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

自闭症谱系条件(ASC)是一组不同的发育性大脑疾病，导致沟通、社交互动困难，兴趣异常狭窄，难以适应变化。每100人中就有一人(英国为70万人)患有自闭症，其中大多数是成年人。英国ASC总经济成本的大部分用于支持成年人(总计280亿GB，其中250亿GB)，其中36%的成本可归因于就业机会的丧失(Knapp等人)。2009年)。成年期ASC的个人和社会成本也很高，研究表明，在教育程度、失业(Howlin，2000)和高抑郁(32%)、自杀念头(66%)和自杀行为(35%)方面，结果很差(Cassidy等人)。2014年)。ESRC经济表现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所带来的高昂的个人、社会和经济代价。然而，尽管有证据表明患有ASC的成年人的抑郁或自杀风险是常见的问题，但没有有效的衡量标准(Cassidy等人。2014年；Segers和Rawana，2014)。针对典型成人发育的措施不适合患有ASC的成年人，他们倾向于从字面上解释问题(Happe等人。1995)，并且难以用言语表达他们的情感体验(Bird等人。2010)。抑郁和自杀在ASC中的表现也不同；僵化的思维和冲动可能会增加风险(Cassidy等人。2014年)。除了缺乏适当的措施外，研究进展也因为缺乏包括足够多患有自闭症的成年人的数据集而受到阻碍，无法在全国范围内有效地评估他们的抑郁症和自杀率；英国成人精神病发病率调查(2007年)只包括19名患有自闭症的成年人。缺乏研究和适当的措施已经对患有ASC的成年人产生了深远的负面影响；1)不可能对患有ASC的成年人抑郁或自杀的性质、风险或保护因素进行详细研究；2)不可能在临床实践中有效地评估他们的抑郁或自杀风险；3)如果没有知识库或评估工具，新的理论和有效的循证治疗方法就无法开发或评估；4)我们不能有效地评估全国范围内抑郁症或自杀的患病率，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抑郁症或自杀的循证评估或治疗，尽管存在潜在的高风险。这项研究项目将通过开发第一个经验性验证的成人ASC患者抑郁和自杀倾向的测量方法来解决这些基本问题，用于全国调查。这将形成第一个具有全国代表性的数据集，其中包含英国成人ASC患者的抑郁症和自杀率，可用于二次分析。这些目标将通过跨国际公认机构(考文垂大学、纽卡斯尔大学和剑桥大学)在涉及老龄化、自闭症、自杀、心理健康和风险评估研究的精神病学家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之前发表的研究的基础上，该研究利用大数据来探索患有自闭症的成年人的健康和行为，包括第一项关于晚期诊断为阿斯伯格综合征(自闭症谱上的一个高功能亚群)的成年人的抑郁症和自杀行为的大规模临床研究(Cassidy等人，2014年)。这个项目将使我能够培养一种新的跨学科混合方法来研究ASC的精神健康，我将在资助期之后继续领导这一研究。

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.