At the heart of everything I do is a belief that lived experience and Autistic lives matter.
What if support for Autistic children began with listening to Autistic people?
That was the the question I had in mind when I first created Autistic Realms in 2022. I wanted it to be a space that I wish had existed many years ago when I was first trying to understand and support my own children, myself and the families I worked with as a teacher.
As an Autistic parent and someone who’s lived through cycles of burnout and the barriers that come with being misunderstood, I wanted to build a space that speaks from within the experience. A space that affirms our way of being and helps parents, carers, professionals, and young Autistic people themselves feel less alone.
What Is Autistic Realms? A Practical, Neuro-Affirming Support Hub
Autistic Realms is where I share grounded, neuro-affirming support for families, educators, and allies to support Autistic people, especially those facing barriers to education, burnout and systemic misattunement.
It’s mainly a family-focused space rooted in lived experience, academic research, community wisdom, and the need for real support that respects Autistic minds and bodies.
Topics I regularly explore:
Monotropism, deep focus, and flow
Autistic burnout
Supporting children who are experiencing barriers to education
Sensory processing and interoception differences
Autistic communication, play, masking, and identity
Neuro-affirming reading lists and community signposting resources
Explore My E‑Books
Over the past few years, I’ve created a growing library of over 20 practical, neuro-affirming eBooks and 100s of infographics, mostly focused on supporting Autistic young people and their families.
Many are completely free to download, covering topics such as sensory processing and managing transitions, low-demand parenting, support for executive functioning difficulties, and finding out about the theory of monotropism.
These guides are ideal for sharing with schools, therapists, and support networks—or simply for finding your own sense of understanding and validation.
Step Through the Portal Into More Realms
There’s also another thread woven through everything I do and love….
A slower, stranger space for art, literature, poetry, philosophical unravellings, and deep neuroqueering ways of becoming.
Which is why I have now created More Realms, a companion site for creative flow, theoretical and philosophical exploration, and the more sensory relational side of neurodivergence.
More Realms is where I draw on my background and love of Literature and Art alongside lived experience and neuroqueer ways of sense-making, to explore ideas through poetry, story, image, and more-than-human connection. Rooted in neuroqueering, posthuman thought, and ethodivergent sensory relationality, this space will host reflective writing, collaborative projects, and community-rooted explorations of art, literature, and alternative ways of becoming.
It’s a space to spiral, stretch, and reimagine, where words tangle with moss and metaphor, and where Autistic and disabled creativity is not marginal, but central.
I am hoping that More Realms will help me keep Autistic Realms clear and accessible for those seeking practical support, while also honouring my own creative process and flow.
More Realms is for you if you’re curious about:
Neuroqueering time
Mad studies
Posthumanist ideas
Deleuzean inspired philosophy
Poetics, liminality, and more-than-human belonging
Creative storytelling from the margins
Nature, rhythm, and spiralling attention
More Realms is a space of becoming, for those who long to wander deeper—into the wild edges of thought, where nature invites pause, neuroqueer ideas take root, and sensory worlds unfold. A place to linger. To meander through tangled textures. To drift in spiral time. To create our own maps.
The word resilience is often used as a weapon, especially against parents/ carers whose children are different, who may be neurodivergent and who are more likely to need accommodations in school to succeed. I have found the word ‘resilience’ triggering for a long time, it has been used against me as a parent, against my children and against many of the families and young people I support. Being told you need to harden up and be ‘more resilient’ shows a lack of understanding and a lack of openness as to the reasons why a person may be struggling. It doesn’t enable curiosity or for people to share their story, it is a closed statement, a dead end that can only lead to more harm for many people.
The word resilience is often used as a judgement. It is used as a word to shame parents/carers and to imply they are not good enough at parenting; they aren’t parenting in the ‘right way’ in the ‘normal’ way. It is often implied that low-demand parenting styles are about ‘giving in’ and one of the root causes of neurodivergent children being more ‘needy’ and unable to fit in; neurodivergent needs can be hugely misunderstood. However, if people were more understanding and schools more neurodiversity-affirming, perhaps those struggling wouldn’t be told that they needed to be ‘more resilient’ to survive – let alone given the chance to thrive?
Being told, ‘your child needs to be more resilient’ implies that they are not good enough as they are, they need to be better. It is often suggested that in order to do that, we need to teach our children that needing extra reassurance, using comforters, needing specific routines, needing extra time, and needing things done in a certain way are not important and that children should just ‘get on with it’; children should be ‘more resilient’ and it is our fault as parents if they are not. Using the word resilience in this way is ableist and denies needs.
As parents / carers of neurodivergent children (such as Autistic, ADHD and PDA) we are often told we need to be firmer and stronger in our parenting approach. In the UK, many parents whose children are struggling with their mental health or having difficulty in education are often invited onto parenting courses, essentially with the aim of learning to be a ‘better parent’. A few of these courses may be helpful and neuro-affirming, but the majority are currently ableist and harmful; they are shaming and stigmatising for the parents of neurodivergent children (whilst they also don’t acknowledge that many of the parents of neurodivergent children are more likely to be neurodivergent themselves).
To make our children more resilient, it is frequently suggested that we should enforce more rules; we need to adopt a behaviourist approach and not be such a pushover. There is often a huge misunderstanding of the benefits of a flexible, compassionate, low-demand approach, especially for PDAers. We are expected to teach our children to fit in at almost any cost to their well-being and our well-being as parents/carers.
It is very common for neurodivergent children to struggle with transitions, especially the transition into school and new settings or when meeting new people. One example of a common scenario where we may be told we need to be more resilient as parents, and our children need to be more resilient, too, is that of children who get upset at the school gates when leaving their carers. Children who are struggling or being ‘difficult’ are often bribed into school with reward charts, their needs are then left unmet and trauma cycles can begin to grow. Over time, this gives a message to children that they need to mask, build up their armour, and if they can make it through to the next star on their reward chart, it will all be okay. However, masking is exhausting, denying and not having needs met can eventually lead to burnout and ill health.
Teaching people they need to be resilient to be accepted and fit in is harmful.
A parent whose child may be crying and clinging onto them as the school bell rings is a child who needs more connection with their safe person (not less) and it shows they aren’t yet ready for the transition. Parents are told things like, ‘Oh, they will be fine once they are in; stop fussing, you are making this worse for them’.
Many parents are told to be more resilient, to be firmer, to not let emotions get in the way of how we ‘should parent’. It is suggested we need to ignore our gut instincts and pain as our child is being peeled off us and escorted into school crying – with the words ‘they will be fine in a bit’ thrown back at us, even though we know they won’t, not really. We know they may settle down eventually, but the fallout from that trauma and needing to mask all day will be released after school when they get home. Meltdowns and shutdowns will likely be triggered when children are once again in their safe space at home and trying to process and regulate after a day of masking and trying to be ‘resilient’.
Blame and shame are often attributed to parents who ask for accommodations to make transitions (such as the above) easier for their neurodivergent children. Children often need support plans for accommodations as simple as needing a comforter or a more relaxed start of the day. Such accommodations should be available for all in neuro-affirming settings and not seen as an ‘extra’, just as a ‘difference’.
Teachers may says things like; “No comforters are allowed in school, if we did it for one child we’d need to allow it for everyone….We can’t have a class full of teddy bears or blankets’. Or you may hear things like; “They are too old for a comforter now, you should have got rid of that years ago!”. We are often told as parents; “you need to stop fussing and giving in, it isn’t helping your child, you are making this situation worse”. It is implied that if parents parented ‘better’ and were more resilient themselves, their children wouldn’t have so many issues. The word resilience becomes heavy with shame when used in this way. It is neuronormative society that needs to embrace resilience, not that neurodivergent or disabled people need to be more resilient.
The word ‘resilience’ has been used against many people and neurodivergent or disabled families I know, including their children and young people, to suggest that they are not doing enough, they are not strong enough, not mature enough, not mentally well enough and that they need to build up some armour to make themselves stronger. We are told we need to be more resilient so we can then fit into society and conform to neuronormative ideals. If neurodivergent people could only be more ‘resilient’, it would save other people making accommodations.
When used in this way, the word resilience puts the blame on the person (often the disabled, neurodivergent person), and it reinforces the uneasy and unfair power dynamic and denies the need to make environmental and societal changes.
I am suggesting a reclaiming and reframing of the word resilience.
Radical Resilience
Radical resilience is about using our resilience, our strength, to challenge the systems and advocate for our neurodivergent and disabled needs in a society that predominantly values neuronormativity, at all costs.
Resilience can be a powerful tool against the systems and people who try to use the word to shame and make neurodivergent and disabled people feel like they are not good enough, not mentally well enough, too weak, too soft and those who are not learning, working, or parenting in what is expected to be the ‘right way’.
We shouldn’t have to become more resilient to fit in; we shouldn’t need to deny our needs and teach our children that they can only survive. We shouldn’t need to mask, suppress and deny our authentic selves to thrive.
We need to change environments, not fix people.
Autism + Environment = Outcome
(Beardon, L. (2022). What works for autistic children. Sheldon Press. P.22
Neurodivergent and disabled people don’t need to be more resilient to fit in, but we can use our resilience to advocate and make change. I am not suggesting this is easy, and there is a great deal of privilege in being able to do this in a safe space—race, gender, and many other factors will impact a person’s ability to advocate and be taken seriously, but when we can, we need to try to shift the narrative.
If people’s needs were met, there would be no need for the word “resilience.” I think we need more softness and flexibility, more acceptance and understanding of differences, better communication between people, and less of a double empathy gap (Milton, 2012). We shouldn’t need to keep fighting ableist systems we need neuro-affirming practice and care for everyone. Our children shouldn’t need to be told that they need to be stronger and that they should be more resilient. We are enough.
Radical resilience involves reclaiming the word resilience, embracing change, facing difficulties head-on, and not just surviving but thriving in the face of adversity. It also involves thinking outside the box, being open to new possibilities, and adapting to difficult circumstances in innovative neuroqueer ways.
To be radically resilient, we need to find possibilities in between hard spaces to transform the landscape and enable more neuro-affirming environments for people to flourish. In the right environment, resilience isn’t a word of shame; it can be used to create new ideas and pathways for change and strengthen people’s advocacy skills to enable a neurodiversity-affirming society.
Burnout can creep into our lives as a type of deep exhaustion that won’t lift, no matter how much sleep you have. It can leave you feeling lost, disconnected from joy and leaving you with no energy or capacity to keep pushing through. For many neurodivergent people, the demands of conforming to normative expectations around work, rest, and productivity make us especially vulnerable to burnout. Healing from burnout is not just about stopping everything, when you are ready it is also about reconnecting with ourselves and resting in meaningful ways that work for us, not against us. One of the most powerful ways to do that for some people may be through creative flow.
Create by Betsy Selvam Image of two hands on deep red background cupping a bright pink flow with symmetrical flourish of cream flowers and botanicals growing from within
Flow as Restorative Resistance
In her presentation on Art as a Therapeutic Tool, Betsy Selvam spoke about the transformative power of creative expression in healing. Betsy said creative practices and, “art opens up space for healing and a way of reclaiming your own narrative.” This idea resonated deeply with me, using art, writing and creative practice to connect with others in the community can help rewrite the stories written for us by systems that have never understood us as Autistic people.
Letting go of how we should rest or should work opens up a pathway towards restorative flow. When we’re in flow, when we are completely absorbed and immersed in our monotropic interests and passions, may be in a creative activity, something shifts. Engaging with your interests if you are Autistic is about more than simply having a hobby, it is a core part of being monotropic, it enables us to be present, to feel, to flow and liberate ourselves from other demands. Finding time and pockets of flow is essential for everyone’s well being to help prevent, and also heal from burnout.
Burnout Recovery Through Creative Practice
Engaging in creative flow, whether through art, writing, dancing, crafting, or other joyful sensory activities, can be really cathartic.
Flow helps by:
Offering a soothing rhythm for overwhelmed sensory and nervous systems
Supporting regulation and reconnection with our bodily needs
Fostering a sense of purpose and empowerment outside capitalist demands of neuronormative expectations of productivity
Reignites curiosity, imagination, and playfulness and can bring joy!
