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

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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.