Behavioural Profile of Anxiety in Individuals with Autism Spectrum Disorder (ASD) Who Speak Few or No Words and People with Genetic Syndromes Associated with ASD Symptomology
Objectives: To explore the parent-reported profile and behavioural markers of anxiety in autistic individuals and individuals with genetic syndromes associated with ASD who have severe to profound ID (non-verbal or odd words only on the Wessex Questionnaire).
Methods: A semi-structured bottom-up interview was completed with parents/carers. Interviews followed a schedule and a coding scheme. The interview focused on identifying behaviours that are present when individuals display anxiety and triggers of anxiety.Inter-rater reliability was established between two raters.Parents/carers completed questionnaires including the Social Communication Questionnaire (SCQ), the Wessex Questionnaire (a proxy measure of adaptive ability) and the Anxiety, Depression and Mood Scale (ADAMS).
Results: To date, 25 interviews have been completed with parents/carers of individuals with ASD (n=20; 85% male; mean age=18.9 years) and parents/carers of individuals with genetic syndromes associated with ASD (n=5; 40% male; mean age=11.8 years). The behaviours most frequently endorsed by parents/carers as being markers of anxiety were increased vocalisation (n=18), self-injury (n=13), repetitive behaviour (n=13), the need to flee (n=12) and pacing/restlessness (n=12). The most frequently endorsed triggers of anxiety were routine changes (n=17), sensory overload (n=15), specific phobias (n=12), social interactions (n=11) and new situations/unfamiliar settings (n=11). In the interview, parent-reported anxiety severity and the total number of anxiety triggers correlated with the general anxiety subscale of the ADAMS (rs=.434,p<0.05; rs=.462, p<0.05 respectively). Individuals with a clinical diagnosis of ASD scored higher on the general anxiety subscale of the ADAMS and had a significantly higher number of parent-reported triggers when compared to individuals with genetic syndromes (U=14.5, p<0.05; U=19.5, p<0.05 respectively). However, no relationships were identified between SCQ score, Wessex score and any of the anxiety/mood subscales from the ADAMS. By May 2019, we aim to present data from 50 families (ASD individuals, n=25; genetic syndromes, n=25) following the completion of additional interviews.
Conclusions: Parents/carers could describe behavioural markers observed in their children as a response to anxiety-provoking triggers.The information gathered from these interviews will be used to develop a clinical assessment tool for anxiety for autistic individuals with ID, which will then be validated by comparing scores on this measure to consensus clinical diagnosis.