Autism spectrum disorder (ASD) is a complex neurodevelopmental condition characterized by persistent deficits in social communication and interaction and restricted or repetitive patterns of behavior, interests, or activities.^(1,2) These behavioral and cognitive characteristics often emerge in early childhood and persist throughout life, with considerable variability in functional outcomes and adaptive behavior. Clinical presentations vary widely, from individuals who require substantial daily support to those who function independently but continue to experience challenges in social communication and flexibility.

The etiology of ASD is multifactorial, involving genetic, epigenetic, and environmental factors.^(1,3) Genetic susceptibility plays a major role, and several chromosomal abnormalities and gene mutations have been identified as contributing factors. Environmental influences, including intrauterine viral infections,⁽⁴⁾ toxin exposure, and perinatal complications, may act as triggers or amplifiers in genetically predisposed individuals. Mitochondrial dysfunction has also been implicated and may reduce cellular energy production and impair neurotransmitter release in key brain regions, including the cerebellum, prefrontal cortex, and temporal lobes.^(5,6) Together, these mechanisms may contribute to the structural and functional brain alterations associated with the behavioral and cognitive manifestations of ASD.

The reported global prevalence of ASD has increased substantially over the past two decades, partly reflecting greater awareness and improved diagnostic sensitivity.⁽⁷⁾ In Brazil, the 2022 Census conducted by the Brazilian Institute of Geography and Statistics (IBGE - Instituto Brasileiro de Geografia e Estatística) identified approximately 2.4 million individuals with ASD, representing 1.2% of the population aged two years or older. Among school-aged children six years or older, 760,800 were identified as having ASD, corresponding to 1.7% of the student population and indicating a higher diagnostic prevalence among children and adolescents than among adults.⁽⁸⁾ Consistent with global data, ASD is more prevalent in boys, with an estimated male-to-female ratio of approximately 4:1.⁽⁹⁾

Caring for an individual with ASD often requires substantial commitment and adaptability. Caregivers, frequently parents or close family members, assist with daily living activities, support communication, manage behavioral challenges, and promote social inclusion throughout the individual's development into adulthood.^(10,11) Despite its rewarding aspects, caregiving may involve continuous physical, emotional, and educational demands, which may be compounded by limited access to specialized guidance and social support and may increase stress, anxiety, and depression among caregivers.^(10,12) This chronic strain can affect psychological well-being and overall quality of life (QoL).

Caregiver burden encompasses the physical, emotional, social, and financial strain experienced by individuals who provide prolonged care for persons with special needs.^(13,14) This burden arises not only from the intensity of caregiving tasks but also from social isolation, role conflicts, and reduced personal time. Over time, these challenges can lead to fatigue, sleep disturbances, somatic symptoms, and poorer physical and mental health, thereby reducing caregivers’ QoL. Chronic caregiving-related stress may also lead caregivers to neglect their own health, including oral health practices, potentially reinforcing the cycle of caregiver burden and poor well-being.^(15,16)

Studies have reported higher burden among caregivers of individuals with ASD than among caregivers of neurotypical (NT) children.^(11,17) This increased burden may reflect the complexity of managing behavioral difficulties, navigating healthcare systems, and advocating for specialized educational and therapeutic services. Caregivers often prioritize the child's well-being, particularly in essential domains such as health and education, even at the expense of their own emotional and physical needs.⁽¹¹⁾ Although such prioritization may support child health outcomes, it can contribute to cumulative caregiver stress and exhaustion.

Caregiver burden may be further amplified by reduced time for personal, social, and professional activities.⁽¹⁸⁾ Ongoing caregiving demands require emotional resilience, physical endurance, and social support. Without adequate psychoeducational resources and accessible primary healthcare, caregivers may face an increased risk of mental health problems and reduced capacity to provide sustained care. Targeted interventions that offer psychosocial support, stress management, and community-based education may improve caregivers’ well-being and the care provided to individuals with ASD. Designing effective support strategies requires a context-specific understanding of caregivers’ needs, sociodemographic characteristics, and challenges, including how these differ from those of caregivers of NT children.

Although caregiver burden in ASD has been widely documented,^(19-26) most studies have been conducted in general medical, psychological, or community-based settings, with limited attention to the specific challenges encountered in dental care environments. Oral health management in children with ASD often requires substantial caregiver involvement because of behavioral difficulties, sensory sensitivities, and reduced autonomy in daily oral hygiene practices. These factors may introduce context-specific stressors that are not fully captured in the broader caregiver burden literature. Moreover, few studies have directly compared caregivers of children with ASD and caregivers of NT children within the same clinical care setting, limiting the ability to distinguish ASD-related caregiving demands from differences in healthcare access. Therefore, evaluating caregiver burden and QoL within a specialized dental care context may clarify how oral health-related demands are associated with caregiver strain and overall well-being.

