Internalized stigma adversely affects parents of children with Autism Spectrum Disorder.

Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder characterized by deficits in social reciprocity, delays in communication skills, and the presence of repetitive behaviors that may violate social norms. It is more prevalent in males, with a ratio of approximately 4:1. In addition, children with ASD often face stigma due to stereotypes, misconceptions, and discrimination from mainstream society (Liao et al., 2019). Despite recent studies indicating that individuals with autism often mask their differences to integrate into society and maintain interpersonal relationships, stigma surrounding autism persists (Botha et al., 2022; Perry et al., 2022; Ma et al., 2023). Stigma not only impacts children with ASD, but also extends to individuals who are close to them, particularly their parents. Parents of children with autism experience sequential process of stigmatization which begins with negative stereotyping, loss of societal status, separation and isolation and culminates into discrimination (Ma et al., 2023; Patra and Kumar, 2019; Salleh et al., 2020; Öz et al., 2020; Oduyemi et al., 2021). A previous study evaluating stigmatization in families with children with ASD found that society perceived ASD-specific behavioral patterns as “weird,” leading to hurtful words and looks directed at both individuals with ASD and their families. This, in turn, restricted their social lives. Families also reported that, to avoid societal judgment, they preferred to interact only with close relatives and other families with disabled children, whom they believed would understand them and refrain from judgment (Karabekiroğlu et al., 2009). People who do not understand children’s behaviors with ASD probably would not associate them with mental conditions but question their caregivers instead. This may put extra pressure on caregivers and, thus, lead to autism-related stigmatization (Ma et al., 2023). In view of the prevalent and stigma against their children and themselves, parents of children with ASD may perceive their families as inferior to others and have self-stigmatizing thoughts about themselves (Chan and Lam, 2018).

The personal suffering experienced by a caregiver as a result of a family member’s illness is referred to as “burden.” In the literature, a distinction is commonly made between objective burden and subjective burden. Objective burden pertains to practical difficulties, such as disrupted family relationships, limitations in social, leisure, and work activities, and financial struggles. Subjective burden, on the other hand, relates to the caregiver’s psychological responses, including loss of hope, shattered dreams and expectations, depression, anxiety, and feelings of embarrassment in social situations (Picardi et al., 2018). Since most individuals with autism spectrum disorders continue to live in family homes into adulthood, the responsibility for assisting with activities of daily living often falls on parental caregivers. Providing continuous support to children with ASD who struggle with independently performing daily activities may increase the caregiver burden experienced by their aging parents (Marsack-Topolewski et al., 2021). Being a parent of a child with a neurodevelopmental disorder such as autism spectrum disorder requires making many correct moves from the moment of birth. Responsibilities such as ensuring the child’s personal care, meeting their special needs, assisting them in accomplishing various tasks, ensuring that their school life is not disrupted, and developing their social life skills fall on the caregiver. In fact, while trying to fulfill these responsibilities, parents may neglect their own lives and health. Therefore, parents, who are mostly in the caregiver position, may perceive this upbringing process as a heavy burden and, when they feel unable to continue supporting their child, become vulnerable to depression and anxiety disorders (Ceco and Çakın Memik, 2017). Moreover, the internalized stigma perceptions of parents of children with ASD can increase the caregiver burden they experience. While numerous studies focus on stigma experienced by parents of children with ASD, fewer studies have explored the internalized stigma perceptions and their relationship with caregivers’ burden (Gabra et al., 2021; Gümüş and Kaçan, 2024; Efe et al., 2024).

