Being an older sibling of a sister with special needs herself, Joy, the PhD student who ran this project, found she really needed more support to help her cope with challenging or meaningful things in the family. She didn’t want to upset her parents when they needed to take care of her sister, and the things they promised her were often postponed. She had so many questions during her childhood/adolescence, “Why I am the one who needs to compromise?” or “Where are these confused feelings coming from?” After several years, and when she reached adulthood, she then realized that this is what we do for family.
Why did we do this study?
When she looks back at what her family have been through, she wishes there had been someone who could have given siblings like herself more support. With a greater understanding of the siblings’ feelings, they might be in a stronger position to help, contribute and feel stronger in their ability to cope. The TUKS project aims to understand the experience of siblings having a brother/sister with autism spectrum disorders (ASD) (including Asperger Syndrome) and how siblings cope with challenges in their life. Importantly, the TUKS project took a multicultural perspective, exploring whether young people in the UK and in Taiwan have different experiences and responses to have a sibling with autism.
What did we do?
Over 150 neurotypical children from Taiwan and from the UK took part in the study, all of them had an autistic sibling. Their parents and themselves completed several questionnaires regarding several family and personal details, such as life events and subjective well-being of the neurotypical child, social support received by the family, or their coping strategies. A few of the parent-neurotypical child pairs also took part in interviews to better understand their experiences.
What did we find?
We found that while the neurotypical siblings in Taiwan were rather well adjusted, the children in the UK were facing more difficulties, in particular with their peers. We found that the neurotypical siblings coping abilities were different between the UK and Taiwan, and that the factors helping the children to cope were also different between countries.
Overall, we found that culture, attitudes, traditions, and availability of resources greatly impacted the ability of parents and neurotypical siblings to cope with the difficulties they encounter.
The findings have been published in a peer-reviewed journal, and are available at:
- Tsai, H. W. J., Cebula, K., & Fletcher-Watson, S. (2016). Influences on the psychosocial adjustment of siblings of children with autism spectrum disorder in Taiwan and the United Kingdom. Research in Autism Spectrum Disorders, 32, 115-129.
- Tsai, H. W. J., Cebula, K., Liang, S. H., & Fletcher-Watson, S. (2018). Siblings’ experiences of growing up with children with autism in Taiwan and the United Kingdom. Research in developmental disabilities, 83, 206-216. https://doi.org/10.1016/j.ridd.201
- Tsai, H.J., Cebula, K. & Fletcher-Watson, S. The Role of the Broader Autism Phenotype and Environmental Stressors in the Adjustment of Siblings of Children with Autism Spectrum Disorders in Taiwan and the United Kingdom. J Autism Dev Disord47, 2363–2377 (2017). https://doi.org/10.1007/s10803-017-3134-0
Who conducted and funded the project?
The TUKS (Taiwan UK Siblings) project was conducted by Joy Tsai, a PhD student at the University of Edinburgh. The project supervisors were Katie Cebula, Sue Fletcher-Watson, and Evelyn McGregor. The study was funded by the Principal’s Career Development PhD Scholarship (University of Edinburgh).