This project is about engaging adults on the autism spectrum and their relatives in research.
At least 1% of adults are on the autism spectrum. However, very little research has been undertaken into the life experiences of adults and older people on the autism spectrum, and how these can be improved.
To address this significant research gap, in January 2015, we began a research programme about the life experiences of adults on the autism spectrum and their relatives/carers. This project is being led by Newcastle University researchers, and funded by the research charity Autistica.
What people are saying about the study
"I was diagnosed with Asperger autism when I was 69. It made sense of so much. I am very keen to help with a better understanding of how we age, and how best to manage our old age. NAS talks of the first generation reaching 60. There seems to be a general assumption that we get better at managing life as we grow up, get older etc.
I notice many difficulties looming that were not present even two years ago, and wonder who is looking at how we cope. What are the key changes from, say, 70 on compared with younger but mature ASC people? And with other non-ASC over seventies?
Filling in the questionnaire was intense, and at the same time a relief. So important to add lived experience to all those click/pattern tests. However valuable they don't fully explain why we can't manage so much of our lives. A fair wind to all your work, and thanks again."
"I have filled out the online questionnaire and if it helps then I am always happy to cooperate. It never takes up too much time and it's for a really great project."
Our study is looking for adults who are diagnosed, adults who are yet to be diagnosed, adults who are not diagnosed but think they are on the spectrum and people with caring responsibilities for an adult on the spectrum. People with no capacity to make an informed consent can also join if a carer is willing to fill out their questionnaire from their point of view.