The present study aimed to assess and compare quality of life and caregiver burden between caregivers or guardians of children with autism spectrum disorder receiving care at a specialized multiprofessional dental institution and caregivers or guardians of neurotypical children, with emphasis on oral health-related care demands.

A total of 124 caregivers or legal guardians participated in the study (Figure 1). The mean age of the children was 9.45 years in the ASD Group and 8.29 years in the NT Group. Sex distribution differed significantly between groups: 80.6% of children in the ASD Group were boys, compared with 45.2% in the NT Group (p<0.001).

Regarding clinical severity, children with ASD were classified by diagnostic level: 50.00% were classified as level 1, indicating a need for mild support; 35.48% were classified as level 2, indicating a need for moderate support; and 14.52% were classified as level 3, indicating a need for substantial or intensive support. These classifications characterize the level of support required by the children with ASD.

Functional dependence differed between groups. In the ASD Group, 69.4% of children depended on caregivers for activities of daily living, whereas 67.7% of children in the NT Group were fully independent (p<0.001). Similarly, 64.4% of children in the ASD Group required caregiver assistance with oral hygiene, whereas 82.3% of NT children performed oral hygiene independently (p<0.001). These findings indicate greater dependence in activities of daily living and oral hygiene among children with ASD than among NT children.

This study analyzed QoL and caregiver burden among caregivers of children with ASD and those of NT children. Our findings are consistent with several patterns reported in the literature, particularly the higher proportion of boys in the ASD Group.⁽³⁰⁾ This distribution is consistent with epidemiological data showing a male predominance in ASD diagnoses. ASD is associated with behavioral and cognitive impairments that can affect development, learning, and independence and may require continuous caregiver support.⁽³¹⁾ Consistent with previous reports, children with ASD in this study showed higher levels of dependence in activities of daily living and oral hygiene.^(11,26) This elevated dependence may increase caregiving demands on parents and guardians, requiring additional time, effort, and emotional resources.

A key contribution of this study is its evaluation of caregiver burden within a specialized dental care setting, an aspect that remains underexplored. Previous studies^(19-25) have reported increased burden among caregivers of children with ASD, but most have focused on general health or psychosocial contexts. In the dental care context, additional demands may arise from oral hygiene assistance and the management of behavioral challenges during clinical procedures. Because both groups were recruited from the same institution, this design may have reduced variability related to healthcare access and allowed a more focused comparison of ASD-related caregiving demands.

The predominance of mothers as primary caregivers was also evident in our sample, reflecting a trend reported across different cultural contexts.^(10,32-35) Despite societal shifts in gender roles, women often continue to assume most caregiving responsibilities, whereas fathers more frequently focus on financial provision.^(33,36) This pattern supports the need for interventions that address the challenges faced by mothers while promoting equitable support for both parents. Primary caregivers also play an important role in supporting social inclusion among children with disabilities and promoting their integration into the community. However, extensive caregiving responsibilities, particularly when undertaken with limited institutional or social support, can adversely affect caregivers’ personal and family life and reduce overall QoL.^(16,37)

In this study, overall QoL scores^(27,38) did not differ significantly between caregivers of children with ASD and caregivers of NT children, suggesting that broad perceptions of QoL may be similar between groups. Although item-level analyses identified differences in specific physical and psychological aspects, these findings should be interpreted cautiously. These analyses involved multiple comparisons without formal adjustment, increasing the risk of Type I error, and the observed effect sizes were small to moderate. Therefore, the absence of differences in global QoL should be emphasized because it provides a more robust measure of overall well-being than individual item responses. This distinction is important when interpreting group differences in QoL in cross-sectional studies.

Several factors may explain the absence of significant differences in global QoL between caregivers of children with ASD and caregivers of NT children. First, caregivers of children with ASD may develop adaptive coping strategies over time, including psychological resilience, reorganization of daily routines, and reliance on informal or formal support networks, which may mitigate the effect of caregiving demands on overall life perception. Second, participants were recruited from a specialized multiprofessional care setting, which may have provided structured support, guidance, and access to healthcare resources that buffered some negative effects of caregiving. Third, global QoL measures such as the WHOQOL-BREF may lack sensitivity to detect subtle, domain-specific differences, as suggested by the item-level differences observed. Finally, caregivers of NT children may also experience stress related to parenting, daily responsibilities, and socioeconomic factors, which may reduce between-group differences when broad QoL measures are used. Together, these factors may explain why overall QoL scores were similar despite higher caregiver burden in the ASD Group.

