Exploring the Impact of Clinical Diagnosis on Health and Education Outcomes for Children Receiving Special Educational Needs support for Autism

自闭症，或自闭症谱系障碍(ASD)，是一种终生发育障碍，影响人们与世界沟通和互动的方式。它影响了大约3%的儿童。患有自闭症的儿童经历了认知、感觉和社交方面的挑战，包括在学校。他们面临着不利的健康和教育后果，如认知发育延迟、运动技能挑战、焦虑、缺课和被排斥的风险增加。2011年，在英国，支持自闭症患者的终生费用为92万GB，而4-17岁自闭症患者的特殊教育和健康相关年度成本为14,006 GB和890 GB。自闭症的临床评估通常在儿童和青少年精神卫生服务(CAMHS)内进行，正式诊断是获得量身定制的支持和服务的关键一步，以应对自闭症的独特挑战。尽管在没有临床诊断的情况下，学校有一些机会获得额外的支持，但许多自闭症儿童没有得到他们所需的全部支持。在目前的临床系统中，评估ASD是一个重大的挑战。在一些地区，等待评估的时间已经超过5年，造成了无法管理的积压。这一危机需要立即采取行动，确保在卫生和教育环境中及时为儿童提供支持。为了解决这一紧迫问题，该项目将产生关于自闭症临床诊断对英国儿童健康和教育结果不平等的影响的新知识。这一知识将使卫生和教育服务部门能够确定采取干预措施以减轻不平等的机会。我将分析来自关联数据的教育和儿童健康洞察(ECHILD)的数据。ECHILD将英格兰所有儿童的健康、教育和社会护理信息结合在一起，并提供结果的详细情况。该项目将利用公共卫生、数据科学和地理学等不同学科来探索自闭症儿童的健康和教育结果，考虑到临床评估中服务短缺的更广泛背景。主要目标是调查从临床环境中获得诊断是否为仅在教育环境中发现患有自闭症的儿童提供额外的优势，这些儿童可能需要额外的支持。这一探索旨在加强我们对哪些儿童将从临床诊断中受益最大的理解。所获得的见解可用于优先考虑等候名单上的儿童，将公平和可编程的做法引入卫生系统。项目的实际意义在于直接应对与诊断不足和临床服务危机有关的挑战。它努力促进对儿童的平等关爱，特别是那些来自弱势背景的儿童，如果他们的自闭症得不到确认和解决，他们可能面临更严重的不利条件。我致力于与主要利益攸关方密切合作，包括支持自闭症儿童的教育和卫生服务成员，以及让自闭症社区成员参与。这个项目的潜在影响是巨大的，有能力带来切实的教育和健康好处，并产生有意义的影响。它解决了一线从业者、政策制定者和其他努力支持自闭症儿童的利益相关者目前面临的危机。该提案与促进行政数据研究的参与和社区建设的目标一致，强调致力于为自闭症儿童及其家庭的生活带来积极的改变。

Autism, or Autistic Spectrum Disorder (ASD), is a lifelong developmental disability which affects how people communicate and interact with the world. It affects around 3% of children. Children with ASD experience cognitive, sensory, and social challenges, including in schools. They face adverse health and education outcomes, such as an increased risk of cognitive development delays, motor skill challenges, anxiety, and school absence and exclusion. The lifetime cost of supporting an individual with ASD in the UK was £0.92 million in 2011, whilst annual special education and health-related costs for 4-17-year-olds with ASD were £14,006 and £890.Clinical assessments for ASD are typically conducted within Child and Adolescent Mental Health Services (CAMHS), and a formal diagnosis is a crucial step toward accessing tailored support and services addressing the unique challenges of ASD. Although there is some opportunity for additional support in schools without a clinical diagnosis, many children with autism are not getting the full support they need. There is a significant challenge within the current clinical system for assessing ASD. Waiting times for assessments have surpassed 5 years in some regions, creating an unmanageable backlog. This crisis necessitates immediate action to ensure timely support for children in both health and education settings.To address this pressing issue, this project will generate new knowledge about the impact of clinical diagnosis of ASD upon inequalities in health and education outcomes for children in England. This knowledge will enable health and education services to identify opportunities to intervene to mitigate inequalities. I will analyse data from Education and Child Health Insights from Linked Data (ECHILD). ECHILD joins together health, education and social care information for all children in England and provides a detailed picture of outcomes. The project will draw upon diverse disciplines such as public health, data science, and geography to explore health and educational outcomes for autistic children, considering the broader context of service shortages in clinical assessments.The primary goal is to investigate whether obtaining a diagnosis from a clinical setting offers additional advantages to children identified solely in an educational setting with ASD, who may require extra support. This exploration aims to enhance our understanding of which children would benefit most from clinical diagnoses. The insights gained could be applied to prioritising children on waiting lists, introducing fair and programmable practices into health systems. The benefit is that the needs of children could be better matched by the services that support them.The project's practical relevance lies in directly addressing challenges related to underdiagnosis and the crisis in clinical services. It strives to promote equal care for children, particularly those from disadvantaged backgrounds who may face exacerbated disadvantages if their ASD is not identified and addressed. I am committed to working closely with key stakeholders, including members of education and health services supporting autistic children, as well as involving members of the ASD community.The potential impact of this project is substantial, with the capacity to bring about tangible education and health benefits and create meaningful impact. It addresses the crisis currently faced by frontline practitioners, policymakers, and other stakeholders striving to support autistic children. The proposal aligns with the objectives of fostering engagement and community building in administrative data research, emphasising a dedication to making a positive difference in the lives of autistic children and their families.