Exploring diagnosis: Interviews with autistic adults 2017-2018

Russell, Ginny and Elliott , Daisy and Elphick, Chris (2019). Exploring diagnosis: Interviews with autistic adults 2017-2018. [Data Collection]. Colchester, Essex: UK Data Service. 10.5255/UKDA-SN-853753

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).

Data description (abstract)

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.

Data creators:
Creator Name Affiliation ORCID (as URL)
Russell Ginny University of Exeter https://orcid.org/0000-0002-6440-1167
Elliott Daisy University of Exeter
Elphick Chris University of Exeter
Sponsors: Wellcome Trust
Grant reference: Wellcome Trust [108676/Z/15/Z]
Topic classification: Health
Keywords: autism spectrum disorders, quality of life, employment
Project title: Exploring Diagnosis: Autism and Neurodiversity
Grant holders: Dr Ginny Russell
Project dates:
1 October 20151 October 2020
Date published: 22 Aug 2019 13:10
Last modified: 22 Aug 2019 13:11

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