By taking part in research, autistic people and their families can help us to develop better supports for everyone in the community. For Paula and Charley, taking part in our research also had a positive impact personally.
As a paediatric nurse, I knew pretty early on that there was something different about Charley, although it took a while for professionals and family to agree with my concerns. He didn’t make eye contact and as soon as he could move around, he was climbing the walls! He was so clearly different from his twin sister Daisy. Charley was diagnosed three years ago at that same time we got involved in this research study at the University of Reading.
Experience of being a research volunteer
Taking part in this research was a great opportunity to learn more about the sensory issues that Charley has, which I could see were linked to his anxiety and impacted his life massively. Learning more about his sensory needs during the study helped me to guide his nursery and his school to support him better. Despite going to a school with an autism unit, the staff didn’t really understand his needs. They’d get him to wear ear defenders all the time to reduce the sensory impact of the classroom, but Charley’s sensory needs go far beyond sound, which often he can cope with. The study helped me to understand that.
The research staff were wonderful with Charley. They really understood him, at a time when so few people did.
The research started with a long session at the University where Charley was given activities to do whilst new sensory objects were brought into the room – such as a remote control spider toy or flashing lights. We also filled in lots of questionnaires throughout the study. For a boy that normally struggles to go to new places, he was really comfortable at the university and it felt good to be doing something that he seemed to enjoy which might help children like him in the future.
The importance of research
Seeing Charley doing and saying things we never thought possible is a constant reminder that we owe it to autistic children to do better. I hope that research like this leads to the support they need early on, and that this knowledge helps professionals to understand our children better too. There is so much stigma and misunderstanding around autism, anything that changes perceptions and expectations of children like Charley is vitally important.
I’ve only just started to learn about what Autistica do, but I’m interested to learn more. As an older parent, it’s reassuring to know that they are carrying out research with adults as well as children. It gives me hope that Charley won’t be reliant on our daughter as a carer in the future. We hope that research can lead to services that will allow him to live as independently and happy as possible.