Raising a child with an Autism Spectrum Disorder (ASD) presents significant challenges for parents that potentially have a impact on their health and wellbeing. The current study examined the extent to which parents experience fatigue and its relationship to other aspects of wellbeing and parenting. Fifty mothers of children with an ASD aged 2-5 years participated in the study. Compared with mothers of typically developing children, mothers of children with an ASD reported significantly higher fatigue, with overall scores in the moderate range. Factors associated with high levels of fatigue were poor maternal sleep quality, a high need for social support and poor quality of physical activity. Fatigue was also significantly related to other aspects of wellbeing, including stress, anxiety and depression, and lower parenting efficacy and satisfaction. The need for interventions to specifically target parental fatigue and its impact on families affected by ASDs both in the short and long term is clearly indicated.
Raising a child with an autism spectrum disorder (ASD) can be exhausting, which has the potential to impact on parental health and wellbeing. The current study investigated the influence of maternal fatigue and coping on the relationship between children's problematic behaviours and maternal stress for 65 mothers of young children (aged 2-5 years) with ASDs. Results showed that maternal fatigue but not maladaptive coping mediated the relationship between problematic child behaviours and maternal stress. These findings suggest child behaviour difficulties may contribute to parental fatigue, which in turn may influence use of ineffective coping strategies and increased stress. The significance of fatigue on maternal wellbeing was highlighted as an important area for consideration in families of children with an ASD.
Key words autism spectrum disorder, child problem behaviours, family functioning, parent mental health, parent stress. Correspondence Rachel Jellett, AbstractBackground: Parents of young children with Autism Spectrum Disorders (ASDs) are often relied on to help implement therapy with their child, which occurs within a family context. Therefore, it is important to understand and support families where there is a child with an ASD. Although individual parent factors have received substantial research attention, fewer studies have investigated family functioning. This study explored the relationship between child behaviour problems and family functioning in families where there was a preschooler with an ASD. Parent mental health difficulties, including stress, fatigue, and depressive symptoms, were investigated as mediators in this relationship.Method: Participants included 97 parents with a preschooler diagnosed with an ASD. Parents completed an online questionnaire reporting on child behaviour problems, their own symptoms of stress, depression and fatigue, and family functioning.Results: Path analysis showed that the relationship between child behaviour problems and family functioning was mediated by depressive symptoms, but not stress and fatigue.Conclusions: These results highlighted one way that ASDs can impact on the family system, suggesting that when parents are overburdened by behaviour problems, there are implications for the family. The importance of providing clinical interventions and support to strengthen parent mental health and family functioning is discussed.
Prior research has studied preferences for identity- or person-first language among persons with an autism diagnosis. The current study differs from this previous body of research by specifically examining quantitative predictors of language preferences through a social identity theoretical approach, thereby leading to a better understanding of psychological and social factors that might underlie language use and preference within the autistic community. Australian adults with an autism diagnosis ( N = 198) completed the measures of autism knowledge, internalised stigma, and autism identity to determine whether these factors predict language preference. Results indicated a stronger autism identity was associated with a preference for identity-first terms (autistic/autistic person) and finding these less offensive. Contrastingly, stigma was associated with finding identity-first language less favourable and more offensive. Person-first terms (e.g. person with autism) were not associated with any of the predictors. Together, these findings suggest decision-making around identity-first language is influenced by a strong sense of autistic identity and experiences of stigma. Lay abstract There is ongoing discussion around what language is acceptable when talking about someone with an autism diagnosis, especially regarding person-first (e.g. person with autism) or identity-first (e.g. autistic person) language. We asked 198 Australian adults with an autism diagnosis what terminology they prefer and what they find offensive. We also asked questions to understand their experience of stigma, their autism knowledge and how much they endorse an autism identity, to investigate if these factors were associated with their language preferences. Overall, there was no significant association between these three factors and person-first terminology. For identity-first terms, those who endorse a stronger autism identity tended to find identity-first terms more preferable and less offensive, whereas those who reported greater experiences and internalisation of stigma tended to find identity-first terms less preferable and more offensive. Previous research has tended to ask what language participants prefer. The findings of this work help provide some context as to why people prefer or find offensive specific terms, at least for identity-first language.
Background Autism spectrum disorder (ASD) is a complex neurodevelopmental condition whose biological basis is yet to be elucidated. The Australian Autism Biobank (AAB) is an initiative of the Cooperative Research Centre for Living with Autism (Autism CRC) to establish an Australian resource of biospecimens, phenotypes and genomic data for research on autism. Methods Genome-wide single-nucleotide polymorphism genotypes were available for 2,477 individuals (after quality control) from 546 families (436 complete), including 886 participants aged 2 to 17 years with diagnosed (n = 871) or suspected (n = 15) ASD, 218 siblings without ASD, 1,256 parents, and 117 unrelated children without an ASD diagnosis. The genetic data were used to confirm familial relationships and assign ancestry, which was majority European (n = 1,964 European individuals). We generated polygenic scores (PGS) for ASD, IQ, chronotype and height in the subset of Europeans, and in 3,490 unrelated ancestry-matched participants from the UK Biobank. We tested for group differences for each PGS, and performed prediction analyses for related phenotypes in the AAB. We called copy-number variants (CNVs) in all participants, and intersected these with high-confidence ASD- and intellectual disability (ID)-associated CNVs and genes from the public domain. Results The ASD (p = 6.1e−13), sibling (p = 4.9e−3) and unrelated (p = 3.0e−3) groups had significantly higher ASD PGS than UK Biobank controls, whereas this was not the case for height—a control trait. The IQ PGS was a significant predictor of measured IQ in undiagnosed children (r = 0.24, p = 2.1e−3) and parents (r = 0.17, p = 8.0e−7; 4.0% of variance), but not the ASD group. Chronotype PGS predicted sleep disturbances within the ASD group (r = 0.13, p = 1.9e−3; 1.3% of variance). In the CNV analysis, we identified 13 individuals with CNVs overlapping ASD/ID-associated CNVs, and 12 with CNVs overlapping ASD/ID/developmental delay-associated genes identified on the basis of de novo variants. Limitations This dataset is modest in size, and the publicly-available genome-wide-association-study (GWAS) summary statistics used to calculate PGS for ASD and other traits are relatively underpowered. Conclusions We report on common genetic variation and rare CNVs within the AAB. Prediction analyses using currently available GWAS summary statistics are largely consistent with expected relationships based on published studies. As the size of publicly-available GWAS summary statistics grows, the phenotypic depth of the AAB dataset will provide many opportunities for analyses of autism profiles and co-occurring conditions, including when integrated with other omics datasets generated from AAB biospecimens (blood, urine, stool, hair).
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