The concept of mindfulness has gained significant prominence in contemporary psychological discourse. One of the primary reasons for this is the growing recognition that conscious awareness plays a crucial role in addressing psychological challenges. Mindfulness emphasizes the importance of acknowledging and regulating one’s emotional experiences, rather than suppressing or attempting to control them. Emotion regulation, in conjunction with mindfulness, serves to mitigate emotional and physiological responses, thereby fostering healing and emotional well-being. Mindfulness may enable individuals to approach negative life experiences with open and accepting attitudes (Kabat-Zinn, 1994, 2003). Given the deleterious effects of internalized stigma on self-perception emotional well-being, and perceived caregiver burden it is crucial to identify ways to help parents of children with ASD build resistance and resilience against stigma and protect themselves from the adverse psychological outcomes. According to Chan’s et al. (2018) theoretical model of stigma resistance, one potential way to protect stigmatized individuals from stigma-related harm is to cultivate mindfulness. Mindfulness has been linked to fewer emotional symptoms and mental health issues, according to earlier cross-sectional correlational research (Brown-Iannuzzi et al., 2014; Wang et al., 2024). Further evidence from intervention research has shown that mindfulness improves coping strategies and stigma resistance across various stigmatized populations (Tang et al., 2021). It is unclear, nevertheless, exactly how mindfulness impacts parental internalized stigma in children with autism (Wang et al., 2024). To date, there has been a limited number of studies investigating mindfulness as a protective factor against stigma in parents of children with ASD. The existing findings suggest that mindfulness may help parents alleviate negative thoughts and emotions associated with their stigmatized status (Chan et al., 2018; Wang et al., 2024; Yip and Chan, 2022).

Resilience is a must for parents of children with ASD. Psychological resilience is an internal factor that can improve the mechanism of coping with difficulties. Many parents of children with ASD have to deal with constant trials and associated difficulties and are therefore usually resilient. Resilience helps maintain personal wellbeing and function (Salleh et al., 2024). Nevertheless, to date, only a limited number of studies have examined the relationship between caregiver burden, stigma, and psychological resilience among parents of children with ASD (Salleh et al., 2022, 2024). In a study conducted by Salleh et al. (2022), low caregiver burden was reported to be associated with high resilience. In another study conducted by Salleh et al. (2024), the potential protective effect of psychological resilience against stigma among parents of children with ASD was reported. The relationship between psychological resilience, mindfulness, and caregiver burden has been examined in various sample groups, particularly among caregivers of individuals with chronic illnesses. Findings from these studies have reported that mindfulness and psychological resilience are contributing factors to resilience against caregiver burden (Klietz et al., 2020; Tan et al., 2023; Erdoğan Yüce et al., 2024; Saragih et al., 2024). However, no research has been identified that specifically explores the connection between internalized stigma and adverse outcomes, such as heightened caregiver burden, among parents of children with ASD, nor examines the potential buffering effects of mindfulness and psychological resilience on these associations.

To summarize, although stigma attached to ASD is prevalent, few studies have examined its impact on caregiver burden among parents of children with ASD, as well as the potential protective factors within this family context. Moreover, no research has specifically investigated the potential effect of internalized stigma on caregiver burden, or whether mindfulness and psychological resilience mediate the relationship between stigma and caregiver burden in this population. A limited number of previous studies have reported a positive association between stigma and caregiver burden among parents of children with ASD. Additionally, although not extensively studied, some evidence suggests that mindfulness may contribute to the development of resistance against stigma among these parents. While this has not been studied specifically in parents of children with ASD, previous research in different sample groups has shown that mindfulness and psychological resilience are contributing factors to resilience against caregiver burden.

Based on these findings, the present study aims to investigate the mediating role of two factors psychological resilience and mindfulness which are assumed to act as buffers in the relationship between internalized stigma and caregiver burden in parents of children with ASD. This study also seeks to provide a theoretical foundation for future interventions aimed at reducing internalized stigma and caregiver burden in this population.

Based on previous studies and the conceptual model outlined, the research model (Figure 1) was created and hypotheses were determined, with the idea that psychological resilience and mindfulness could act as a mediating variable in the relationship between internalized stigma and caregiver burden among parents of children with ASD.

The study focused on the primary caregivers of children with ASD attending special education and rehabilitation centers, and revealed that caregiver burden, internalized stigma, psychological resilience, and mindfulness levels significantly differed based on certain demographic characteristics.

In the literature, several studies have indicated that parental age has an impact on caregiver burden. In a study conducted by Emir et al. (2020) with parents of children with special needs, it was reported that caregiver burden scores increased with age. Özok Bulut et al. (2024) found that younger parents in the 20–30 age group had higher caregiver burden scores. In the present study, caregiver burden scores were found to be higher among both younger parents aged 20–25 and older parents aged 41 and above. This finding may be associated with the lack of experience and increased stress levels among younger parents, as well as the greater likelihood of physical and psychological fatigue experienced by older parents.

