 96).

Variable	n	%
Parent’s gender
Male	16	15.36
Female	80	76.8
Marital status
Single	4	3.84
Married	79	75.84
Divorced/separated	13	12.48
Child’s gender
Male	76	72.96
Female	20	19.2
	M	SD
Parent’s age	39.66	5.30
Child’s age	8.41	2.03
Time since child’s diagnosis (in years)	4.52	2.41

Materials

Parenting Stress Questionnaire (PSI-SF, Abidin, 1995) consists of 12 items pertaining to the domain of parental distress. It assesses the level of stress in parent-child relationships. Each item in the questionnaire was rated on a 1 to 5 Likert scale (1 = strongly agree with the item; 5 = strongly disagree with the item). For each participant, an average score was computed, with lower scores indicating higher levels of parenting stress. An example item is: ‘Most of the time, I feel my child loves me and wants to be close to me’. In the current study, Cronbach’s alpha reliability was found with α = .85.

Brief Symptom Inventory (BSI-18; Derogatis, 2001) was used to index anxiety and consists of 12 items. Each item is rated on a 1 to 5 Likert scale (1 = ‘not at all’; 5 = ‘extremely’). An example item is: ‘To what extent have you felt tense in the past week?’ An average score was computed for each participant, with higher scores indicating greater levels of anxiety. In the current study, the internal consistency was α = .89.

Short Loneliness Scale (SLS; Hughes et al., 2004) consists of three items assessing the individual’s subjective experience of loneliness. Each item is rated on a 1 to 4 Likert scale (1 = ‘not at all’; 4 = ‘very much’). An average score was computed for each participant, with higher scores indicating greater loneliness. An example item is: ‘To what extent do you feel that you lack companionship?’ In the current study, the internal consistency of the was found to be α = .94.

The questionnaire began with demographic questions, including the parent’s and child’s details, such as age, gender and time since the child’s ASD diagnosis. This was followed by the measures assessing parenting stress (PSI-SF), anxiety (BSI-18), loneliness (SLS), social support (MSPSS) and sense of control (Pearlin Mastery Scale). The questionnaire was structured to flow logically, starting with general information and progressing to specific psychological constructs. On average, participants took approximately 20 min to complete the entire questionnaire.

Independent variables

Multidimensional Scale of Perceived Social Support Social Support (MSPSS, Zimet et al., 1988) consists of 12 items that relate to the sources of perceived social support for the individual. It examines individuals’ perception of the social support they receive from their immediate environment when needed. Each item in the questionnaire is rated on a 1 to 7 Likert scale (1 = strongly disagree with the item; 7 = strongly agree with the item). For each participant, an average score was calculated, with higher scores indicating higher levels of social support. An example item assessing family support is: ‘I receive from my family the emotional help and support I need’. In the current study, high reliability was found, with α = .97.

Pearlin Mastery Scale (Mastery, Pearlin & Schooler, 1978) consists of seven items pertaining to the sense of control an individual has over their life. Each item in the questionnaire was rated on a 1 to 7 Likert scale (1 = not applicable at all; 7 = very applicable). After reversing Items 1, 2, 3, 5 and 6, an average score of perceived control was computed for each participant, where higher scores indicated a higher sense of control. An example item is: ‘I have little control over what happens to me in life’. In previous research, the questionnaire’s internal consistency, as measured by Cronbach’s alpha, was α = .90 (Greenblatt-Kimron et al., 2023). In the current study, internal consistency was found to be α = .79.

Demographic questions were also included in the questionnaire which required participants’ (the child’s parent) information about their child, including age, gender and the time elapsed since the child’s diagnosis of ASD.

Procedure

Participants were recruited through non-probabilistic purposive sampling via specialized social media platforms for parents of children with autism during November and December 2024. The study was conducted entirely online to facilitate broad participation, given the target population’s geographic and logistical constraints. Before engaging with the survey instrument, participants were directed to review an informed consent document wherein they provided an explicit indication of their willingness to participate in the study. Comprehensive details regarding the research objectives, methodology and researcher’s credentials were provided to the participants.

