Autism Interview #171 Part 3: Emma Reardon on the Role of Autistic Voice in Research

Emma Reardon is a wildlife enthusiast and social care professional from the United Kingdom. She is a Director of Autism Well-Being, a not-for-profit organization providing a variety of support and wellbeing services, training and consultancy. In Part One of this series, Emma shared her long road to diagnosis as well as some specific sensory challenges personal to her daily experience. In Part Two of this series, she discussed the significance of sensory trauma, and using language to convey this impact. In Part Three of this series, she discussed the importance of integrating Autistic expertise into sensory research and the powerful role Autistic voice plays in improving the lives of future generations.

Your position paper appears to give credence to Autistic voice, experience, and expertise. Explain how you integrated Autistic expertise in your paper and your view of the role Autistic voice should play in research.

Throughout our research into autistic people’s sensory experiences, we kept coming up against the issue of autistic people’s lived experiences being invalidated or misunderstood. When we first described the phenomenon of Sensory Trauma, we were saying nothing new. Autistic people have always used their bodies, sounds and words to declare that their sensory experiences are different to those of non-autistic people. Sensory Trauma has been hidden in plain sight – it is time for the voices, sounds, and actions of autistic people to be listened to.

I am currently undertaking independent PhD research into perceptions of autism. A review of UK autism research funding was undertaken in 2016 by a research charity. The most common areas of research were about the biology of autism; its causes; and autism treatments. All that money spent on trying to fix autistic people so we fit in better with the world – rather than making the world a better place for us -and by default, other marginalised groups too.

Interdisciplinary research collaborations involving autistic people are gaining momentum, and I feel hopeful that the future of research will continue to move towards a focus on autistic strengths and contributions, where autistic researchers and participants are involved at all levels.

If stereotypes are to be believed, this is an amusing thing for an autistic person to be saying, but the most important thing for me, is to be open to considering other people’s perspectives. We are renowned for not being able to put ourselves in other people’s shoes – but once you start understanding how very different those shoes are, you can begin to perceive why there are so often misunderstandings. Issues with empathy go both ways.

The process of writing the  Sensory Trauma: AUTISM, SENSORY DIFFERENCE AND THE DAILY EXPERIENCE OF FEAR (Autism Wellbeing Book 1) eBook: Fulton, Dr Rorie, Reardon, Emma, Richardson, Kate , Jones, Dr Rachel: Amazon.co.uk: Kindle Store position paper is worth sharing as well. As directors of Autism Wellbeing, we have a whole mix of backgrounds, skills and neurologies.  Our neurodiversity is one of our strengths and gave us a wonderful opportunity to explore how autistic, non-autistic and other neurodiverse team members could collaborate in a way that produced a robustly researched and accessible piece of work. We learned from each other and found a flow whereby we could share ideas, challenge them, bounce them around, rework them – and rework them some more – whilst ensuring we were equally valued and listened to. In fact, this has led to conversations about how we can do further research into how collaborations between autistic and non-autistic people can work effectively. I would like to thank the other members of our team because we have created a piece of work to be proud of. We are driven to make the world better for people and are truly stronger when we work together and play to each other’s strengths.

What is your hope for readers of Sensory Trauma? What do you envision as this paper’s impact?

In the dedication at the front of the paper, we state:

“Autism Wellbeing would like to dedicate this position paper to all the autistic people who do not have a voice or go unheard, in the hope that the world will become less traumatic as we become listened to and understood.”

We sincerely hope that we are part of the change that is needed to enable this to happen.

The single most important sentence I can take from the paper is one that I quoted earlier in this interview: An autistic person’s response to Sensory Trauma is proportional to their genuine, lived experience. If we hold onto that sentence with whoever we are interacting with, then we don’t need to focus so much on working out what’s wrong, we can focus on getting things right.

Autism Wellbeing has had lots of positive feedback, particularly from the autistic community who recognise their lived experience in our position paper. As we are fond of saying, Sensory Trauma has been hidden in plain sight. We hope that by naming, describing and explaining Sensory Trauma, further research will be carried out in this area, and researchers will challenge themselves to truly understand autistic experience.

Can you explain a little about the projects you are currently working on with Autism Well-Being (you training, or the new book for parents you are working on)?

We are writing a book about Sensory Trauma that contains further examples of lived experience as well as tips and suggestions for autistic people, parents and professionals. We also want to write more about the flipside of Sensory Trauma. Autistic sensory experiences may be broader experiences than non-autistic people’s and whilst that means our brains process sensory information as traumatic at one end of the scale, at the other end of the scale we may experience Sensory Joy in the ordinary, everyday things around us that other people miss. I feel this is worth sharing too. I might find hair brushing incredibly challenging, but the joy I get from hearing a particular sequence of music again and again; or from touching certain textures; or seeing a particularly satisfying looking piece of wood, far exceeds the joy my non-autistic peers seem to get from these activities.   Our online Sensory Trauma training has been widely taken up across Wales by clinicians involved in diagnosing autism. It provides in-depth information about all aspects of Sensory Trauma and is a good follow up to our Making Sense Of Autism online course that explores sensory processing, regulation and coregulation and has lots of real life examples from our personal, parental and professional roles.

In the past year, we have written more than 70 information sheets with tips, suggestions and ideas for coping with the changes, restrictions and sensory challenges of the Covid -19 pandemic. These are all free to download from our Facebook group Autism Wellbeing Covid-19 Free Resources | Facebook. We have other free downloads on our website. We are a non-profit organisation and none of us are salaried, we do most of work without pay so do please donate if you find our work valuable and you have the means to. Autism Wellbeing CIC (goldengiving.com)

Our most recent project to be shared is a great piece of work supporting children with additional learning needs. It includes fun animations in both English and Welsh using a young autistic voice actor and lots of useful information and films for parents, teachers and students. (Supporting Children With Additional Learning Needs | Autism Wellbeing)

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