Utilising Interview Methodology to Inform the Development of New Clinical Assessment Tools for Anxiety in Autistic Individuals Who Speak Few or no Words.

Researchers interviewed parents and clinicians about anxiety in autistic people with intellectual disability who don't speak much. Parents noticed anxiety showed up as increased sounds, avoiding things, and challenging behaviours. Changes to daily routines were major triggers. Clinicians said it's important to know what's normal for each person and check if other things might be causing distress. This research helps create better ways to identify anxiety in this group.

This qualitative study explored anxiety presentation in autistic individuals with intellectual disability who speak few or no words through interviews with 21 parents/carers and 9 clinicians. Parents described anxiety behaviours including increased vocalisation, avoidance, and challenging behaviours, with routine changes identified as key triggers. Clinicians emphasised the importance of knowing an individual's behavioural baseline and ruling out other causes of distress. The research addresses a significant gap as this population is at high risk for anxiety but underrepresented in research.

Findings inform development of appropriate clinical assessment tools for this vulnerable group.

Findings support development of individualised anxiety assessment protocols for non-speaking autistic individuals. Emphasises need for baseline behaviour documentation and routine stability. Highlights importance of differential diagnosis to distinguish anxiety from other causes of distress in clinical practice.

Small qualitative sample limits generalisability. Reliance on parent/carer and clinician perspectives rather than direct participant input. No validation of assessment tools developed from findings. Sample characteristics not fully described.

Autistic individuals with intellectual disability who speak few or no words are at high risk of anxiety but are underrepresented in research. This study aimed to describe the presentation of anxiety in this population and discuss implications for the development of assessments. Interviews were conducted with 21 parents/carers of autistic individuals and nine clinicians. Data were analysed using content analysis and interpretative phenomenological analysis.

Anxiety behaviours described by parents/carers included increased vocalisation, avoidance and behaviours that challenge. Changes to routine were highlighted as triggering anxiety. Clinicians discussed the importance of identifying an individual's baseline of behaviour, knowing an individual well and ruling out other forms of distress. This study raises considerations for early identification of anxiety and for subsequent support.