Upon reviewing and acknowledging this documentation, participants proceeded to formally sign an informed consent form, granting access to the online questionnaire while ensuring anonymity in data collection. Furthermore, participants were duly informed of their prerogative to discontinue the questionnaire at any juncture, with categorical assurance that all data gathered would be exclusively utilized for research purposes. Subsequently, participants proceeded to anonymously complete the questionnaire after consenting to participate in the study. None of the participants contacted the researchers after the study to express regret or request the withdrawal of their questionnaire responses.

Data analysis

Data analyses were conducted using SPSS version 27 to evaluate the hypotheses. Descriptive statistics (means and standard deviations) were calculated for the primary variables, including sense of control, social support and parental distress, to summarize the sample characteristics. Pearson’s correlations tested the first hypothesis (H1), predicting negative correlations between sense of control, social support and parental distress. Hierarchical stepwise regression analysis was conducted to examine the predictive power of sense of control and social support on parental distress (H2). Control variables (parental age, education level, socioeconomic status and autism severity) were entered in the first step. Sense of control and social support were added in subsequent steps to assess their unique contributions beyond the control variables. This approach allowed for the evaluation of the impact of each predictor while accounting for potential confounding factors. The analysis included an examination of beta coefficients, R-squared changes and overall model fit at each step. Significance levels were set at p < .05 for all analyses.

Results

Analysis of the data indicated that the mean scores for both sense of control (M = 5.20, SD = 1.19, range = 1–7) and social support (M = 4.97, SD = 1.85, range = 1–7) indices were relatively high, suggesting that parents generally felt a strong sense of control and experienced a substantial level of social support. In contrast, the mean anxiety score was M = 2.52 (SD = 1.07, range = 1–5), indicating moderate levels of anxiety. The mean score for loneliness was M = 2.48 (SD = 1.33, range = 1–5), suggesting that the parents experienced some level of loneliness. Finally, the mean score for parental distress was closer to the midpoint of the scale (M = 2.86, SD = 0.76, range = 1–5), indicating a moderate level of parental distress.

As shown in Table 2, the findings of this study support the H1, which proposes a negative relationship between social support, sense of control, parental stress, loneliness and anxiety. The results indicated that higher levels of social support and a stronger sense of control were associated with lower levels of anxiety, as shown by the significant negative correlations between anxiety and sense of control and social support. Similarly, parental distress was negatively correlated with sense of control and social support, indicating that greater social support and a higher sense of control contributed to reduced parental stress. Additionally, loneliness was significantly negatively correlated with sense of control and social support, while it was positively correlated with anxiety and parental distress.

Table 2.

Correlations between research variables (N = 96).

Variables	1	2	3	4	5
1. Anxiety	–
2. Sense of control	−.51***	–
3. Social support	−.42***	.38***	–
4. Loneliness	.62***	−.54**	−.50**	–
5. Parental distress	.61***	−.63***	−.35**	.62***	–

p < .005. ***p < .001.

Predicting parental distress using stepwise regression

A stepwise linear regression analysis was performed to test H2, which proposed that sense of control and social support would predict parental distress. In this analysis, several control variables were included to account for potential confounding factors: parental age, education level, socioeconomic status (SES) and the child’s severity of autism. These control variables were first entered into the model, followed by the main predictors (sense of control and social support).

Step 1: Control variables

In the first step, the control variables (parental age, education level, SES and autism severity) were entered into the model. The results indicated that among these control variables, only SES was a significant predictor of parental distress (B = -0.10, SE = 0.04, β = -.21, t = -2.50, p < .05), suggesting that higher socioeconomic status is associated with lower parental distress. The overall model at this step explained a moderate amount of variance in parental distress (R² = .15, F(4, 91) = 4.02, p < .01).

