It is with great sadness that NeuroClastic reports the death of Dr. Dinah Murray. Dr. Murray passed away on Wednesday, July 7, 2021, from pancreatic cancer.

Dinah Murray was so much more than a “productive irritant,” as can be seen on her website of the same name and in the warm recollections and stories from those who knew her. Like the grit in the oyster shell that produces the pearl, Murray’s life and work was a treasure of immeasurable value. 

Dr. Murray was a leading voice in the world of autistic academics. She was responsible for the theory of monotropism or, as Dinah would herself refer to it, an Interest-Based Account of Autism or Interest Theory. Monotropism posits that the autistic mind hyper-focuses on specific interests and activities and, due to this, anything that exists outside of those interests tends to be minimized or ignored.

Interest Theory has poignant implications for related theories on language development and social interaction amongst autistic people. Dr. Murray was one of the greats in the autistic zeitgeist; her work has made such a profound impact in the realm of advancing an understanding of autistic beingness.

While there have been a number of lukewarm and only partially effective theories propounded to explain autism over the decades, Dinah Murray, Wenn Lawson, and Mike Lesser put forward the truly innovative Theory of Monotropism that provides an explanation for the external “deficits” used to define autism in the DSM while also getting to the core of autism as experienced by autistic people. They spoke of attention as a finite resource. The tendency of autistic people to focus deeply upon one or a few areas of interest, while non-autistic attention can be spread more diffusely, generates both the intense joys and profound difficulties of autism.

Dr. Murray understood that the demand of having to pay attention to so many things, simultaneously, is a nightmare. Autistic people tend to focus intensely upon one thing at a time, and this might mean that they miss lots of superficial or extraneous information that gives context to so much of life (conversation, expectation, realization). When one comprehends that this is how autistic people operate and process the world, that understanding should make relating to them less “troublesome.”

Interest Theory straightaway explains how autistic communication and socialization may fail to match up with the neurotypical standards that become imposed upon autistic people– applied where they live– they may miss those unwritten rules, completely. It also explains what is pathologized as “restrictive repetitive behaviors (RRBs)”.

Autistic people engage with and understand our world via their interests. If they are “acceptable” interests, autistic people may be considered geniuses as they develop their passions. If those interests are not considered “acceptable,” then they are negatively pathologized as “obsessions.” When autistic people are absorbed in their interests, alone or in the company of others who share them, that is when they feel autistically, magically alive.

While other theories have touched upon autistic focus with a limited understanding that frames autism as a series of deficits, Dr. Murray’s Theory of Monotropism explains the experience of “autistic-ness” common to all autistic people. Her unifying theory has advanced comprehension of what autism is and offers a dignified perspective of autistic people far removed from deficit model of the autistic neurotype. In this, Dr. Dinah Murray pioneered a humanistic view of autism and advanced the cause of human and civil rights of a disenfranchised population.

Beyond even that, Dinah Murray offered her life, her very existence, as an example of what it meant to be truly, fully, unapologetically, radically, and gracefully alive. A “productive irritant,” indeed.

Her legacy is one to be celebrated.

Musings From Friends and Family

Fergus Murray

My mum Dinah started thinking about the mind as an interest system when I was a kid, with her Ph.D. on Language and Interests submitted when I was eight. A few years later she read about autism in Uta Frith’s book Explaining the Enigma, and I remember her excitement as she started to realise her model could easily be modified to explain rather more of this enigma than Frith or anybody seemed to have managed up to then.

So I grew up knowing about monotropism, and we have discussed it extensively since. I always knew that my way of thinking tended that way, but it took years for either of us to fully identify with it. In many ways, our autism doesn’t fit the stereotypical image of it — we are not introverted, nor socially unskilled, and our interests are wide-ranging (if sometimes all-consuming). We fit the profile sometimes misleadingly labeled “female autism” rather well, but this was even less understood then than it is now. It took spending a lot of time around autistic people to recognise that our easy understanding of their way of thinking came not just thanks to the valuable lens of monotropism, but also because it often resembled our own.

She credits much of her success in autism politics to the edict to “love your neighbour”. She had a strong belief in understanding where your ‘opponents’ are coming from and understanding the challenges that they, themselves, face.