Creates connections with others and opens up opportunities for collaboration.
Burnout recovery isn’t about returning back to “normal”, I think it’s about creating a new rhythm of being that honours your flow, your natural fluctuations of energy, your attention, and your authentic story. Creative practice provides one of the few spaces where this is possible, it enables a space where you can be present with yourself without judgment or pressure . You don’t have to be good at art, craft, writing or dancing, it is the process that is important, the taking part and joining in rather than the end product.
Reclaiming Rest
In the dominant neuronormative culture, rest is often framed as a reward for hard work or as a pause before getting “back on track.” For neurodivergent people, especially Autistic and ADHD people, rest needs to be understood differently. Rest isn’t just a break, it’s re-balancing. Engaging in flow states can be deeply restorative and energising and help with resting in a meaningful way that replenishes energy.
I have explored ways of reclaiming rest and affirming flow states and energy cycles in my article here – Reclaiming Rest.
Collective Flow
While individual creative practices are powerful, shared flow can be just as healing and even more transformative for some people. When we come together in collective flow and creativity by body doubling, co-writing, co-making and co-creating without pressure it is at these times we can build community and strengthen our connections. Shared flow can help remind us that we’re not alone in our experiences, they allow us to share regulation, joy, and foster interdependence where people can co-create meaning together and create a shared sense of belonging. Collective flow allows for a shared rhythm where when one person’s flow may be slow and they’re finding things difficult, another person’s flow can support them and relieve some of the pressure. Flexible, neurodivergent friendly approaches to work and creativity are helpful for this – things like body doubling and asynchronous working have transformed my life and enabled more room for creativity at times that work for me.
Reclaim Your Narrative
A common barrier to engaging in creative flow is the belief that you have to be ‘good’ at it. Healing through creativity isn’t about skill, I think it is more about presence, it’s about expression and letting go of expectations. You can scribble, collage, sew, move, doodle, dance or journal as a way of discovering more about yourself, there’s no wrong way to create.
As Betsy reminded us, art and creative practices can help you reclaim your narrative. It’s not about being productive; it’s about connecting and reconnecting with yourself, giving yourself permission to explore and to be creative in ways that work for you, finding ways of rewriting your narrative and constructing your own ways of being. Giving your self permission to try new things, experiment and explore.
Engaging in flow, letting go of expectations of how we ‘should’ rest and ‘should’ be working, can be really cathartic. It can help you cope, help prevent burnout and also support the recovery journey.
From Pathology to Possibility: Reclaiming Our Stories
Autistic people have been spoken about, written over, and pathologised for far too long. Our lives have been turned into case studies, symptoms, behaviours, and ‘outcomes’. We have been flattened, squashed into diagnostic criteria, and dissected through checklists and things like social skills programmes built around what we are perceived as lacking. These narratives have been written about us, but not for us in a helpful way, and certainly not with or by us.
The Practice of Unknowing: Reimagine Knowledge
It is Autistic Pride month, and I have been inspired by the idea of ‘unknowing’ in David Jackson-Perry’s new paper, which was released last week, ‘Unknowing in Practice: The Promise of Discomfort, Failure and Uncertainty in Neurodiversity Studies’ (2025). Jackson-Perry writes, ‘The practice of unknowing I am thinking of is not a state or a thing, not a noun, like ignorance, but decidedly a verb, an orientation, an ambition to stay with the discomfort, to re-imagine and embrace failure as holding creative potential, to sit with uncertainty‘. Academics and professionals need to ask, ‘How might we put the verb ‘to unknow’ into practice?’.
To feel proud as Autistic people, we need academia and systems to create space for neurodivergent community voices to be heard, recognised and valued so our stories can be validated. We need more accessible resources so non-academic people can weave in and benefit from the good neuro-affirmative research that is out there. We need different modes of communication and storying to be accessible and taken seriously.
Community Concepts and Crediting Lived Experience
Research is only of benefit if it helps those it is intended for and is put into practice (such as discovering the value of the Double Empathy Problem (Milton, 2012) and the theory of monotropism (Murray et al., 2005). A good example is Crompton et al.’s (2025) recent research about information transfer within and between autistic and non-autistic people, where various formats were provided to make their work more accessible by creating a short video. We need more space for neurodivergent researchers to work and for non-academic theories and ideas that have been evolved by advocates and through communities to be taken seriously and credited, for example, Tanya Adkin’s concept of AuDHD burnout and Meerkat Mode (2023).
Restorying is about listening, believing and creating new and openly accessible ways to share information and experiences. It is about unlearning the old stories written about us without our consent and voices. It is about refusing the scripts that reduce our sensory worlds to dysfunction, our deep monotropic interests to obsessions and invalidating our ways of communicating differently. Restorying is about rejecting frameworks that only see Autistic people through what we are not, how we lack, what we should be and instead it allows our community language and different ways of expressing ideas to be valued and validated.
Restorying as Resistance
To restory is to reorient towards our authentic selves, our communities, our ways of experiencing, sensing, knowing and sharing. Restorying is a political and embodied act of resistance and can be seen as a way of neuroqueering (Walker, 2021) and resisting neuronormative domination. As Jackson-Perry writes, “looking outside the academy to engage with and cite work produced by neurodivergent lay-people, advocates and scholars publishing outside academic journals holds considerable potential to unknow, or to re-story, with advantages to both ethics and knowledge production.”
I am not in academia; I am a former early years and primary school teacher based in the UK. I am a late-identified monotropic AuDHDer with a multiply neurodivergent family. I set up Autistic Realms as a way to advocate for neurodivergent children who are so often misunderstood and experiencing barriers to education and burnout. As a former SEND teacher with my training rooted in behaviourism, I have had to unlearn everything I knew about Autism, I have had to sit in the unknowing and am still trying to find ways to relearn and rewrite my own personal and professional narrative.
I am slowly rewriting my story and making sense of years of misunderstandings, mislabeling and the consequential layers of internalised ableism due to the suppression of my authentic needs and masking. I have had to battle through repeated burnouts and have got stuck in the scary unknown space of trying to work out my identity and what being Autistic may mean for me. With the support of the communities I am now part of through sharing stories with others, I am beginning to find comfort and validation and slowly starting to make sense of things and reconnect.
Jackson-Perry’s paper explores how embracing unknowing, discomfort, perceived failure, and uncertainty can radically reshape neurodiversity studies and academia, giving space for non-academics to have a voice and reshape the narrative. I don’t think this is limited to academia; embracing ‘unknowing’ is a much-needed practice in education, health care, and workplace settings, as well as for individuals to reflect upon in their own lives. We all need to unlearn how Autism has been told to us, we need to allow time and space for unknowing to happen and learn from each other.
Reorienting Towards Authentic Autistic Ways of Knowing
Everyone has a story worth listening to, Jackson-Perry argues that ethical engagement with neurodivergent experience requires a shift toward humility, relationality, and co-produced knowledge. We are all interdependent and part of the broader ecology of life. To have one story placed on a higher pedestal than another makes no sense and reinforces ableism and hierarchy. It further silences so many neurodivergent and disabled people who do not have the privilege to enter academia; it continues the cycle of Autism research being done ‘on’ and ‘about’ people and not with people and very rarely by Autistic people, although it does feel like things are really starting to change for the better – hurrah!
As Grace, Nind, de Haas, and Hope (2024) argue inExpanding Possibilities for Inclusive Research, we must radically rethink what actually counts as knowledge and what counts as a valuable story or piece of research. Their work, which centers on the experiences of people with profound intellectual and multiple disabilities, demonstrates that genuine inclusion requires not just inviting marginalised people into pre-existing research frameworks but transformingthose frameworks entirely. Their paper calls for a decolonisation of research, a move away from hierarchical, ‘expert-driven’ knowledge production towards collaborative, sensory, and relational forms of doing research WITH people. We need to create more space for Autistic people to carry out research. For those with PMLD we need to be involving them in our research and working with them as researchers too. There is opportunity for everyone to play a part in the restorying of Autism and research, but to do that we need to really tune in and listen to ourselves and those we are with, not just to words, but to responses and felt experiences, however they may be expressed. We need to lean into the unknown space of ‘what if’, ‘may be’, ‘perhaps’ and explore together.
Restorying Through Community and Connection
Restorying is not just about reclaiming the narrative; it is about reclaiming the conditions under which knowledge is made and valued, going beyond academia and university based research. It means refusing research that extracts from us while treating us as unknowable and unworthy. We need to honour Autistic knowledge as it exists in our community, such as in online chat forums and in ways expressed outside of verbal language—in art, music and bodily responses, especially for those with profound and multiple disabilities and those from other marginalised intersections of community and the non-speaking community.
Jackson-Perry and Grace et al. (2024) collectively urge a reorientation from knowing about people to being with people, from capturing data to cultivating relationships, from seeking certainty to sitting with ambiguity and uncertainty and possibilities, this needs trust. This is the epistemic ground of neurodiversity justice, and it happens when we trust each other as co-authors to create and share moments of Autistic joy, infodumping and penguin pebbling. It happens in the making of new resources such as the Map of Monotropic Experiences which I have created with Stimpunks community; it emerges in the care we extend through slowness, body doubling and parallel play. It happens in the nonverbal attunements we practice as we stim and co-regulate, it happens in the neuro-affirming ways we can give time and space for each other, especially in online communities, our basecamps. Humans are interdependent and neurodivergent people and our communities are deep and rhizomatic, our stories need to reflect that.
Central to the work of both Jackson-Perry and Grace et al. is a call to resist extractive research practices and instead foster shared, embodied, and situated ways of knowing and unknowing. The academic world and our education system still cling tightly to its authority over what counts as ‘real knowledge’. Even in fields like Critical Autism Studies, where Autistic concepts and research such as the Theory of Monotropism and the Double Empathy Problem are increasingly acknowledged, the structures and practices to adopt this meaningfully in real life settings such as our schools and health care system are still often defaulted to gate keeping.
Autistic ways of knowing, rooted in sensory attunement, pattern making, connection, and deep, often nonlinear ways of processing, are frequently dismissed or, at best, absorbed into more palatable forms that meet institutional standards in a very neurodiversity-lite way. Community spaces such as Stimpunks and Thriving Autistic are helping to bridge these gaps, enabling space for communities and professionals to come together. They are spaces that support the unknowing and unlearning we need to go through personally and collectively. They are affirmative spaces where people can come together to discover more about their identity and support each other in the restorying process, whilst also adding to the wider network of knowledge being shared, created and validated.
Decolonising Research and Knowledge: Relationality, and Inclusion
Neurodivergent community knowledge has always existed beyond words on paper through campfire storytelling and yarns such, as those which Yunkaporta describes in SandTalk. Knowledge and stories are alive in blogs, Facebook threads, Discord chats, community workshops, zines, mutual aid groups, and conversations in our homes. Knowledge also happens in shared moments of attunement and in the sensory experiences we may have, however small and fleeting. Knowledge lives in how we hold space for each other when one of us is spiralling and another is helping to co-regulate; it happens through interdependence, not hierarchy and it happens when we connect with each other, feel safe and feel a sense of belonging. It is in the metaphors we create together to explain our inner experiences, such as those in the Map of Monotropic Experiences,. Knowledge emerges in the care practices we have to build to survive in a world that rarely meets us halfway, even under weighted blankets, fairy lights and stimmy sensory tools.
However, this knowledge has historically been treated as anecdotal, unreliable, messy, and even more so for those with profound and multiple learning disabilities, those who are non-speaking and those who do not use the written word. Generations of voices have been deemed invalid as they have not been translated into academia’s (and educational and workplace) formal, disembodied language. When attempts have been made, it often presumes our experiences and forces normative values on us in an attempt to ‘fix’ us.
