Title: How can we improve the experiences and outcomes of autistic children in care? A mixed methods study of needs, services, and good practice
Funder: Health and Care Research Wales (Welsh Government)

Abstract: Autistic children within the foster care system face a ‘double hit’ of disadvantage; their status as a child in care and their autistic behaviours leave them at risk for poorer mental and physical health outcomes (Eaves & Ho, 2008, Turney & Wildman, 2016). Yet there is remarkably little research on how many children in care have autistic traits, what their outcomes are or how we might improve their care. This Fellowship seeks to address these important gaps. The Fellowship consists of three interlinked, mixed-method parts that will profile the diagnostic and autistic trait patterns of children in care across Wales, describe current provision, and identify key elements of good practice. A participatory approach will be used, with each part of the Fellowship guided by stakeholders, including foster/kinship carers, charities, local authorities (LAs), academics and young people. Part 1 will quantify the rates and patterns of autism diagnosis, and other neurodevelopmental disorders (NDD) for children in care, as well as examining their education, employment and mental health outcomes in adulthood. It will utilise administrative data in the Secure Anonymised Data Linkage (SAIL) databank, including demographic, medical, education and looked after datasets. These will be linked using SQL and analysed in Stata, using descriptive and multivariate statistics to detail the current diagnostic profile, patterns of diagnosis and outcomes of autistic children in care compared to a matched control group. Part 2 will describe the autistic trait profile of children currently in care and quantify how these traits are associated with attachment difficulties, other diagnoses, current difficulties, and levels of foster carer stress. A survey will be distributed to all foster/kinship carers in Wales. This will include the Social Communication Questionnaire (SCQ: Rutter et al., 2003), Relationship Problems Questionnaire (RPQ: Minnis et al., 2007), Strengths and Difficulties Questionnaire (SDQ: Goodman, 1997) and Parental Stress Scale (PSS: Berry and Jones, 1995). Statistical analysis, using SPSS and Stata, will include correlations and regressions to understand the relationships between these variables and the current difficulties experienced by children in care. Part 3 will characterise the current experiences of foster/kinship carers caring for a young person with autism or high autistic traits, and identify improvements that could be made to policy and practice. The sample will be derived from three LAs in Wales and follow up interviews with foster/kinship carers from Part 2. Semi-structured interviews and focus groups will be conducted with foster/kinship carers (N=60), social workers (N=45), and team managers (N=3) to explore these questions. A Realist approach to analysis will identify key themes and develop a theory about the mechanisms of change to improve outcomes for these young people and barriers to these. This will produce policy and practice relevant findings, as well as provide a foundation for future intervention or policy innovation and evaluation. The Fellowship will produce a greater understanding of children in care with autism, as well as producing lessons for good practice, which can inform policy, practice, and training for social workers and foster/kinship carers. This has the potential to have substantial benefits for the lives of children in care with autistic traits and their carers.

Lay abstract: How can we help autistic children and those with high levels of autistic traits who are in care get the help they need to achieve the best outcomes? This Fellowship will investigate this by looking at patterns of diagnosis, autistic traits, and outcomes for children in care. It will also gather information from foster/kinship carers and social work teams that support these children, to create lessons of good practice to guide future work and policy. There is very little research on the experiences and outcomes of autistic children and those with high levels of autistic traits in care. It may be difficult for this group to get a diagnosis, particularly as the presentation of behaviours associated with autism is similar to behaviours often associated with early trauma or attachment difficulties. As a result, it may be challenging for this group of children and their foster/kinship carers, to access the best services to support them. A lack of understanding of autism and autistic traits may prevent foster/kinship carers from supporting children effectively. This may worsen challenging behaviours, causing high levels of family stress and putting foster placements at risk. This Fellowship aims to help address this gap in knowledge by: 1. Undertaking research to understand more about the rates and patterns of autism for children in care and their outcomes. 2. Improving the guidance and assistance provided to foster/kinship carers when caring for an autistic young person or a young person with a high level of autistic traits. There will be three parts to the project. The first involves analysis of large databases to create an understanding of the rates of autism diagnosis for children currently in care. It will also investigate patterns of diagnosis (including age and gender) and the outcomes for these children (including education and mental health outcomes). The second part involves sending a survey to all foster/kinship carers in Wales. This survey will include information about the children they are caring for, including measures of autistic traits, attachment difficulties, current difficulties, parental stress and information on the history of the child. Analysis of this data will allow an understanding of how the level of autistic traits in a child or young person relates to other measures, including attachment difficulties and parental stress. In the third part I will conduct interviews and focus groups with foster/kinship carers, social workers and other local authority staff. These will aim to get a clear understanding of the current support process for autistic children and those with high levels of autistic traits, and what needs to change to improve the existing policies and procedures. The three parts of the Fellowship together will provide a detailed understanding of the numbers of children experiencing difficulties, what the biggest challenges are for these children, and how we can best support them and their carers to get the best outcomes through childhood and into adulthood. This project will be guided by advisory groups, consisting of relevant fostering/kinship care charities, local authorities, foster/kinship carers and young people, many of whom have already assisted in the design of this research proposal. The findings from this research will be widely disseminated, through academic publications and conferences, reports to local authorities, reports to charities and accessible versions for the public.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;2.4 SURVEILLANCE AND DISTRIBUTION;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: MENTAL HEALTH