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

自闭症的特点是在社会关系、沟通、灵活性和感觉处理方面存在差异。自闭症患者经历心理健康问题的比率非常高：与非自闭症患者相比，他们有内化困难（即焦虑和/或抑郁）的可能性至少高出三倍。这些心理健康问题通常在儿童和青少年时期形成，并可能对自闭症患者的生活造成毁灭性的影响。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帮助的情况下挣扎。为了更好地干预自闭症内化问题，我们需要更全面地了解为什么它们最初会发展，为什么会持续存在，以及如何帮助减少它们。我们的目标是对自闭症年轻人（AYP）内化问题发展的驱动因素做出新的发现，从而为预防和治疗提供新的见解。我们将集中讨论社会和自然环境的特点，以及这些因素如何导致青少年发展计划的内化问题。我们采用这种方法是因为：(i)环境因素很有可能影响自闭症患者的心理健康，而不仅仅是个体特征，但这方面的研究一直缺乏；（ii）它反映了新的、社区驱动的“神经多样性范式”，强调需要在背景中理解自闭症患者的生活；（iii）许多潜在的环境风险因素（如父母、学校特点、噪音）是可以改变的，因此可以成为未来干预的目标，以预防或治疗自闭症的内化困难。本项目分为以下几个阶段：第一阶段-定性研究。在项目开始时，我们将采访青少年和青少年家长，根据生活经验，了解自闭症内化问题，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。桥接阶段。在第一阶段研究结束时，我们将与AYP和其他利益相关者（如家长、自闭症成年人、临床医生、政策制定者）进行协商和合作，以便我们的第一阶段发现影响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，得出可以在项目的定量第二阶段切实解决的重点研究问题。我们已经为第二阶段制定了详细的计划，但过渡阶段将加强和扩展这一计划。第2阶段-定量研究。我们将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，使用来自两项英国出生队列研究的数据，千年队列研究（MCS）和雅芳父母与儿童纵向研究（ALSPAC）。在MCS和ALSPAC中，我们将研究AYP的内化问题和与更好和更坏结果相关的各种环境因素的轨迹。我们对纵向数据的复杂分析将使我们能够对随着时间的推移而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。我们还可以确定风险的关键时期，并测试连锁反应，即环境因素影响发展/行为，从而影响内化症状。对于我们的项目来说，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。为此目的，我们将设立咨询小组（一个是青少年发展计划成员，一个是成年利益相关者），他们将定期开会；在整个项目中，我们还会咨询更多的自闭症患者。我们将通过与艺术家和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.