From Knowing About to Being With
Restorying is about protecting the soul and felt experiences of our knowledge; it is about recognising that our stories do not have to meet academic conventions or certain educational standards to matter and be included and valued. Our ways of making meaning through metaphor, art, music and sensory resonance are legitimate. They are part of a different epistemology, one that is emergent, embodied, and relational and needs to be honoured in academia and within our educational system from Early Years and beyond. We need space to be with each other and for Autistic experiences to be validated for what they are, not as a means to know more about Autism to make us fit in, but to find out about Autistic people so we can create environments for us to thrive and be ourselves.
When we restory and share art, music, photos, memes, blogs, comics, podcasts and YouTube videos and messages together on line we are creating new frameworks, we are building new maps from the liminal spaces and edges where we have been left stuck and unheard. Community-led restorying does not need to ask for permission as it is rooted in collective care in our Discord servers and spaces, such as Stimpunk’s weekly Solidarity Sessions and Thriving Autistic’s monthly meetups and Discovery sessions.
Community-led restorying is in every Facebook, Bluesky and X thread you may join in and contribute towards. Adding to a story can be as simple as giving a single emoji thumbs up response to a post, every message we respond to can help add to the narrative and re-shape the future and make it a bit easier for others. By joining these communities, we are coming together and enabling a space to heal and restore together, to share and unite in a commitment to justice to be heard and seen. Community stories don’t just happen through published books and journals, they happen in multiple forms and through multiple spaces including in events such as Autscape, organisations such as AMASE and neurodivergent-led mentoring, and educational provision such as GROVE (all of whom I know and support/ work with).
Many Voices, Many Ways of Knowing
Restorying and embracing the practice of unknowing can inform how we advocate and support each other to co-create a more accessible future for everyone. It means building tools and resources that emerge from our reality and differences, not what service providers think we may or should need.
Restorying means refusing the binary between ‘academic’ / ‘professional’ and ‘lived’ experience, as many of us (like myself) also exist in the blurry space in between. By restorying involves including many different voices, in many different ways we can co-create knowledge that is decentralised, rhizomatic and truly honours the most marginalised people in society.
Autistic Pride: Restorying as Healing and Resistance
The deficit model of Autism is not just outdated; it is harmful. It erases our strengths, flattens our complexity, and narrows our futures. Restorying is how we can keep on undoing the harm that deficit-based research has caused Autistic people. Sharing our real lived experiences stories in whatever way we feel comfortable is a way of reclaiming our pasts, healing, reimagining our present, and expanding co-creating futures rooted in dignity, interdependence, and neurodivergent flourishing.
We all have a voice, no matter how that sounds or may be expressed. We need to keep telling our stories. Restorying is how we can reclaim our Autistic voices, honour our ways of knowing, and build futures rooted in connection, not correction.
Join community spaces, share your blogs, art, music, videos, creative projects, info dump about your passions, and join body-doubling groups and solidarity sessions for support. Let’s cite each other across social media, reply to each others posts, share each others work and stories. This will help to build archives of collective knowledge and create even more spaces for our voices to be heard.
We all have a voice and a story to tell and as Jackson-Perry said, there is ‘considerable potential to unknow, or to re-story, with advantages to both ethics and knowledge production‘. Autistic Pride Month is a great time to share, come together, rewrite the narrative and be heard.
Grace, Joanna, Nind, Melanie, de Haas, Catherine and Hope, Joanna (2024) Expanding possibilities for inclusive research: learning from people with profound intellectual and multiple disabilities and decolonising research. Social Sciences, 13 (1), [37]. (doi:10.3390/socsci13010037).
Jackson-Perry, D. (2025). Unknowing in practice: the promise of discomfort, failure and uncertainty in neurodiversity studies. Neurodiversity, 3. https://doi.org/10.1177/27546330251348083
Kavanagh, Day, A., Day, Kavanagh, M., Hartman, D., O’Donnell-Killen, T., & Doyle, J. K. (2025). The Neurodiversity Affirmative Child Autism Assessment Handbook. Jessica Kingsley Publishers.
Murray, D., Lesser, M., & Lawson, W. (2005b). Attention, monotropism and the diagnostic criteria for autism. Autism, 9(2), 139–156. https://doi.org/10.1177/1362361305051398
Walker, N. (2021). Neuroqueer heresies: Notes on the Neurodiversity Paradigm, Autistic Empowerment, and Postnormal Possibilities. Autonomous Press.
Yunkaporta, T. (2020). Sand talk: How Indigenous Thinking Can Save the World. HarperOne.
“Once the storm is over, you won’t remember how you made it through. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in.” [And that may even be a good thing].
After years of repeated burnouts and living in an ongoing survival state, I know that I will never recover. Returning to the same place and state I once was is impossible. Too much has changed. My burnouts are deep; they have changed my very core way of being and experiencing. There has been a whole seismic shift in how my sensory system responds to life and what it needs. As Dr Devon Price wrote, ‘You might not recover from burnout. Ever‘, but that doesn’t mean you can’t find new ways of living and navigating life.
It feels almost inevitable that I will continue to have cycles of burnout as the whole of society, and the way the world works is generally just not suited to being monotropic. Constantly dividing attention resources to get through your day is exhausting for monotropic people; it can lead to the concept Tanya Adkin developed and has written about with Emergent Divergence: The neurodivergent ramblings of David Gray-Hammond – ‘monotropic split’.
I do believe the more you know about your Autistic/ AuDHD identity and the more you understand the theory of monotropism, the more you can help with the healing process. You can begin to find ways to work with your flow and not against it – even if these are just little rock pools of rest and respite where you can unmask and be yourself in your safe place with safe people who understand you – as you continue to battle against the constant crashes and tides of neuronormativity that can feel so heavy and pull us down.
Knowing more about your monotropic processing style and recognising the glimmers that help rejuvenate your sensory system and bodymind can all help. Little changes to your day and lifestyle can all add up. Connecting with others and sharing experiences can be invaluable; it helps you feel less alone and can help you make sense of things. Being present and embodied at a DEEP level with neurokin can help to bridge the double empathy gap. Having a basecampenables enables safety and provides more space to focus and communicate, create a collective flow and sense of belonging with others who ‘get it’.
We may not be able to fully recover from burnout (as in go back to how we were), but we can eventually move on with the right support and in the right environment. Seek out smoother spaces to work with our inner monotropic needs. If you are monotropic you need to find ways that work with you so you can embrace flow, try and find those tiny moments and safe places where you can rest and restore some of your energy so you can keep riding the waves.
Rest can become a radical act in a world that often equates our worth with productivity, especially for Autistic or otherwise neurodivergent people navigating the tides of burnout, where even our ways of resting may look different. I have been really inspired by Tricia Hersey’s wonderful writing and their recent book, We Will Rest! The Art of Escape from Nap Ministry (2024).
The Tides of Burnout and Monotropism
Following on from my blog Tides of burnout and being monotropic I believe Autistic burnout is more than exhaustion; it’s a profound depletion of mental, emotional, physical and sensory resources. Burnout is often caused by prolonged masking, sensory overload, and the relentless demand to conform to neuronormative standards.
From my own experience of Autistic burnout, I think the theory of monotropismis key to helping us understand why and how burnout happens and can also support better ways for us to move on through burnout. Monotropism is a theory developed by Autistic people in the late 1990s and resulted in the paper Attention, monotropism and the diagnostic criteria for autism (2005) by Dinah MurrayMike Lesser, Wenn Lawson. Monotropism is a neuroaffirming theory of Autism (and many ADHD people resonate with it too!) where a person’s attentional resources are focused deeply on a limited number of interests/ events or experiences at any one time. While this deep focus and flow can enrich our experiences, things like shifting attention can be really challenging, especially when external demands pull us away from our areas of interest.
The dynamics between the theory of monotropism and societal expectations can create a cycle for Autistic people. Intense focus can lead to overexertion, and difficulties with interoception may mean you aren’t even aware of when you need a rest or when you are tired, and it may mean you miss some of the signs of reaching a burnout crisis. The immersive, joyful feeling of being in deep flow can mean that you want to carry on and on as time passes quickly, 5 hours may feel like 15 minutes, and you may not have eaten, drunk or moved. Alternatively, not being able to engage in flow and battling systems and trying to fit in to your place of work can be utterly draining, even if you enjoy your job! Often being around other people, having multiple demands at any time, and having to socialise and communicate in ways that fit into other people’s frameworks can leave us feeling more than depleted at the end of the day.
When you are in a flow state, external demands can feel painful, they take even more energy, and may leave you in a state of inertia, unable to do anything and feeling paralysed. Balancing the needs of wanting to immerse yourself in your interests and things that bring you joy, and the demands of work and family that may pull against your inner needs, means you may have even less capacity and even less energy to even know what you need to rest in a meaningful way. The feelings of needing to mask to fit in and juggle and balance your innate inner Autistic monotropic needs with the demands of neuronormative expectations can feel like you are trying to swim upstream; it is exhausting. Meltdowns, shutdowns, or reduced responsiveness can be a form of enforced rest when your body and mind are overwhelmed. Meltdowns and shutdowns are your body and mind in survival mode; they are a sign you need deep, authentic, meaningful rest.
Rest as Resistance
Tricia Hersey, founder of The Nap Ministry, advocates that rest is not a luxury but a form of resistance against oppressive systems that devalue our well-being. She asserts, “Rest is a form of resistance because it disrupts and pushes back against capitalism and white supremacy.”
For Autistic individuals, embracing our authentic ways of resting challenges the internalised narratives that equate our self-worth with neuronormative ideals.
Reframing Rest
Rest isn’t solely about sleep, yoga or other mindfulness-type activities; it’s about creating spaces, creating physical and emotional spaces, and meeting our sensory needs so we can exist without the pressure of performing to society’s expectations and suppressing ourselves. For monotropic people (Autistic/ ADHD), this might involve engaging deeply with our special interests, spending more time stimming, spending more time in your sensory den or simply allowing yourself more moments to be yourself without judgment.
How Autistic & Monotropic Rest May Look Different
The most restful spaces are often those where we don’t have to mask or justify our needs and where we feel safe.
Deep focus on special interests and passions
Society may see this as “work” or “obsession,” but for many monotropic people, being immersed in your flow state with something you are passionate about can be regulating and restorative.
Stimming
Stim vocalising and stim movement, such as rocking, tapping, flapping, or pacing or dancing may seem active, but they are often soothing and regulating, helping to release stress and maintain flow. Stim listening and stim watching can make you feel cosy and safe. They bring predictability and comfort, especially when the world feels chaotic. Resting in motion and stimming can give you back energy and give you more capacity to manage.
Solitude
Rest might mean being completely alone or managing to do your work by using body doubling strategies to help you focus your energy resources more easily and effectively, without the pressures of socialising or working in more conventional ways.
Monotasking (doing one thing deeply)
While multitasking is often celebrated, sustained single focus is how many of us find flow and peace, even if that feels more like a constellation type of thinking, with your mind diving in a million directions as you connect so many things together and doesn’t feel very ‘mono’ at all !
Spending time in dark, quiet, or low-stimulation environments
This sensory rest is vital for decompressing from overload, even if it looks like “doing nothing.” Using this like weighted blankets, ear defenders, and fidget tools are often essential for flow states, not optional extras as they can help you feel safe, regulated and rested.
These are not distractions but often meaningful ways to self-regulate and can be a great way to embrace flow independently or alongside or with others.
Delaying or avoiding communication (texts, calls, emails)when you can
Social expectations can be draining; rest might mean letting people know you prefer to text rather than speak verbally, or you can manage an online meeting instead of in-person.
Non-traditional sleep-wake cycles
Monotropic focus may shift sleep patterns; rest might come at unconventional hours, and that’s okay if you have supportive people who understand you. Find out more about monotropic time in my recent blogs.
Withdrawing from roles, routines, or expectations temporarily
Stepping back from responsibilities may look like avoidance, but it can be intentional self-preservation and help reduce the severity of a burnout crisis.
Talk therapy may not feel restorative.
Many Autistic people find traditional therapy approaches overly verbal, which can further drain energy. Many Autistic people need extra time and space to process thoughts or emotions by ourselves, outside of the demands of conversation and social expectations. Restorative therapy care might look more like body-based, creative, or activities with less emphasis on verbal support (e.g. art, or nature-based therapy may help).
