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Background: Having a child on the autism spectrum (AS) is known to impact caregiver quality of life (QoL), time use, and stress. A co-occurring diagnosis of intellectual disability (ID) is common among children on the autism spectrum, with ID itself impacting caregiver outcomes. Method: This study sought to understand how co-occurring ID in children on the autism spectrum may influence caregiver-related outcomes. Secondary analysis of survey data from caregivers of 278 children on the autism spectrum with (n = 62) and without (n = 216) co-occurring ID was conducted, exploring impacts on caregiver QoL, stress, coping, and time-use. Results: Univariate analysis showed that caregivers of children on the autism spectrum with cooccurring ID reported greater levels of stress due to core symptoms and co-occurring physical conditions, and had different time use patterns then caregivers of children on the autism spectrum without co-occurring ID. Multivariate analysis, however, showed that caregivers of children on the autism spectrum with and without co-occurring ID differed only in the time they spent preparing meals, socialising with friends and accessing in-home respite care. Conclusions: The presence of co-occurring ID in children on the autism spectrum had limited impacts on caregiver-related outcomes. Families of children across the entire AS require adequate supports., Funding Agencies|Lishman Health Foundation

The aim of this thesis was to understand family experiences of noticing and help-seeking for child developmental delays and identify factors that impact pathways to service access. This PhD took a step back from the endpoint of service access and looked instead at the journey leading up to it – acknowledging that experiences during the steps of noticing delays, sharing them with others, and seeking support were vital to how and if parents engaged with early intervention services.

Background:A literature review in 2001 found that children with disabilities were frequently transported in unsafe conditions and further research was required to investigate the gap between regulations, standards and actual transportation practices. Objectives:To synthesize available evidence on the transportation of children with disabilities in road vehicles. Methods:Four databases were systematically searched: CINAHL; Medline; National Transport Library Catalogue (Sweden); and Transport Research International Documentation. Results:Nineteen studies ranging in methodological quality from poor to excellent were included in the review. The findings are presented under the following six major themes: child safety restraints, wheelchairs, vehicles, travel habits, parental and professional knowledge. The results are mapped onto two groups of children, those with behavioral problems and those with physical disabilities. Conclusion:The literature reflected little change across the six major themes since the previous review. Children with disabilities continue to be inappropriately restrained in vehicles, constituting an ongoing road safety problem. There is a strong need to increase parent knowledge, upskill health professionals and provide families with financial assistance to enable them to ensure the safe transportation of children with disabilities to minimize the risk of injury and fatalities on the road, and enhance their participation in the community.

PURPOSEAs computer-based interventions become commonplace for parents of children with neurodevelopmental disorders, this study sought to understand the experience of using a parent-delivered supplementary early intervention therapy for children with autism spectrum disorder grounded in a variety of behavioral, sensory, developmental, and relationship-based approaches and delivered via a tablet device. METHODSParental experiences using the 'Therapy Outcomes by You' (TOBY) application were collected through semi-structured interviews with 17 parents. RESULTSParents reported TOBY facilitated parent-child engagement, provided ideas for therapeutic activities, created feelings of empowerment, and positively impacted their child's development. Barriers to use included preparation time, execution of the intervention, and individual strengths and weaknesses of their child. CONCLUSIONThe overall parental experience of TOBY was positive when use of the application aligned with parental proficiency, opportunities for use, and importantly, the needs of the child.

Sleep problems are common in children with autism spectrum disorder (ASD). This meta-synthesis collated eight previously published systematic reviews examining the efficacy of sleep interventions in children with ASD in an attempt to present a clear analysis of trialed interventions. The collated reviews consider five major groups of sleep interventions for children with ASD: melatonin therapy, pharmacologic treatments other than melatonin, behavioral interventions, parent education/education programs, and alternative therapies (massage therapy, aromatherapy, and multivitamin and iron supplementation). These eight reviews were based on 38 original studies and address the efficacy of interventions across 17 sleep problem domains. The results of this meta-synthesis suggest that no single intervention is effective across all sleep problems in children with ASD. However, melatonin, behavioral interventions, and parent education/education program interventions appear the most effective at ameliorating multiple domains of sleep problems compared with other interventions. Due to the heterogeneous causative factors and presentations of disordered sleep, further research into the effectiveness of sleep interventions may target specific phenotypic subgroups rather than a broad analysis across the general ASD population. Similarly, future research needs to consider the efficacy of different polytherapeutic approaches in order to provide clinicians with evidence to inform best practice. In the meantime, this review supports clinicians' decision making for a majority of the identified sleep problems in the ASD population.

It is unknown if, and how, students redefine their sense of school belongingness after negotiating the transition to secondary school. The current study used longitudinal data from 266 students with, and without, disabilities who negotiated the transition from 52 primary schools to 152 secondary schools. The study presents the 13 most significant personal student and contextual factors associated with belongingness in the first year of secondary school. Student perception of school belongingness was found to be stable across the transition. No variability in school belongingness due to gender, disability or household-socio-economic status (SES) was noted. Primary school belongingness accounted for 22% of the variability in secondary school belongingness. Several personal student factors (competence, coping skills) and school factors (low-level classroom task-goal orientation), which influenced belongingness in primary school, continued to influence belongingness in secondary school. In secondary school, effort-goal orientation of the student and perception of their schools tolerance to disability were each associated with perception of school belongingness. Family factors did not influence belongingness in secondary school. Findings of the current study highlight the need for primary schools to foster belongingness among their students at an early age, and transfer students belongingness profiles as part of the handover documentation. Most of the factors that influenced school belongingness before and after the transition to secondary are amenable to change.

Vaz, S., Thomson, A., Cuomo, B., Falkmer, T., Chamberlain, A., & Black, M. H. (2021). Co-occurring intellectual disability and autism: Associations with stress, coping, time use, and quality of life in caregivers. Research in Autism Spectrum Disorders, 84, article 101765. https://doi.org/10.1016/j.rasd.2021.101765