Sue: Welcome to the Open Psychology Research Centre. You’ve recently started a PhD in the School of Psychology & Counselling at The Open University and you are researching the topic of non-speaking autism. Can you tell us a bit about your background and how you became interested in these questions?
Ruth: I’ve finally got around to doing my PhD after quite a circuitous route encompassing a degree in languages economics and politics, a post-graduate teacher training certificate, working as a residential social worker, running an Arts Council funded community printshop and then a karate club, training to be a chartered physiotherapist and then having my three children. My middle child was diagnosed with autism as a 2 ½ year old. Nathaniel is non-speaking. We spent years trying to find the best approaches and therapy for him as he developed extremely challenging behaviours, largely due to his frustration.
When he transitioned into adulthood, and, due to the lack of appropriate facilities, I became a trustee of a charity in Devon-Stallcombe House-where they initially said that they could not support his complex needs. After some negotiation, we managed to raise the funds to build a specialist centre, within Stallcombe, for Nathaniel and five other adults with ‘complex needs’. Just before this, I had completed my OU degree in Psychology and then went on to study for an MSc in Research Methods at Southampton University. At the time -over a decade ago- there was not much appreciation of ‘inclusive research’ (i.e. actively involving participants in research) or many theories about non-verbal (although I prefer to use non-speaking-as my son has plenty of verbs!) autism that stem from movement disorders.
Sue: How did you come to the decision to do your PhD research in this area?
Ruth: I, like many other parents, have always thought that my son’s receptive language skills far outweigh his ability to express himself and much current research bears this out. Nathaniel is just about to embark on a therapy called Rapid Prompting Method (RPM) whereby the teacher continuously verbally, and occasionally physically, prompts the student to respond to questions by pointing to letters on a letterboard. This approach really stems from the idea that, particularly in relation to non-speaking autism, the body is not responding appropriately to neurological commands.
Autistic bloggers have often referred to the idea of ‘autistic inertia’ and the fact that they do not feel they can appropriately respond to stimuli. This idea completely resonates with my physiotherapy background and experience. Many students have progressed to independent typing, often eloquently describing their feelings of not previously being able to communicate. It is this participant group to whom I am aiming to provide a platform within my research.
As I had been working, for the previous four years, for an advocacy charity as a professional mental capacity advocate and had consistently advocated for non-speaking autistic people to have the ability to express themselves, I believe it is necessary to raise awareness of access to assistive technologies, teaching and communication aids for non-speaking autistic people, as a basic human right.
There is increasing evidence, from first hand testimonies of non-speaking autistic people, that there is a brain-body disconnect in terms of intentional action and arousal regulation, concomitant with feelings of ‘autistic inertia’ and I will be using first-hand accounts of autistic life, from non-speaking autistic people who use alternative forms of communication (possibly as a result of RPM therapy) to express their feelings of embodiment, historical experiences of ‘sense of self’ within a neurotypical world and their statement of preferences in the way in which they choose to live their lives.
Sue: Thanks Ruth, and good luck with your research!
Ruth Collier-Large is supervised by Professor Lindsay O’Dell and Dr Karen Hagan. She was talking to Sue Cocklin, OPRC Centre Assistant.