Consistent with previous studies, caregiver burden was significantly higher among caregivers of children with ASD than among caregivers of NT children. Most caregivers in the ASD Group reported mild to moderate burden, although individual experiences varied.^{(11,26,33,39-44)} Elevated burden may have multiple implications, including depressive and anxiety symptoms, emotional exhaustion, social isolation, reduced quality of care, absenteeism, and decreased productivity. Regression analysis showed an association between diagnostic group and caregiver burden category, suggesting that ASD-related caregiving demands may be important contributors to burden. This finding is relevant to dental care because caregiver burden may reflect not only the practical demands of oral hygiene assistance but also broader behavioral, emotional, and organizational challenges associated with ASD that may become more prominent during oral health management.

Caregiver burden is closely linked to emotional distress and social limitations, supporting the need for interventions that address both caregiver well-being and child-related care needs. Behavioral challenges in children with ASD further increase this burden, supporting integrated approaches that address family well-being alongside child-focused interventions.^(45-47) The specialized, multidisciplinary care provided in the study setting may also have supported oral health maintenance and alleviated some caregiving challenges. Nonetheless, regional disparities in access to healthcare and social services can affect caregiver QoL and exacerbate burden, highlighting the need for comprehensive support policies. Initiatives such as the Integrated State Plan for People with ASD (PEIPTEA) in São Paulo exemplify intersectoral strategies aimed at enhancing inclusion, protecting rights, and improving QoL for individuals with ASD and their families.

From a clinical perspective, these findings support a family-centered approach to dental care for individuals with ASD. Strategies that reduce procedural stress, improve patient cooperation, and support caregivers—such as behavioral guidance techniques, caregiver education, and individualized treatment planning—may improve oral health outcomes and reduce caregiver burden. Thus, dental professionals may play an important role not only in managing oral conditions but also in supporting the broader well-being of families affected by ASD.

Caregiver burden is influenced by psychosocial and socioeconomic factors. In this study, perceived social support, caregiver mental health history, and coping strategies were not assessed; moreover, although sociodemographic characteristics were collected, they were not incorporated into the regression model. These factors may have contributed to the observed outcomes. Their absence limits the ability to account for potential confounding and restricts the interpretation of the regression findings.

This study has several limitations that should be considered. First, data were self-reported and may be subject to recall bias or social desirability effects. Second, variables such as duration of caregiving, caregiver physical and mental health, social support, and socioeconomic status were not controlled, and the study was conducted in a specific geographic region, limiting generalizability. Third, participants were recruited from a specialized multiprofessional dental care center, which may limit generalizability because these caregivers likely had greater access to structured healthcare services and professional support than the broader population of caregivers of children with ASD. This context may have influenced both perceived burden and coping strategies. In addition, although caregivers were recruited consecutively, the clinical setting reflects a convenience-based population of individuals actively seeking care. Furthermore, excluding caregivers with diagnosed psychiatric disorders, although intended to reduce confounding in self-reported outcomes, may have led to underestimation of caregiver burden because individuals with higher levels of psychological distress were not represented in the sample. Therefore, caution is warranted when generalizing these findings to populations with limited access to multidisciplinary care or higher levels of psychological vulnerability. Despite these limitations, the findings support targeted, context-specific support strategies, particularly within dental care settings, to reduce caregiver stress and improve well-being in families affected by ASD.

Additional methodological considerations should also be acknowledged. The sample size calculation was based on differences in QoL scores measured using the WHOQOL-BREF, and no specific power analysis was conducted for caregiver burden or logistic regression analyses. Although the study detected substantial between-group differences in caregiver burden, the regression analyses included only a limited number of predictors and did not include key sociodemographic or psychosocial variables, such as caregiver age, sex, education, income, or social support. The item-level analyses also involved multiple comparisons without formal correction, increasing the risk of Type I error. Therefore, these item-level and regression findings should be interpreted cautiously. Finally, the relatively modest sample size may restrict the stability and generalizability of multivariable estimates; therefore, future studies with larger samples are warranted to confirm these associations. Future studies should incorporate comprehensive multivariable models that include psychosocial, behavioral, and socioeconomic factors to better characterize the determinants of caregiver burden and identify potential targets for intervention.

Caregivers of children with autism spectrum disorder and caregivers of neurotypical children generally reported moderate quality of life. However, caregivers of children with autism spectrum disorder experienced significantly higher caregiver burden, supporting the need for targeted strategies to address caregiving-related stress and support caregiver well-being.