“Going out with friends” may be socially draining, not restful
Socialising, even with people we love, can sometimes increase stress and add to burnout. Rest might mean not attending and connecting in quiet, low-demand ways instead.
Unstructured time without expectation
Just having a safe space where nothing is expected of you can be deeply restful, even if it “looks” unproductive. Rest means breaking free from the pressure to always say yes, even when you’re running on empty.
Rest is More Than a Nap: Reclaiming Rest as Autistic Liberation
Rest, as Tricia Hersey of The Nap Ministry reminds us, is about more than naps. It is a radical, embodied act of refusal. Rest is a disruption of neuronormative grind culture, capitalism, and all the systems that treat human beings as machines. Hersey reminds us that:
“Rest pushes back and disrupts a system that views human bodies as a tool for production and labor. We know that we are not machines.” — Tricia Hersey, Rest is Resistance
For many Autistic people, especially those of us navigating burnout, masking, and a world that often misunderstands our rhythms of being, means that our ways of resting are often misunderstood, denied and even stigmatised. We have been taught to ignore our bodies, to push through overload and to meet neurotypical expectations at the cost of our well-being.
Rest is often more than sleep. It’s more than self-care routines or sensory tools marketed as solutions. Rest is anything that reconnects us with ourselves.Anything that brings our monotropic attention gently back to flow, safety, stillness, or regulation.
Rest for Autistic people might look like silence, repetition, solitude, immersion in a special interest, and a withdrawal from speaking and other expectations. Although society may not recognise these forms of rest as valid, I think they are deeply necessary. They are a reclamation of our authentic Autistic monotropic selves from systems that expect us to perform, conform, and endure.
When we begin to honour our need for rest, not just to “recover” from burnout but to resist the conditions that cause burnout, we can begin to move. Rest becomes liberation. Rest becomes connection. Rest becomes our right.
As Tricia Hersey urges:
“Find ways to connect back to your body and mind. Find ways to intentionally slow down… It is your divine and human right to do so. WE WILL REST.”
Tricia Hersey gives us permission to slow down and let go of shame. She urges us to create community. When you are in safe spaces with people who ‘get you’ and allow you to be your true self, rest comes easier. It can feel like a mutual collective flow that is validating and empowering.
“Create community. Build community. Be community. Community care can seem impossible when you are exhausted. It is possible. Community is anywhere two or more are gathered……don’t rush to do anything alone. To be an escape artist is to. being the collective. Supported in rest, care, and love. Demand the collective as a source of inspiration and change. Real change comes from the people” Hersey, T. (2024). We will rest!: The Art of Escape. Little, Brown Spark. Pg 35
Let us rest.
Let us resist.
Let us reclaim our unique ways of being Autistic.
Some things to reflect on….
1. What does rest mean to you beyond sleep?
How do you define rest in your own life?
Are there certain activities or sensory experiences that help you feel rested?
2. How does being monotropic influence your need for rest (or those you support)?
In what ways does deep focus on specific interests affect energy levels?
Can engaging with your passions serve as a form of rest? Do you feel it helps restore your energy? Can you find ways to make more time for activities and experience that enable you to engage in flow more often?
3. What societal expectations make it challenging for you to rest?
Are there pressures to be constantly productive or social that impact your ability to rest in ways that feel meaningful for you?
How do these expectations conflict with your personal needs for real, authentic Autistic rest?
4. In what ways can rest be an act of resistance for you?
How does choosing to rest and embrace your monotropic ways of being challenge societal norms or expectations?
Can you view rest as a form of self-advocacy or empowerment?
Do you think positions of power and privilege and intersectional issues also affect your ability to rest in meaningful ways?
Murray, D., Lesser, M., & Lawson, W. (2005a). Attention, monotropism and the diagnostic criteria for autism. Autism, 9(2), 139–156. https://doi.org/10.1177/1362361305051398
When Autistic people are in burnout, we’re often told to “rest”, to slow down, take time off and pull back from pressure.
These suggestions don’t work for me as rest doesn’t feel restful when it’s a demand and disconnected from how I naturally think, feel, and process the world as a monotropic person. When I am in burnout I tend to go deep, I worm hole into Deleuzean philosophical podcasts, I read texts that I actually don’t always understand, I dive even deeper to try and make connections and sense. It is a way of regulating, it helps me feel good, I feel immersed and restored, it gives back energy when other things feel like they strip my spoons away. In former years I may have gone on long runs, very long runs, pushing my body and not my mind to it’s limits but my body is now tired…… Ways of resting like this are often shamed. We may be told we are a work-a-holic, indulging in pointless activities and disconnecting with ‘real life’.
For many Autistic people the type of rest that helps us isn’t about switching off, or trying to re-align with other people’s expectations of what rest ‘should’ look like. It’s about going deeper, into the things that hold meaning for us, into the flow of our interests, into the tunnels that carry us back to our temporal monotropic home. Our rest may be more sensory or related to art, crafts, lego, gaming, making slime, splashing in puddles, rearranging collections, or something else, but it is all valid how ever it looks, deep diving into things that we are passionate about helps regulate flow and can bring some joyful glimmers into a life that often feels VERY hard!
Why “rest” doesn’t always feel like rest
Burnout for Autistic people is real, complex, and often invisible due to things like interoception differences, until it hits, intensely. It can come from sensory overload, constant masking, everyday demands that chip away at our energy, and the pressure to keep up with expectations that were never designed with us in mind. When we reach burnout, when we have no more energy or spoons left to mask or push through anymore, well meaning friends often tells us to ‘rest’ and take time off work, but resting isn’t always as simple as stopping. If I can’t do the things that are pulling my attention at that time I am left really dysregulated and it prolongs and intensifies burnout.
Unstructured time can feel disorienting, especially when usual routines fall away, being told to “just relax” or “do something gentle” can feel like more pressure and another demand to mask, especially if those things don’t match how we truly regulate. Sometimes the hardest thing is figuring out how to rest in a way that actually helps you regulate your monotropic flow and needs.
Structure inside unstructured time
In burnout, we often can’t tolerate external demands, but we still need something to hold on to, a sense of structure and a rhythm that gives us coherence when everything feels scattered and chaotic. For myself, that structure often doesn’t come from schedules or to-do lists, it comes from deep immersion.
Many Autistic (and ADHD) people are monotropic, meaning our attention naturally flows toward a small number of interests at a time. When we follow those interests, we’re not just focusing, we’re making sense of the world, finding comfort, and reconnecting with who we are and our authentic needs. It can be rejuvenating and restorative spending time with your passions and leaning into sensory experiences, activities and interests that help you feel good.
In burnout, these interests can become even more important, they give us a place to go when everything else feels too much. They give us structure insidethe unstructured and can help make life a bit more manageable.
Tunnelling
It can be easy to misunderstand what this looks like from the outside. When we tunnel into something , watching the same video on repeat, reading long philosophical texts, researching something niche for hours, people might think we’re avoiding life, or that we’re shutting down. Instead of seeing this as a disconnection with the world and feeling shame, I am trying to reframe it as a way of re-connecting.
Monotropic tunnelling can be a way to feel safe, to make sense of our experience, to process what’s happened in a way that feels manageable. It can be a way of caring for ourselves without needing to explain or perform. It’s a way of resting through depth, we aren’t switching off, we’re switching into something meaningful that holds space for us.
Monotropic time
Time doesn’t always move in straight lines for Autistic people. We don’t all experience time as linear or predictable. It loops, it spirals, it stretches and contracts depending on our energy, our environment, and our focus.
In burnout, time can feel strange, my days blur together, some moments drag endlessly and others disappear quickly. Trying to rest by the clock is hard and stressful. Leaning into monotropic spiral time opens up something different, it gives us permission to return to the same place again and again, to revisit, re-watch, re-read, re-iterate our thoughts and activities. It allows meaning to emerge slowly, even if it doesn’t look productive to others and you may not feel like you are making progress yourself you likely will be. We need to look at wider time frames, look back on weeks ago, years ago and it is then we may be able to see the difference in our repetition.
Reclaiming rest
For some of us, rest comes in the form of lying still, wrapped in silence under weighted blankets with fairy lights and candles burning. For others, rest may be movement, of our bodies, of thoughts, patterns, language, sounds. For many we may combine all of this and fluctuate between various states trying to get all the points on our spiky profiles aligned .
Regulation doesn’t always mean quietness or disengagement from work or traditional mindfulness activities that are so often suggested by therapists. Here are a few examples of how rest might look different for Autistic/ ADHD/ Monotropic people:
Immersing in a deep interest or sensory experience
Stim-watching or stim- listening to something familiar over and over
Revisiting a thoughts, questions, wanderings and half done projects
Researching a niche topic until the world feels more coherent and you feel that ‘just right’ sensation
Stimming and letting the rhythm bring calm and regulate flow
These aren’t distractions from rest or healing, they are rest and can help us heal, especially when they’re done on our own terms, at our own pace. Rest doesn’t have to mean stepping away from everything that matters to us. It can mean stepping more fully into it. It can mean honouring what actually restores us, even if it looks different from what others expect.
We can rest by allowing ourselves to spiral, to tunnel, to be nonlinear. To return to what we love without guilt, to make space for our bodyminds to move the way they want to move. We shouldn’t need to explain why something feels regulating, if it works, it works, and if flow feels good then embrace it!
We need to reclaim neurodivergent ways of resting from a system that doesn’t understand our rhythms. We need to create spaces where rest isn’t something separate from who we are, it’s something woven into the way we live through our in -person and on-line communities in practices such as body doubling, co-regulation and interdependent ways of being.
Embracing deep flow
Burnout can feel like everything is falling apart, but it could also be seen as a threshold , a place where we can pause, listen, and reconfigure, not to become someone else or mask to fit in, but to return to ourselves. We may need to stay in our monotropic flowy attention tunnels even longer than others expect, we may need to go deeper. We may need to let go of timelines, checklists, and expectations that don’t fit.
If you’re in burnout and feeling like conventional neuronormative based advice doesn’t work for you, you’re not failing, you’re not broken, you’re moving with a different rhythm, one that makes sense to your body, your mind, your way of being and that is valid.
Sometimes rest isn’t about pulling away, it’s about going deeper in and embracing our monotropic flow.
Seeing and feeling the blank looks and Double Empathy Problem (Milton, 2012) at a really extreme DEEP level and still desperately trying to explain how you feel is exhausting!
Writing 100,000-word text messages to your friends and colleagues to try and justify and validate why you can’t do something or why you have done it the way you have because you’re monotropic and don’t want to miss out on any details is a very real thing!
Being with people who understand and “get it” is validating and important.
We all need a base camp. A base camp is a niche place of safety and radical inclusion. It is a safe place where you can be yourself and explore your identity, a space where people ‘get you’, where there is a more level playing field of shared life experiences from which to form friendships and explore new terrain. A base camp is a validating space where people encourage you to be you and even expand your version of yourself. A space where different ways of communicating, moving and different sensory experiences are validated and where co-regulation is a foundation stone that enables inter-dependence and independence.
Base Camps come in many forms: families, face to face community groups and also online communities.
In collaboration with Stimpunks, I have been exploring Neuroqueer Learning Spaces. These primordial learning spaces enable everyone to thrive in their own authentic, unique ways. They provide a basecamp from which to explore and learn with others in your own way in your own time and in a space that is comfortable.
The three primordial learning spaces comprise of Campfires, Watering Holes and Cave Spaces:
Caves:Space for quiet reflection, introspection and self-directed learning. A private space to transform learning from external knowledge to internal belief. Home of reflective construction.
Campfires: Space for learning with a storyteller, an elder or from others. Education facilitators need to subvert neuronormativity actively. They need to embark on their transformative neuroqueer journey so their re-storying can inspire neuro-cosmopolitanism.
Watering holes: Space for being with peers and social learning in validating neurodivergent ways by embracing parallel play and body doubling experiences. Community enables thoughts and ideas to expand rhizomatically. Valuing differences and unique strengths expands creativity into new horizons and can create a collective flow full of potential.
