Participatory research and theory building: understanding adults with Asperger's syndrome

A participatory research project was conducted with a neuro-typical researcher (someone who has not got Asperger’s syndrome or autism) and three co-researchers with Asperger’s syndrome. Every stage of the research was... [ view full abstract ]

A participatory research project was conducted with a neuro-typical researcher (someone who has not got Asperger’s syndrome or autism) and three co-researchers with Asperger’s syndrome. Every stage of the research was collaborative with the researcher and co-researcher designing research tools and collecting and analysing data. The aim of the research was to ascertain what support people with Asperger’s syndrome want. Other adults with Asperger’s syndrome took part by way of a questionnaire as well as in interviews and a focus group. The co-researchers and the researcher analysed and interpreted the data . From this analysis and interpretation, theory was produced. This theory production was in the form of a radically different way of understanding Asperger’s syndrome. The model which the research proposes is based on the mutual responsibility of people with Asperger’s syndrome and neuro-typical people to understand each other. The theory production from the research challenges the widely accepted deficit model of understanding Asperger’s syndrome and instead proposes the model of mutual understanding. This research offers a significant contribution to an area of social inequalities and offers a way of transforming the relationship between people with Asperger’s syndrome and neuro-typical people. It offers this in terms of the methodology used and in terms of the knowledge production. The knowledge that has been produced offers a new way of understanding relationships between groups of people and has applications beyond the original context. The findings are being used as a model for understanding the experience of students in Higher Education, children with Attention Deficit Hyperactivity Disorder and people with a learning disability. It has the potential to be applied to other many other socially disadvantaged groups. This research demonstrates what can be achieved through a participatory methodology.