Anxiety in autism and intellectual disability
Research type
Research Study
Full title
Person and environmental characteristics associated with anxiety in minimally verbal individuals with intellectual disability (and autism)
IRAS ID
257157
Contact name
Jane Waite
Contact email
Sponsor organisation
Aston University
Clinicaltrials.gov Identifier
TRUST/VC/AC/SG/5009-7975, Additional funding from The Baily Thomas Charitable Fund
Duration of Study in the UK
2 years, 0 months, 1 days
Research summary
Many minimally verbal individuals with intellectual disabilities (ID) cannot easily report on internal feelings and experiences; therefore, clinicians need to focus on changes in a person’s behaviour, when making a diagnosis of an anxiety disorder. However, existing assessment tools of anxiety often include questions about behaviours that could also indicate pain. This overlap in questions makes the diagnosis of anxiety in individuals with ID very complicated.
Ineffective identification of anxiety blocks individuals with ID from accessing appropriate care-pathways and interventions. Adding to this, a comorbid diagnosis of autism spectrum disorder (ASD) further complicates the identification and assessment of anxiety especially for those who are minimally verbal.
The primary aim of this study focuses on validating a previously developed assessment tool for anxiety (Clinical Anxiety Screen for people with Severe to Profound Intellectual Disabilities;ClASP-ID) in individuals with ID (and ASD) who are minimally verbal. The study will involve completing direct assessments with 40 individuals with ID (and ASD) who are minimally verbal to determine if behaviours that are present during the assessments concur with scores on the tool.
It is planned that this tool will be used to streamline care pathways, improving the efficiency of services for individuals with ID (and ASD) who are minimally verbal.The secondary aim of this study is to identify correlates of anxiety. Parents/carers and individuals with ID (and ASD) who are minimally verbal will complete measures and direct assessments respectively to assess anxiety correlates. Knowledge of risk markers will improve our understanding of the characteristics associated with anxiety, enabling improved identification of those at risk of experiencing anxiety leading to earlier intervention and improved outcomes.
The study population is individuals with ID and/or ASD who are minimally verbal. For the rest of this application, the population will be referred to as individuals with ID.
REC name
West Midlands - Coventry & Warwickshire Research Ethics Committee
REC reference
19/WM/0154
Date of REC Opinion
6 Jun 2019
REC opinion
Favourable Opinion