Leneh is autistic and a parent of four neurodivergent young people. Leneh has been involved in the autistic community for nearly 25 years. She has worked with autistic people since 2004, largely in a leadership capacity, to create and manage Autscape, a large annual residential event for autistic people held in the UK and recently online.
Following degrees in neuroscience, psychology and bioethics, Leneh is currently undertaking a PhD at the University of Manchester looking at initiation impairments (‘inertia’) in autistic people. Leneh has experience of involving autistic people in the neurotypical-dominated domain of autism research. She currently works part-time as an associate research consultant and as an autism trainer in social care. Leneh has also been involved as a consultant on multiple research projects and panels. Her focus throughout her involvement in these diverse endeavours has been on setting aside assumptions, prioritising support for autonomy, and recognising that autistic people’s priorities may differ from the typical. She often serves as a ‘translator’ between autistic experts by experience and neurotypical researchers as she speaks the languages of both communities.
Autistic people report a range of difficulties with starting and stopping activities which are often informally called ‘inertia’. Considering how common these problems are, and how much of an impediment they can be to independent functioning, there has been nowhere near enough attention from researchers and clinicians. For the most part, they see these difficulties as ‘non-compliance’ or ‘lacking (social) motivation’.
I believe ‘inertia’, like autism itself, is actually a number of overlapping issues. At Autscape 2019 in England I began the first phase of my PhD research into this topic. In this presentation I will share some of my findings, including the three main causes of autistic people’s difficulty doing things.
I will also share some of the anti-inertia strategies shared by my research participants and that I have developed and collected over the years.
A slightly different way of measuring progress
I would like to talk about a project I have just done, and may (if lucky enough to get funded) be expanding on in the summer. This project was started by a company that does pre-employment work with autistic young people (age 14-25) who are not in work or education. They found that when they measure progress using traditional measures of ‘success’ these young people look like they haven’t improved much; however, many of them may have made great strides in their social and emotional wellbeing. The company asked for researchers (myself and my colleague, Maria Liashenko) to develop a way of measuring progress that would take into account what is important to their clients.
This project resulted in a slightly different way of measuring progress that:
A. Looks at real life beyond education and employment (e.g. social engagement, accessing the community, communication)
B. Is based on the priorities of autistic people
C. Is accessible for autistic people in terms of layout, language, question style, etc.
This progress tool was developed in a research project involving autistic young people and the results of a survey of 87 autistic people of all ages. The research was collaborative, with the autistic young people involved not just as participants, but as contributors to the design and development of the tool. The result is a model progress assessment tool for autistic people which guides the user through working out what areas are important to them now, setting goals, and measuring progress towards those goals.