My Mum and Monotropism
Video version here, audio here.
My mum, Dinah Murray, spent over thirty years thinking about autism. She completed her PhD on language and interests in 1986, and when her friend Robyn lent her a copy of Uta Frith’s 'Autism: Explaining the Enigma' a few years later, she realised that her model of the mind as a system of interests suggested a much better explanation of this enigma than Uta Frith had managed — essentially, that in autistic people, a relatively small number of interests are aroused at a time, relatively intensely.
She had been supposed to write a book based on her PhD thesis – ‘Talking, Thinking, Wanting’ – and the first thing she did with her ideas about autism was to write a chapter for that, which she called ‘Holy Fools and Bullshit Artists’. She sent it round to various people she knew of in the autism world, in 1990-91, and started volunteering at a school for autistic kids. One thing led to another, and she ended up presenting Monotropism, her theory, at the 1992 Durham conference on autism, in a talk titled Attention Tunnelling and Autism.
She never did finish writing that book. Instead, autism became her main professional focus for the rest of her life. With her old friend, the mathematical philosopher Mike Lesser, she developed the theory of monotropism further, and started a small organisation, Autism and Computing. They promoted autistic people’s access to information technology, explaining why computers suited people who processed the world monotropically.
She made friends with many autistic people, as well as parents and professionals, and made a habit of connecting them up. She worked to ensure that autistic people were taken seriously and listened to by professionals and policy makers, at a time when this very rarely happened.
Through all of this, she was applying and refining her ideas about monotropism based on observations and conversations with the autistic people she worked with as a support worker, and her autistic friends — including Wenn Lawson, who had hit on many of the same ideas at around the same time.
At one point in the late 90s, after my brothers and I had all left home, she realised — thanks to her work as a support worker — that antipsychotics (neuroleptics, also known as “major tranquillisers”) were being dangerously over-prescribed to people with learning disabilities, largely to make them more passive, and she devoted several years to fighting this practice. She quit her day job, started an organisation called Autistic People Against Neuroleptic Abuse (APANA) together with Wenn, taught herself enough neuroscience to write authoritatively about why these drugs are so dangerous, wrote a report called “Potions, Pills and Human Rights” for the first issue of the journal Good Autism Practice, and more…
It was a classic example of the power of monotropism in action — her persistent hyperfocus allowing her to attain an expert level of knowledge in a subject she had no prior training in, while pursuing every avenue available to make sure that the right people were getting the message. As she wrote in ‘Liberating Potential’ in 2017, “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.”
In 2005, Dinah, Wenn and Mike together published Attention, Monotropism and the Diagnostic Criteria for Autism in the journal Autism, which systematically demonstrated how their theory could explain all the defining characteristics of autism – and more. Given that none of the established theories of autism had ever convincingly achieved that, this paper should perhaps have made more of a splash than it did!
The autism establishment is a funny thing, though, and here were three outsiders thinking they’d got it all worked out — even though Mike was almost completely unschooled, Dinah’s PhD was in psycholinguistics, and Wenn’s — on monotropism — wouldn’t be finished until 2009. All three were autistic, though Dinah had only cautiously start to refer to autistic people as ‘we’ by then.
The paper did garner some attention, as did Dinah and Wenn’s lectures, both together and separately. Autistic people, and those who live and work with us, often felt a huge sense of relief and validation when they heard about monotropism, but it was only in the last few years of Dinah’s life that she got to see her papers receive more than a trickle of citations. I think it helped that I got Me and Monotropism: a Unified Theory of Autism published in The Psychologist magazine in 2018, but it was partly just that the international autistic community had matured to the point where ideas could easily spread and receive critical attention.
By the time she died of cancer in 2021, she could see that her work had really paid off, at last: new research was being published regularly referring to monotropism, and it had become widely known among autistic people – at least, those who participated actively in the autistic communities she had done so much to help make possible, in the early days.
I started building monotropism.org in May 2022, partly because I wanted to make sure that my mother’s work had a secure home, and partly because I wanted to make sure that there was one central place to direct people to, to learn about Monotropism, its applications and history, and to keep up to date with developments.
I started her archive there by copying across her work from her site, Productive Irritant, and digging up papers that had been lost to the internet when the old Autism & Computing site went down. Over the last few months, I’ve supplemented that with more that I was able to find online, photocopies from a friend, and most recently, her first two conference papers on Monotropism, from 1992 and 1993, which I found in the National Library of Scotland.
It feels like the archive of her work is finally somewhere close to complete — at least with respect to monotropism. The only big omission that I know of is that 1990 chapter, from before Monotropism had a name, and I have no idea if that’s ever likely to turn up now…