Step 2: Adding sense of control

A sense of control was added to the second step to assess its predictive power beyond the control variables. The results showed that sense of control remained a significant predictor of parental distress, even after accounting for the control variables (B = -0.35, SE = 0.05, β = -.55, t = -6.30, p < .001). The inclusion of sense of control significantly increased the model’s explanatory power (ΔR² = .25, FΔ(1, 90) = 39.69, p < .001), with the overall model explaining 40% of the variance in parental distress (R² = .40).

Step 3: Adding social support

In the final step, social support was added to the model. Although social support was negatively related to parental distress (B = -0.04, SE = 0.03, β = -.12, t = -1.38, p > .05), it did not significantly improve the fit of the model (ΔR² = .02, FΔ(1, 89) = 1.90, p > .05). This suggests that social support, while correlated with parental distress, does not have unique predictive power when the sense of control and control variables are considered (Table 3).

Table 3.

Stepwise regression analysis for predicting parental distress with control variables (N = 96).

Step	Variable	B	SE	β	t	ΔR²	R²	F Δ	p
1	Parental age	0.02	0.04	.05	0.50	–	.15	4.02	>.05
	Education level	−0.08	0.07	−.10	−1.14	–	–	–	>.05
	Socioeconomic status (SES)	−0.10	0.04	−.21	−2.50	–	–	–	<.05
	Autism severity	0.05	0.06	.08	0.83	–	–	–	>.05
2	Sense of control	−0.35	0.05	−.55	−6.30	.25	.40	39.69	<.001
3	Social support	−0.04	0.03	−.12	−1.38	.02	.42	1.90	>.05

Stepwise regression analysis, including control variables, suggests that sense of control is a robust predictor of parental distress among parents of children with autism, independent of demographic factors such as SES. In Step 1, the model with only control variables (parental age, education level, SES and severity of autism) explained 15% of the variance in parental distress (R² = .15, F(4, 91) = 4.02, p < .01), with SES being a significant predictor (p < .05). In Step 2, adding a sense of control significantly increased the explained variance to 40% (ΔR² = .25, p < .001), highlighting its strong predictive power for lower parental distress. However, in Step 3, adding social support did not significantly improve the model (ΔR² = .02, p > .05), suggesting that its unique contribution to predicting parental distress is less substantial when considering sense of control and other demographic controls. Thus, H2 was partially supported, highlighting that sense of control is the primary protective factor against parental distress.

Discussion

The present study examined the relationships between social support, sense of control, parental stress, anxiety and loneliness among parents of children with ASD. The study found that higher levels of social support and sense of control were associated with lower levels of parental stress, loneliness and anxiety, aligning with prior research (Falk et al., 2014; Lai et al., 2015). According to Conservation of Resources theory (Hobfoll et al., 2002), resources like social support (external) and sense of control (internal) are crucial in buffering against stress. Parents with a stronger sense of control experienced lower stress and anxiety, reinforcing the importance of internal resources in coping (Hobfoll et al., 2002). Empowering parents with control helps them manage challenges like navigating healthcare and educational systems and addressing social isolation (Frantzen et al., 2016; Hock et al., 2022; Karst & Van Hecke, 2012). This study uniquely highlights the stronger predictive power of sense of control compared to social support, emphasising the need for targeted interventions that build internal resilience.

Additionally, sense of control is linked to problem-solving strategies that reduce depression and anxiety (Weinberg et al., 2021). Anxiety was found to be closely related to parental distress and loneliness. Consistent with previous research, heightened anxiety worsens isolation, making it harder for parents to seek or maintain support (Lai et al., 2015). Stressors related to ASD, such as managing behaviours and healthcare systems, likely contribute to higher anxiety (Mak & Kwok, 2010), which not only increases distress but also hinders coping mechanisms (Weinberg et al., 2021). Thus, reducing anxiety through targeted interventions may enhance parents’ engagement with resources like social support and improve resilience (Hasson-Ohayon et al., 2018). These findings contribute to the field by underscoring the intertwined nature of internal and external resources and their combined impact on parental well-being.

