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: |
|
| 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: |
| From | To |
|---|
| 1 October 2015 | 1 October 2020 |
|
| Date published: |
22 Aug 2019 13:10
|
| Last modified: |
22 Aug 2019 13:11
|
| Collection period: |
| Date from: | Date to: |
|---|
| 17 January 2017 | 13 March 2018 |
|
| Geographical area: |
South West of England, UK |
| Country: |
United Kingdom |
| Data collection method: |
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. |
| Observation unit: |
Individual |
| Kind of data: |
Text |
| Type of data: |
Qualitative and mixed methods data |
| Resource language: |
English |
|
| Data sourcing, processing and preparation: |
All interviews were recorded using recording devices. Recordings were shared with a professional transcriber using the University of Exeter’s secure sharing platform. A denaturalised approach to transcription was taken because the focus was on the content of what was said and the themes that emerged from the conversations with participants. Transcripts were returned in Word format and anonymised removing identifying names and places.
|
| Rights owners: |
| Name |
Affiliation |
ORCID (as URL) |
| Russell Ginny |
University of Exeter |
|
|
| Contact: |
|
| Notes on access: |
The Data Collection is available for download to users registered with the UK Data Service.
|
| Publisher: |
UK Data Service
|
| Last modified: |
22 Aug 2019 13:11
|
|
Available Files
Data
Documentation
Read me
Edit item (login required)
 |
Edit Item |