Find out more about Neuroqueer Learning Spaces and also discover Stimpunks Learning Pathways on their website. Learning Pathways are nestled within the online rhizomatic forest of the Stimpunks website. Learning Pathways is a free, open-access online tool set up to support and guide you on your journey of self-discovery. It provides the tools to help empower you as an autistic, disabled or otherwise marginalised person to self-advocate for your needs and promotes agency and autonomy.
A learning pathway is a route a learner takes through a range of pages, modules, lessons, and courses to build knowledge progressively.
Pathways don’t need to be traversed in order. Pick what looks interesting. Choose your own adventure.
Kieran Rose (2018) describes autistic burnout as a ‘crash where you keep on crashing’. This resonates deeply.
I have experienced cycles of burnout throughout my life due to systemic unmet needs living as an autistic person in a world primarily designed for non-autistic people. The double empathy problem (Milton, 2012) is real, and as explained in my previous blogs, it is extreme and DEEP (Edgar, 2024). The Double Empathy Extreme Problem arises from feelings of disconnect; not only from cultural, sexual, political, religious, neurodivergent, or any other cross-section of differences but also through embodiment, or lack thereof.
I have been reflecting on my persistent cycles of burnout and why my body and mind never feel fully recovered, rested and restored no matter how much sleep I get or what I try. I have always had a busy family life and career as a teacher, but as an autistic person, I do not see or feel a boundary between myself and my environment; I feel a deep attunement to the space around me. However, I also feel a deep disconnect with the majority of society and the pressures of feeling I need to conform to dominant social norms that have always left me on the edge, feeling separate and, in many ways, disembodied and shattered into millions of fractals, it has left my soul feeling burnt-out.
Neurodivergent Rest is Different
Autistic and neurodivergent rest is different from neurotypical rest. The recommended recovery strategies for the majority of neurotypical people who are in burnout (and often also experiencing depression) are to try to engage more with others, to try and do more exercise, have a better diet, to try and join in more with the group activities and to generally be more active and engaged in society. This doesn’t work if you are autistic. Such strategies have left me with less capacity and a feeling that I am falling deeper and deeper into a void and becoming even more disembodied and disconnected, it has left me with even less energy to function and get through life.
Autistic ways of recovering typically involve giving yourself time and space to be yourself, to stim more, to engage in your monotropic interests, and to create more flexibility in your life so you can embrace your own autistic way of communicating and socialising rather than trying to ‘fit in’ to others’ expectations. Research led by neurodivergent teams is especially valuable in exploring ways to support those experiencing burnout. Research led by people who are also autistic or otherwise neurodivergent adds to the narrative of recognising and validating the inner experience of autistic people.
If you are experiencing burnout, a deeper understanding of autism and learning to embrace your own authentic autistic identity can provide ways to help give your body and mind authentic and meaningful ways to rest, recharge and recover. Learning more about theories such as monotropism (Murray, 2005), discovering more about the sensory system and how an understanding of the interoception system works is vital and can help enormously; it can bring a much-needed sense of meaning to life.
Research demonstrates how a better understanding of autistic identity can support wellbeing. It can help the healing journey for those in burnout and provide ways to help prevent cycles of burnout. It is valuable research, but it is not enough. If your soul feels burnt out, it will need more than this.
Burnout and Souls
I have realised what is missing from all the literature I have read about autistic burnout is how burnout affects our soul.
What do you do when your soul feels burnt out, broken into a thousand fractals, heavy and exhausted?
How can we help our souls recover from living in a prolonged state of persistent burnout?
I am describing the type of burnout and life circumstances where you can’t ever get the solitude you know you need and that you crave so you can heal. I am talking about the type of burnout and life circumstances where you don’t have the freedom to be yourself, unmask, stim, and embrace your monotropic interests for extended periods of time that you know you really need.
What do you do when you have family, work, other health difficulties and commitments that impact you?
What do you do when you can’t always get the prolonged flowy time that you know your body, mind, and soul need to really rest and recover?
Autistic Collaboration
The recent research carried out by Jorn Bettin and the Autistic Collaboration team shares devastating statistics of the inner experiences of autistic and marginalised people trying to survive in the world today:
Our individually unique nervous systems and sensitivities develop and evolve over the course of our lives. 85% of neurodivergent adults often or always feel overwhelmed and misunderstood, and over 60% often or always feel disrespected and unsafe. Our overall sense of wellbeing is determined by alignment between our sensitivity profiles and the ecology of care we are embedded in (or not).
For the experience in workplace environments, our global survey results show that non-marginalised employees experience the culture in typical workplace settings as “normal”. In contrast, employees from marginalised population segments feel much less safe and welcome at work.
Over 40% of employees are often or always afraid to be their authentic self when interacting with “superiors”, and over 25% of employees are often or always afraid to be their authentic self when interacting with peers.
Amongst employees who identify as neurodivergent, 70% are often or always afraid to be their authentic self when interacting with “superiors”, and over 40% are often or always afraid to be their authentic self when interacting with peers.
The experience of being at the receiving end of internalised ableism starts at a young age in powered-up family structures and education environments.
Amongst neurodivergent children, 90% are often or always afraid to be their authentic self at school, and close to 70% are often or always afraid to be their authentic self within their families. Furthermore, over 90% of neurodivergent children often or always feel overwhelmed and misunderstood, over 80% often or always feel disrespected, and over 70% often or always feel unsafe.
It is not always easy or even practical for many people to completely ‘opt out’ of what Bettin describes as the hypernormative and traumatising life path of “modern civilisation”. Feeling trapped can make life even more difficult, suffocating and isolating, it can feel like there will never be a way out from a full burnout. It can feel scary to think you will always be living in survival mode.
There are many people living in this situation, we have to try and hope so we can keep moving onwards. There may never be an opportunity for the deep, extended rest we know we need, and there may never be enough safe spaces to unmask and truly be our authentic selves, so we have to find other ways to somehow carry on, we have to look for the little glimmers in life, reconnect with nature find comfort in the elements around us in whatever ways we can, in whatever small moments of time we can capture between everything else life throws at us.
Connecting with others who share similar experiences is one way of validating the depth of this type of burnout. The autistic, disabled and neurodivergent community provides connections that offer a healthy ecology of care through shared lived experiences with others who ‘get it’ this is invaluable. The disabled and neurodivergent community is more than a community of activists; it provides a lifeline for those who are living in perpetual survival mode and offers solidarity, empathy and a feeling of belonging. The neurodivergent community offer a safe space where the DEEP double empathy problem is dissolved and where love and friendship can flourish.
Reconnecting with nature and taking little moments to recognise the glimmers of joy in life, even when it is REALLY hard, can provide nourishment in small ways to help keep you going from moment to moment. Connecting with others and trying to find ways to explore the expansion of our bodyminds may help some people (neuroqueering / neuro-holographic ways of being) may provide some breathing room and give hope. Carrying on in survival mode for so long is not sustainable. We have to find other ways to keep moving and nourish our souls before the bodymind can even begin to heal. We need love and friendship, radical acceptance and inclusion, and deep empathy to restore our souls.
Murray, D., Lesser, M., & Lawson, W. (2005b). Attention, monotropism and the diagnostic criteria for autism. Autism, 9(2), 139–156. https://doi.org/10.1177/1362361305051398
Quantumness tends to prosper in very cold systems that are carefully isolated rather than part of a tepid soup awash with other activity.” (Lewton, T. 2024)
This may be a weird take, but … I think we could use the idea of quantumness and reframe it around an interpretation of marginalised groups living on the edges of society, in the liminal zones. Those who are feeling deeply disconnected, isolated and frozen in a system that is not designed for us or meeting needs. This is highlighted by AutCollab’s recent research where they shared:
Our individually unique nervous systems and sensitivities develop and evolve over the course of our lives. 85% of neurodivergent adults often or always feel overwhelmed and misunderstood, and over 60% often or always feel disrespected and unsafe. Our overall sense of wellbeing is determined by alignment between our sensitivity profiles and the ecology of care we are embedded in (or not). (Jorn Bettin, Aut Collab 2024)
Collectively, our isolation can transform into something positive by our neuro-holographic energy coming together to enable neuroqueer transformations at a personal and also mass cultural level.
Disconnect at DEEP Levels in Liminal Spaces
As an autistic person, I do not see or feel a boundary between myself and my environment; I feel a deep attunement to the space around me. However, I also feel a deep disconnect with the majority of society and the pressures of feeling I need to conform to dominant social norms that have always left me on the edge; feeling separate and in many ways disembodied and shattered into millions of fractals. I experience the Double Empathy Gap (Milton, 2012) at an extremely deep level of intensity. The double empathy problem creates a gap of disconnect experienced between people due to misunderstood shared lived experiences. It is “a breakdown in reciprocity and mutual understanding that can happen between people with very differing ways of experiencing the world.”
I feel that as a society, those already marginalised are at risk of becoming even more disembodied, the double empathy gap is growing. In many ways, we are losing our primordial affinity with nature and drifting further from coherence, harmony, and the humanised ecology of care that we need. The double empathy problem feels extreme, it feels deep; it is what I have been describing as DEEP (Double Empathy Extreme Problem (Edgar, 2024).
The DEEP (Double Empathy Extreme Problem ) arises from feelings of disconnect, not only from cultural, sexual, political, religious, neurodivergent, or any other cross-section of differences but also through embodiment, or lack thereof. The double empathy gap is non-linear; it is deep, multidimensional, rhizomatic, and holographic (Mirra, 2023). DEEP could be a huge contributing factor that leads to burnout, ill health and is pushing people further out so they feel they are living on a knife edge just to survive. The DEEP gap can break people at their core, leaving them fragmented, disconnected, disoriented and disembodied, feeling like they’re falling into the void between spaces.
The DEEP problem may be intensified by being monotropic (Murray et al., 2005) and using most of my energy resources to zoom into these feelings and ways of being. This enables me to not only see the details, the harm, and the injustice but also to feel it in multidimensional synesthetic ways in how I see, feel, hear, move, and connect. All of these experiences merge and entwine in holographic ways.
I have been chatting to Dawn Prince-Hughes who is a lead in the CASY (Cultural Autism Studies at Yale) team, they describe similar thoughts and elaborate;
Because our [autistic] sensing mechanisms are super sensitive and often synesthetic (cross-sensing — for example, tasting colors or seeing sound) we often feel a part of the things around us. We don’t tend to see in hierarchies, but rather in “holograms,” as described. Always looking for connecting patterns in an overwhelming ocean of sensory, emotional, and energetic information, our relational culture focuses on how things go together and function. (Dawn Prince-Hughes, 2024)
Neuro-Holographic Communities
“Autistic culture is a unique phenomenon; it is constantly in the process of exploring itself, defining itself, and generating itself. Unlike holistic (non-autistic) culture, it is deeply relational. For many autistic people there is no strict boundary between self and environment, or self and other. We tend not to see things in hierarchies, but in relational ways that are in constant flux. “Neuro-Holographic” is an emergent idea that our group has embraced. Neuro-Holographic, as a concept here, refers to the idea that every small bit of energy and information, whether an atom or the universe, reflects every other part of itself in a seamless and meaningful way.” (Dawn Prince-Hughes, 2024)
In my previous blog, I intentionally used a hyphen between the words neuro and holographic to represent the in-between of neurology and holographic ways of being and experiencing the world, a pause for tuning in, an embodiment, a space of Ma. I have resisted using the word “neuro-holographism as that could imply another new theory or concept. Neuro-holographic is not a concept; rather, I feel like it IS the plane of immanence on which neuroqueer theory breathes and lives; it is the ‘wave that rolls and unrolls’ other concepts (Deleuze & Guattari, What is Philosophy, 1994, p36). To resonate with the term neuro-holographic is to resonate with each other as human souls, to be embodied with your core self, perhaps with your spirit, and to be open to holographic connections with others.