In the current study, caregiver burden scores of female parents were found to be higher than those of male parents. There are other studies in the literature that support this finding (Gümüş and Kaçan, 2024). In the study by Patel et al. (2022), mothers as caregivers were found to experience a significantly higher level of caregiver burden. This was attributed to the fact that mothers are typically the primary caregivers who assume full responsibility for caregiving and spend the most time with the child. Other studies have also demonstrated that the caregiver burden predominantly falls on mothers, who are solely responsible for meeting the child’s daily needs, which in turn leads to increased stress (Abdulla and Al Kurwi, 2020; Minhas et al., 2015). The findings of the present study are consistent with these results. The higher caregiver burden experienced by women compared to men may reflect traditional gender roles, wherein caregiving responsibilities are predominantly assumed by women. This situation may also be explained by the fact that women often serve as the primary caregivers and therefore bear a greater share of the physical and emotional burden.

Another key finding of our study is that parents with lower income levels reported higher caregiver burden and internalized stigma, suggesting that economic hardship exacerbates the challenges of the caregiving process. Socioeconomic status plays a crucial role in helping parents of children with ASD cope with the difficulties of daily life (Alwhaibi et al., 2020). Parents with higher household incomes are more likely to access psychologists, therapists, and educators for both themselves and their children’s special needs, which in turn enhances their perceived social support (Al-Farsi et al., 2013). However, low income may prevent parents from benefiting sufficiently from such support systems. This suggests that economic disadvantages may reinforce feelings of stigma by increasing social isolation and stress levels.

Additionally, parents who have an additional child with a disability reported higher levels of caregiver burden and internalized stigma, along with lower levels of psychological resilience and mindfulness. This suggests that having more than one child with special needs may impose additional stress and burnout on parents, and the increased responsibilities may negatively impact their psychological resilience and level of mindfulness.

This study further examined the mediating roles of mindfulness and psychological resilience in the relationship between internalized stigma and caregiver burden among parents of children with autism spectrum disorder using structural equation modeling. The findings provided preliminary support for the proposed mediation pathways; however, the overall model demonstrated moderate rather than optimal fit to the data. Therefore, the results should be interpreted with caution and considered exploratory in nature, particularly given the cross-sectional design and the complexity of the psychosocial constructs examined.

Overall, the findings revealed significant relationships between internalized stigma, psychological resilience, mindfulness, and caregiver burden, highlighting important psychological mechanisms underlying the caregiving process. The high levels of statistically significant correlations among the study variables (all p < 0.001) are consistent with previous studies (Gümüş and Kaçan, 2024; Wang et al., 2024; Yip and Chan, 2022; Salleh et al., 2024; Xing et al., 2025). However, the magnitude of these associations warrants careful interpretation. The high correlation coefficients observed in this study may be explained by the theoretical proximity between internalized stigma, mindfulness, and psychological resilience. However, these relationships do not imply that the constructs are identical or interchangeable. Due to the cross-sectional design of the study, the findings should be interpreted at a relational rather than a causal level. In particular, the intense intertwinement of psychosocial processes among caregivers of children with autism spectrum disorder may have contributed to the strong associations observed among these constructs.

The negative relationship between psychological resilience and caregiver burden suggests that parents with higher levels of resilience are better able to cope with stress and therefore perceive a lower caregiving burden. This implies that psychologically resilient individuals may possess more effective coping skills in managing stressful caregiving situations. This finding aligns with the protective role of psychological resilience emphasized in studies such as those by Doğan (2015) and Rasoulpoor et al. (2023). Other findings in the literature similarly underscore the protective function of resilience in highly stressful contexts such as chronic caregiving (Bekhet et al., 2012).

The positive correlation between caregiver burden and internalized stigma suggests that as caregiving responsibilities increase, parents may be more prone to internalizing societal stigma. This may indicate that the psychological pressure associated with caregiving can trigger feelings such as inadequacy, guilt, or shame, thereby intensifying the sense of stigma (Mak and Kwok, 2010). Another variable found to be negatively correlated with internalized stigma is mindfulness, which may serve as a protective psychological buffer in this process. Parents with higher levels of mindfulness tend to adopt a more present-focused and non-judgmental attitude, making them less susceptible to negative self-perceptions. Mindfulness practices may play this protective role by enhancing self-acceptance and emotional regulation skills. Similarly, psychological resilience was also found to be negatively associated with internalized stigma. This finding suggests that psychologically resilient parents are less affected by external negative judgments, potentially due to their capacity to maintain a sense of meaning and purpose while coping with adversity (Connor and Davidson, 2003). The negative impact of internalized stigma on both psychological resilience and mindfulness indicates that stigma extends beyond social perceptions and also undermines individuals’ internal worlds and mental flexibility. The mediating role of mindfulness is consistent with stigma coping models proposed by Chan et al. (2018) and Wang et al. (2024).