~Fergus Murray

If you knew my mum, I don’t have to tell you that she was kind, passionate, and sometimes fierce: she was appalled by injustice and unfairness, and she was outspoken in challenging it. She was indignant on behalf of people who are talked over and spent much of her life working to help them be heard.

While she was generally quite able to make sure she was listened to herself, she obviously felt an affinity for people who are misunderstood and ignored. She wrote in 2004, ‘On those rare occasions when her meanings are taken amiss or not understood and an assumed smooth encounter is engulfed by mismatched expectations and negative assumptions, she can become a person incapable of communicating, of socialising, of thinking — and be strongly drawn never to expose herself to such risk again.’

That’s from One That Got Away, the book chapter where she first publicly wrote about thinking of herself as being ‘somewhere on the autistic spectrum’ — although at that time (a couple of years before I sought out a formal assessment for autism myself) she said ‘there are reasons why I do not entirely feel I deserve the accolade’, in later years she came to identify less ambiguously as autistic, as did I.

There’s a long section in that chapter titled ‘Being rather weird’, and Dinah’s acceptance of her own and other people’s weirdness was a defining feature of both her professional and personal life. She was always friends with a wide range of fascinatingly weird people, and when her kids turned out to be fairly odd too, in our different ways, she made sure we didn’t see that as a problem, even if other people sometimes might. I owe to her my ability to be proudly weird, and I shudder to think where I would be without it: probably no less weird, just much less comfortable with it.

I think she helped a lot of people to accept themselves, and I know she helped a lot of people to understand themselves better. Her framework for understanding autism, and her insights into thinking about neurodiversity more broadly, will make a difference for decades to come: she died feeling she had achieved her life’s work, a firm foundation for people to work from, her ideas increasingly accepted and recognised.

We talked a lot in her last weeks about the lives she’d touched, the ways that people appreciated her, and how much she loved them back. She had a way of connecting people who needed to be connected. I read to her from the book ‘Humankind’, about the weight of evidence that people, by and large, are fundamentally decent; Leo read to her from ‘Entangled Life’, about mushrooms, mycelia, and the interconnectedness of all living things. Both books felt like they were filling in details of things she already deeply felt, understood, and embodied.

~Fergus Murray

Joan McDonald

A gift of Dinah’s was to bring people together. She had a remarkable sense for finding people from all walks of life and from all experiences of autism and bringing us together; her home in London acting as a kind of salon for sharing ideas. Thus world-renowned autistic theorists and lecturers could meet and mingle with non-speaking, non-academically-qualified autistic people in the comfort of Dinah’s welcoming home. This allowed for a rich sharing of diverse autistic experiences, and the development of real, enduring friendships. It ensured that when the NAT got off the ground, people with all kinds of experiences of the UK’s autism systems ~ assessment, mental health, day service, home assistance, institutionalization ~ could be involved and have their voices heard. Without Dinah, it is doubtful that such an array of people could or would ever meet each other.

Dinah generously invited me to stay when I was traveling to the UK for Autscape. She provided me with a safe haven to travel together or unwind on return. Her house was so busy, one could end up sleeping anywhere and we somehow all jumbled together between cooking and takeaways to ensure everyone was well fed. Frankie, her dog, loved the company and I got many calming walks in the nearby parks. Dinah also visited me in the west of Ireland and even sang in our local ballad session.

It’s a tribute to Dinah that, having moved to Fife in Scotland just before the pandemic, she rapidly made so many good friends in her housing complex, adding to the steady stream of friends arriving to visit from the south once news of Dinah’s illness emerged. Frankie had new dog walkers and was adopted by one lady while Dinah was ill so that he could visit her while getting used to his new home.

On my last visit to Dinah, as she was coming to the end of her life, we discussed her beliefs in an afterlife. Dinah did not think she would continue in any form but that her ideas and her love would continue through those she influenced. Let us hope we can live up to that wish.

~Joan McDonald

Ann Memmott

Whilst Dinah was noted for her groundbreaking work in the field of autism, she will also be remembered as a loving Mother and as a cherished friend.  Always kind and supportive of others, Dinah spent time and thought in making sure that people connected with one another, and often had words of deep wisdom to share with those who shared her life in small ways.  As a mentor, she will be much missed by so many.

