Psychosocial adjustment of siblings of children with Autism Spectrum Disorder (ASD) in Taiwan and the United Kingdom: influence of BAP-characteristics, copying styles, social support and demographic factors
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Having a child or sibling with an Autism Spectrum Disorder (ASD) may be a positive experience, but it influences every family member differently. The present thesis examined the psychosocial adjustment of typically developing (TD) siblings of children with ASD and the extent to which this is impacted by key demographic and psychological variables. In addition, the influence of variables more specific to the families of children with ASD were considered, such as the broader autism phenotype (BAP) in parents and siblings, and the severity of symptoms in the child with ASD. A cross-cultural perspective was also adopted, in order to compare the coping and adjustment processes of siblings of children with ASD within two different cultures - Taiwan and the United Kingdom (UK). A combination of the Double ABCX Model and the Diathesis-Stress Model was used to explore: the influence of BAP-related traits; the interaction between coping, stressors, and support resources; and how these variables influenced TD siblings‘ adjustment outcome in the two locations. The research model was explored in two, interlinked studies using complimentary quantitative and qualitative methods. The first study was a large-scale questionnaire study including 89 and 77 parent-TD sibling dyads, in Taiwan and the UK, respectively. The findings indicated that UK siblings evaluated themselves as having significantly more adjustment difficulties but also significantly higher prosocial behaviour than their Taiwanese counterparts. Furthermore, there were substantial differences in terms of the variables which predicted TD siblings‘ adjustment outcome between the two countries. Taiwanese TD siblings‘ adjustment was more related to children‘s internal characteristics, while the UK TD siblings were influenced by both internal and external variables. The benefits of social support for adjustment were also evident in both countries. The discrepancies between parents and TD siblings‘ reports could be interpreted as resulting from culturally-specific patterns in parent evaluation of child behaviours. The siblings‘ level of BAP traits was also found to moderate the relation between ethnicity/culture and TD siblings‘ self-report adjustment difficulties. If Taiwanese TD siblings were reported to have higher BAP level by their parents, they showed fewer adjustment difficulties than those with lower BAP level, whereas the opposite pattern was found in UK siblings. This may indicate that for Taiwanese TD siblings‘ BAP level had a negative impact on their ability to evaluate their adjustment difficulties. Seven parent-TD sibling dyads from each country participated in the follow-up interview study. From thematic analysis of the data, a negative tone in the descriptions of the influence of ASD on the TD sibling was more evident in parents‘ and TD siblings‘ transcription in Taiwan, while a more balanced tone was apparent in the UK families. With the emphasis on involving their children in decisions about the child with ASD and providing age-appropriate information from the UK parents, it was speculated that UK siblings had a greater understanding of their parents‘ stress. Various types of support service were mentioned in the UK, whereas the availability of social services and support was relatively limited in Taiwan, whether for parents or TD siblings. Taken together, the findings from the two studies have important implications for clinical and educational settings. UK siblings‘ adjustment could be enhanced through modelling the coping of parents, while Taiwanese siblings could benefit from increased social support from peers. Health professionals should be aware of the influence of the BAP level displayed in parents and TD siblings, which might change the way they experience stress and respond under pressure. This thesis emphasised the importance of using TD siblings‘ report in comparison with parents‘ evaluation. Some potential relations, such as between BAP level and the coping style of parents and TD siblings remain unclear. With further development of self-report measurements, future research could replicate the present research design to clarify the influence of the variables discussed.