Title From the edge of the spectrum to the heart of the sun
Subtitle How I care for my autistic son and how I can help others care for him.
Introduction J. is my son, an autistic adult with additional learning difficulties and epilepsy who is dependent on me to stay safe and meet his needs. He has been living with myself and his mum at the family home since March 2020. As well  as being a trained autism educator, I believe myself to be on the edge of the autistic spectrum. Does my being an 'Aspie' give me special insight into my son's needs? That's one of the questions I want to explore as part of this project.

To help me answer this question, I intend to develop the delivery of J's care at home by assessing his needs and creating a written care package, which I will then evaluate at regular intervals. Which leads me on to a further question.

One day, at sometime in the future, my son will enter residential care. How can my assessment and care plans and evaluations contribute to his care in such a setting? I propose that annotating the written care package with homemade 'video care plans' will support my son's care in a residential care setting.

An action research approach will inform this study with the aim of promoting family advocacy in adult autism residential care. A research journal will provide a platform to reflect upon this and related issues such as how autism expertise contributes to improved care outcomes in adults with autism; social care policy; neurodiversity; and critiques of autism care within critical autism studies.

Scope Analysis will focus on J's assessment and on the development, implementation and evaluation of his care package at home, and on the potential or actual contribution of this package to J’s care in a residential  setting.
Aims & Objectives To assess J’s needs,; to write a set of care plans which describe how his needs should be met annotated by video care plans; and to evaluate the care plans, including their likely or actual contribution to J’s care in a residential setting.
Justification The needs of J.. The family’s (often unsatisfactory) experience of working with a so-called ‘specialist’ residential care home for adults with autism.
Review of the Literature The project encompasses fields of knowledge that include autism studies; caring for adults with autism; social care in England; care assessment; care planning; care plan evaluation; the production of video care plans; action research.
Methodology The project will use an action research methodology to critically analyse residential social care for adults with autism in England, focusing on the relationship between care homes and residents’ families, as well as developing creative solutions through which families might contribute towards the care of their autistic relatives. The project’s progress will be supported by a research journal, which will become the basis for an extended written narrative.
Work schedule The project should be completed within approximately 3 years.
August 2021-July 2024.
Scheduled times given below are approximate. Their duration and order is likely to change if J. transitions to a residential setting during this period.
Reading
01. Methodology (2 months)
02. Revisiting autism studies (5 months)
03. Residential care for adults with autism (5 months)
Research
04. Care Plans (12 months)
a. General introduction
b. Assessment in a domestic setting
c. Writing care plans in a domestic setting
d. Video care plans for a domestic setting
e. Evaluating care plans
Writing
05. The narrative (12 months)
Resources Research texts
Research journal
Video camera, laptop, and video editing software.
References & indicative bibliography

Davidson, J. and Orsini, M. eds., 2013. Worlds of autism: Across the spectrum of neurological difference. U of Minnesota Press.

Fletcher-Watson, S. & Happé, F., 2019. Autism: A new introduction to psychological theory and current debate. Routledge.

Glasby, J., 2017. Understanding health and social care: third revised edition. Policy Press.

Lloyd, M., 2010. A Practical Guide to Care Planning in Health and Social Care. Open University Press.

McNiff, J., 2016. You and your action research project. Routledge.

Osgood, T., 2019. Supporting Positive Behaviour in Intellectual Disabilities and Autism: Practical Strategies for Addressing Challenging Behaviour. Jessica Kingsley Publishers.

Silberman, S., 2015. Neurotribes: The legacy of autism and the future of neurodiversity. Penguin.

Stoller, B. M. (2019) Filmmaking For Dummies, 3rd Edition (For Dummies)

Wolff, S., 2020. Loners: The life path of unusual children. Routledge.

Zinsser, W., 2006. On writing well: The classic guide to writing nonfiction. Harper Perennial.

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