Quantum Entanglement
Nerve fibres in the brain could produce pairs of particles linked by quantum entanglement. If backed by experimental observations, this phenomenon could explain how millions of cells in the brain synchronise their activity to make it function.
“When a brain is active, millions of neurons fire simultaneously,” says Yong-Cong Chen at Shanghai University in China. Doing so requires even distant cells to coordinate their timing, which has led some researchers to wonder if this coordination could be due to what Einstein called “spooky action at a distance” — the instantaneous communication that occurs between particles linked by quantum entanglement. “If the power of evolution was looking for handy action over a distance, quantum entanglement would be [an] ideal candidate for this role,” Chen says.
……Once the brain creates entangled photons, the property of entanglement could be passed onto other parts of neurons, like the protein pores that play a role in electrical signalling across the brain, says Chen. When any two objects are quantum entangled, changes in one immediately cause changes in the other — so if different parts of the brain were entangled, they could synchronise much more quickly than through any other type of connection.
All of these factors mean that autistic people’s interoception system and exteroception system will entangle and respond differently too. Neuro-holographic people have strong open sensory gates. In our communities, we are finding neuro-holographic people are being drawn together; their holotropic energy fields seem to align with others of a similar frequency, fusing together and creating connections in all different spaces across the globe in weird and beautiful ways both online and in person. People are being led by their heart, their soul, their inner true intrinsic self and way of being and discovering that they are not alone, weirdness is ok and can be embraced.
Annie Murphy Paul in The Extended Mind: The Power of Thinking outside the Brainshows that bodily knowledge (interoception) can be more accurate, for instance in the work of day traders who must juggle huge amounts of information very rapidly, than conscious analysis of explicit data. “The heart, and not the head, leads the way,” she concludes.11 Leslie Shelton puts it bluntly: “Emotion is the master over cognition.” (Blum, S. D. 2024)
Beautiful Holographic Potential and Created Serendipity
The online community favors and enables this unique energy and connections to synchronise, entangle, fuse, form and reform and enables potential to expand rhizomatically, holographically. People and communities that are embodied and intune with each other can create serendipity. The more connected and embodied you are, the more connections form and the stronger the hologram and holographic community becomes. Each node of the hologram is a community where collective energy is created and multiplied, it enables increasingly expansive new serendipity and possibilities to emerge. It allows us to lean into and embrace neuroqueer theory (Walker, 2021) and neuroqueering possibilities.
When people feel validated, they can validate the experience of others; a sense of safety is created between people where there is trust and mutual understanding. This enables stronger connections to form in community clusters, at the nodes, which works to strengthen the rhizomatic neuroqueer network. People are in a better safer place to unravel, de-mask, and dearmour themselves from the restraints of trying to live up to neuronormative ideas when they feel they can trust and connect with those around them. Safe spaces enable radical inclusive ways for people to be themselves, so they can explore their own ways of being without stigma and without fear of prejudice. Perhaps it is only through enduring a life living in the liminal and on the edges that we can truly embrace or feel the potential of Walker’s neuroqueer theory and value the potential neuroqueering?
After years of isolation and existing in survival mode on the side lines of the liminal parts of society some people are naturally finding their energy is gravitating towards certain people and spaces. Like myself, they are connecting with others who resonate with them in small community groups which are all connecting rhizomatically. Community provides a sense of meaning to life and validates what may previously have felt like a very disconnected, disembodied, chaotic existence. “Our overall sense of wellbeing is determined by the health of the ecology of care we are embedded in, by our sensitivity profiles, and our (in)ability to resolve cognitive dissonance.” (Jorn Bettin, AutCollab, 2024)
Persistent positive experiences (over months, years, decades) in the social and ecological environment beyond the human that allow us to feel understood and loved, i.e. experiences with non-judgemental animals and people with compatible sensitivity profiles — such positive experiences allow us to incrementally let go of internalised ableism, and they teach us how to nurture trustworthy de-powered (non-coercive) caring relationships with other living beings. (Jorn Bettin, AutCollab, 2024)
At a human scale, some ideas of quantum biology and quantum physics resonate with neuro-holographic concepts and ways of being. The beauty lies in the fact that the word neuro-holographic can only be felt or experienced in an undefinable, iridescent way as we are talking about energy, tiny particles of ourselves that can’t be seen or observed but are alive and seeking connections. Holographic energy is full of light and vibrations that can expand and ripple far beyond our own bodyminds to connect with others who are vibrating at a similar frequency. The fusion of this collective energy creates multiplicity and is ever-expanding, entwining, and merging with others, expanding each individual’s potential to challenge and subvert harmful systems and ways of being and discovering neuroqueer ways of embracing life in multidimensional ways. It brings people together to create ecologies of care, communities based on deep understanding, love and acceptance.
When people experience deep emotionally engaged thinking about complex issues, they are literally playing out that thinking process, our data would suggest and now many other sources of data would suggest, on the substrate of the cortisone cortical regions that literally also are feeling your guts.
Poets have had it right all along. (Immordino-Yang, 2024)
Connecting with others and following your intuition and your internal vibes or gut feelings in safe spaces enables people to explore emerging thoughts, to be open to explore the ‘perhaps’, the ‘may be’, the ‘could be’ and possibilities that ‘might happen’ if we truly embraced the neurodiversity paradigm and neuroqueer theory in creative ways, it enables awe and wonder and feelings of belonging. It enables our community rhizomes to expand into spaces full of radical, inclusive neuroqueer possibilities.
Opening up discussions and sharing lived experiences helps to bridge the deep double empathy gap. “A de-powered and less materialistic life is beneficial for our physical wellbeing, and that a socially de-powered life at human scale is essential for our mental wellbeing”(Bettin, 2024). We need to embrace the potential of quantum entanglement and it’s outcomes, it enables us to create new planes and plateaus to live together in our own authentic ways so we can keep holographically neuroqueering ourselves and the spaces we are in to create radically inclusive communities together.
Human Restoration Project. (2024, August 2). Keynote: Dr. Mary Helen Immordino-Yang | Solving the Frankenstein Problem[Video]. YouTube. https://www.youtube.com/watch?v=FUG_ATjjiw4
Murray, D., Lesser, M., & Lawson, W. (2005a). Attention, monotropism and the diagnostic criteria for autism. Autism (London), 9(2), 139–156. https://doi.org/10.1177/1362361305051398
Prince-Hughes, D. (2024). Cultural Autism Studies at Yale — A meeting place for those interested in the exploration, identification, generation and preservation of autistic culture.https://culturalautismstudiesatyale.space/
Walker, N. (2021). Neuroqueer heresies: Notes on the Neurodiversity Paradigm, Autistic Empowerment, and Postnormal Possibilities.
Milton (2012) defines the double empathy problem as follows:
“A disjuncture in reciprocity between two differently disposed social actors which becomes more marked the wider the disjuncture in dispositional perceptions of the lifeworld — perceived as a breach in the ‘natural attitude’ of what constitutes ‘social reality’ for ‘neuro-typical’ people and yet an everyday and often traumatic experience for ‘autistic people’.”
I feel we are moving further away from embodied connections with each other; we are losing our primordial affinity with nature and drifting further from coherence, harmony, and the humanised ecology of care that we need (Bettin). The double empathy problem feels extreme, it feels deep; it is what I have been describing with my peers as DEEP (Double Empathy Extreme Problem).
The DEEP (DOUBLE EMPATHY EXTREME PROBLEM) arises from feelings of disconnect; not only from cultural, sexual, political, religious, neurodivergent, or any other cross-section of differences but also through embodiment, or lack thereof. The double empathy gap is non-linear; it is deep, multidimensional, rhizomatic, and holographic (Mirra, 2023). DEEP could be a huge contributing factor that leads to burnout and ill health. The DEEP gap can break people at their core, leaving them fragmented, disconnected, disoriented and disembodied, feeling like they’re in a void space.
Bodyminds is a term used to challenge the idea the body and mind are experienced separately (Descartes). Walker (2021) expands on this idea by explaining:
“Mind is an embodied phenomenon. The mind is encoded in the brain as ever-changing webs of neural connectivity. The brain is part of the body, interconnected with the rest of the body by a vast network of nerves. The activity of the mind and body creates changes in the brain; changes in the brain affect both mind and embodiment. Mind, brain, and embodiment are intricately entwined in a single complex system. We’re not minds riding around in bodies, we’re bodyminds.”
Phenomenologists believe that embodied attunement is an essential, core aspect of our experience of and in the world. Through embodiment, we are able to navigate the maps, the caverns, pleats, and folds (Edgar, 2023) of our lives and perhaps, create new maps in more meaningful ways.
“In phenomenology, embodied attunement refers to how individuals experience the world through their embodied interactions with the environment. This includes the physical, sensory, and emotional aspects of our interactions with the environment. Embodied attunement involves a reciprocal relationship between the body and the environment, where the body is attuned to the environment and the environment is attuned to the body (Merleau-Ponty, 1962; Varela, Thompson and Rosch, 2017; Gallagher and Zahavi, 2020; Gallagher, 2022)”.(cited in: Hipólito, I. & White, B., 2023)
There is a gap between those who are intune with their own bodyminds and the bodyminds of those they are with and people who are dis-embodied, (regardless of any intersectionality and other empathy gap that may be present). As Walker (2021) says;
“Mind is inextricably entwined with brain, and brain with body; thus, mind is inextricably entwined with body in a single complex system and in a continuous dance of mutual shaping.We’re not minds riding around in vehicles of flesh and bone; we’re bodyminds, bodies that think and perceive. Experience, awareness, sense of self, psychological development, and capacities for feeling, knowing, cognition, connection, and action are all entwined with — and shape, and are shaped by — habits of bodily usage, including habits of movement, posture, breath, contact, consumption, tension and relaxation, gaze, gesture, and expression.”
I am learning to be more embodied through somatic practice and connecting with other people exploring these ideas across various communities. The work of Kay & Dan Aldred (2023) about Embodied Education demonstrates how embodiment is essential for individuals to thrive, we need somatic practice embedded into the ways our education and healthcare systems operate and evolve, we need people to be deeply intune with others, embodied, so they can transform and work more meaningfully.
We need to carve out time to embody ourselves in the world around us, reorient ourselves, realign ourselves, our past, connect with nature, embrace the rhythms and cycles in water, on earth and in the air and sky around us to fire and energize our bodyminds. We need to take moments to breathe so we can recharge and gather the force we need to move, to transform and to neuroqueer ourselves and our spaces.
Neuroqueering is a verb; it is an act of doing and transforming intentionally through the bodymind. To neuroqueer is to seek out the gaps, the in-between liminal spaces where disconnect lingers. We need to look for opportunities within the cracks of broken systems and broken relationships so we can transform. I am finding these spaces within various online communities in the Dark Forests (Boren, 2024) of the Autistic Rhizome (Gray-Hammond, 2023), where perhaps there is a natural gravitation towards exploring these ideas due to people feeling marginalised, disconnected, and disembodied from society because of the DEEP double empathy gap caused by neuronormative society, prejudice and ableist systems.
I am trying to find spaces of Ma (pauses of potential inbetween people, objects, places and experiences) to find creative ways to liberate my bodymind from neuronormativity, I am seeking potential in the spaces in between to make positive, radically inclusive change through my work with Ryan Boren (Stimpunks, 2024) as part of our Neuroqueer Learning Spaces Project. It feels like ripples are happening, slow change is occurring, conversations are opening up, serendipity is flowing, and the potential of a neuroqueer-embodied future is beginning to transform more spaces.
References:
Aldred, K. L., & Aldred, D. (2023a). Embodied education Creating safe space for learning, facilitating and sharing.
Walker, N., & Raymaker, D. M. (2021). Toward a Neuroqueer Future: An Interview with Nick Walker. Autism in Adulthood, 3(1), 5–10. https://doi.org/10.1089/aut.2020.29014.njw
Walker, N. (2021). Neuroqueer heresies: Notes on the Neurodiversity Paradigm, Autistic Empowerment, and Postnormal Possibilities.
