Abstract
So much has changed in our understanding of how autism impacts our lives. We still have a long way to go, however, until it becomes the norm that the principle of ‘nothing about me without me’ is upheld throughout autism research and autism practice. Autistic researchers and practitioners will play a central role in delivering this vision. Currently, the autistic community is mourning the passing of one such person, a true pioneer, Dr. Dinah Murray. It is fitting that we pay a tribute to her achievements and contributions, for these have enriched our lives and over-laid the autism landscape with understanding, acceptance, action and advocacy.
As I write, another Autism Awareness Month has passed highlighting the fact that so much has changed in our understanding of how autism impacts our lives. We still have a long way to go, however, until it becomes the norm that the principle of ‘nothing about me without me’ is upheld throughout autism research and autism practice. Autistic researchers and practitioners will play a central role in delivering this vision.
Currently, the autistic community is mourning the passing of one such person, a true pioneer, Dr. Dinah Murray. It is fitting that we pay a tribute to her achievements and contributions, for these have enriched our lives and overlaid the autism landscape with understanding, acceptance, action and advocacy.
I remember a conversation with Dinah, my dearest friend and very close colleague of more than 24 years, concerning certain publications about autism, identity, empathy and being human. It made us angry to think some researchers had once considered autistics to be less than human! However, today such thinking would be shocking. We have come a long way in terms of our thinking about autistics and their ability to connect to empathy. It is now, mostly, the norm to consider autism as being part of human neurodiversity.
Dinah’s work played a key role in that transition, though it has not always been recognised by the academic mainstream. When she started out in research and practice, it was usual to think that autistics lack a theory of mind (Baron-Cohen et al., 1985). Now, we can instead consider the theory of being ‘monotropic’ – connecting to self and to other, via shared interest (D. Murray et al., 2005) – as a way to understand autism. Dinah and I spent many long hours around her kitchen table during wintry evenings talking over the different tributaries of a single focussed attention system or a dynamic interest system of mind.
Thinking back, it amazes me how our paths first crossed. Dinah happened to be at a conference, in 1998, where I was presenting on ‘Life and Learning in Autism: Single Focused Attention’. We were both equally excited to hear of the other’s research. It turns out while I had been researching and teaching such concepts in Australia, Dinah had been developing the same thinking in England. That first meeting was to be the beginning of our working partnership and a lifelong friendship.
‘Language and Interests’ was the title of Dr. Dinah Murray’s PhD thesis in 1985, which was completed at University College London. In this work, Dinah argues for ways to understand thought and language. Over time, this led to a model of the mind as a dynamical system and the impact this has upon interest and, hence, upon language. A few years later, considering the role interests have in linking the minds of self and other was the prompt Dinah needed to apply her model to autism. Dinah had first-hand knowledge of autistic people because at that time she worked as a support person for autistic adults. She knew the current theories that tried to explain autism just didn’t cut it.
Dinah concluded that in the allistic (non-autistic) world, interests were many-facetted; individuals used their language to capture the attention of others and draw them into their own interests. That is, language was used to manipulate the interests of others. She then proposed that in autism, our brains were operating via attention tunnelling (D. K. Murray, 1992) and a lack of guile, which meant we were taken over by our own interest with no spare attention to join that of others (D. K. Murray, 1992, 1995, 1996). The resultant interest systems were named ‘polytropism’ (many channels) in allistics and ‘monotropism’ (single channels) in autistics (D. Murray et al., 2005).
As time went by, Dinah’s passion for supporting autistic individuals translated into what might practically assist them. She moved into the field of autism and technology, in her determination to explore ways to support autistics, especially those who did not use speech to communicate. Together, initially with Mike Lesser in the mid-90s, they set up a programme of support called ‘Autism & Computing’ which became a charity. It was while working with Mike Lesser and a young autistic artist, Ferenc Virag, that Dinah was able to reveal the capabilities of a mind tuned in to a specific interest. Ferenc worked with an animation programme 1 ; his monotropic focus enabling him to learn the programme faster than it would take typical students of animation at college. With funds from The National Lottery Arts Board and The Jerwood Foundation, a film was created showing Ferenc demonstrating behaviours said to be absent in autistics. While working with computers he showed other awareness, self-awareness, self-esteem, playfulness, exploration, forethought, relevant speech, creativity, turn-taking, sociability, desire to show, communication, concentration and co-operation.
Dinah never tired of researching and exploring how interest and attention were being played out in everyday lives of autistics. Time after time, I would come down to breakfast to find her absorbed in some research or other as she leant over her laptop, with a mug of cold coffee sitting solo on the kitchen table. Dinah Murray (2008) was also involved with myself and many others, in the making of the film Something About Us. Hundreds of DVD copies were given away to agencies, schools and families to help spread broader understanding of autism. Later, I joined Mike, Dinah and others, as AUTreach-IT was formed with the goal of making autistic lives better through technology.
Travelling extensively with Dinah, we saw so much overlap in our reactions that we had to conclude she was autistic herself, despite rejecting its medical framework. As such, she contributed to many other projects, lectures and books (D. Murray, 2005, 2008; D. Murray & Aspinall, 2006; D. Murray & Lawson, 2007). Dinah was also associated in a formal or informal capacity with a wide range of autistic-led organisations including the Participatory Autism Research Collective; Autangel; and the Autistic Advisory Group at University of Glasgow. Continuing her passion for harnessing the power of technology, she contributed to the Autism Dialogue, a game development project to highlight the great diversity of autism and the development of AutNav, a new web portal, hosting accessible forums for autistic people and people with learning disabilities. Throughout this time Dinah campaigned tirelessly for the creation of a Communication Support Worker role, to deliver access to communication supports including the Internet for people in supported accommodation or residential settings.
Since 1996, Dinah worked as a visiting Lecturer and went on to become a tutor with the Autism Masters course at Birmingham University. Many of her students have gone on to better the world of autism, through their support of autistic individuals, because of the insights Dinah personally shared with them. To hear some of these insights for yourself, you can listen to a recent interview with Dinah on the Different Minds podcast. 2
In 2000, Dinah came to Australia and we toured together for 6 weeks giving lectures and speaking at conferences around the country. The focus was on introducing various agencies, schools and support groups to an in-depth exploration of monotropism in autism and how the use of technology could enable access to communication and lower frustration in autism.
Dinah’s work has continued as she has fought so hard to join the dots as to what is at the heart of being autistic. The National Autism Project (NAP) funded by The Dame Stephanie Shirley Foundation and launched in 2015 again saw Dinah actively involved with getting autism better understood, both in publications and active support.
In recent years, Dinah was introduced to the predictive coding work of Karl Friston (2009). Friston recognised the similarities between his model of the brain, and the original equation from Mike Lesser (see Figure 1; Lesser & Murray, 1997) depicting mind as a dynamical interest system with different calibrations including monotropism. This opens up a possible future synthesis of ideas about minds, not just autism.
From Dinah’s original idea, the monotropism theory has grown over many years. It gives us a theoretical framework connecting interests, language and autism. It shows how technology can be deployed in a far-reaching array of academic and community efforts towards better understanding and support of autistics. I hope this letter draws attention to the breadth and depth of Dinah Murray’s transformational work and inspires more autism researchers to take up her legacy. As Dinah has said, ‘we live in interesting times’!
