Title: Guided self-help for depression in adults with autism spectrum disorders
Funder: Department of Health and Social Care

Abstract: Background: High rates of common mental health problems, such as anxiety and depression, are reported in adults with Autism Spectrum Disorders (ASD) (Hofvander et al., 2009). Cognitive Behaviour Therapy (CBT) is recommended in NICE guidelines as the first line of treatment for such problems in the general population. The development of Increasing Access to Psychological Therapies (IAPT) services have been at the forefront of implementing NICE guidance. It is not known how readily people with ASD access IAPT services or whether these services meet their needs. Good practice guidelines for IAPT services have been developed for people with learning disabilities (PWLD)(2009, NHS) and there have been efforts to implement and evaluate these practice guidelines via pilot studies. On the basis of research to date, it is likely that people with ASD will also require some adaptation of treatments available in IAPT services. There is for example, evidence from several controlled trials that CBT approaches can be effective in ameliorating anxiety problems in young people with ASD (Lang et al., 2010) and adults with ASD and co-morbid OCD (Russell et al., 2013) if adapted for their needs. To our knowledge there has been just 1 study to date investigating group CBT for young people with ASD and depression (Gilleveray and Evert 2014) and no studies investigating the effectiveness of individual CBT for depression in adults with ASD. Treatment as usual (TAU) for mild-moderate depression is ordinarily 'low intensity CBT' (i.e. psycho-education or guided self-help) in a group or individual format. It is thus not known if guided self-help for depression adapted for ASD is acceptable, feasible and effective as a treatment for depression in this group. Aims: To conduct a feasibility study for a large-scale Randomised Controlled Trial (RCT) to evaluate the clinical and cost-effectiveness of individual guided self-help for depression adapted for adults with ASD. Methods: (1) The intervention i.e. low intensity CBT for mild-moderate depression in adults with ASD will be developed by adapting existing self-help material in line with this group's needs. The principles of intervention will be Psycho-education and Behavioural Activation and will be delivered via 8 individual sessions (2) A feasibility study will be conducted. Adults with ASD and mild-moderate depression (n=70) will be randomised to ASD adapted guided self-help (GSH)or Treatment as Usual (TAU) across 2 NHS sites over 18 months. In addition, qualitative interviews will be conducted to investigate patients, practitioners' and parent/carers' views, experiences and acceptability of the intervention. The feasibility study will also provide estimates about likely recruitment and retention rates, choice of primary outcome measure and method of data collection for a parallel economic evaluation for a larger scale trial. Outcomes: Study outcomes will be ASD specific self-help material, therapist training materials, clarity about outcome measurement of depression symptoms and information about treatment acceptability and feasibility of treatment evaluation across more than one NHS site.

Lay abstract: Autism Spectrum Disorder (ASD) is a developmental condition affecting 1% of people. ASD is characterised by difficulties in two main areas. Firstly, people with ASD have impairments in social communication which means social interaction and relationships are not easy for them. Secondly, ASD is characterised by a restricted or intense pattern of interests and behaviours. High rates of anxiety and depression have been reported in people with ASD. These mental health problems are distressing and an additional source of disability. A psychological therapy, Cognitive Behaviour Therapy (CBT), is recommended as a first-line treatment for mild-moderate depression and anxiety. This usually takes the form of 'low intensity' CBT, either individual sessions with a Psychological Wellbeing Practitioner (PWP) to work through self-help materials or as part of a group. There is some evidence that CBT can be helpful for anxiety in people with ASD if adapted to their needs. It is not known if CBT can also be helpful for depression in people with ASD. The NHS self-help materials have not been developed for people with ASD who can have a different style of processing information. They often prefer concrete explanations with visual guides. People with ASD can also have problems noticing and talking about their emotions. They may need more guidance than other people when learning to combat difficult emotional states like depression. Some NHS therapists know about the needs of people with ASD but some do not. Furthermore, receiving information as part of a group may be difficult for people with ASD as they may find the social demands of the group very stressful. The study we are proposing will adapt existing CBT self-help material for depression in line with the needs of adults with ASD. There will be a focus on behavioural activation (BA). BA encourages people to notice behavioural patterns maintaining depression and bring about changes to combat these patterns. People with ASD will need more PWP support in using the material to notice their mood, patterns and to develop new behavioural routines. We will ask people with ASD to help us develop the material. We will then carry out a feasibility trial. This trial will find out (i) if the material is acceptable and (ii) if it is possible to carry out a clinical trial testing the effectiveness of the adapted material. To do this, 70 adults with ASD and mild-moderate depression will be asked to take part in the research. Depression & anxiety symptoms, service use and quality of life will be measured. Participants will then be randomly allocated to one of 2 treatments, (a) Treatment as Usual or (b) ASD adapted guided self-help for depression. The 35 participants allocated to (b) will be offered 8 individual sessions of adapted guided self-help with the support of a PWP. The PWP will receive training and supervision in ASD. After 10 weeks the measures will be repeated for both groups and the person taking these measures will not know which group people were in. We will ask the participants in group (b) about their experience of the self-help material and the amount of PWP support. We will ask both groups about the experience of being in a trial. We will ask participants to complete follow-up measures at 16 and 24 weeks.

Research activity codes: 6.6 PSYCHOLOGICAL AND BEHAVIOURAL
Health categories: MENTAL HEALTH