Monotropism

Spring 2024 Round-Up, part 1: Research and Reading

A seasonal round-up from Helen Edgar (Autistic Realms) of research and reading material related to monotropism, with contributions from Fergus Murray.

It has been a really busy few months with new research, blogs, training and other monotropism related resources being produced and shared. The theory of monotropism is definitely causing some ripples across social media, various community groups and different education, health and care settings and is also been explored in the workplace with people considering how monotropism may affect employment for monotropic people.

Below, I have created a long list of recent publications that emerged between the last Seasonal Round-Up. I have aimed to be comprehensive, but it is likely that this list just reflects the tip of the iceberg of writing and resources that have crossed my path. It is an exciting time—lots of people are exploring and embracing monotropism!

I have so much to share that I have separated this seasonal roundup into two parts. In the future, we aim to make shorter, more regular updates!

Part one (this part): Monotropism research / blogs / books and resources
Part two: Monotropism videos / social media reels and podcasts

Dinah Murray papers

Several papers have been added to the Dinah Murray Archive (see Dinah Murray Archive Update) including the earliest descriptions of the theory of Monotropism in print:

“Maximising their control over what they learn whilst making sure new relevant information comes their way, would seem to be the most appealing pedagogic option for children with autism. Computers and specially designed computer programs should be uniquely fit for this purpose: controllable, predictable, potentially limitlessly informative, and capable of clear, easily understood expression if used that way.
[…]
What is more, computers could be used to network people with autism, both with each other and with non-autistic people, and so put them into a comfortable mode of communication. If this is right, then it should be a priority to make sure that as many people with autism as possible have access to computers, from as early an age as is feasible.”

Attention Tunnelling and Autism

Published Peer Reviewed Research

Bertilsdotter Rosqvist H., Hultman L., et Hallqvist J., Energy Management: Experiences of young autistic adults in work, leisure activities and relationshipsAlter [En ligne], 17-3 | 2023, mis en ligne le 20 Septembre 2023, consulté le 03 mars 2024. 

“This paper explores young autistic adults’ energy management in relation to work, leisure activities and social relationships. Energy management strategies serve as different ways for the young autistic adults to sustain their energy balance by trying to understand what increases or reduces their energy levels. In this way, energy can be understood as modes of autistic functionality where the informants’ individual energy levels, the contexts in which they find themselves and the strategies they use to influence and form central parts of their everyday lives”

Brown, S. N., Rabenstein, K., & Doherty, M. (2024). Autism and anaesthesia: a simple framework for everyday practice. BJA Education. https://doi.org/10.1016/j.bjae.2024.01.002

“A ‘monotropic’ cognitive style is a common autistic characteristic, and relates to the autistic tendency to have deep interest in single topic areas. It can be helpful to understand and accommodate this tendency during the perioperative period. A hyperfocused interest in particular (often niche) subjects may be used to develop rapport, or used as distraction where required. Monotropism can also manifest as perseveration or repeated questioning, and in such cases we advise responding with patient, repeated answers. This becomes easier once caregivers understand the underlying nature of the interaction. Accepting, understanding and accommodating the needs of an autistic patient will reduce distress, maximise cooperation and minimise the risk of what is often termed ‘challenging behaviour’ or autistic meltdown, leading to a smoother experience of perioperative care for the patient, family and staff.”

Caldwell-Harris, Catherine L. and Schwartz, Anna M. (2023) “Why Autistic Sociality is Different: Reduced Interest in Competing for Social Status,” Ought: The Journal of Autistic Culture: Vol. 5: Iss. 1, Article 12.

“We argue, consistent with Murray et al., (2005), that autistic people can pursue social goals, but informational goals are prioritized. Monotropic attentional focus is thus not ideal for extracting regularities and patterns in the social world. Learning social skills may thus take longer than would be the case for a neurotype that can integrate fuzzy, diffuse regularities. An example is Temple Grandin’s (2008) report that she learned eye contact in her forties.”

Featherstone, C. A., Sharpe, R., Axford, N., Asthana, S., & Husk, K. (2023). Autistic adults’ experiences of managing wellbeing and implications for social prescribing. Disability & Society, 1–29.

“This (research study) suggests that costly autism-specific services may not always be necessary to support and promote wellbeing”

To consider? It may be worth thinking about if we need more services that really understand monotropism and autistic lived experiences, otherwise we could risk diluting services down further and not meeting and invalidating specific autistic needs?

Fletcher‐Watson, S. (2023). What’s in a name? The costs and benefits of a formal autism diagnosis. Autism.

