Paper short abstract:

Reflecting on a programme of research in autism and learning disability services, this paper demonstrates the value of collaborative enquiry with supported people and practitioners to better include those with diverse thinking and communication styles in research and service provision.

Paper long abstract:

This paper reflects on a programme of applied research in services for autistic people in Scotland, many of whom also have an intellectual disability. The ethical imperatives for making autism research more inclusive parallel the drive for better involving supported autistic people in decisions about their services. At Scottish Autism methods for engaging people with a range of communication needs in both research and decisions about service provision have developed together. This has been achieved through a collaborative process that de-centres the professional researcher and makes space for supported autistic people and practitioners to undertake critical enquiry and innovation.

Drawing on anthropological thinking, the programme has eschewed standardised research measures in order to amplify the voices of supported autistic people in whatever communication medium they prefer. Drawing on methods established in day-to-day practice, we have utilised visual supports, video work, assisted communication apps, and participant observation to capture the experiences of supported autistic people and to navigate consent to participate. Our work stresses the need for authenticity of voice, expressed in a range of communication media, in a context where supported people’s voices are often occluded by those of others.

Departing from deficit-focused narratives of impairment and instead considering diverse sociality, thinking and communication styles, this approach contrasts much of the clinical and psychological research that dominates this field. This is a shift that anthropologists, sensitive to multiple ways of communicating and being in the world, should be well-placed to make.