Research project on advocacy and autism

Abstract

This article presents the findings of a qualitative research project about the difficulties in accessing advocacy faced by adults labelled as having autism and Asperger’s Syndrome in the Northwest of England. It is also an example of partnership working between three organisations. The article examines both the process of team‐led (emancipatory) research and the project findings. Seven main themes emerged throughout the research: late diagnosis and lack of service support; bad experiences with systems of care; feelings of ‘not belonging’ (identity issues); barriers around communication and sensitivity towards individuals; lack of awareness and access to advocacy and rights; difficulties of ‘fitting into’ what is already available; and interest in developing knowledge around advocacy. Examination of the main themes pointed to a disturbing link between poor service response, episodes of crisis and mental ill health. The Carlisle People First Research Team is made up of 6 researchers who are labelled as having ‘learning difficulties’ who work in partnership with one other researcher.

Acknowledgements

The Research Team would like to thank all of the people involved in the pilot project who gave their views and welcomed our visits. We would also like to acknowledge the help and support of Professors Jan Walmsley and Dorothy Atkinson (Open University), Brenda Nally and Clare Graham (National Autistic Society), Marion Jones (Autism Development Worker) and ‘Awards for All’. We gratefully acknowledge the use of the CHANGE picture bank and Inspired Services for our illustrations.

Figure 3 Some members of the Carlisle People first Research Team

Notes

1. Circles of support can be defined as where an individual (the focus person) may have difficulties in getting heard. The person chooses people who know them well to form a circle, which then assists the person in making choices and decisions. Circles are supported by a facilitator from an independent advocacy organization. They help the focus person plan meetings and ensure space is given to all participants at a meeting. They deal with arrangements and administration.