~Ann Memmott

Panda Mery

In addition to raising her family, her contributions to linguistic and autism research, and her many friendships, Dinah also had many passions, including her dog Frankie and cat Zorro, mushrooms, lichen, and photography. Several photographs taken by Dinah illustrate the video Something About Us, in which she curated the voices of Autists speaking about their lived experiences. Dinah was regularly watching The Countdown game show and was a strong competitor when it was recreated at the Autscape conference. 

Dinah was keen to leave a better world for future generations. She presented, with Janine Booth, on Marxism and Autism, followed all the news about Universal Basic Income, and participated in climate actions. Dinah was a fervent proponent of technology, working on proposals to develop software to have on tablets that could be distributed to Autists in care so that they can communicate outside and raise any issue affecting their care. Dinah often wrote letters to compliment or complain so that organizations could improve. Of course, Dinah was also very supportive of Autistic artists and Autistic Pride events; she regularly attended the Hyde Park Autistic Pride picnics and proudly sported a homemade “weird pride” badge as well as her “productive irritant” one.

Following Brexit, Dinah decided to move from London, where she had been living in her family home, to the Scottish coast. In March 2020, days before the lockdown started, she took the train with a bag and her dog Frankie and moved by Dalgety Bay. They both immediately loved it.

Dinah had a knack to lose herself and her possessions. When going to a conference, she would often call or text to say “I’m lost” which made giving directions difficult. The sharing location features of her iPhone helped with this. However, Dinah almost always arrived half an hour before any meeting, even after getting lost. No matter how many pockets in her jacket or bag, things had a tendency to never be where they might have been, often resulting in a systematic exploration of all the places where an object might have disappeared.

~Panda Mery

Damian Milton

I have worked a lot with Dinah in the time we have known each other and I would consider her one of my closest friends. Regarding the “productive irritant” story: we were called this by Martin Knapp at a launch event at the House of Lords for The Autism Dividend report, which came out of the National Autism Project. NAP invited Dinah onto its steering group. She then requested that I be her support for attending and we provided input for one another, throughout. We set up an autistic advisory group that fed into the steering group through us which, over the course of the project, became more influential. This group, in turn, became the foundation of the National Autistic Taskforce which she acquired funding for from Dame Steve Shirley. Simply put, NAT would not exist without Dinah.

Over the years, we worked together on AutreachIT (critiquing the UK ABA competency framework), the ‘Theorising Autism Project’ (the forerunner of PARC). Dinah has been active in PARC since that was set up. We also collaborated on the Ask Autism project with the NAS (which led to online training and a couple of autistic-led conferences), the National Autism Project, and NAT. I’d been working with Dinah for the last year or so on an academic paper (soon to be submitted). This is a phenomenological piece generated between me, Dinah, Jo Bervoets, and Jonathan Green. The collaboration came about after a conversation at the conference that was held at the Uni of Kent a couple of years ago. It draws upon Monotropism Theory and hopefully, will lead to more such work in the future. Strange that we never got around to writing a paper together until this one, but I am very glad to have done so. Dinah also submitted a chapter to a collection Sara Ryan and I are editing: The Handbook of Critical Autism Studies.

~Damian Milton

Richard Woods

I am hugely grateful to have had Dinah’s opinion and thoughts on my own logical development of Dinah’s theory, in explaining anxiety in autistic persons and refining into a developmental model. I was fortunate enough to present at the 2018 external Monotropism stream run by PARC at the Scottish Autism conference. I and others attended a seminar with Karl Friston, where Dinah, Jonathan Green and Damian Milton both presented in March 2019. Dinah became interested in the parallels between Predictive Coding and her theory. I am going to hugely miss Dinah.

~Richard Woods

Fiona Clarke

I have been an admirer of Dinah’s work over the years and what has been striking is the extent to which everything (and everyone) I come across has in some way been positively impacted by her personally or her work. From the incredibly helpful Monotropism theory, STOMP research and the National Autistic Taskforce, to fellow activists and advocates, who all knew and highly respected Dinah.

Dinah and I shared a passion to improve the human rights of more severely disabled autistic people, including communication rights and concerns over behaviourism in care settings. I am fortunate and honoured to have gotten to know Dinah, and recall when Dinah was the first person I met after lock down on my first trip to Dalgety Bay, when we picnicked in the drizzle, clamboured steadily over slippery rocks and had one eye on the fantastic view towards Edinburgh and the other on spotting fungi.

