Dr Luke Beardon is Senior Lecturer in Autism at The Autism Centre, Sheffield Hallam University, UK, and co-Editor – with Dean Worton – of the new book,
Aspies on Mental Health: Speaking for Ourselves. Here, he answers some questions about the book.
Tell us a little about you and your background working with Autism.
I came into ‘the field’ almost accidentally, when I was working as a support worker in adult residential services. The NAS were setting up a service locally and I happened to apply for a post there – luckily I got the job, and fell in love with it from day one. In hindsight it turns out that I have had autism in my life way before then – but that’s another story…
Can you talk a little bit about the Adults Speak Out about Asperger Syndrome series, and how this new book fits into it?
A few years ago a good friend of mine, Gen (Genevieve Edmonds), and I were chatting about the lack of books available that allowed people with Asperger Syndrome (AS) to express their views. We both felt that autobiographical accounts were great – but that they were limited, by definition, by being a single account. Additionally, autobiographical accounts might only touch on certain subjects that people may want to read about in depth. We decided that a good idea would be to set up a series of themed texts, and invite a number of people to contribute. Our idea was that this would provide both a focus in terms of subject area, as well as a breadth in terms of the number of people contributing. We both felt very strongly that we wanted to provide people with AS who may not have the time or inclination to publish whole autobiographical accounts the platform to have their say about specific issues. This had the added benefit of showing the audience that no two experiences are the same, and that no person with AS should be viewed in the same way as the next – something that is so important in the field of autism. We came up with five themes, of which mental health is the third. The first was social relationships and the second was employment.
Dean Worton helped us contact people with AS for the first two and I was privileged to co-edit this book with him after Gen so tragically died.
Tell us about the process of bringing these personal stories together.
Basically we invited contributions from a variety of different sources, including an open invitation on the internet as well as asking people we knew, or knew of. Our authorship was, in a sense, somewhat limited for this book because we needed people who had had experience of mental ill health but who were willing and able enough to write about their experiences. I know there are far too many people who – as a direct result of their mental ill health – are unable to write about their experiences.
I was humbled by the contributions; the openness, willingness, and selflessness of the accounts are stunning. The stark reality of the experiences of the contributors is extremely powerful, and I can only hope that professionals reading the book really do take to heart what people are saying, and the devastating effect mental health can have on people with AS. My overriding hope is that the book will make a difference, that it will help professionals understand AS better, and reduce the numbers of people going through such detrimental experiences.
What is the most common cause of mental ill health for people with AS? What can be done to prevent or mitigate this outcome?
I believe that the greatest contributing factors to mental ill health for people with AS is a lack of understanding of the needs of the individual alongside a lack of willingness, or inability, to adjust the environment to suit those individual needs. If the world changed overnight, and all of a sudden the general public understood AS and adapted their roles to suit individuals, then I am convinced that mental health problems for people with AS would pretty much disappear. Of course this is unlikely to ever happen – but gradually, with a greater understanding, lives of those with AS should improve. I would like to think that any professional who reads this will be moved to change their practice to better suit the individual and, thus, reduce the potential for mental health issues.
What are some implications of the book for education and for service provision?
In a sense the implications range from nothing through to everything. Possibly nothing will happen at all; possibly the book will have such an impact that legislation will be altered, services dramatically altered, and the education system adapted to suit the individual requirements of the AS population. In all probability something between the two will occur, and with any luck the trend will lean towards the latter, and not the former.
Luke Beardon is part of an online group called Autistic Intelligence that is committed to broadening the world’s understanding of autism. They will host two conferences this year with a range of excellent speakers, including Tony Attwood, Wendy Lawson, and
Olga Bogdashina. For more information, visit www.autisticintelligence.org.
Copyright © Jessica Kingsley Publishers 2011.