Increasingly it is recognized that people of all ages with autism spectrum disorders (ASD) meet diagnostic criteria for a range of additional mental disorders. Anxiety disorders, including generalized anxiety disorder (GAD), social anxiety, agoraphobia and specific phobias, are amongst the most common, occurring in roughly 40% of people with ASD1. One reason why this has only recently been recognized is the difficulty distinguishing anxiety from 'core' ASD symptoms. A recent consultation by Autistica found that interventions for anxiety were a high priority by parents and people with ASD2. Furthermore, the survey reported concern regarding the use of medication amongst children with ASD. Put together, these findings highlight the need for psychological interventions that are widely accessible for people with ASD. Clinical trials show that cognitive behaviour therapy (CBT) is effective for anxiety disorders among children/adolescents with ASD, although the present studies do not meet the highest quality standard3.. However, resources are currently limited across the NHS for delivering CBT to the large proportion of people with ASD suffering from anxiety. Furthermore, not all people with ASD and anxiety are likely to require expert CBT treatment and a substantial proportion may benefit from self-(parent/carer-) mediated help programmes based on CBT principles. The effectiveness of psychoeducation and self-help programmes for depression and anxiety amongst people without ASD has already been demonstrated4-6. Self-help programmes have the benefits of wide accessibility and availability when wanted/needed without having to wait for referral/assessment by clinical services. Especially for people with ASD, such programmes may be preferable to face-to-face interventions. Psychoeducation is differentiated from ‘treatment’, although the two overlap substantially’. The former aims to provide generic information about the nature of a disorder: its causes, manifestations, triggers and the types of interventions that are likely to prove beneficial. In contrast, treatment such as CBT is typically individualized to identify personal triggers, and to develop and implement strategies for modifying their occurrence and the response to these. Amongst groups without ASD, there is a growing evidence base that a substantial proportion may benefit from treatment delivered by more general ‘self-help’ – manuals or books providing information about how sufferers can themselves implement CBT-style interventions without the direct input of a therapist 7, 8.The aim of the original application was to extend early work on a psychoeducation package aimed at recognizing and managing anxiety symptoms in people with ASD. We will develop and evaluate a set of psychoeducation materials designed to be accessible by parents/carers and older children, adolescents and adults with ASD. Since submitting the original application, further discussions with the funders and others has produced strong interest in the concept and has highlighted the potential to extend the work from ‘psychoeducation’ to ‘treatment’. Furthermore, there are increasing technological developments including internet-based CBT and apps that provide new platforms for both psychoeducation and treatment to reach a wider client group. Given this interest, we propose to use the additional funding, if available, to clarify with clinicians, users of the package and their parents/carers the potential for extension of the material, and to develop the skeleton of a treatment module. The packages will be developed in conjunction with expert clinicians and also parents/carers and people with ASD. If these are judged successful, we would subsequently aim to make them widely available, e.g., by extending to internet- and app-based platforms.
Interagency Autism Coordinating Committee (IACC)
Autism Research Database (AFD)