I am autistic and monotropic, and I am interested in exploring Helen Mirra’s theory of holotropism (2023) and how this may impact flow states and regulation. Holotropism synthesises the theory of monotropism (Murray, 2005) with deep ecology and holistic anatomy. Holotropism is a:
“multi-dimensional, spacious, edgeless terrain under the monotropism map…To be holotropic is to have wide open sensory gates. To participate in/as the immense world without becoming overwhelmed, we holotropes have two central methods: in, by hyperfocusing our attention on one sensory or cognitive path, and as, through synthesising our experience into coherence. A sense of wholeness occurs through these processes — less consciously in hyperfocus, more consciously in coherence.” (Mirra, 2023)
Flow & Monotropism
“Monotropism is a neurodiversity-affirming theory of autism (Murray et al. 2005). Autistic /ADHD/ AuDHD people are more likely to be monotropic (Garau et al., 2023). Monotropic people have an interest-based nervous system. This means they focus more of their attention resources on fewer things at any one time compared to other people who may be polytropic. Things outside an attention tunnel may get missed and moving between attention tunnels can be difficult and take a lot of energy. Monotropism can have a positive and negative impact on sensory, social and communication needs depending on the environment, support provided and how a person manages their mind and body.” (Edgar, 2024). Flow states are an intrinsic part of a monotropic person’s experience when engaged in their passions and deeply immersed in their interests.
Csikszentmihalyi was interested in finding out about flow states and intrinsically rewarding ways of being. He was interested in how and why people became engaged, not for external rewards, “not as compensation for past desires, not as preparation for future needs, but as an ongoing process which provides rewarding experiences in the present.” His research concludes that happiness is an internal state of being that can be achieved through flow.
He suggests one of the main elements of flow is the merging of action and awareness. For flow to be maintained, he says, “one cannot reflect on the act of awareness itself. When awareness becomes split so that one perceives the activity from ‘outside,’ flow is interrupted… These interruptions occur when questions flash through the actor’s mind: ‘Am I doing well?” What am I doing here?’ … When one is in a flow episode … these questions simply do not come to mind.”
Being in flow can be a joyful, happy state, but you can’t will yourself into a flow; there has to be a desire and interest that leads you there, perhaps a sense of wonder that draws you into a space you are comfortable with to explore your passions further. For Autistic/ ADHD people who are monotropic, it may be that they find it easier to enter a deep flow state when engaged in their monotropic interests; it may feel more satisfying and intense, all-consuming as more energy and attention resources are processed into fewer channels than for polytropic people. In a sensory deprivation tank, with no external stimuli, you are left with your bodymind and following the desire lines of your thoughts into unknown spaces, spaces that perhaps can’t be accessed otherwise. A deep flow state emerges from a sensory deprivation experience that leaves an openness for uninterrupted thoughts and sensations of just being in the moment and an expansion of the mind. A sense of freedom and weightless-ness not just of the body floating but of the mind too.
Flow states may be more intense for monotropic people; this can be positive and negative. It can be highly regulating when the flow is positive but also dysregulating when it latches onto something negative. Being monotropic it may enable easier access into a flow state as there are fewer attention channels to compete with resources and input. Being in a flow state can be a way of self-regulating, but it may also be the reason why other things are more difficult, such as switching attention to new tasks. Being in a deep flow may leave people in a state of inertia, immersed in cycles of looping concerns (Hallett, 2021) and feeling ‘stuck, with no way out’ (Buckle, 2021).
Floatation and Flow
Hutchinson and Perry (2003) explored Csikszentmihalyi’s flow theory through the experience of floatation tanks (also known as sensory deprivation tanks). They suggest that the unique experience of a floatation tank is a “specific and reliable creation tool. On the whole, floaters seem to experience flow every time they enter the tank. Even better, they experience that most elusive and pleasurable thing: long periods of pure, uninterrupted flow. One reason the tank has this unique effect is that it is both experience and environment.”
If you are monotropic, life is likely to feel very intense due to the way you process everything from sensory stimuli and social interaction and the ways you navigate the demands of everyday life, always needing to divide attention and tear yourself away from the pull of your monotropic passions, the pull likely feeling very strong at times due to the feeling of flow it may create. When you are in a floatation tank, there are no other demands; there is no sound, no discernable scent, and no other desire or stimuli to spark interest. As the salt water is body temperature, the physical body seems almost to dissolve or melt away as it becomes one with the water. With no other stimuli, it may feel like the body and mind become a pure bodymind, a oneness with the water and environment. As Hutchinson says (2003, p111), “When you are floating, there is nothing in the tank that happens that is not you.”
Hutchinson draws on Csikszentmihalyi’s work by discussing “narrowing the field of consciousness. Floatation tanks are perfect environments for consciousness to expand, enabling one to be purely in the moment. For autistic/ADHD people, noise, lights, scents, people, demands and any external stimuli can overwhelming at times; with all this eliminated, you are left to just be. You close the lid, and there is a nothingness around you, waiting to be filled with thoughts or to absorb you in deep rest.
The saltwater is at body temperature, so once you are floating, there may be no definable awareness of where your body starts or ends. It may feel like it is dissolving into the space around you. This may invoke a hyper-awareness of the physical self; with no other stimuli, all you can focus on is breathing and the sensation of every muscle movement you may not have noticed before when not floating. After a time, even the feeling of having a body may dissolve as the mind expands and fills the space, or it may feel like the nothing-ness is filling you, enabling deep profound regulation, restoration and rest.
Profound Rest and Regulation
With no external input, there is an opportunity for an increased awareness and coherence of everything happening within your bodymind at a much deeper level; a sense of wholeness may be achieved as you are no longer splitting attention and fragmenting. It may feel safer as the environment is predictable, and all external unexpected lights, sounds, movements and social interactions are eliminated for the duration of the float; it can feel liberating. Time itself seems to expand as there is nothing except the self and breathing to impact or give reference to the passing of time. An hour in a floatation tank could feel like anywhere between 10 minutes to 10 hours, depending on the experience. It can be the most deeply restful state to be in, free from everything, it allows a sense of autonomy and a chance to gain control of thoughts without anything external impacting or distracting you. Mirra suggests that;
“If hyperfocus is flow, coherence is profound rest…If we are only cycling between hyperfocus and disruption of hyperfocus, our bodies as whole systems are neglected. Regular periods of coherence are, therefore, mandatory for our well-being. As we practice with coherence, over time, we may choose more time in coherence and less in hyperfocus. (De-centrating rather than concentrating.)” (Mirra, 2023)
Csikszentmihalyi observes that a person can only achieve flow when the environment is right and they feel in control and safe. For a monotropic person, life may feel intensely overwhelming; constantly having to divide limited attention resources to manage the multiple demands of life is utterly exhausting. Floatation experiences may help to give moments of control and help with regulation and rest, the effects often ripple through the bodymind for days afterwards, feeling revived and having a better balance.
When a person is floating, it can enable a natural flow state. It may feel completely liberating for some autistic monotropic people with no external demands and no sensory stimuli competing for attention resources. It allows the bodymind to return to a natural way of being and to expand enabling new thoughts and possibilities to emerge. The expansion of the body and mind creates a space for recovery and regulation to take place in ways that are not possible in real life when not floating. Floatation experiences may allow monotropic, holotropic people to safely enter “multi-dimensional, spacious, edgeless terrains under the monotropism map” (Mirra, 2023), this could allow the sensory gates to open further without becoming overwhelmed and enable much-needed profound rest from what can be a very overwhelming world.
References
Csikszentmihalyi, M., & Csikszentmihalyi, I. S. (1992). Optimal experience: Psychological Studies of Flow in Consciousness. Cambridge University Press.
Hutchison, M., & Perry, L. (2003). The Book of Floating: Exploring the Private Sea.
Murray, D., Lesser, M., & Lawson, W. (2005). Attention, monotropism and the diagnostic criteria for autism. Autism (London), 9(2), 139–156. https://doi.org/10.1177/1362361305051398
In Neuroqueer Heresies, Nick Walker (2021) describes embracing neuroqueering as a verb. When considering Neuroqueer Learning Spaces, we need to reinterpret, rethink, redefine, and reimagine what those spaces may look like and the journey required to be able to facilitate them. We are considering whether we can use the template Walker created for designing autism courses as a template for imagining neuroqueer learning spaces. It has prompted us to question the differences between being neurodiversity-affirming, having everyone’s needs met, and then stretching those possibilities into neuroqueer learning spaces that enable unknown potential to flourish. Once you are free from the reigns of neuronormativity, the learning possibilities of radical inclusivity with cognitive and somatic liberty will be endless.
Yunkaporta (Sand Talk, 2020) talks about being a ‘strange attractor‘ (pg82), which seems very much in line with neuroqueer ideology. To be a strange attractor in education means taking a risk and disrupting the order and current system. There is enormous negativity around words such as risk, anarchy and chaos, but as Yunkaporta reminds us, chaos means having no structure and being rhizomatic, and anarchy means having ‘no boss’. He asks if we could have a structure without a boss or management system. Neuroqueer learning spaces need to be de-hierarchical; we need a community of people, not masters and students. We need empathy, trust, and mutual respect for the uniqueness everyone can bring to adults and children’s learning environments. Deep learning is rhizomatic; it does not happen linearly.
The current education system is causing so much harm to so many young people whose needs are not being met; their mental and physical health is suffering as a consequence, with some having no access to any meaningful education at all. If the current system isn’t working, tightening the reigns further on behaviour and attendance policies isn’t going to help; it will cause more harm. We need to create spaces where words like normal, typical, and even divergent become irrelevant so children feel safe to be themselves and can learn in ways that enable their bodyminds to be liberated.
Audre Lorde (1982) says, “Revolution is not a one-time event. It is becoming always vigilant for the smallest opportunity to make a genuine change in established, outgrown responses…”. Neuroqueer environments are spaces for everyone to be neurodivergent, to be constantly evolving and expanding and reimagining themselves. We need to look for the slightest opportunity to make a change and find possibilities for playing, learning, exploring and opening up curiosity.
Being engaged, curious, playful and able to explore and move freely are essential components of learning to which everyone should be entitled. This is also reflected in the work of Alexander (Play Radical), who wrote a beautiful and inspiring Playful Manifesto. Their aims echo what we’d like to include in our own Neuroqueer Learning Spaces Manifesto;
“Create space to celebrate and recognise the infinite ways we play, communicate, and relate to each other as children and adults. And, in particular, lift those types of play that are often unseen or ignored and ways of communicating or relating that are often not valued by wider society.“
We are forming the beginning of our Open Framework for Neuroqueer Learning Spaces on the work of Walker’s (2021, pg144–156) ‘Guiding Principles for a Course on Autism’ which asks:
“What if both the education of youth and adults and the training of educators included the explicit understanding that no neurocognitive style is more “correct” or “normal” than any other and that the work of mutual accommodation is both an essential part of a proper education and an essential preparation for being a participating citizen in a civilised society?”
An Open Framework for Neuroqueer Learning Spaces.
(open for discussion, just the beginning…)
Balance
We don’t want to strike a balance between the neurodiversity paradigm and the pathology paradigm. We are wholly and intentionally rejecting the pathology paradigm as it has been shown to cause so much harm, especially to neurodivergent and marginalised groups. Nick Walker (pg 72) stated, ‘To create a better future, one must first be able to imagine a better future‘. Audre Lorde (1983) suggested we need to create tools not just to dismantle the education system but to build a new house (in this case, a learning space) that empowers educational facilitators and young people. We want to avoid rebuilding the same education, but just in a different way; we need something different and neuroqueer learning spaces.
Why Sheets — Anti-Behaviourism
We are deeply aware of the barriers young people and their families face in today’s education system. Families can not wait years for an education revolution; they need and deserve some tools to help their child tomorrow morning after breakfast when they may have to meet with a head teacher. We hope that by providing small steps such as ourWhy Sheets inspired by Alfie Kohn(2019), we can offer support and help families reclaim agency and autonomy for their children battling behaviourism, school-induced anxiety and systemic exclusion so they can self-advocate. These resources will also be invaluable for professionals who need well-researched neuro-affirmative resources to support their work. These are short-term answers and are more of a lily pad for the more radical reform needed.