Another key finding of our study is that, based on the results of two mediation models tested using structural equation modeling, both psychological resilience and mindfulness partially mediate the relationship between internalized stigma and caregiver burden. As emphasized in previous research, resilience and mindfulness are often regarded as important compensatory mechanisms that buffer individual psychological responses when faced with challenging circumstances, and they are considered moderators in the relationship between stressors and psychological outcomes (Brown-Iannuzzi et al., 2014; Tang et al., 2021; Yip and Chan, 2022; Salleh et al., 2024; Xing et al., 2025; Rasoulpoor et al., 2023). These findings underscore the importance of enhancing psychological resilience and mindfulness, particularly for parents experiencing high levels of caregiver burden and internalized stigma. Intervention programs aimed at increasing resilience and developing mindfulness skills may positively impact parents’ well-being and caregiving experiences. Furthermore, the results suggest that such interventions should not only target external stressors but also focus on strengthening parents’ internal resources. Future research should employ longitudinal designs to determine the directionality of these relationships and assess the effectiveness of specific psychosocial interventions in reducing stigma and caregiver burden.

This study has several limitations. It was conducted with a sample of 138 parents receiving services from five special education and rehabilitation centers in a single province in Turkey. The small and non-representative nature of the sample limits the generalizability of the findings to other geographical regions. To improve generalizability, future research should involve larger sample sizes and include parents from centers located in other provinces. Additionally, the use of self-reported measures may introduce subjectivity and potential bias, which could further limit the validity and generalizability of the results.

The findings provided preliminary support for the proposed mediation pathways; however, the overall model demonstrated moderate rather than optimal fit to the data. Therefore, the results should be interpreted with caution and considered exploratory in nature, particularly given the cross-sectional design and the modest sample size, as well as the complexity of the psychosocial constructs examined. Future studies employing longitudinal designs and alternative modeling approaches are recommended to further validate the proposed mediation pathways.

Another limitation of this study is that the sample included only parents of children attending Special Education and Rehabilitation Centers. Parents of children with ASD who attend mainstream schools with inclusive education support may experience stigma, caregiver burden, and psychosocial processes differently. Therefore, the generalizability of the findings to all families of children with ASD may be limited.

Another limitation of this study is that the severity of autism spectrum disorder and the presence of comorbid conditions (e.g., intellectual disability, attention-deficit/hyperactivity disorder, or anxiety disorders) were not assessed. These factors may influence caregiver burden, internalized stigma, psychological resilience, and mindfulness. Therefore, future studies should incorporate standardized assessments of ASD severity and comorbidities to better elucidate their potential impact on caregiving-related psychosocial outcomes.

These research findings indicate that the levels of caregiver burden and internalized stigma among parents of children with Autism Spectrum Disorder are influenced by demographic factors such as age, gender, income level, and the presence of other children with disabilities. In particular, younger parents, women, those with low income, and those with multiple children with disabilities appear to be at higher risk. Psychosocial support programs can be developed specifically for parents in these high-risk groups, while financial assistance and counseling services may be strengthened for low-income families. Awareness-raising initiatives that promote the sharing of caregiving responsibilities within the family could help reduce the burden on women. Additionally, tailored counseling and therapy services for parents of multiple children with disabilities, as well as guidance programs for young parents, could teach effective strategies for alleviating caregiver burden.

Psychological resilience is often regarded as an important compensatory factor that buffers individual psychological responses when faced with adversity and facilitates coping with challenging circumstances. It is also considered a moderator in the relationship between stigma and psychological outcomes, such as increased caregiver burden.

Our findings highlight the link between internalized stigma and negative outcomes—such as elevated caregiver burden—among parents of children with ASD, and they demonstrate the potential protective roles of mindfulness and psychological resilience against such outcomes. Future interventions aimed at reducing caregiver burden in parents of children with ASD may be improved by incorporating resilience-building and mindfulness training programs.