Understanding Pathways from Environmental Risk to Internalising Problems for Autistic Young People

自闭症的特点是在社交、交流、灵活性和感觉处理方面存在差异。自闭症患者的精神健康困难率非常高：与非自闭症患者相比，他们至少有三倍于非自闭症患者的内在性障碍(即焦虑和/或抑郁)。这些心理健康问题通常在儿童和青春期就已经形成，并可能对自闭症患者的生活产生毁灭性的影响。尽管如此，目前对自闭症患者的内化问题缺乏有效的治疗；大多数人不得不在没有他们需要的帮助的情况下挣扎着。为了开发更好的自闭症内化问题干预措施，我们需要更全面地了解它们为什么首先发展，为什么它们持续存在，以及什么可以帮助减少它们。我们的目标是对是什么驱动自闭症年轻人内化问题(AYP)的发展做出新的发现，从而为预防和治疗提供新的见解。我们将专注于社会和物理环境的特征，以及这些特征如何导致AYP的内化问题。我们采用这种方法是因为：(I)环境因素，不仅是个人特征，极有可能影响自闭症患者的心理健康，但这一领域的研究一直缺乏；(Ii)它反映了新的、社区驱动的‘神经多样性范式’，强调了在背景下理解自闭症生活的必要性；(Iii)许多潜在的环境风险因素(例如，父母教养、学校特点、噪音)是可以改变的，因此可能成为未来干预措施的目标，以预防或治疗自闭症内化困难。我们的项目分为以下阶段：第一阶段-定性研究。在项目开始时，我们将访问自闭症患者和自闭症患者的家长，根据生活经验，了解自闭症患者内化问题，产生关于其性质、过程、原因、维持因素、缓解因素和影响的想法。过渡阶段。在第一阶段研究结束后，我们将与AYP和其他利益相关者(例如，父母、自闭症成年人、临床医生、政策制定者)进行咨询和合作，以便我们第一阶段的发现塑造我们项目的其余部分。这将涉及研究人员和利益相关者共同努力，得出可以在项目的量化阶段2中可行地解决的重点研究问题。我们已经有了第二阶段的详细计划，但过渡阶段将加强和扩展这一阶段。第二阶段-定量研究。我们将使用两项英国出生队列研究--千年队列研究(MCS)和雅芳亲子纵向研究(ALSPAC)--的数据，对环境对自闭症心理健康的影响进行有史以来最大规模的调查。在MCS和ALSPAC，我们将调查AYP内化问题的轨迹，以及与更好和更差的结果相关的各种环境因素。我们对纵向数据的复杂分析将使我们能够对随时间展开的过程进行建模，以确定环境如何塑造AYP，反过来，AYP如何塑造其环境。我们还可以识别风险的关键时期并测试级联反应，即环境因素以一种随后影响内化症状的方式影响发育/行为。对我们的项目至关重要的是研究人员、AYP、自闭症成年人、父母和其他利益相关者之间的合作，以塑造研究的所有要素。为此，我们将建立咨询小组(AYP的一个，成人利益相关者之一)，他们将定期会面；我们还将在整个项目期间咨询更广泛的自闭症患者社区。我们将通过与一位艺术家和AYP共同制作的学术论文、会议、博客、社交媒体和图形材料，在学术界内外分享我们的发现。

Autism is characterised by differences in social relating, communication, flexibility and sensory processing. Autistic people experience very high rates of mental health difficulties: they are at least three times more likely to have internalising difficulties (i.e., anxiety and/or depression) compared to non-autistic people. These mental health difficulties often become established in childhood and adolescence and can have devastating effects on autistic people's lives. Despite this, currently, effective treatments for the internalising problems of autistic people are lacking; and most have to struggle on without the help they need. To develop better interventions for autistic internalising problems, we need a much more comprehensive understanding of why they first develop, why they persist and what can help reduce them.We aim to make new discoveries about what drives the development of internalising problems in autistic young people (AYP), thereby contributing new insights to inform prevention and treatment. We will focus on features of the social and physical environment, and how these contribute to AYP's internalising problems. We take this approach because: (i) it is highly likely that environmental factors, not just individual characteristics, influence autistic mental health, but research in this area has been lacking; (ii) it reflects the new, community-driven 'neurodiversity paradigm' that highlights the need to understand autistic lives in context; (iii) many potential environmental risk factors (e.g., parenting, school characteristics, noise) are amenable to modification, and so could become targets for future interventions to prevent or treat autistic internalising difficulties.Our project has the following phases:Phase 1 - Qualitative Study.At the start of the project, we will interview AYP and parents of AYP to develop understanding, based on lived experience, of autistic internalising problems, generating ideas about their nature, course, causes, maintaining factors, mitigators and impacts. Bridging Phase.Towards the end of the Phase 1 study, we will hold a process of consultation and collaboration with AYP and other stakeholders (e.g., parents, autistic adults, clinicians, policy makers), so that our Phase 1 discoveries shape the rest of our project. This will involve researchers and stakeholders working together to derive focused research questions that can feasibly be addressed in the quantitative Phase 2 of the project. We already have a detailed plan for Phase 2, but the Bridging Phase will enhance and extend this.Phase 2 - Quantitative Study.We will conduct the largest-ever investigation of environmental influences on autistic mental health, using data from two UK birth cohort studies, the Millennium Cohort Study (MCS) and the Avon Longitudinal Study of Parents and Children (ALSPAC). In MCS and ALSPAC, we will investigate the trajectories of AYP's internalising problems and diverse environmental factors associated with better and worse outcomes. Our sophisticated analyses of longitudinal data will allow us to model processes that unfold over time to identify ways in which environments shape AYPs and, conversely, how AYPs shape their environment. We can also identify critical periods of risk and test for cascades, whereby an environmental factor influences development/behaviour in a way that subsequently influences internalising symptoms. Crucial to our project is collaboration amongst researchers, AYP, autistic adults, parents and other stakeholders, to shape all elements of the research. To this end we will establish advisory panels (one of AYP, one of adult stakeholders) who will meet regularly; and we will also consult a wider community of autistic people throughout the project. We will share our findings within and outside academia, via academic papers, conferences, blogs, social media and graphical materials co-produced with an artist and AYP.