Although sadly it was to be short lived, I thought how lucky Scotland was to have Dinah, whose unique and intelligent wit, wisdom and impactful advice was always present. Dinah was someone who brought people together, and she did this up until her very last days, as her friends and family made new connections through visits to Dalgety Bay and with many seeking to progress her work, Dinah will continue to be a catalyst for change.

~Fiona Clarke

Kabie Brook

I met Dinah at Autscape in 2006. She has had a huge impact on my life and has been a true inspiration to me and many others within the Autistic Community through her academic work and as a warm-hearted, generous person, always willing to open her home and her heart to us. I am honoured to have been her friend and grateful that we were able to connect. She has enriched my life and so many others.

~Kabie Brook

Janine Booth

Since realising I was part of the autism world some fifteen years ago, I have met many inspiring, clever, and kind autistic people – but none quite as inspiring, clever, and kind as Dinah Murray. A warm and cultured friend, Dinah would insist on serious, political conversations taking place over a delicious lunch or a pleasant walk. We presented alongside each other on several occasions, on capitalism, socialism, Marxism, autism, and neurodiversity. The general pattern was that I would give a flashy slideshow, then Dinah would follow up with some softly-spoken, brilliant insights. She knew very well that academic efforts alone would not liberate autistic people, so was active in campaigns and political initiatives to fight injustice and improve autistic lives, including attending the launch of Neurodivergent Labour in 2019 and support its work since then. Dinah was thoroughly non-judgemental and always encouraging. When the history of how we won autistic liberation is written, Dr. Dinah Murray’s name will feature prominently.

~Janine Booth

Career

Dr. Dinah Murray was an independent researcher and campaigner, a former tutor for Birmingham University’s distance learning courses on autism (adults), and a former support worker for people with varied learning disabilities, including autism.

Dinah earned her B.A. in Anthropology and Linguistics, her MA in Philosophy, and her Ph.D. in Linguistics (Language and Interests).

She was a Strategy Board Member of the National Autism Project and served on the Board of Directors for the National Autistic Taskforce in the U.K.

Dinah co-founded Autism and Computing in the mid-90s, to draw attention to the potential of computers to promote social relating and to reveal the creative and communicative competencies in autistic people of all ages.  She and Mike Lesser produced a video, Working with Ferenc, in 1995, about a young, non-speaking autistic artist, Ferenc Virag, who showed extraordinary animation abilities on the computer. Thanks to an Arts Council grant they were able to give away 100 copies of that documentary video.

For several years, Dinah worked hands-on with autistic adults from every range of ability. This experience underlay Autism and Computing‘s effective campaign to gain government recognition, in the U.K., of the fundamental right to assistive technology for people with communication disabilities, via the passage of The Mental Capacity Act. 

In 1998, Dinah Murray founded APANA (Autistic People Against Neuroleptic Abuse), an autistic-led campaign in the UK to stop the overuse of drugs being given to people with intellectual disabilities. 

 In 1999, Dinah presented at the world’s first Positive Autism conference, as well as at Autism Europe’s conference in Glasgow.

Dinah was substantially involved in the autistic-led open access journal, Autonomy, the Critical Journal of Interdisciplinary Autism Studies, being both an editor and reviewer for the journal. Dinah has one article, published in Autonomy, that focuses on the friendship between Dinah and the non-speaking autistic artist Ferenc Virag, developed through building a relationship upon common interests and mutual trust.

She worked on a partnership app development project with ARGH and also collaborated upon the development of the NownThen picture-sharing android app with autistic app engineer, James Bayliss. Dinah was passionate about improving the rights of people with profound communication difficulties, including those who may be in long-term residential care. She partnered with developers towards achieving the goal of creating technology known as AutNav that would enable such individuals to communicate/have access to interests, assist them in letting their preferences be known, facilitate contact with family and friends whenever they chose, give or withdraw consent, and so much more.

In 2006, Dinah partnered with Ann Aspinall of the Through Assistive Technology to Employment project, to co-author Getting IT: Using Information Technology To Empower People With Communication Difficulties.

 She also wrote the module on autistic adults for the WebAutism course at Birmingham University.  She was a tutor on both courses from the mid-90s, stopping only in 2013.

