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

自闭症谱系障碍（ASC）是一组不同的大脑发育状况，导致沟通困难，社会互动，异常狭隘的兴趣和适应变化的困难。每100人中就有一人（英国有70万人）有ASC，其中大多数是成年人。ASC对英国的总经济成本的大部分用于支持成年人（280亿英镑中的250亿英镑），其中36%的成本可归因于失去的就业机会（克纳普等人，2009年）。成人期ASC的个人和社会成本也很高，研究显示，在教育程度、失业（Howlin，2000）以及抑郁症（32%）、自杀想法（66%）和自杀行为（35%）的高发生率方面，结果很差（Cassidy et al. 2014）。ESRC经济绩效中心和首席医疗官的最新报告描述了不治疗抑郁症等心理健康问题的高昂个人，社会和经济成本。然而，尽管有证据表明这些是常见的问题，但没有有效的措施来衡量ASC成人的抑郁或自杀风险（Cassidy et al. 2014; Segers and Rawana，2014）。对于发育正常的成年人，测量方法不适用于患有ASC的成年人，他们倾向于从字面上解释问题（Happe et al. 1995），并且难以用语言表达他们的情感体验（Bird et al. 2010）。抑郁和自杀倾向在ASC中的表现也不同;思维僵化和冲动可能会增加风险（Cassidy et al. 2014）。除了缺乏适当的措施，研究进展也阻碍了缺乏一个数据集，包括足够的成人ASC有效地评估他们的抑郁症和自杀率在全国范围内;英国成人精神病发病率调查（2007年）只包括19名成人ASC。缺乏研究和适当的措施对成人ASC产生了深刻的负面影响：1）不可能对成人ASC的抑郁或自杀倾向的性质，风险或保护因素进行详细的研究; 2）在临床实践中不可能有效地评估他们的抑郁或自杀风险; 3）没有知识库或评估工具，就无法开发或评估新的理论和有效的循证治疗; 4）我们无法在全国范围内有效评估抑郁症或自杀倾向的流行程度，以便为有效的政府政策提供信息。因此，患有ASC的成年人目前无法获得基于证据的评估或治疗抑郁症或自杀倾向，尽管他们有潜在的高风险。该研究项目将通过开发第一个经验验证的ASC成年人抑郁和自杀的措施来解决这些基本问题，用于全国调查。这将形成第一个全国代表性的数据集，其中包含英国ASC成年人的抑郁和自杀率，可用于二次分析。这些目标将通过在国际公认的机构（考文垂大学、纽卡斯尔大学和剑桥大学）中参与老龄化、自闭症、自杀、心理健康和风险评估研究的精神科医生和临床医生之间建立协同作用来实现。这项研究将建立在我以前发表的研究的基础上，该研究利用大数据来探索患有ASC的成年人的健康和行为，包括第一次对晚期诊断为自闭症综合征（自闭症谱系中的一个高功能亚组）的成年人的抑郁和自杀的大规模临床研究（Cassidy et al.，2014）。这个项目将使我能够培养一种新的跨学科的混合方法来研究ASC的心理健康，我将在资助期后继续领导。

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.