“Another benefit of this (autism) clinical validation is that the label ‘autistic’ can provide a welcome replacement for other labels which may have been attached to people over their lives: shy, obsessive, rude, weird – though note this latter is being joyfully reclaimed in the form of Weird Pride (Ferrous, 2021).”

Gillespie‐Smith, K., Mair, A., Alabtullatif, A., Pain, H., & McConachie, D. (2024). A Spectrum of Understanding: A Qualitative Exploration of Autistic Adults’ Understandings and Perceptions of Friendship(s). Autism in Adulthood.

“A Spectrum of Understanding: A Qualitative Exploration of Autistic Adults’ Understandings and Perceptions of Friendship(s). The three main themes are: (1) Identity with Others; (2) Sharing Value; and (3) Shared Presence….Issues relating to monotropism were raised, as participants observed difficulty with focus on maintaining friendships. Instances of forgetfulness, inattention, and difficulty navigating multiple relationships may be understood through the notion of monotropism, as participants observed issues with focusing on maintaining friendships and object constancy in those relationships, often going long periods of time without talking to friends”

“Shared presence – sharing of ideas, interests, and presence, whereas relations with non-autistics were regarded as less structured, more active, and focused more on what one may do with the other, rather than what one may share with them.”

Gowin Ryan, J (2023) Amplifying Autistic perspectives: Learning from and with Autistic adults to support their autonomy, A thesis submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy in Rehabilitation Science, Faculty of Rehabilitation Medicine, University of Alberta

“This dissertation provides a pathway to increased autonomy for Autistic people… We learned from Autistic participants with learning disabilities that autonomy means being able to be themselves and includes having choice and control, communicating their way, and being in a comfortable environment, and having Autistic facilitators. They told us how we can support them to be autonomous… Relationships are critical. It takes a community to support Autistic adults with ID to be autonomous, ultimately enhancing self-determination and quality of life.”

Keates, N., & Waldock, K. E. (2024). Neurodivergent learners. In Advances in educational technologies and instructional design book series (pp. 19–46).

“An increasing number of students in higher education are neurodivergent, shaping and challenging the practices of how staff teach in higher education. This chapter seeks to outline why higher education staff should meet the needs of neurodivergent students, and how this can be done…The themes are considered communication, technological assistance, being predictable and meeting expectations, normalising everyone’s needs (or rather, normalise neurodivergence).”

Kenny, L., Remington, A., & Pellicano, L. (2024). Everyday executive function issues from the perspectives of autistic adolescents and their parents: Theoretical and empirical implications. Autism.

“Given the prolonged development of EF and the degree of neural plasticity during childhood (Huttenlocher, 2002; Nelson, 1999), it is possible that monotropism interacts with EF – both in the performance of everyday tasks as well as in its development. In the neurotypical population, prominent accounts of attentional control, the ability to focus on a task and ignore irrelevant information, have suggested that developmental gains in attentional processes provide children with greater executive control over action (Posner & Rothbart, 2000) – indeed attention is considered ‘a basic building block for the EF system’ (Garon et al., 2008, p. 51)”

They suggest that,

“Future research should investigate how monotropism overlaps with the central attention system (Posner & Rothbart, 2000), and its interactions with EF, in both its expression and its emergence over developmental time.”

Kimber, L., Verrier D., and Connolly S., (Sept 2023) Autistic People’s Experience of Empathy and the Autistic Empathy Deficit Narrative.Autism in Adulthood. Online ahead of print

“Many respondents reported their empathic responses to be overwhelming, or even distressing. These different experiences of empathy contrast with societal expectations of empathy, which often result in additional labor for autistic people as they navigate the non-autistic centered world… Further work needs to be done to not only explore this misconception at a societal (rather than academic) level, but also better bridge the gap around the changing ideas of empathy and real-world understanding of autistic empathy.”

Long, R. M. (2024). Access points: Understanding special interests through autistic narratives. Autism in Adulthood.

“The narratives of special interests collected in this project challenge stereotypes of autistic people as disconnected and asocial. Instead, this study demonstrated how special interests take on increased individual and societal importance for autistic people.”

McGreevy, E., Quinn, A., Law, R., Botha, M., Evans, M., Rose, K., Moyse, R., Boyens, T., Matejko, M., & Pavlopoulou, G. (2023). An experience sensitive approach to care with and for autistic children and young people in clinical services. (Pre-print).
Hurrah for humanising care, being with people, creating a sense of togetherness, valuing insiderness, helping people make sense of their personal journey, being embodied and promoting agency, and celebrating uniqueness! This is a wonderful piece of work!

