Managing Anxiety in Autism: A Pilot Trial of Newly Developed Psychoeducation Toolkits

Background: Additional psychiatric disorders are common in individuals with ASD especially co-occurring anxiety, with around 40% of individuals meeting diagnostic criteria for an anxiety disorder and 80% experiencing symptoms (White et al., 2009). Although modified cognitive behavioural therapy has been shown to be effective at reducing anxiety in young people with ASD (Sukhodolsky et al., 2013), it is likely that not all people with ASD and milder anxiety require specialist one to one therapy. Furthermore, such specialist interventions may not be universally available. Self-help programmes have the benefits of wide accessibility and availability without a referral. Effectiveness of self- or parent-facilitated programmes based on CBT principles have been demonstrated for anxiety in people without ASD (Lucksted et al., 2012) but have been understudied in ASD populations.

Objectives: To develop and evaluate a set of psychoeducation self- or parent-led toolkits in collaboration with clinical professionals aimed at recognising and managing anxiety in young people with ASD.

Methods: Young people with ASD experiencing clinically significant anxiety, as measured at baseline using the Screen for Anxiety and Related Disorders (SCARED; Birmaher et al., 1999), were recruited from mental health services in South London, UK. Thirty four participants aged 8-18 years old were randomised to receive the psychoeducation intervention either immediately or after a 4 week delay. Parents completed questionnaires at baseline, at Time 1 four weeks later (post-intervention for the immediate start group) and at Time 3 eight weeks later, young people also completed questionnaires where possible. The primary outcome was a study-specific measure of parental knowledge and confidence and secondary outcomes were total anxiety (SCARED) and quality of life scores (KidScreen-10 index; Ravens-Sieberer et al., 2010). All measures were completed at the three time points.

Results: Intention to treat analyses explored effect sizes at Time 2 for primary and secondary outcomes, with the recognition that small sample sizes would likely render results non-significant, which was the case. Cohen’s d effect sizes (ES) revealed small effects of the randomisation group on knowledge and confidence score (0.26; 95% CI: -0.46 – 0.98) and anxiety symptoms (-0.22; 95% CI: -0.94 – 0.50) and a moderate (but non-significant) ES for quality of life (-0.40; 95% CI: -1.12 – 0.33). At the end of the intervention, all but one parent said they would recommend the toolkit to other families with 63% being very likely to recommend. Ninety three percent of parents reported their knowledge improved, 96% that it was useful in helping them understand their child’s anxiety and 61% said there was improvement in their child’s anxiety after 4 weeks.

Conclusions: Statistical analyses were limited due to the small sample size of the pilot trial. From qualitative feedback, it is likely that four weeks was too short to read the toolkits and implement the suggested management strategies. The study-specific knowledge and confidence questionnaire was not tested for sensitivity to change and many parents reported high baseline levels, leaving little room for improvement. Acceptability of the toolkits was positive and supports further development and evaluation of the materials.