What Do Autistic People Who Experience Anxiety Tell Us about Existing Interventions and Services for the Treatment of Anxiety?

Background: Anxiety is a common mental health condition experienced by autistic people, with the potential to negatively impact on many aspects of daily life. The development of effective treatments for anxiety is a key priority for autistic people. Clinical guidance and policy documents recommend that interventions should be adapted to meet the needs of the autistic person. To inform the development of effective treatments it is important to learn about the lived experiences of autistic adults who experience anxiety including those who have accessed existing interventions and services.

Objectives: To conduct a UK survey to learn about autistic adults’ experiences of anxiety and any treatments received; and to explore autistic adults’ perspectives about what types of adaptations to mental health interventions and services would meet their needs.

Methods: Autistic adults aged 18 and over were recruited via the Adult Autism Spectrum Cohort-UK (Newcastle University). 824/1587 cohort participants reported an anxiety diagnosis (51.9%) and a further 23.4% reported a suspected but undiagnosed anxiety disorder. Of the 998 with a pre-existing diagnosis (or suspected diagnosis) of anxiety, 449 (45%) completed a survey about their experiences of anxiety and treatments they have accessed. Their mean score on the Social Responsiveness Scale (measuring autism severity) was 111.5, exceeding the suggested cut-off for autism. Analyses were principally descriptive and correlational.

Results: 60.3% had completed psychological therapy for anxiety; 72.1% had been prescribed medication. Of those who had completed psychological therapy for anxiety just 5.8% reported they had made a full recovery and 53.9% a partial recovery. The treatment made ‘no difference’ for 28.4% of respondents and 11.9% ‘felt worse’ (supporting qualitative data available). These outcomes are poorer than observed in the general population. Autistic people rated adjustments to treatments and services as being very important but rarely available. For example, ‘having a therapist who understands autism’ was rated as an important key adjustment by 98.4% of the sample (86.8% very important, 11.6% somewhat important) but 31.6% of participants reported that this was ‘never available’ and a further 39.7% reported it was ‘rarely available’. Similar patterns of high importance and low availability were observed across a number of key adjustments such as altering the sensory environment of therapy locations and adaptations to the therapeutic intervention itself. Overall, the more important that an adjustment was rated, the less likely it was to be widely available (r = -.20, p < .01) and a significant correlation was observed between availability of adjustments and therapeutic outcomes (r = .34, p < .01).

Conclusions: This study demonstrates some of the shortcomings of therapeutic interventions for anxiety experienced by autistic people. Understanding the range and types of adjustments valued by autistic adults can inform hypothesis driven research and lead to more clinical and cost effective treatments for anxiety experienced by autistic people. Building on the findings of this survey, our research team is currently undertaking a pilot feasibility trial for a personalised, modular psychological intervention for anxiety experienced by autistic people.