Title: Improving outcomes for people with autism spectrum disorders by reducing mental health problems
Funder: Department of Health and Social Care

Abstract: Patient and Public Involvement People with ASD and their parents/carers/siblings will be involved in every aspect of this application, including formulating the research questions, contributing to the methods for data collection (and training researchers), interpreting the findings and assisting with dissemination. A lay panel will advise on the research and two will sit on the programme steering committee. Aims and Objectives This programme aims to make a significant and rapid difference to the quality of life for people with ASD and their families by identifying ways to reduce co-occurring mental health problems/maladaptive behaviour, which affects 70% of them. We will achieve this through: (1) understanding the personal experiences of people with ASD and their parents/carers in identifying and gaining help for mental health problems; (2) developing a clinical tool to aid professionals in assessment, intervention and prioritization of care; (3) identifying the early signs and risk/protective factors for the most severe problems; and (4) developing and trialling an early intervention. Background and rationale ASD is a common disorder, occurring in 1% of the population. The UK economic costs of ASD in care and missed opportunities are more than &pound;28 billion annually. Recent research shows that people with ASD experience high rates of additional mental health problems that are distinct from the core ASD symptoms and which, in the general population, are highly treatable. In the absence of effective interventions for ASD itself, targeting these additional impairments may improve everyday functioning and quality of life for them and their families/carers, as well as reducing the economic costs associated with ASD. There are key ages &ndash; early childhood, adolescence, and transition to adulthood &ndash;which are potential turning points in determining outcome, and this programme focuses on these key ages with the aim to develop strategies to make a long-term difference. Research plan This 5 year programme incorporates findings from earlier work packages into later ones to provide a conceptually integrated and cost-effective approach to mental health problems in people with ASD. The programme brings together quantitative and qualitative research approaches, treatment development and evaluation and economic analysis. WP1 (years 1-3) develops and trials a tool (SMART) to assess and guide intervention for additional mental health/behavioural problems in clinical practice, suitable for the entire age range, and which will be an outcome in WP3 and WP4. WP2 (years 1-2) obtains qualitative accounts from young people and their parents regarding their experiences of identifying mental health problems and obtaining/using services for these. These accounts will be used to further develop the SMART, guide measurement of maladaptive behaviour in WP3 and understand the needs and priorities of parents participating in the early intervention in WP4. WP3 (Years 1-4) identifies the early predictors of severe maladaptive behaviour (SMB), defined by the SMART, by using a longitudinal design in a well-characterized childhood cohort (Appendix 2). It will develop an algorithm to identify those at risk of severe problems and estimate the cost in additional service use and parental economic impact, as well as quality of life for children and their families. WP4 (years 3-5) develops and evaluates the feasibility and pilot effectiveness of a parent-based intervention to reduce mental health/behavioural problems in young children. To obtain unbiased outcomes, we develop a blinded observational measure to evaluate change. An economic cost-benefit analysis is included as well as a qualitative component eliciting parent and professional views regarding the intervention. Dissemination & projected outputs As well as the traditional scientific dissemination, the National Autistic Society will lead on wider dissemination of the applied research findings to engage policy-makers, key professional groups and service managers, parents/carers and service users. Outputs will include: a clinical tool to evaluate mental health problems, specific recommendations to the NHS and other statutory bodies on supporting parents/carers and people with ASD, an algorithm for clinical use to identify those at greatest risk of developing severe maladaptive behaviour, a new objective measure of mental health/behaviour problems in children and pilot data to power an effectiveness trial of early intervention. Relevant expertise & experience of the research team The team includes clinical academics from psychiatry, psychology, paediatrics and speech and language therapy, a qualitative researcher, health economist and biostatistician, all with international reputations in autism research. Management & governance, including programme management and ethical implications A programme steering committee, including members of the lay panel and independent expert advisors, will oversee the governance and administration of the programme, supported by a full-time programme manager. This programme includes participants who are children and people with intellectual disability, two vulnerable but under-researched groups, requiring special ethical consideration. Justification of costs This comprehensive programme integrates 4 large work packages that are cost-effective in employing an overall programme manager, junior administrator and statistician. NHS support and treatment costs have been discussed with SLaM and the research networks.

Lay abstract: Autism spectrum disorders (ASDs) involve pervasive impairments of reciprocal social interaction, communication and repetitive behaviours and interests. ASDs are common, occurring in ~1% of the population, lifelong, severely impairing for the individual and family and hugely expensive, costing the UK more than &pound;28 billion annually in care and lost opportunity. Currently, there are no effective treatments for its core symptoms. However, our previous research and consultation with users found that the greatest impact often comes not from the core ASD symptoms but rather from the commonly associated mental health problems, such as anxiety and oppositional defiant disorders. The most severe problems, referred to as severe maladaptive behaviour (SMB), include serious aggression directed at self and/or others and severe disruptive and non-compliant behaviour, leading to exclusion from everyday family, educational and community activities, poor quality of life and increased family stress as well as high costs in service use and lost opportunities. This programme focuses on decreasing mental health problems and SMB as a strategy for improving outcomes for people with ASD and their families. These outcomes include: improved mental health, quality of life and community participation for people with ASD; reduced family stress; and decreased economic costs by ultimately lowering the need for high-cost (often residential) care and integration into the community. This programme involves people with ASD from early childhood to adult life. We aim to improve identification of mental health problems by developing a tool for clinical use, which can also be used to monitor treatment response. We will undertake qualitative work with parents, young people and adults with ASD to better understand which problems are most impairing, how families interpret maladaptive behaviours and their experiences of help-seeking. We will also identify the early childhood risk/protective factors that differentiate the 20% of young people with ASD who develop SMB in adolescence, so that resources can be better focused to those at highest risk. Finally, we will develop and pilot an early intervention for parents aimed at reducing the risk behaviours, increasing parental understanding of mental health and ASD, and promoting resilience as a strategy to prevent the development of the most severe maladaptive behaviour. The programme will provide the NHS and other sectors with better clinical tools to identify those at risk for future problems, those currently needing treatment and to monitor treatment response. We will also develop and test a novel observational measure for use in clinical and research settings. This programme involves a partnership with people with ASD and their families at every stage. Dissemination will be led by our co-applicants from the National Autistic Society whose prior experience in involving patients/families in research and dissemination has been highly successful in influencing policy.

Research activity codes: 7.3 MANAGEMENT AND DECISION MAKING;7.1 INDIVIDUAL CARE NEEDS
Health categories: MENTAL HEALTH