The primary aims of the study were to examine the relationship between parental QoL and autism symptom severity using the QoLA questionnaire , which has been developed to specifically measure the QoL of parents of children on the autism spectrum. Furthermore, we sought to determine whether this relationship can be explained by sociodemographic factors, a child’s cognitive level, or the child’s behavioural profile. The parents of children on the autism spectrum who had at least one sibling were found to have a better overall perception of their QoL. This finding implies there may be a buffering effect on parental QoL when the child on the autism spectrum has at least one other sibling who does not have autism. This is in keeping with previous research, which had reported a protective effect on parental emotional QoL when the child on the autism spectrum had siblings without ASD . It is possible that parental expectations and therefore parental disappointments would be much greater if the child on the autism spectrum was the only child, thereby having a more pronounced impact on parental QoL . Further, the presence of siblings may buffer the limited bonding/attachment and reciprocal social interactions that can be present when a child is on the autism spectrum which in turn may significantly impact the parental sense of validation of themselves as a provider of nurturing care and their role as parents . In this regard, having other children who do not have ASD might counter this negative self-evaluation of parents about their parenting capacity and confidence . Further, enhanced levels of physical health QoL has been identified in parents who have other children to potentially assist with caretaking responsibilities and temporarily alleviating parents of caretaking duties . However, the effects of having siblings who do not have ASD on parents is mixed in the literature, although this may be due to cultural differences, as studies conducted in Jordan, which possesses a shared, collectivist culture wherein domestic and caretaking tasks are shared amongst the children, report similar buffering effects on maternal QoL .
Autism severity was negatively correlated with parental perception of their QoL. Previous research has also demonstrated that greater severity of autism symptoms are associated with decreased parental QoL . Mothers of children with more autism symptomology had a higher risk of having depression and were more likely to report a negative life impact on relationships with partners, extended family, and friends . Higher autism severity can often increase caretaking and educational needs of a child, which can compromise parents’ social engagement with friends and family  and their career . However, while autism severity may negatively impact parental quality of life, parental optimism mediates this relationship, which holds promise for development of interventions that focus on cultivating parental optimism to buffer the potential negative impacts of increased autism severity in children .
Internalising behaviour problems influenced parental perception of their QoL and also the parents’ perception of how problematic their child’s autism-specific difficulties are for them. Increased internalising behaviour problems (as measured by the VABS) were associated with lower parental perception of their QoL. Higher rates of problems related to anxiety/depressed and withdrawn/depressed (CBCL) were also associated with lower parental perception of their QoL and with increased parents’ perception of how problematic their child’s autism-specific difficulties are for them. As previous literature has shown parental stress is at heightened levels with increasing internalising behaviours, this may exert a diminishing effect on parental QoL . Moreover, maternal parenting stress has been shown to increase with increasing internalising behaviours, namely anxious and depressive symptoms, which is aligned with the present findings as greater internalising behaviours are associated with increases in how problematic parents feel their child’s autism-specific behaviour is . Given increases in parental stress can result from greater severity of maladaptive behaviours  and internalising behaviours  this may be the driving factor behind compromised parental QoL in the present work.
A dysregulated behavioural profile was associated with both lower parental perception of their QoL and increased parents’ perception of how problematic their child’s autism-specific difficulties are for them. These findings build upon previous literature which determined greater use of externalising behaviour by children on the autism spectrum correlated with lower overall family QoL and heightened maternal and parental stress [32, 67, 68]. Moreover, externalising behaviours, such as emotional outbursts, and reduced use of passive comforting strategies impact family and parental QoL in a negative manner , which may be attributed to the fact that externalising behaviours are more visible and salient. Externalising, hyperactive behaviour can exacerbate parenting stress levels, which may be attributed to potential external disapproval garnered from behaviours that are socially inappropriate or disruptive . Parental emotional coaching may be a valuable tool in buffering the potential negative effects of externalising behaviours, as it has been found to mitigate the effects of externalising behaviours on parents of children on the autism spectrum .