Lisa Chapman @CommonSenseSLT has created some lovely colourful, and inspiring graphics to support this work. They are currently nesting in Autistic Realms and also available as a free download: https://www.autisticrealms.com/humanising-care

“Monotropism is a theory that describes how autistic people’s attention is pulled to focus on one or few interests at any time. This core characteristic of autistic cognition influences information processing and communication styles. These autistic-led theories enable systems of support to see autistic people in both agency and vulnerability positions (Pavlopoulou, 2021), which re-interprets cognitive or communication dysfunctions as relational rather than intrinsic to the person (Chapman & Botha, 2023), and draws attention to the social determinants that significantly limit their participation and impact their health and wellbeing”

“The world can be chaotic, especially when going through a traumatic experience, and a deep intellectual dive into what caused the stress can be a way of processing it and creating a sense of order and security. The professional should find out what effect an intense (or morbid) interest has on the young person without prior assumptions, whether it signifies rumination or is actually a positive way of coping with hardships. A more holistic view on the autistic child’s life can be beneficial in different scenarios….”

(from: supplementary material)

Nijhof, D., Melville, C., Rydzewska, E., Pavlopoulou, G., Meehan, L., & Gardani, M. (2024). Experiences of and treatment preferences for insomnia in autistic adults: An Interpretative Phenomenological Analysis. Research Square (Research Square).

“The Night is Friendlier” and “It Doesn’t Really Work for Me”. These themes demonstrate the unique experiences of autistic adults with sleep difficulties and insomnia”

This article includes brief references to monotropism, not an in-depth discussion, but interesting shared experiences of autistic people sleeping/not sleeping!

NOESIS: An Enhanced Educational Environment for Kids with Autism Spectrum Disorders. (2008, July 1). IEEE Conference Publication | IEEE Xplore.

“As the central feature of autism is attention-tunnelling, monotropism, computers can be an ideal environment for promoting communication, sociabilility, creativity, and playfulness…”

(Published 2008 but not cited on here until now)

O’Neill, C., & Kenny, N. (2023). “I Saw Things through a Different Lens. . .”: An Interpretative Phenomenological Study of the Experiences of Autistic Teachers in the Irish Education System. Education Sciences, 13(7), 670.

A really wonderful and valuable research paper sharing the lived experiences of Autistic Teachers and how an understanding of monotropism can help everyone, including staff and pupil relationships. Their findings showed that increased awareness (of autism) is needed across the Irish education system, including initial teacher education (ITE), professional development (PD), and support services.

Fabulous!

“Monotropism was seen as a core aspect of the participants’ experiences and identities. The data identify a wealth of examples of the individual ways participants operationalise monotropism in making sense of their experiences in the education system as an aspect of Autistic advantage in making positive contributions to their schools and pupils. The participants’ perspectives emphasised their individuality and experience of minor differences they perceived from those around them, highlighting the importance of understanding minority stress experienced by Autistic individuals in schools as work settings.”

Rapaport, H., Clapham, H., Adams, J., Lawson, W., Porayska-Pomsta, K., & Pellicano, E. (2023). ‘I live in extremes’: A qualitative investigation of Autistic adults’ experiences of inertial rest and motion. Autism, 0(0).

Another important contribution to the emerging literature and research around the benefits of understanding the lived autistic experience. This paper explores autistic people’s phenomenological experiences of inertial rest and motion and identifies factors that might moderate autistic inertia – including an understanding of monotropism. I love that this paper explore the disabling and enabling aspects of interia, I think this is highly relevant to monotropism.

“findings revealed that Autistic inertia is a double-edged sword, yielding both joyful and highly disabling experiences. These findings are an essential first step in developing a formal definition of Autistic inertia which will, in turn, be essential for raising awareness of Autistic inertia and reducing the stigma associated with inertial challenges, developing supports to manage these challenges and celebrating the unique advantages that Autistic inertia confers.”

Rapaport, H., Clapham, H., Adams, J., Lawson, W., Porayska-Pomsta, K., & Pellicano, L. (2023). “In a State of Flow”: a qualitative examination of autistic adults’ phenomenological experiences of task immersion. Autism in Adulthood.

This is a long-awaited paper, and I’m super excited to be able to share it here! This research addresses Autistic people’s experiences of task immersion and looks at how their experiences relate to existing conceptualizations of flow, hyperfocus, and monotropism. It’s hugely valuable research, highly recommended reading, and it includes some wonderful illustrative tables that highlight the intersections of flow, hyperfocus, and monotropism!

Importantly this paper also addresses that the “disregard for the theory of monotropism, and autistic testimony in general, has likely hampered progress in examining the association between autism and flow experiences.”

