Parenting is a rewarding, albeit challenging role as caregivers navigate how to best meet the needs of children daily. Parenting autistic children presents unique challenges, with significant variation in the presentation of Autism Spectrum Disorder (ASD), hitherto referred to as autism. Autism is a complex lifelong neurodevelopmental condition that emerges in childhood and is characterised by varied levels of social and communication difficulties, and the presence of restricted, repetitive behaviours, interests and/or activities [1]. While some parents face greater challenges due to difficulties with their children’s limited verbal communication skills, others may face greater challenges associated with the heightened externalising behaviours and social difficulties [2]. In the past two decades, the prevalence of autistic children has increased, with recent estimates indicating the prevalence to be 1 in 36 children [3]. Understanding the impact that raising an autistic child has on parenting in the early years and the impact on parental QoL may help tailor appropriate early supports for both children and their parents.
There are many factors that underlie the challenges faced by parents of autistic children [4], and previous studies have examined how both intrinsic and extrinsic factors impact these parents. Studies have shown that parents’ quality of life (QoL) is impacted by level of social support [5], perception of daily hassles [6, 7], parental mental health [6, 8], and parenting stress [9–13]. More importantly, a number of clinical characteristics have been associated with poorer parental QoL in parents raising autistic children, compared to parents of children without autism [13, 14]. Parents of autistic children report higher stress [7–9, 13, 14], poorer sleep quality and increased fatigue [15], heightened anxiety [10, 14, 16] and increased depressive symptoms [6, 8, 10, 14, 17].
Subjective measures of self-esteem, social support and life satisfaction reported by a sample of Chinese parents raising 5 to 12 year old autistic children indicated poorer self-esteem, social support and life satisfaction in comparison to the same measures completed by demographic-matched parents raising children without autism [18]. Cross-sectional assessment of maternal stress and family QoL in Australian parents has further replicated international findings that mothers of autistic children report higher levels of stress and lower family QoL across childhood [12]. More recently, cross sectional evaluation of clinical indicators in a large Chinese sample found that mothers of children with more autism traits have significantly higher levels of stress, anxiety and depression than fathers [10]. Notably, higher education level (college or above) provided a protective factor against maternal stress, whilst having an only child provided a protective factor against paternal stress [10]. While studies have repeatedly demonstrated that perceived stress contributes to poorer QoL in parents of autistic children, most have included school aged children and have also been limited in the extent to which other sociodemographic factors were assessed.
Other studies have focussed on the associations that child characteristics have on perceived parenting capacity and QoL. More autism traits [5, 6, 19] and difficulties adapting in social settings [20, 21] and the attribution of parental health related problems associated with raising an autistic child [22] have all been shown to exacerbate parenting challenges with consequent negative impact on parenting experiences. Indeed, child characteristics including age, autism traits, adaptive behaviour profile and the intellectual ability of the child have been predicted to impact the level of parental stress in parents of preschool autistic children [23]. Collectively, these studies demonstrate that parenting autistic children adversely impact parental QoL. When assessing the connections between parental QoL and autism features using survey and observational assessments, it has been shown that those children who have better behavioural regulation and attention, communication and fewer restricted and repetitive behaviours and internalising behaviours have better parental QoL [19].
Using the Quality of Life in Autism scale (QoLA) [24], a cross-cultural comparison set out to determine whether i) parent perception of their QoL (QoLA Part A) and ii) parent report of their child’s autism-specific difficulties (QoLA Part B) differ across cultures [25]. Families who were attending services for intervention and/or childhood assessments, were asked to complete the QoLA questionnaire as part of their respective care/assessment. De-identified data was then compiled for secondary data analysis to understand cross cultural similarities and differences in parent reports across collectivist and Westernised cultures. The findings indicated that parent perceptions of the level of difficulties their child experienced as a result of exhibiting autism-specific features were comparable regardless of cultural context. However, reports of parental QoL were influenced by the culture to which the parent belongs [25]. It was argued that parents from western cultures (Australia and the UK) with ease of access to higher quality health services and supports for young children reported higher overall parental QoL [25]. Whereas parents from non-western cultures reported scored lower on overall QoL, and rated strongly on different domains relating to QoL such as self determination (e.g. Hungarian parents), social inclusion and interpersonal relationships (e.g., Malaysian parents). Thus, use of a transcultural lens is important in considering the full extent to which raising an autistic child impacts a family. Importantly, there is also evidence that the sociodemographic characteristics of parents including education and professional status [26, 27] influence parental stress, coping and reported QoL.
While these studies provide consensus that parental QoL is adversely impacted in families raising an autistic child, the results are based on relatively small sample sizes, targeted contexts, differing measures of QoL, and are generally limited in examination of the combined associations between parent, child and sociodemographic factors that can impact QoL [24, 28]. Systematically understanding how sociodemographic, parent and child factors combine and contribute to parental QoL will inform the evidence base from which family supports can be drawn. This will support bespoke adaptation to better support the day-to-day challenges faced by parents raising autistic children, particularly in the early years. To address this knowledge gap, the aim of this study was to determine the association between self-reported parental stress, child characteristics and emotional profile, and QoL in a national sample of children attending Autism Specific Early Learning and Care Centres (ASELCCs) across Australia. We hypothesised that higher parental stress, child autism traits, and social determinants of health are significantly associated with QoL.