Her work had been published in journals, in books, and online. Dr. Murray presented at numerous conferences (worldwide), including several years of Autscape, an annual conference-cum-retreat run by and for autistic people. She contributed to Autism and Intellectual Disability in Adults Volume 1: Author(s): Ed Milton, D and Martin Dr N pub. Pavilion 2016. She was featured in Dr. Stephen Kapp’s anthology, Autistic Community and the Neurodiversity Movement. On NeuroClastic, Dr. Murray published Reservations about Positive Behavior Support, or PBS.

Dinah was delighted when Scottish Autism confirmed funding for the development of AutNav just a few weeks before she died.

Her autism-related research interests included: medication and its impact on quality of life, information technology for people who don’t use speech, the ethics of autism research, and the nature of the human being (with a particular focus on interests). Dr. Murray had been informally assessed as being on the autism spectrum and, if growing up today, would certainly have attracted a formal autism diagnosis. In any event, we in the autism community recognize her neurodivergence and are proud to consider her one of “our own.”

Family and Personal Life

Dr. Dinah Murray was born Dinah Karen Crawshay Greenwood, on May 27, 1946. She was the daughter of Arthur William James Greenwood, Baron Greenwood of Rossendale, and Gillian Crawshay-Williams. Gillian (known as Jill) married Arthur (known as Tony) Greenwood in 1940; he worked in RAF intelligence, his father was in Churchill’s War Cabinet. Jill worked for the Ministry of Trade during WW2 and was both author and illustrator of the best-selling booklet, “Make Do and Mend.” She is also credited with suggesting the twist on the old “Make and Mend” phrase. They had two daughters, Susanna and Dinah.

Like Tony, Jill was politically active and a co-founder of the Campaign for Nuclear Disarmament; later she became a fundraiser for what was then known as the National Council for Civil Liberties. Their daughters grew up steeped in politics and a sense of duty towards the Common Good. Susanna went on to be a founder of the National Foster Care Association and a prolific creator in a range of arts and crafts. Tony was the President of the Oxford Union and was known as a “man of the left.” He worked in intelligence during WW2 and became an MP in a by-election in 1946. 

Throughout the 50s and 60s, Tony was distinguished for campaigning upon the issues of pollution, gay rights, and animal rights, and for campaigning against nuclear weapons and apartheid. He was President of both the League Against Cruel Sports and The Pure Rivers Board. He hated his time as a Cabinet Minister because he felt trapped and ineffective in that role. Clearly, Dinah came from a legacy of social consciousness, championing the underdog, and active participation in bettering the world. Is it any wonder that her life would become so completely given over to improving the world as Neurodivergent people experience it?

In 1970, Dinah married David Murray. They had three children; Bruno, Leo, and Fergus. Dinah would become a foster parent to Eddie O’Neill, who remains closely connected with the Murray family.

Dinah is survived by her children, Bruno, Fergus and Leo; their foster brother, Eddie; and by Dinah’s sister, Susanna, as well as all of their families; nieces, nephews, and grandchildren.

She loved to dance and she experienced immense joy singing in groups, be it with friends around a campfire or in a church. While not conventionally religious, Dinah was deeply spiritual; her soul’s expression finding itself through a profound love of the natural world and in her empathic connection to humanity.

Her interest in and dedication to the natural world led her to become an amateur mycologist and a keenly skilled forager.

Dinah’s ongoing friendship with the artist, Ferenc Virag, inspired her constantly. She delighted in his creative mind and the myriad ways he would find to express his creative impetus.

In March of 2020, Dinah and her beloved dog, Frankie, moved to Dalgety Bay, in Fife Scotland. It is there that she spent her final months and days, surrounded by the natural beauty she so loved.

It is a testament to Dinah’s tremendous heart and fullness of being that so many of her friends and colleagues found their lives enriched and enlarged by her devotional will, which launched many of them into careers in advocacy, education, the arts, and research. The estate of Dr. Dinah Murray is one defined by the empowerment of all whom she touched with her brilliant light.

Quotes

“There is potential for extraordinary – atypical – levels of productiveness, resourcefulness, and creativity in many autistic people when they are pursuing concerns close to their heart.” ~ from The Future I’d Like To See

“Homily: Ask ‘Is that so?’ of every claim you make
Prefer the grimmest truth to glittering fake

If you imagine you’re the centre of the show,
Forget it! No-one else thinks so.