Their research highlighted three main themes related to monotropism, hyperfocus and flow:

  • Theme 1: ‘‘It’s just total absorption’
  • Theme 2: ‘‘Finding the balance’’ can be ‘‘a serious struggle’
  • Theme 3: ‘‘I get to be me’

“They found that, “consistent with monotropism, participants repeatedly recounted experiencing intense ‘‘tunnel vision,’’ where their attention is captured on a small number of interests at any time to the extent that they ‘‘lose touch with everything else.’’ In sum, our participants’ accounts generally map onto conceptual understandings of flow, Autistic hyperfocus, and monotropism.”

“Results: Our participants’ accounts closely matched conceptual understandings of flow, Autistic hyperfocus, and monotropism. Specifically, the analysis revealed the all-encompassing nature of task immersion experiences, and how it could be difficult to ‘‘find the balance’’ between the joy and other aspects of everyday life. Despite the drawbacks, participants were glad to be immersed because they felt they could be themselves, with no pretences.

Conclusions: These results are important for reframing task immersion as a state of great potential value to Autistic people’s lives, but one that may require additional support if it is to play its role in enabling Autistic people to flourish.”

This paper also considers the impact of the findings from the Monotropism Questionnaire (Garau et al., 2023), which showed that being Autistic and/or having ADHD were significantly associated with higher scores on the monotropism questionnaire. They suggest that “more work is needed to determine precisely how experiences of task immersion are shared across neurodivergent profiles and whether the same underlying mechanism(s) is involved.”

Rosa, S. D. R. (2023, September 5). Grave concerns about “Profound autism” and diagnostic overshadowing. THINKING PERSON’S GUIDE TO AUTISM.

“Richard Woods, Kathryn Williams, and C.A. Watts talk to TPGA about their recently published letter explaining why “profound autism” not only risks bungling the support needs of autistic people with co-occurring conditions through diagnostic overshadowing, but could endanger many autistic lives.”

Richard brings monotropism into this conversation too.

Shepherd, J., Sutton, B. S., Smith, S., & Szlenkier, M. (2024). ‘Sea‐glass survivors’: Autistic testimonies about education experiences. British Journal of Special Education.

This paper is heartbreaking and also inspirational. Drawing on the shared lived experiences of autistic adults reflecting on their own educational experiences.
There are lots of references to monotropism throughout and how a better understanding of this could really help everyone. Highly recommended reading!

“All the writers challenge the deficit model of autism by demonstrating their strengths in terms of strong interpersonal connections, creative imaginations and harnessing the power of monotropism to help others”

“Having autism, I got this ability to get fixated on certain things when I was younger-the things had to be part of my interests. When I did this, it slowed things down and I can remember everything around me blending in, it was like a trance and was a very nice feeling. Of course, people around me didn’t quite understand what I was doing at the time, but I only did this to help deal with the world around me, it was like an escape place in my own mind… One of key things with having autism and most important is how to use your interests to help you. Of course interests can start off with very basic things such as spinning objects moving in one direction but, then with the fixation that can happen, you can get even more interested in something and something that perhaps was boring then becomes interesting.”

Their paper calls for a more “informed and empathetic dialogue to explore how education is experienced from a neurodivergent perspective in order to address the ‘double-empathy problem’ and effect real change (Milton, 2012)” Within this their paper has woven in the importance of understanding and embracing the theory of monotropism as highlighted by Simon, one of their participants how is now a teaching assistant and uses pupil interests to help support his students. He says, “When it comes to autism, I know using interests is very key in getting students who have ASC (autism spectrum condition) engaged.”

Stenning, A. (2023). Narrating the many autisms. Taylor Francis Group, UK
This 250-page book by autistic interdisciplinary scholar Anna Stenning is available as a free ebook. She discusses Monotropism in some depth, largely in the context of the stories that are told about autism. As she argues:

autistic-focused counternarratives about Monotropism, sensory differences, and the reality of autistic collaboration enhance narrative agency, contribute to individual self-trust and confidence in developing projects and plans, and support ongoing social relatedness.

p. 32

In other words, this perspective on autism is empowering for autistic people, on multiple levels. She also discusses the ability of Monotropism to better explain aspects of autistic experience that dominant narratives overlook:

Murray and colleagues’ explanation of Monotropism incorporates first-person narratives by Grandin, Williams, Lianne Holliday Willey, and others, showing how the master discourses in cognitive psychology do not offer the best explanation of the phenomena – which include sensory features, atypical social experiences, and distress at not being able to complete a ‘self-generated task’. Monotropism offers a perspective on first-person experiences that is not available within the social deficits perspective – and this presents opportunities for refinement in the light of new understandings that would not be possible with the competing theories.

p. 73

Wolfberg, P. & Dunn Buron, K. (2024). Learners on the autism spectrum: Preparing educators and related practitioners. Routledge & CRC Press.

