Discourses in autism assessment and diagnosis

• Main Author: Hagan, Karen
• Published: Open University 2018
• Online Access: https://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.748610

This thesis explores the range of discourses in which parents and professionals engage when a child is assessed and diagnosed with autism. The main focus is on the parents’ meaning-making in recognition of the investment parents have in the topic. It also takes an anti-discriminatory and emancipatory standpoint in recognition of the relative lack of voice parents are awarded in research and in the development of autism services. A team of professionals in an autism assessment centre were recruited along with parents of four families referred to them to receive an autism assessment for their child. Data were collected during routine assessment centre meetings between parents and professionals and in pre-assessment and post-diagnosis research interviews with parents. A critical discursive psychological approach was taken to analyse data. This synthetic approach, merging a macro-level and micro-level analysis, was used to explore the application of diagnostic criteria, policies and protocols as discursive resources alongside analysis of talk-in-action. The findings of the research programme produced three themes for the thesis: knowledge, power and possibilities. In relation to the first theme, parents talk and the practices of autism assessment and diagnosis, produced a distinction between expert ‘knowledge’ and parents’ ways of ‘knowing’. The two forms of knowledge were not of equal value in the assessment process, varying in the situated power and influence they could wield. In relation to the second theme, the thesis examined both how parents were subjectified by the processes and discourses of diagnosis and how professionals were subjectified as agents of policy and protocol. Analysis of exchanges between parents and professionals exposed further practices of self-subjection, but also identified some strategies of resistance. Prevalence rates of autism diagnosis and the challenges faced by parents and service providers mean this is currently an area of research of considerable applied significance. This thesis aims to contribute specifically to knowledge about how assessment and diagnostic practice might be improved, ultimately proposing a shift in the approach to autism diagnosis. As such, the third theme, possibilities, examined both the constraints on parents’, and professionals’, discourses in the diagnosis of a child and the opportunities to transcend those constraints. It highlighted the benefits of learning from approaches to diagnostic practices based around open dialogue. Future research could develop the work here to focus on professional meaning-making. It might also consider the complex situation of parents of children referred with autistic characteristics who do not receive a diagnosis.