Specifically, attention problems, a subscale of the dysregulated profile, were associated with lower parental perception of their QoL, which may be due to the fact that a greater number of psychiatric comorbidities, like attention problems, in children on the autism spectrum can place increased stress on parents, which has been shown to reduce QoL and increase risk for depression in mothers . Increased attention problems have also been associated with parents feeling a dysfunction in the relationship with their child and greater levels of stress, illuminating the heightened stress and issues in the parent-child interaction that may result from greater attentional issues . Greater levels of maternal stress has been shown to be associated with more emotionally reactive and withdrawn children, and those who have more attention problems . Poorer parental QoL therefore may be as a result of increased stress and issues in the parent-child dynamic when managing multiple psychiatric issues.
Another component of a dysregulated profile, aggressive behaviour, was associated with increased parents’ perception of how problematic their child’s autism-specific difficulties are for them. The negative impact of autistic behaviours on the parent with increased levels of aggressive behaviour may be due to the fact that aggressive behaviours and conduct problems predict higher levels of parental stress  which in turn may deteriorate parental QoL. Furthermore, aggressive behaviours in children on the autism spectrum can deteriorate the family dynamic, as it impacts daily routine and well-being of family, and can lead to financial strain and issues with engaging with already limited mental health services .
Parents of children on the autism spectrum with increased socialisation skills reported higher perception of their QoL. This is in line previous findings, wherein social impairment in children on the autism spectrum was associated with lower parental QoL and higher maternal stress . This may be due to increased fatigue with more severe social impairment, or stigma in social situations, or potential social isolation and decreased socialisation of the family to accommodate for the needs of the child . The findings of the influence of interpersonal relationships on how problematic a child’s autism-specific difficulties are perceived by the parent were mixed. While higher scores on interpersonal relationships were associated with lower parents’ perception of how problematic their child’s autism-specific difficulties are for them for unadjusted estimates, this finding was reversed when adjusted for play and leisure skills. While literature has found impaired social ability is associated with decreased parental QoL, and in the case of mothers, this relationship is mediated by childcare burden , the present mixed findings suggest further research is warranted.
Communication was shown to be positively correlated with parental perceptions of QoL in the present research, which echoes past research determining increases in communication were shown to have protective effects on parents reported QoL . Many parents of children on the autism spectrum express concern and stress regarding their communication with their child , it may be that improvements in the realms of communication alleviates parental stress and therefore improves perceived QoL.
We found no significant association between parental QoL and cognitive level, however, there was a positive relationship between communication and parental QoL. Previous findings in the literature identify that, much more than cognitive and communication level, it is the behavioural issues that are key for the family’s stress level and QoL . Given that behavioural issues have such a profound impact on parental QoL, this has significant implications for the need for targeted intervention of comorbid mental health challenges as part of the holistic assessment and management of ASD. Targeted intervention for comorbid behavioural dysregulation and associated mental health challenges is critical in the holistic assessment and management of children with ASD as parental stress and QoL were found to be integrally linked to children’s behavioural regulation profile. In this regard, it is noteworthy the association between better QoL and child’s higher socialisation scores.
Parental QoL also did not vary as a function of the child’s age. It is possible that the care requirements of children on the autism spectrum may remain high. Previous research has identified that the care requirements of children with complex care needs does not follow the trajectory of care requirements of typically developing children as the care requirements of children with complex needs may remain high .
Limitations of the present research must be considered when evaluating findings. Given parent self-report measures were used to measure adaptive functioning and behavioural profile rather than a standardised measure administered by a trained professional, this may have influenced the results. Moreover, the QoLA was only administered to parents of children on the autism spectrum below school age, and it is yet undetermined whether parental QoL may fluctuate over a child’s lifetime. Future research should implement more objective, standardised testing administered by a trained professional to minimise the influence of parental perceptions of their child and examine the fluctuations in parental QoL over the child’s lifetime.