What does autism mean to autistic adults with intellectual disability
Research type
Research Study
Full title
How is autism experienced and understood by autistic adults with co-occurring intellectual disability?
IRAS ID
353757
Contact name
Isabelle Utley
Contact email
Sponsor organisation
University of Stirling
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
Autism and intellectual disability (ID) are diagnoses that can co-occur. Intellectual disability is also know as learning disability in Scotland. Scottish Government (2018) suggest that 32% of autistic people also have ID. There has been an increase in adult autism diagnoses and research focusing on the outcome of this diagnosis. Autistic people with ID are likely to have communication and literacy difficulties meaning that taking part in these research studies would have been challenging.
Some clinicians debate about the relevance of autism diagnosis for adults who have ID. The aim of this study is to find out how autistic adults with ID understand and experience autism. Answering this question will provide valuable information for clinicians who are involved in supporting autistic people with ID and in particular diagnostic services.
Up to 15 autistic adults with ID will be invited to attend an interview to answer questions about being autistic. Participants will be recruited through NHS Learning Disability teams and social care providers such as Scottish Autism. An initial meeting will provide time to ensure informed consent and collect information to support participants sensory and communication preferences. Following this, with consent, face to face interviews will be audio recorded and transcribed for analysis. Reflexive thematic analysis will be used to interpret data that has been collected, with the identities of the participants being anonymsied. Interviews will take place at a location preferred by the participant. Inclusion criteria for the autistic adult with ID is that they can use spoken, written or alternative communication to answer questions and give informed consent to this study. Adults are excluded if they are unable to communicate in English or they have had previous clinical involvement with the chief investigator.
REC name
North West - Haydock Research Ethics Committee
REC reference
25/NW/0125
Date of REC Opinion
16 Apr 2025
REC opinion
Favourable Opinion