The forgotten half million: New methods for mapping mental health outcomes of adults with Autism Spectrum Conditions in the UK.

Autism Spectrum Conditions (ASC) are a diverse group of developmental brain conditions that cause difficulties in communication, social interaction, unusually narrow interests and difficulties adapting to change. One in 100 people (700,000 in the UK) have an ASC, most of whom are adults. A majority of the total economic cost of ASC to the UK is spent on supporting adults (£25 billion out of a total of £28 billion), with 36% of this cost attributable to lost employment opportunities (Knapp et al. 2009). The individual and social costs of ASC in adulthood are also high, with research showing poor outcomes in terms of educational attainment, unemployment (Howlin, 2000), and high rates of depression (32%), suicidal thoughts (66%) and suicidal behaviours (35%) (Cassidy et al. 2014).

The latest reports from the ESRC Centre for Economic Performance, and the Chief Medical Officer, describe the high individual, social and economic costs of leaving mental health problems such as depression untreated. However, there are no valid measures of depression or suicide risk for adults with ASC, despite evidence that these are common problems (Cassidy et al. 2014; Segers and Rawana, 2014). Measures for typically developing adults are not appropriate for adults with ASC, who tend to interpret questions literally (Happe et al. 1995), and have difficulty verbalising their emotional experiences (Bird et al. 2010). Depression and suicidality also manifest differently in ASC; inflexible thinking and impulsivity may increase risk (Cassidy et al. 2014). In addition to lack of appropriate measures, research progress is also hampered by the lack of a data set that includes enough adults with ASC to effectively evaluate their rates of depression and suicidality on a national scale; the UK adult psychiatric morbidity survey (2007) only included 19 adults with ASC.

The lack of research and appropriate measures have had a profoundly negative impact on adults with ASC; 1) it is not possible to conduct detailed research into the nature, risk or protective factors for depression or suicidality in adults with ASC; 2) it is not possible to effectively assess their depression or suicide risk in clinical practice; 3) without the knowledge base or assessment tools, new theories and effective evidence based treatments cannot be developed or evaluated; 4) we cannot effectively evaluate the prevalence of depression or suicidality on a national scale, in order to inform effective government policy. Hence, adults with ASC are not currently able to access evidence based assessment or therapies for depression or suicidality, despite being at potentially high risk.

This research project will address these fundamental issues by developing the first empirically validated measures of depression and suicidality for adults with ASC, for use in a national survey. This will form the first nationally representative dataset containing rates of depression and suicidality in adults with ASC in the UK, made available for secondary analysis. These objectives will be achieved by creating synergy between psychiatrists and clinicians involved in ageing, autism, suicide, mental health and risk assessment research, across internationally recognized institutions (Universities of Coventry, Newcastle, and Cambridge).

This research will build on my previously published research, which has utilized big data to explore the health and behaviour of adults with ASC, including the first large-scale clinic study of depression and suicidality in adults with late diagnosis of Asperger Syndrome (a high functioning subgroup on the autism spectrum) (Cassidy et al., 2014). This project will enable me to foster a new inter-disciplinary mixed-methods approach to the study of mental health in ASC, which I will continue to lead beyond the funding period.

This project seeks to join traditionally separate disciplines, to develop new methods for diagnosing depression and suicidality in adults with Autism Spectrum Conditions (ASC), and improve their access to psychological therapies. I have performed a stakeholder analysis, and from this identified the following primary beneficiaries of this research:

1) Academic Community: This research will foster new interdisciplinary collaboration and mixed-methods, applying the study of mental health, suicide, risk assessment, and measurement development, to the case of atypical development (adults with ASC). This will open up a whole new line of research into mental health in ASC and other developmental conditions, encouraging application of theory and methods between previously distinct disciplines. Impact will be achieved through publishing this seminal research in world leading journals, and vigorous knowledge exchange activities with the international research community. Timescale: Years 1-3+.

2) Clinicians: There are currently no valid assessment tools, NHS guidelines or theories of how mental health problems and suicidal thoughts or behaviours can manifest in those with developmental conditions such as ASC. Hence clinicians can struggle to assess, support and treat individuals with ASC presenting with depression, suicidal thoughts or behaviours in GPs surgeries, or specialist mental health, learning disability, or autism diagnostic settings. Providing the first empirically validated measures of depression and suicidality for adults with ASC will benefit clinicians on the front line, attempting to make appropriate referrals, diagnose depression and gauge suicide risk in these individuals. Impact will be achieved through; 1) high-quality publications in general medical journals; 2) knowledge transfer activities with clinicians, to translate the results of the research into guidelines for GPs to assess depression and suicide risk in adults with ASC; and 3) provision of online courses about the presentation and assessment of depression and suicide risk in adults with ASC. Timescale: Years 1-3+

3) Wider Public: Given the high individual, social and economic costs of ASC, and the fact that ASC are no longer considered rare - with prevalence rates steadily rising in the world - public awareness and concern about ASC are increasing. This project aims to maximize its outreach to individuals with ASC, their families and the general public. Impact will be achieved through bi-yearly newsletters disseminated to over 30,000 participants registered in the autism research databases at Universities of Newcastle and Cambridge, and UK autism support groups. An event will also be hosted at Coventry University, to engage adults with ASC and their families in discussions with researchers and clinicians about translating the results of research into effective support and practice, and to influence the direction of future research in this new and important area. Timescale: Years 1-3+.

4) ASC Charities: Charities are at the front line of providing information and support to adults with ASC, professionals, families, and lobbying policy makers. This project will benefit the work of charities, by providing the first evidence based information on an important, commonly experienced, but at the same time under-researched aspect of ASC; depression and suicidality. This research will also uncover the scale and urgency of the problem on a national scale for the first time, providing the necessary evidence for charities to effectively influence UK policymakers to reduce the high individual, social and economic costs of ASC in adulthood. Impact will be achieved by including leading UK charity representatives in the outreach event at Coventry, discussing the translation of the research into practice. An annual report will also be sent to leading ASC charities in the UK. Timescale: Years 2-3+.