'Our Stories...': co-constructing Digital Storytelling methodologies for supporting the transitions of autistic children

自闭症患者的长期社会、教育和就业结果仍然很差。研究与实践之间存在长期差距，尽管进行了40多年的研究，但这些不良结果并未得到充分解决。这导致人们呼吁研究开发更具参与性的方法，包括自闭症患者，以便能够以更有效的方式识别，探索和理解他们的需求和优势，从而改变日常生活。然而，许多参与办法仍然是象征性的和不全面的，许多声音和经验被排除在外，没有得到充分的探讨。这些声音包括那些有复杂需求的人，他们可能无法通过语言进行交流。也排除了家庭的声音，以及教育，卫生和社会护理的从业人员。生活经验和专业知识是证据的来源，在研究中经常被忽视和低估，而有利于科学证据和正式知识。我们认为，研究，以及其中使用的方法，只能对实践产生影响，如果有一个真正的承诺，收集和理解这些不同的证据来源的方式，连接研究和实践从一开始。实践知识和经验需要为研究提供信息，研究需要解决对儿童、家庭和从业者重要的实际问题。因此，该项目将应用并扩展参与式数字讲故事方法，以探索收集自闭症儿童、家庭的一系列观点的方法挑战，并以真实的方式进行实践。数字故事讲述是一种可访问和包容性的方法，支持以视觉和视频形式分享观点和经验。我们非常成功地使用这种方法来探索4岁自闭症儿童的观点，为他们的第一所学校的过渡规划提供信息（https：//autismtransitions.org/），以及在学校中使用新技术的教学和学习实践，以支持自闭症儿童的广泛需求（https：//tinyurl.com/yb35vygt）。该项目将专注于将这种方法应用并扩展到自闭症儿童和家庭的过渡。过渡包括日常变化，如家庭和学校之间，教室和休息时间，参加评估和约会，加上学校教育阶段之间的主要生活过渡。虽然这种转变会给所有儿童带来不确定性，但对自闭症儿童及其家庭来说尤其困难。在COVID-19的封锁下，目前支持过渡的策略（如纸质检查表和准备性访问）被发现是不够的。因此，现在有真实的机会来制定切实可行的研究方法，这些方法也将发挥作用，并促进对个人需求的评估和长期规划。我们将通过试验一系列数字视频技术来探索这一研究挑战（如360度虚拟图尔斯之旅、虚拟现实、Wearcams），重点是（1）从小学到中学的过渡（2）向继续教育、培训的过渡，或就业（3）过渡到医疗保健和评估（4）每天在课堂上发生的微观转变。我们的项目将开发实用和可扩展的数字方法，与实践环境，这将告知包容性的研究实践，也可以在儿童，家庭，学校和组织长期使用。虽然我们的项目侧重于自闭症，但我们获得的知识适用于更广泛的研究和实践，适用于任何从传统的研究方式和任何实践背景中被边缘化的声音或群体。

The long-term social, educational, and employment outcomes for autistic people remain poor. There is a longstanding gap between research and practice such that these poor outcomes are not being adequately addressed despite over 40 years of research. This has led to calls for research to develop more participatory methods that are inclusive of autistic people such that their needs and strengths can be identified, explored, and understood in more effective ways that make a difference to everyday life. However, many approaches to participation remain tokenistic and partial, with many voices and experiences excluded and under-explored. Such voices include those with complex needs who may not communicate via speech. Also excluded are the voices of families, and practitioners across education, health, and social care. Lived experiences and professional knowledge are sources of evidence that are regularly overlooked and undervalued in research in favour of scientific evidence and formalised knowledge. We argue that research, and the methods used therein, can only make an impact on practice if there is a genuine commitment to gathering and understanding these different sources of evidence in ways that connect research and practice from the start. Practical knowledge and experiences need to inform research, and research needs to address practical issues that matter to children, families and practitioners.This project will therefore apply and extend a participatory Digital Storytelling methodology to explore the methodological challenge of gathering a range of views from autistic children, families, and practice in authentic ways. Digital Storytelling is an accessible and inclusive methodology that supports the sharing of views and experiences in visual, video form. We have very successfully used this approach to explore the perspectives of 4-year-old autistic children to inform transition planning to their first schools (https://autismtransitions.org/), and teaching and learning practices with new technologies in schools that support autistic children with a wide range of needs (https://tinyurl.com/yb35vygt).This project will focus on applying and extending this methodology to the transitions of autistic children and families in a range of contexts. Transitions include everyday changes such as between home and school, classroom and break time, attending assessments and appointments, plus the major life transitions between stages of schooling. While such transitions can create uncertainty for all children, they can be especially difficult for autistic children and their families. Current strategies for supporting transitions (such as paper-based checklists and preparatory visits) have been found wanting under the lockdown for COVID-19. Thus, there is a real opportunity for devising practical research methodologies that will also make a difference and facilitate the assessment of individual needs and planning over the longer term. We will explore this research challenge through piloting a range of digital video technologies (e.g. 360 degree virtual tours, Virtual Reality, Wearcams) across four projects, focusing on (1) the transition between primary and secondary school (2) the transition into further education, training, or employment (3) transitions into healthcare and assessment and (4) the micro-transitions that take place in the classroom every day. Our project will develop practical and scalable digital methods, with practice settings, that will inform inclusive research practices and can also be used in the long-term by children, families, schools and organisations. While our project focuses on autism, the knowledge we gain is applicable to research and practice much more widely and to any voices or groups who are marginalised from the traditional ways of doing research and to any contexts of practice.