The study also revealed a positive correlation between social support and sense of control, suggesting that these resources are interlinked. This supports the Stress-Buffering theory (Cohen & Wills, 1985), which posits that social support moderates the relationship between stress and well-being (Sharda, 2022). Strengthening these resources is crucial for managing stress and improving well-being (Awwad-Tabry et al., 2023; Awwad-Tabry & Levkovich, 2023; Das et al., 2017; Hobfoll et al., 2002; Recio et al., 2020; Wayment et al., 2019). School-based interventions are particularly well-suited to addressing these challenges, as schools are central touchpoints for families and offer unique opportunities for integrating support within educational environments. School-based interventions, like teacher-parent collaboration, can help parents manage ASD-related challenges, particularly in crises (Toren & Weiss, 2023).

Finally, sense of control was a stronger predictor of parental distress than social support, consistent with cognitive appraisal theories like the Transactional Model of Stress and Coping (Lazarus & Folkman, 1984). Parents with higher control may appraise challenges as more manageable, reducing stress and anxiety. Primary control (direct influence over one’s environment) may be more effective in reducing distress, while the impact of social support is more context-dependent (Rothbaum et al., 1982; Yan et al., 2022). This study contributes to the understanding of how internal factors, like a sense of control, interact with external supports to shape parents’ experiences and underscores the value of focussing on these dynamics within the SBFC framework.

Implications for school-based family counselling

This study highlights the crucial role of school-based counsellors and mental health professionals in supporting parents of children with ASD. Enhancing parents’ sense of control, which significantly affects their distress, anxiety and loneliness, should be a primary focus of interventions.

School-based interventions aimed at increasing parental control over caregiving can effectively reduce distress. Counsellors should assist parents in establishing routines and strategies that empower them to handle challenges confidently. While social support is important, strengthening parents’ sense of control should remain a priority.

Peer support groups and community resources facilitated through schools can help reduce isolation and provide emotional support. Additionally, educating the school community can foster a more inclusive and understanding environment, alleviating parental anxiety and loneliness.

Workshops and activities led by school-based family-counsellors should focus on empowering parents to feel in control of their caregiving roles. These interventions not only improve parental well-being but also enhance the educational experience of children with ASD.

Limitations and future research

This study has several limitations. The cross-sectional design and convenience sampling limit causal inferences, and the predominantly maternal sample affects generalisability. Conducting the study online restricted participation to those with internet access, and self-reports may have introduced bias. Additionally, the participants were all Jewish, which may limit the applicability of findings to more diverse populations. Furthermore, in Israel, children aged 6 to 12 years are enrolled in elementary school (grades 1 through 6), which should be considered when interpreting the context of the findings. The severity of a child’s ASD and access to resources were not examined. Future studies should include more diverse samples and explore how ASD severity and resource access impact parental stress. Longitudinal designs are also needed to track changes in parental stress, social support and sense of control over time.

Conclusion

This study underscores the importance of sense of control and social support in reducing stress, anxiety and loneliness among parents of children with ASD. Enhancing sense of control is the most effective way to alleviate distress. School-based family counsellors and mental health practitioners should focus on empowering parents to manage caregiving challenges, as fostering both internal and external resources is key to improving well-being.

Footnotes

Acknowledgements

The authors would like to thank all who participated in this study for their efforts.

Data availability statement

The data sets used in the study can be provided upon request to the corresponding author.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was supported by Oranim College of Education.

Ethical approval and informed consent statements

The study was approved by the Institutional Review Board (IRB) of Tel Hai College (approval no. 051024).

Consent for publication

Not applicable.

ORCID iD

Sawsan Awwad-Tabry

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