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

Background: Individuals diagnosed with Autism Spectrum Disorder (ASD) are at heightened risk of experiencing mental health problems. Morespecifically,the prevalence of anxiety is estimated at 11-84% with most studies reporting a rate of approximately 40%. The majority of anxiety research has focused on individuals with ASD who have an IQ>70. The presence of severe to profound intellectual disability (ID) in ASD, and associated communication impairments, poses a challenge for the identification of anxiety because many individuals are unable to report internal states. Observational assessments and parental rating scales of anxiety for people with ASD and severe to profound ID are confounded by significant overlap between behavioural markers of anxiety, depression and pain. Developing a deeper understanding of the profile of anxiety and the behavioural markers associated with anxiety in this population will aid clinicians in the assessment and identification of anxiety.

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 (r_s=.434,p<0.05; r_s=.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.