The lost generation: How a lack of identification of ADHD and autism fails millions of adults

目前在英国，估计有超过250万神经多样性的成年人没有得到诊断，因此很难获得护理。最常见的神经发育疾病，注意力缺陷多动障碍（ADHD）和自闭症（ASD），分别影响了英国5%和1%的儿童和成人——平均每个教室有一个孩子。如今，对自闭症和多动症的认识有了很大的提高。然而，许多成人和儿童还没有得到诊断。在英国的医疗保健系统中，如果没有诊断，这些患者就无法获得所需的护理。患有多动症或自闭症通常会对生活的许多方面产生负面影响，比如就业、人际关系或学业。研究表明，患有未确诊和未经治疗的ASD/ADHD的成年人更有可能出现教育问题、心理健康问题、抑郁和焦虑，更有可能犯罪和滥用药物，更有可能离婚、失业或自杀。如果没有诊断出ASD/ADHD，这些方面会更糟，但可以通过早期识别和有效的支持来减少。尽早诊断ASD/ADHD对于降低患有这些疾病的成年人的一些长期风险至关重要。最近的政府报告强调了获得这些疾病的诊断和护理的重要性。为了成功地解决这些优先事项，重要的是研究首先确定未确诊的ASD/ADHD患者的生活成本。以前的研究调查了未确诊的心理健康对个人、社会和经济的成本和影响，结果表明，未诊断和治疗心理健康问题的成本高于为这些问题提供服务的成本。这导致了国民保健服务（IAPT）的建立，这是一项帮助有心理健康问题的成年人的服务。迄今为止还没有关于未确诊的ASD/ADHD费用的研究。这项新研究将强调未确诊的ASD/ADHD的经济和社会成本，以便为政策制定者和医疗保健提供者提供必要的信息，以证明资助适当的服务是合理的。最具体地说，该项目将回答两个问题：1。与未确诊的ASD/ADHD相关的长期风险和影响（例如：更高的离婚率、药物滥用、失业）是什么？这些相关风险的个人、社会和经济成本是什么？为了回答这些问题，首先对已发表的科学文章进行文献综述，总结研究未确诊的自闭症/多动症相关风险的研究。然后，我将对患有ASD/ADHD的成年人进行问卷调查和访谈，以了解文献综述中强调的风险是否反映了现实生活中的挣扎。这两项研究将对未确诊的ASD/ADHD相关风险进行全面总结。一旦总结完成，将对未确诊的成年人进行这些风险成本的经济评估。为了了解这些成本意味着什么，他们将被与三组进行比较，一组是在儿童时期被诊断为ASD/ADHD的成年人，一组是在儿童时期被诊断为自闭症的成年人，一组是在成年时期被诊断为自闭症的成年人。这将使我们能够尽早确定接受诊断影响的真实成本。一组患有ASD/ADHD的成年人将对这个项目的所有不同任务进行反馈，以确保它代表了现实生活中的经历。许多人认为，患有自闭症/多动症等疾病的人比神经正常的人对社会的成本要高得多（例如，在课堂上需要额外的支持）。然而，这项研究认为，从长远来看，没有识别出有这种困难的个人的成本可能会更高（例如，虽然课堂上的额外支持有成本，但从长远来看，学业成绩不佳和失业对个人和社会的成本要高得多）。

Currently in the UK, it is estimated that over 2.5 million of neurodiverse adults have not received a diagnosis and therefore struggle to access care. The most common neurodevelopmental conditions, attention deficit hyperactivity disorder (ADHD) and autism (ASD), affect 5% and 1% of children and adults in the UK - on average one child per classroom. Nowadays, the understanding of autism and ADHD has greatly increase. However, a lot of adults and children have not received a diagnosis. Within the UK healthcare system, without a diagnosis, these patients cannot access the care they need. Having ADHD or autism often negatively impacts many aspects of life such as employment, relationship, or school. Studies have shown that adults with undiagnosed and untreated ASD/ADHD are more likely to have educational problems, mental health issues, depression and anxiety, are more likely to commit crimes and abuse substances, are more likely to divorce, be unemployed or commit suicide. These aspects are worse when ASD/ADHD is not diagnosed but can be reduced with early identification and effective support. Diagnosing ASD/ADHD as early as possible is of utmost importance in reducing some of these long terms risks for adults living with these conditions.Recent governmental reports have highlighted the importance of having access to diagnosis and care for these conditions. In order to successfully address these priorities, it is important that research first identifies the costs of living with undiagnosed ASD/ADHD. Previous studies which have looked into the cost and impact of undiagnosed mental health on the individuals, society and economy have shown that the cost of not diagnosing and treating mental health issues was higher than the cost of running services for these issues. This led to the creation of a national NHS service (IAPT), a service helping adults with mental health issues.No research to date has been done on the cost of undiagnosed ASD/ADHD. This new study will highlight the economic and societal cost of undiagnosed ASD/ADHD in order to give policy makers and healthcare providers the necessary information to justify funding appropriate services. Most specifically, the project will answer two questions:1. What are the long-term risks and impacts (for instance: higher rate of divorce, substance abuse, unemployment) associated with undiagnosed ASD/ADHD?2. What are the individual, societal and economic costs of these associated risks?To answer these questions, first a literature review of published science articles will summarise the studies which looked into the risks associated with undiagnosed ASD/ADHD. Then I will conduct questionnaires and interviews with adults with ASD/ADHD to see whether the risks highlighted in the literature review reflect real life struggles. These two studies will create a comprehensive summary of the risks associated with undiagnosed ASD/ADHD. Once this summary is completed, an economic evaluation of the costs of these risks will be conducted with undiagnosed adults. In order to understand what these costs mean, they will be compared to three groups, one groups of adults diagnosed with ASD/ADHD in childhood, one group of adults diagnosed in childhood and one group of adults diagnosed in adulthood. This will allow us to establish the true cost of the impact of receiving a diagnosis as early as possible. A group of adults with ASD/ADHD will feedback on all the different tasks of this project to ensure it represents real-life experiences.Many people argue that having conditions such as ASD/ADHD cost a lot more to society than neurotypical individuals (for example, extra support in class). However, this study argues that the cost of not identifying individuals with such difficulties, is likely to cost more in the long term (for example while extra support in class has a cost, school underachievement and unemployment will cost much more to an individual and society in the long run).