Monday 16 June 2014

RIP Lorna Wing

The autism world has experience a huge loss with the passing of Lorna Wing, aged 85.  Within the field of autism, Dr Wing is recognised as being the first to coin the term 'Asperger's Syndrome'. More than simply just coining a term that is familiar to readers of this blog and followers of Autism Works, many to whom it applies to either as a person with Asperger's Syndrome or a parent/carer of a person with Asperger's syndrome, Dr Wing's pioneering work broke the mould as to how autism is understood, making a huge difference to the lives of many, including my own.

Dr Lorna Wing, 1928-2014
A psychiatrist and a parent of a daughter with severe autism, Dr Wing was founders of the National Autistic Society. Dr Wing became involved with autism as both a professional in an age when understanding of autism in the English-speaking world was largely based on Leo Kanner's original paper of 1944 that described severe autism, which Dr Wing's daughter, Susie, in Wing's own words 'fitted to a T'. With understanding of autism then being limited, it was assumed, including by many of the professionals of the day, that autism was caused by 'cold parenting' or parental neglect. On the contrary though, Dr Wing's compassionate nature as both a parent and in supporting other parents of children and young people with autism was one of the factors in this myth being broken.

Observing as a psychiatrist that there were far many more children and young people who displayed characteristics of autism but didn't fit Kanner's description. Rigorous research brought Dr Wing to Hans Asperger's original paper, then only available in German. With the help of a translation provided by her husband, Wing's 1981 paper in which she described the term Asperger's Syndrome not only broke the mould within the field of autism, but would make a huge difference of the lives of many, with the help that a diagnosis of Asperger's Syndrome can bring in terms of support (if it can be accessed) as well as the diagnosis enabling one to understand themselves.

Those who have heard me give a talk or workshop will likely be familiar with how I felt my Asperger's Syndrome diagnosis gave me, for the first time in my life a chance to not only understand myself in a much clearer way, but also I felt enabled me to make a personal assessment of myself as to where I could see where my strengths and weaknesses in relation to how I am affected by Asperger's Syndrome. Understanding your strengths and weaknesses can help with key decisions one makes in their life including with education and careers. But not only did my diagnosis enable this, but it also opened me up to a whole new world, which has seen me met many people whom I would not have otherwise met.

'Team Popcorn' at Kilimanjaro
Without Dr Wing's work, autism and certainly Asperger's Syndrome would be so much more poorly understood than it currently is. However, Dr Wing would likely have been aware that remains much work to be done in understanding autism, as NAS Chief Executive Mark Lever said at this year's NAS Professionals Conference, particularly how autism is portrayed in the media, often as 'suffering'. Not only do myself and many other people whom I have met with Asperger's Syndrome not see or feel that we 'suffer' from Asperger's Syndrome, but rather I see that diagnosis as an enabling factor in my life in that it has helped me to understand myself and be able to open up to theirs around me much more, and in this way I feel though I am able to understand how it affects others around me, including family and friends. Together with mindfulness practice, I have found that having an awareness of how my condition affects others around me has enabled me to open up more socially. like many other people with Asperger's Syndrome, I am often almost like an 'actor', in that were most of my non-verbal social skills have originated from is through observation rather than intuition.

Team building at Monkwearmouth
Dr Wing's compassionate nature obviously enabled her to give the best of herself to those close to her. As well as a compassionate nature towards others, a compassionate nature towards oneself can also help a person with Asperger's Syndrome in being able to relate to others around them, just simply by being able to recognise different personal issues and concerns and being able to relate them to their own. Holding different thoughts and feelings in awareness through mindfulness can help develop self-compassion, which also helps one to understand themselves, and once we understand ourselves, it gradually helps us to understand how we come across and affect others around us. For me as a person with Asperger's Syndrome, this kind of understanding  I feel has helped me with social interaction and understanding, to the extent that I am able to enjoy the social aspect of taking part in activities as much as the activity itself, including hiking in a group of people, as experienced during last year's Kilimanjaro trek and the team-building exercise at the REACH event at Monkwearmouth.

With Tara Kimberley Torme, a gifted poet with Asperger's Syndrome
Without Dr Wing's work, I would have had many of the adventures I have had and met the people that I have met, including some very dedicated parents of people with autism, contrary to the stigma that Wing and many others in her parent group faced that autism was a result of 'cold parenting'. For that, I owe her and her long-time research partner Judith Gould so much. My very best wishes go to Dr Wing's family and close friends.

One of the many people whom my diagnosis led me to meet is Tara Kimberley Torme, whose poem provides a good description of Asperger's Syndrome. Click here to read it.