Being an older sibling of a sister with special needs myself, I found I really needed more support to help me to cope with challenging or meaningful things in the family. I didn’t want to upset my parents when they needed to take care of my sister and therefore had to postpone the things they promised me. I had so many questions during my childhood/adolescence, “Why I am the one who needs to compromise?” or “Where are these confused feelings coming from?”
After several years and when I reached adulthood I then realized that this is what we do for family. When I look back at what my family have been through, I wish there had been someone who could have given us siblings more support. If there was more understanding of our feelings, we might be in a stronger position to help, contribute and feel stronger in our ability to cope.
The TUKS project aimed to understand the experience of siblings having a brother or sister with autism and how siblings cope with challenges in their life. The project adopted a cross-cultural viewpoint, exploring whether young people in the UK and in Taiwan have different experiences and responses to have a sibling with autism.
This poster presented during Innovative Learning week at the University of Edinburgh, gives an overview of the project and this TUKS UK summary report provides an accessible account of the main results. Joy recently submitted and successfully defended her thesis reporting on this project and now we are working to prepare one or two journal articles to share our findings with the academic community.
We are no longer recruiting for this project but if you have questions, please e-mail : firstname.lastname@example.org