Through semi-structured interviews we asked 24 autistic adults about three main topics: their characteristics, repetitive motor movements and behaviours and experiences with treatments and services for autism. The research team used a sampling frame to recruit participants of varying support needs and therefore participants’ support needs ranged from living independently to living in residential care. Inclusion criteria were being over 18 years old, having capacity to consent, and having a diagnosis of an autism spectrum disorder. The aim of this research was to provide evidence about these topics gathered from autistic adults themselves. Exploring Diagnosis is a research project based at the University of Exeter, focussing on the role that diagnosis plays in individual and professional understandings of health and illness using autism spectrum disorder diagnosis as a case study. This project explores adults' and clinicians’ experiences of the utility and consequences of diagnostic categorisation. Autism diagnosis is particularly relevant because the label is increasingly applied, the diagnosis has clear costs and benefits, and its application is frequently contested. It is important to ask why, if, and how, diagnosis is of benefit. The outputs of this project are: a series of academic articles, two books and three short films exploring the themes of Diagnosis, Neurodiversity and Art. Datasets included: Interviews with autistic adults (IWAA); Pupil’s attitudes to Autistic and ADHD peer (PAAAP); and Healthcare Professionals' diagnostic decision-making: observational and interview data (HCPDD).
Three researchers conducted 28 semi-structured interviews with 24 participants across two stages (stage 1, N=22 and stage 2, N=6). Stage 2 aimed to probe further into developing themes specifically about characteristics and repetitive behaviours. Four people were re-interviewed as well as 2 new participants in Stage 2. Participants were recruited through residential homes specialising in housing autistic adults, a training centre for autistic adults and existing networks. Of these, 26 took place face-to-face in a dedicated quiet room and 2 took place online via email (this was done due to the geographical distance of the participants). Participants had the option to have a parent/carer present during the face-to-face interview, 8 chose to do this. Mean interview length was 59 minutes. The topic guides for both stages of interviews were a loose guide for interviewers, enabling researchers to steer conversation around questions of interest; they did not repeat the guide verbatim.
