Seven in ten people with autism will develop a mental health problem that is treatable but often goes unrecognised and unaddressed. This matters because autism affects 1% of the UK population, and the annual economic cost of care and lost opportunities exceeds £28 billion. Current services lack a standardised way to assess and prioritise these co-occurring mental health problems, which are distinct from core autism traits. The research targets three critical life stages—early childhood, adolescence, and the transition to adulthood—where intervention could alter long-term outcomes. If successful, the programme will produce a clinical assessment tool called SMART, usable across all ages, to guide professionals in identifying and treating mental health problems in autistic people. It will also develop an early intervention for parents of young children, tested in a pilot trial with blinded outcome measures. An algorithm will identify children at risk of severe behavioural problems, and economic analysis will estimate savings in service use and family costs. The National Autistic Society will lead public dissemination, ensuring findings reach families and clinicians quickly.
View original technical description
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 £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 – early childhood, adolescence, and transition to adulthood –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
Plain English summaries and category classifications on this site are generated by AI and may not perfectly reflect the original research.
Is something wrong? Let us know