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.
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Funding: Georgina Edwards’ contribution to this paper was made possible through funding from the Baily Thomas Charitable Fund (5009-7975). Dr Joanne Tarver’s contribution to this paper was made possible through funding from Autistica (#7251) and the Birmingham Children’s Hospital Charitable Fund (BCHRF512). We are also grateful for Cerebra for providing infrastructure funding, which supports the Network of researchers who contributed to this research.