Autism Research: an ethical issue and an issue of ethics

As the mother of a young man with Asperger Syndrome, the Company Secretary of PACT for Autism, an autism charity based in Essex, and a university lecturer whose duties include lecturing on education and social justice, the... [ view full abstract ]

As the mother of a young man with Asperger Syndrome, the Company Secretary of PACT for Autism, an autism charity based in Essex, and a university lecturer whose duties include lecturing on education and social justice, the availability of current, published research into the lived experience of people with autism is of significant importance. However, whilst research is available in which the lived experience is described and analysed by non-autistic researchers there is limited research by, or in collaboration with, active, autistic researchers.

Discussions with university colleagues on the possibility of undertaking research in collaboration with young adults with autism highlighted the difficulties in gaining the necessary ethical approval. These difficulties were centred on the paternalistic nature of university ethics policy which prioritised the protection of vulnerable participants above the need for empowering, participatory research.

This paper will discuss the possibility of expanding the amount of university based research involving active participants or co-researchers with autism. The discussion will focus on: redefining ‘vulnerability’ as applied to research participants; the adoption of a system of covenantal ethics to enable a reciprocal, ongoing relationship to develop between researcher and participant; and the replacing of the need for informed consent with an acceptance of ‘assent’ as an indication of the ability to agree to participate in research.

Research which influences, for example, policy or practice, should involve the full participation of those on whose lives it will have an impact. Ethics panels must find a way to enable such participation, not prevent it.