To fully understand the experience that someone has been through we need to hear it from them directly. Otherwise, we are can only make assumptions or best guesses as to how that experience was felt internally. Historically, autism research has been conducted on autistic people where non-autistic (allistic) researchers will consult other people such as parents/carers, healthcare professionals about ways to help autistic people. Co-design and participatory approaches are being used in recent autism research to highlight the importance of working with autistic people.

We understand the importance of lived experience, and the value of co-design and participatory approaches in research. The lead researcher is autistic with lived experience of breast cancer, some members of the research team are autistic and there will be a Lived Experience Advisory Group made up of autistic people who have had breast cancer.

We will be using the findings of each of the work packages to inform the next work package. The questions asked at the interviews and as part of the survey will be designed by autistic people to ensure that the right questions are being asked in the right way.