Control the urge to say and see and do
Exclusively what pleases you.

Don’t laud the beauty of a good intent,
Unless it’s turned to deeds by effort spent.

Don’t say, Oh Yes it must be done, and mop your brow.
If something’s to be done, then do it now

And now you’ve made these sentiments so neat,
Why not go off and have a little treat?” ~ from Advice To Younger Self

Legacy

The National Autistic Taskforce (NAT), upon forming in 2018, offered up a remit to address justice and autonomy for autistic people, especially those who don’t use speech effectively to meet their needs. The needs of non-speakers were exceptionally important to Dinah Murray. Championing the rights of non-speaking Autistics, who are often among the most intensely oppressed and abused portion of the Autistic population, has been and remains a core mission of the NAT.

In April 2019, The NAT published the excellent Independent Guide to Quality Care for Autistic People, the first independent and autistic-authored guide which articulated what good quality care and support looks like for autistic people of all ages and right across the autistic spectrums, regardless of the level of their support needs. Without Dinah Murray, this guide ~ built upon the scaffolding of real autistic experiences and testimony as to the real self-declared needs of autistics ~ would not have manifested. This guide will continue to change and improve the lives of autistic people for generations to come.

The matter of climate change was important to Dr. Dinah Murray, whose generosity and conscience was always evident. As Larry Arnold noted: “I have kept this under my hat for some time but I think after Dinah has passed, it could be known. Some people may be aware that for a couple of years or more, I have been occupying a patch of land and planting trees there. This has been largely funded by Dinah in order to [carbon] offset some of her air travel in the past. I call it the Arnold Greenwood project, Greenwood being, appropriately, Dinah’s maiden surname and something she suggested.”

“One of the things that [was] a great comfort for Dinah [was] seeing that her work on autism is having a huge and growing influence – seeds that she first planted decades ago are really bearing fruit at last. Her theory of autism, Monotropism, developed with Wenn Lawson and Mike Lesser, is now having papers published about it every few days – researchers are building on their insights to make sense of autistic experience, parents and professionals are learning from them how to help autistic people to thrive.” ~ Fergus Murray. Read more about Dinah’s work on this thread from Fergus’s twitter feed, Oolong.

Many researchers are presently building upon Dr. Murray’s theories. Dr. Becky Wood, for one, found that Monotropism Theory offered a valuable lens for understanding and working with the intense interests of autistic students and that respecting these passions could do a tremendous amount to advance their educational inclusion. She has published her findings in a report entitled Autistic children and intense interests: the key to their educational inclusion? which has sparked a vibrant conversation amongst scientists, medical professionals, educators, parents, and autistic advocates and which shall, no doubt, impact society in ways as yet unknown.

Dr. Dinah Murray’s influence continues to radiate.

Links

Normal and Otherwise, Dinah Murray, April 1997. In book: Living and Learning with Autism: Perspectives from the Individual, the Family and the Professional (pp.3-14). Publisher: The Autism Research Unit. Full text available to read online or download as a PDF.

Dr. Murray contributed to the Scottish Autism Right Click program for women and girls; video recordings of her interviews are available through the program. The programs are free. Registration is required.

Dr. Murray was a convenor/advisor for The Participatory Autism Research Collective (PARC).

Art… A Positive Necessity Of Life, Dr. Dinah Murray, with Ferenc Virag, October 2013. An excerpt from An Autistic Friendship, 1995.

From Protest to Taskforce, Dinah Murray, from Autistic Community and the Neurodiversity Movement.

Me and Monotropism: A Unified Theory of Autism, Fergus Murray, August, 2019.

Reservations About Positive Behavior Support, or PBS, Dr. Dinah Murray, NeuroClastic, March 2, 2020.

Dinah and Fergus Murray speak about the Theory of Monotropism on the Different Minds Podcast, April 15, 2021.

My ‘Rather Weird’ Mum: Dr. Dinah Murray (1946-2021): A Tribute by Fergus Murray, published on Fergus’s blog, Oolong, on Medium, August 14, 2021.

Editor’s note: This tribute to Dr. Murray was put together by friends and family and curated by Adam Lodestone. The featured image from this article is from Dr. Murray’s personal photography collection. In coming days, additional photos and memoirs from friends will be added to this celebration of the life of Dr. Dinah Murray.