Autism and Blackness: The role of culture and ecological contexts in black families

自闭症与黑人：文化和生态环境在黑人家庭中的作用

• 批准号: ES/X007057/1
• 负责人: Eli Ashong
• 金额: $ 12.36万
• 依托单位: University of Birmingham
• 依托单位国家: 英国
• 项目类别: Fellowship
• 财政年份: 2022
• 资助国家: 英国
• 起止时间: 2022 至 无数据
• 项目状态: 已结题
• 来源: https://gtr.ukri.org/projects?ref=ES%2FX007057%2F1
• 关键词: Autism; Blackness; role; culture; ecological

The fellowship focuses on Black parents' experiences of children with autism spectrum disorder (autism). Black parents' experiences of autism are not well known, and this study recognises the importance of including their voices on what we know so far about how autism shapes parents' experiences. Autism research have explored parents' psychological wellbeing, finances, family life adjustment and navigating the system following an autism diagnosis. My PhD findings revealed similar results but highlighted how familial, community and systemic contexts influence parents experiences.Research has not always considered the systems (community, institutions) that influence family life, which means considering parents within the context of their family's culture and exploring the impact that raising a child with autism can have on family units and members. Alongside this, it is crucial to identify and acknowledge the existing culture in the various systems and its impact on parents' experiences. My PhD findings revealed the main factors that impact Black parents experiences are cultural beliefs, disablist attitudes and structural racism in health, education and local authority contexts.During this fellowship, I will build on my PhD work to develop a better understanding of families of children with autism, learn more about their experiences, and contribute evidence which can be used to support them in the future. A key aim will be to extend knowledge in the academic community. To achieve this, I will revise my doctoral research for publication and easily extract data from chapters of the thesis; share findings with parents of children with autism and professionals who support them to improve their lives and practice.The activities proposed in the fellowship will focus specifically on Black parents' outcomes because we know little about their perspectives and experiences. Typically, when researchers have asked families to take part in research, it is mothers that respond and take part in answering questions about themselves, their child, and their family and so research evidence is often focused on mothers. The wider research community will benefit from research on Black fathers. As it stands, autism research on family experiences lack male and ethnic representation, and this proposed research, the first on Black fathers of children with autism in the UK, will become a tool to build knowledge and commence a process that begins to bridge this research gap. The pilot study will examine and generate knowledge of Black fathers' experiences of autism: the interplay of identities - race, gender and disabilities - will give insight to how fathers understand, experience and respond to their child's health, care and educational needs. This new project will consult with fathers of children with autism to understand how they experience autism from a cultural and racial lens. The aim of this work is to recognise fathers of children with autism, collaborate with them to better understand their needs, and to share information to benefit others.

该奖学金的重点是黑人父母对患有自闭症谱系障碍(自闭症)儿童的经历。黑人父母患自闭症的经历并不为人所知，这项研究认识到，在我们目前所知的自闭症如何影响父母的经历方面，包括他们的声音是重要的。自闭症研究探索了父母的心理健康、经济状况、家庭生活调整以及自闭症诊断后的系统导航。我的博士研究发现了类似的结果，但强调了家庭、社区和系统环境如何影响父母的体验。研究并不总是考虑影响家庭生活的制度(社区、机构)，这意味着在他们的家庭文化背景下考虑父母，并探索抚养患有自闭症的孩子可能对家庭单位和成员产生的影响。除此之外，识别和承认不同系统中的现有文化及其对父母经历的影响也是至关重要的。我的博士发现，影响黑人父母经历的主要因素是文化信仰、残疾人态度和卫生、教育和地方当局背景下的结构性种族主义。在这次奖学金期间，我将在我的博士工作的基础上，更好地了解自闭症儿童的家庭，更多地了解他们的经历，并提供证据，在未来可以用来支持他们。一个关键目标将是扩大学术界的知识。为了实现这一目标，我将修改我的博士研究以供出版，并轻松地从论文的章节中提取数据；与患有自闭症儿童的父母和支持他们改善生活和实践的专业人士分享研究结果。奖学金中提议的活动将专门关注黑人父母的成果，因为我们对他们的观点和经历知之甚少。通常，当研究人员要求家庭参与研究时，是母亲回应并参与回答关于自己、孩子和家庭的问题，因此研究证据往往集中在母亲身上。更广泛的研究界将从关于黑人父亲的研究中受益。目前，关于自闭症家庭经历的研究缺乏男性和种族代表性，这项拟议中的研究是英国第一项关于自闭症儿童的黑人父亲的研究，将成为建立知识的工具，并开始弥合这一研究差距的进程。这项试点研究将考察和产生关于黑人父亲自闭症经历的知识：身份-种族、性别和残疾-的相互作用将使父亲深入了解、体验和回应他们孩子的健康、护理和教育需求。这个新项目将咨询自闭症儿童的父亲，从文化和种族的角度了解他们是如何经历自闭症的。这项工作的目的是认识患有自闭症儿童的父亲，与他们合作，更好地了解他们的需求，并分享信息，造福他人。