“It is common for autistic learners to be hyper-focused on singular activities or intense interests which may occur for long stretches, and also change over time (Dominguez et al., 2006; Doody & Mertz, 2013; Winter-Messiers, 2007). Traditionally, this has been viewed as problematic, indicative of rigid or inflexible behavior (a non-play quality). However, from a neurodiversity standpoint, this is considered a “monotropic” style of play (Murray et al., 2005), akin to entering a flow state in which one is deeply absorbed in the creative process around a fascination or affinity (Csikszentmihalyi, 1975). When appearing in tandem with other quality indicators, monotropism is recognized as authentic independent play activity that is meaningful and valued by the player, and which may serve as a springboard for socially coordinated play (Murray, 2018; Wolfberg & Woods, 2023). Play, Friendships and Autism: Co-creating a Culture of Inclusion with Peers by Pamela Wolfberg, Heather McCracken, and Tara Phillips in Learners on the Autism Spectrum: Preparing Educators and Related Practice”

Woods, R. (2024, February 3). List of potential Monotropism Questionnaire (MQ) Research Topics.

Richard Woods was part of the team that developed the Monotropism Questionnaire (Garau et al, 2023). The List of Potential Monotropism Questionnaire Research Topics document was initially shared across social media and other platforms for people to contribute towards. The results of this community effort have been reflected in the above document. This could prove valuable as a starting point for people researching adults’ experiences.

Woods, S., & Estes, A. (2023). Toward a more comprehensive autism assessment: the survey of autistic strengths, skills, and interests. Frontiers in Psychiatry, 14.

“To move toward overcoming the stigma that permeates our diagnostic assessments we must expand and clean the lenses through which we view autism”

Although this article only mentions monotropism briefly, the theory can account for much of what it describes.

Zhuang, S., Tan, D. W., Reddrop, S., Dean, L., Maybery, M. T., & Magiati, I. (2023). Psychosocial factors associated with camouflaging in autistic people and its relationship with mental health and well-being: A mixed methods systematic review. Clinical Psychology Review, 105, 102335.

HUGELY important, brilliant totally amazing piece of research. Note – There is no mention specifically about monotropism, but I see it fitting into embracing authentic autistic identity and acceptance and is valuable!

“While camouflaging presents some social benefits, it also comes with serious costs to mental well-being as it can lead to autistic burnout and negatively impact one’s relationships and identity. Our review calls for systemic change to create psychosocial environments where autistic individuals are accepted and emboldened to drop the mask, and to live and relate with others in more authentically autistic ways.”

Other research discussed in the Monotropism Server that may be of interest:

“People who see autism rather as a type of mind than as a disorder had higher self-esteem…“People who view themselves as more similar to other autistic people felt more stressed, but this result was not accurate for people who view autism as a type of mind. Clinicians should be sensitive to the way autistic people understand autism and to what extent they identify with the autism community because it may relate to their well-being.”

Resources & Blogs

In other languages

The new Dutch book Als alle breinen werken (‘If all brains work’) by Saskia Schepers mentions monotropism briefly in its description of autism. It’s a book for human resource professionals and managers on neurodiversity in the workplace.

Translation of the quoted text: “The most characteristic [aspect] with autism is the particular way of processing information. Because of that, autistics often have trouble interpreting social situations, and they have a hard time dealing with changes. The related ‘slow [informational] processing’ means that someone with autism requires more time to observe information, to process it and to respond to it. A relatively new theory is monotropism. According to this theory, monotropic minds are inclined to have their attention drawn to a smaller number of interests at any given time. These interests use up an above-average amount of cognitive functions such as focus. Of course, less capacity then remains for what is outside these interests.”

Neurodiversity at Polish universities. Cites Murray, Lesser, Lawson (2005). In Polish, PDF file. https://depot.ceon.pl/bitstream/handle/123456789/23720/Neuroroznorodnosc_E-book.pdf

Play

We have been having lots of discussions about monotropic play from within the montropism server emerging from some of the following articles:

Training

Congratulations to Wenn Lawson for winning the edX prize for the ‘Autism and Mental Health’ course. Video of his acceptance speech is here.

Downloadable Resources

Infographics



For Monotropism Spring Round Up Part Two (Videos/Podcasts and Social Media signposting follow this link: Part Two


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