Navigating, Feeling and Living 'SEND': Parent and Practitioner Experiences of Raising Autistic Children at a Time of Austerity

该奖学金的目的将是发展和传播我的博士研究的关键发现。我的研究题为导航、感受和生活‘发送’：父母和从业者在紧缩时期养育自闭症儿童的经历，这项研究在地理上是新颖的，在政治上也是及时的。我与伦敦区的特殊教育需要与残疾(SEND)团队进行了为期四个月的机构人种学研究，并对同一行政区的15名家长进行了重复的叙述性采访，我研究了自闭症儿童的父母如何在紧缩时期驾驭SEND和社会保障支持，以及派遣专业人士与父母互动。我已经展示了紧缩如何影响SEND系统中的管理者和“街头官僚”，以及对整个社会经济领域的家庭的影响，以证明长期以来一直被怀疑但没有得到证实的事实：不同家庭的孩子在获得有限的SEND服务方面处于不平等的地位。我的研究有助于理解紧缩、福利官僚机构、日常家庭生活、护理、残疾和情感地理。我的主要发现是：1.日常生活是通过我们生存所需的福利服务来度过的。这意味着照顾不仅仅是一个私人问题--相反，父母依靠照顾和支持网络来帮助他们照顾他们的孩子。并不是所有的父母都能平等地代表他们的自闭症儿童获得寄送支持。Send是一项全民福利服务(它不需要经济状况调查)，但紧缩意味着资源有限。父母必须学会如何最好地获得帮助，通常是通过反复试验。虽然所有的父母都非常努力地使用Send服务，但他们并不是从相同的分数开始--这意味着他们没有获得相同的结果。因此，根本的结构性和系统性不平等意味着，社会经济各阶层的家庭受到提供服务的紧缩削减的不同影响。3.情绪在Send从业者与父母之间的接触中很重要。我展示了，即使从业者和父母都在努力保持冷静，情绪仍然经常高涨。这可能会影响结果，产生持久的影响。照顾自闭症儿童的父母是“父母照顾者”：他们从事许多不同类型的“工作”来照顾他们的孩子。他们的照看工作量比一个神经质儿童通常预期的要大，这需要额外的时间、精力以及脑力和体力。我认为家长照顾者需要更好的国家支持来管理这一点。我将利用这一奖学金与学术受众分享这些关键发现(通过三篇基于我的论文章节和会议论文的单人撰写的同行评议论文)，以及通过公共参与活动(博客文章、政策简报文件、视频摘要和议会证据提交)。我将通过共同组织一次关于“隐形残疾和日常护理的地理”的会议，在其他会议上发表演讲，并通过与珍妮·米德尔顿共同撰写另外两篇论文(一篇与莫里森博士，一篇与莫里森博士，约翰斯顿教授和弗劳利博士)建立学术网络。我将作为新西兰怀卡托大学和位于新西兰汉密尔顿的Imagine Better(一个残疾社区组织)的访问研究员，与学者和公众分享我的发现。在这样做的过程中，我将建立国际研究联系，并帮助启动关于比较访问的讨论，以向英国和新西兰提供支持。我将通过举办方法培训研讨会、教学和(在适当的情况下)指导，为初级研究人员的能力建设做出贡献。最后，我将与牛津郡的自闭症/ADHD家庭支持小组一起进行初步的参与性范围研究，作为公共参与、公共能力建设和Leverhulme补助金申请的准备。

The aim of this fellowship will be to develop and disseminate the key findings from my doctoral research. Titled Navigating, Feeling and Living 'SEND': Parent and Practitioner Experiences of Raising Autistic Children in a Time of Austerity, my research is geographically novel and politically timely. Drawing on a four-month institutional ethnography with a London borough special educational needs and disability (SEND) team and repeat narrative interviews with 15 parents in the same borough, I have examined how parents of autistic children navigate SEND and social security support, and SEND professionals engage with parents, at a time of austerity. I have shown how austerity impacts on both managers and 'street level bureaucrats' in the SEND system, and on families across the socio-economic spectrum, to evidence what has long been suspected but not proven: that children in different families are unequally placed to access limited SEND services. My research contributes to understandings of austerity, welfare bureaucracies, everyday family life, care, disability, and emotional geographies. My key findings are:1. That everyday life is lived through the welfare services we need to survive. This means that care isn't just a private matter - rather, parents rely on networks of care and support to help them to care for their child/children.2. Not all parents are equally able to access SEND support on behalf of their autistic children. SEND is a universal welfare service (it isn't means-tested) but austerity means resources are limited. Parents have to learn how best to access help, often through trial and error. While all parents work extremely hard to navigate SEND services, they don't start from equal points - which means they don't achieve equal outcomes. Underlying structural and systemic inequalities therefore mean families across the socio-economic spectrum are differentially affected by austerity cuts to SEND services. 3. Emotions matter in encounters between SEND practitioners and parents. I show how, even when practitioners and parents are both trying to stay calm, emotions often still run high. This can influence outcomes, with lasting consequences.4. Parents who care for autistic children are 'parent carers': they are engaged in lots of different kinds of 'work' to look after their child. Their care workload is greater than would typically be expected for a 'neurotypical' child and this requires additional time, effort and mental and physical energy. I argue that parent carers need better state support to manage this.I will use this fellowship to share these key findings with academic audiences (via three single-authored peer reviewed papers, based on my thesis chapters, and conference papers), and via public engagement activities (blog posts, a policy briefing document, video summary, and parliamentary evidence submissions). I will build academic networks by co-organising a conference on 'the geographies of invisible disabilities and everyday care,' presenting at other conferences, and by co-authoring two more papers (one with Jennie Middleton, and one with Dr Morrison, Professor Johnston and Dr Frawley). I will share my findings with academics and members of the public as a visiting researcher to the University of Waikato, NZ, and at Imagine Better (a disability community organisation) in Hamilton, NZ. In doing so, I will forge international research connections and help to start discussions on comparative access to SEND support in the UK and NZ. I will contribute to capacity building amongst junior researchers by running methods training workshops, teaching, and (where appropriate) mentoring. Finally, I will undertake initial participatory scoping research with autism/ADHD family support groups in Oxfordshire, serving as public engagement, public capacity building, and preparation for a Leverhulme grant application.