2. Facilitators and Guides
Neuroqueer learning spaces should be nonhierarchical and rhizomatic. This means that we need to shift away from having teachers and students and instead need facilitators and guides. Guides walk alongside children, follow their leads and interests, and support them in developing curiosity and deeper learning. Mutual respect can be formed when there is no hierarchy when you are ‘in it together’; it also develops creativity and enhances communication.
We need to guide and facilitate young people’s movement between Cavendish learning spaces in their own time, as described in our previous writing (Cave, Campfire, Watering Hole). We need a diverse range of people as guides and facilitators. This includes people from all backgrounds, cultures, and needs groups. Other than safeguarding issues, there is no reason why anyone should be excluded. With the right support, everyone has something they can bring that could inspire others to learn more.
3. Adults must embrace the neurodiversity paradigm and be willing to explore neuroqueer theory with an open mind.
When designing an autism course, Walker (2021) suggests that it is “not enough for the instructor to be autistic; they need to be autistic with a substantial history of active participation in autistic culture and community, including autistic rights activism, resistance to oppressive cultural and professional practices based in the pathology paradigm, and a celebration of autistic pride”.
Everyone who facilitates neuroqueer learning spaces must fully embrace neuroqueer theory, as Walker (2021) defines it. Neuroqueering is open to everyone but requires a lot of unlearning, relearning, creating and recreating. There are likely many routes people have travelled and are travelling to get here. For those facilitating neuroqueer learning spaces, people will need to be neurodivergent; if not born neurodivergent, they will need to engage in neuroqueering to become neurodivergent, to diverge their bodyminds from culturally ingrained performance of neuronormativity. Those who are neurodivergent will need to be open to diverging further against neuronormative expectations and be willing to explore the potential of neuroqueer learning spaces.
4. Marginalised Voices Must Be Central
Marginalised voices must be central to the learning space so they can reclaim power and autonomy. Students’ resources also need to be more diverse and reflect indigenous cultures. Total communication systems and access to alternative and augmentative communication need to be standard, and the freedom to move indoors/ outdoors and between Cavendish Learning Spaces (cave/campfire and watering hole) at home, in educational settings, and multisensory environments is essential.
5. Truth Is Where It Is
Non-disabled people and non-neurodivergent people have primarily led the discourse about disability and neurodivergent people so far. Marginalised groups have largely been excluded, silenced or misinterpreted. By having a diverse range of educational facilitators and guides from marginalised communities, first-hand knowledge can be passed down and shared to challenge that narrative and promote a re-storying and validation of experiences.
6. Educational Facilitators / Guides Must Model Neuroqueering
Most educational settings “reflect ableist and neuronormative values of the dominant culture” (Walker, 2012). Students are rewarded for conforming, and those who don’t or are unable to conform are discriminated against. We need educational guides to declare their learning space as a ‘zone of freedom‘ away from neuronormativity. In the words of Audre Lorde (1983), ‘the master’s tools will never dismantle the master’s house.’
7. Educational Guides Must Model and Invite the Embodied Expression of Neuroqueering
Educational facilitators must embrace neuroqueer theory and have an embodied approach to education, such as that suggested by Aldred (2023). We need to expand potential and provide a safe space for self-liberation where adult facilitators can shed neuronormative habits and children can grow up without the need for that shedding. We want children to have the freedom to be and become who they want to be. Educational guides must declare the learning space a “zone for free experimentation with shedding habits of normative performance and actively exploring, practising, reclaiming and cultivating non-normative modes of embodiment.”
Merleau-Ponty (1945) stressed the importance of nurturing relationships and fostering a sense of belonging and connectedness in our communities. For communities to happen, we need to start with the relationships of those we are with and the children we work with in schools and other settings. All our children deserve to feel safe and valued so their differences, unique interests, and ways of being are celebrated with others in an embodied, connected way of being together.
McGreevey et al. (2024) research offers a humanistic framework for “An Experience Sensitive Approach to Care With and for Autistic Children and Young People in Clinical Services“, which we feel will provide a secure base for creating a neuro-inclusive setting. “The experience sensitive approach is a coherent, neuro-inclusive framework that promotes a dignified, respectful, personalized approach to care”, which we believe will be equally valuable and essential as a foundation for neuroqueer learning spaces to promote:
Insiderness
Agency
Uniqueness
Togetherness
Sense Making
Personal Journey
Sense of Place
Embodiment
As Walker suggests, “introducing the practice of neuroqueering embodiment into the classroom (learning space) is an excellent way to introduce neuroqueering as a concept.” We are embracing this and would love for you to share your ideas to help develop this concept.
This is a community project. Feedback welcome.
If you’d like to add your signature to support our anti-ABA/anti-PBS/ anti behaviourism WHY SHEET resources, then please follow the links below:
To find out why we are anti-behaviourism, click here: ANTI-BEHAVIOURISM
Adding your signature to our resources will help add weight and give families the extra confidence to use these to advocate for their young people. Please click here: ADD YOUR SIGNATURE.
If you have any questions or would like further information, please contact us Ryan Boren at Stimpunks or Helen Edgar at Autistic Realms.
Lorde A. (1984a). The master’s tools will never dismantle the master’s house (Comments at the “The personal and the political panel,” Second Sex Conference, New York, September 29, 1979). In Sister outsider (pp. 110–113). Sister Visions Press. (Original work published 1979) (LittleRad.org also has a copy of the original source)
McGreevy, E., Quinn, A., Law, R., Botha, M., Evans, M., Rose, K., Moyse, R., Boyens, T., Matejko, M., & Pavlopoulou, G. (2024). An experience sensitive approach to care with and for autistic children and young people in clinical services. Journal of Humanistic Psychology. https://doi.org/10.1177/00221678241232442
Merleau-Ponty, Maurice, 1908–1961. Phenomenology of Perception. London : New York :Routledge & K. Paul; Humanities Press, 1974.
Walker, N. (2021). Neuroqueer heresies: Notes on the Neurodiversity Paradigm, Autistic Empowerment, and Postnormal Possibilities. Autonomous Press.
Yunkaporta, T. (2020). Sand talk: How Indigenous Thinking Can Save the World. HarperCollins.
“Intentionally liberating oneself from the culturally ingrained and enforced performance of neuronormativity can be thought of as neuroqueering” (Walker, 2021).
More Realms has always been a space for me to push the boundaries of Autistic Realms and explore other ideas, theories, and possibilities of learning in different contexts by drawing on more diverse materials, including art, literature, and philosophy. Inspired by Stimpunks’ idea for Cavendish Learning Spaces, I invited Ryan Boren (Co-Founder and Creative Director of Stimpunks) to join me on a path to explore Neuroqueer Learning Spaces as a way of transforming education away from the enforced ideas of normality. This is forming part of my neuroqueering journey and to potentially form part of a chapter submission for Nick Walker’s upcoming Neuroqueer Theory and Practice Anthology.
This feels like a natural evolution and a bridging of Autistic Realms, More Realms and finding possibilities in the gap, the ‘ma’ that I began this blog series with. Often, within the gaps, the caverns, pleats and folds of spaces, we can shapeshift and find other meanings; connections can be formed. A collective flow can bring new possibilities, open up potential and allow us to find the ‘magic’ (Walker, ITAKOM Presentation, 2023).
Once again, I have started the beginning of this project in the middle of everything else! We dived in deep and realised our project had been underway for many years, but neither of us had the vocabulary of ‘neuroqueer’ and ‘neuroqueering’ (Nick Walker, 2021) to describe our thoughts and help us understand our journey. Now we have that vocabulary; it has opened up another world within a world. It enables us to connect and learn from others who are also interested in the neurodiversity paradigm and postnormal possibilities. It is carving out a pathway for us to expand our community networks and help facilitate a shift in the way education is currently structured. It is helping us move towards what Kay and Dan Aldred (2023) describe as an Embodied Education, which could be seen to be the golden thread that runs through Neuroqueer Learning Spaces.
We know the vocabulary surrounding new concepts like this can be tricky to wrap your head around. It has taken us some time to unlearn and relearn, and we are still learning! We have created a brief summary (below) of some of our main concepts that may not be familiar to everyone. A more in-depth version of this is available on Stimpunks’ website, with further references and ideas to open up discussion.
Embodied education is a concept we will return to and weave through our work alongside other emergent ideas about being a ‘space holder’ to allow the freedom of creative learning to take place. We believe, ‘There is no learning without the body.’ Aldred (2023). To deepen our understanding of this, we will collaborate with different communities to discover what an embodied, neuroqueer education and learning space may mean for those facilitating education and how it could support young people and what it means for the young people and families.
Drawing on the work of Octavia Butler and Adrienne Maree Brown, “The idea of interdependence is that we can meet each other’s needs in a variety of ways, that we can truly lean on others, and they can lean on us. It means we have to decentralise our idea of where solutions and decisions happen and where ideas come from. We have to embrace our complexity. We are complex.” (Adrienne Marie Brown, 2017.
Within an educational context, this means decentralising education, or at least making attempts within our own lives to change the way learning spaces are set up and used, moving away from the hierarchical model of ‘Master’ and ‘Student’. As (Audre Lorde, 1979) says, “The master’s tools will never dismantle the master’s house.”
We need safe spaces tobe witheach other in embodied, meaningful, collaborative, and responsive ways. Our children deserve to feel cared for, understood and safe to explore. We believe we needradical inclusivity to prevent the continuation of the severe mental health crisis our young people are experiencing today.
Over the past few years, I have discussed the current education and mental health crisis in the UK that has led to so many children experiencing burnout and living with the impact that the barriers of our UK education have created. This education crisis is also echoed in other countries, including America, where Stimpunks is based. Many of the issues are highlighted in Gray-Hammond’s (2024) CAMHS in Crisis, which I recommend for further insight into these problems.
It feels like we have reached a point where no one is happy or benefiting from our current education system. Fisher’s (2023) ‘Changing our Minds’ work highlights this from the perspective of teachers, students, and parents/carers. It has made me question our educational aims and what our schools are trying to achieve; it feels like we have lost our way. We no longer need workers for factory production lines; children are becoming more ‘disembodied’ as time passes, and teachers and students have even less autonomy than ever.
We are teaching children to be proud of what they know yet also ashamed of not knowing, teaching children that there is somehow a ‘right’ way to learn through reward charts and positive behaviour support programmes and revising for prescriptive exam criteria. However, it is by having a sense of wonder, curiosity, and unknowing that real learning takes place. This is why we chose the white rabbit symbol for our project. Our white rabbit (also known as Space Bunny) symbolises playfulness, curiosity, wonder, hope and the possibility of expanding learning potential. We use this as a symbol for people to follow us on our Neuroqueering Learning Spaces adventures. We are starting off down the rabbit hole, learning about the three Primordial Learning Spaces as theorised by Thornburg (2013).
Cavendish Learning Spaces are Neuroqueer Learning Spaces
Lorde (1979) declared, “Revolution is not a one-time event. It is becoming always vigilant for the smallest opportunity to make a genuine change in established, outgrown responses…” Ourtriskelionmotif reflects this, with the golden thread of embodiment (being with yourself and being with others) weaving between the three primordial learning spaces. We will be exploring this in more detail as the project evolves. This allows children the opportunity to flow between their cave, watering hole and campfire spaces as needed and be in a perpetually evolving spiral of new learning possibilities by revisiting and expanding on thoughts, ideas and play processes to keep building on connections.
Without information and training, many teachers are likely unaware of the different paths and the need to DE-SCHOOL their learning spaces, UN-LEARN their training and embrace radical inclusivity. A quote often credited to Maya Angelou reads, “Do the best you can until you know better. Then when you know better, do better.” We hope this project will allow people to learn from others so we can all ‘do better together’. Teachers can not take that ‘small opportunity’ if they don’t know where to look for it or even understand why it is needed.
When I was working in class as a teacher, I was often far too busy with the day-to-day planning to think too far outside of my next lesson. Only now, with the privilege of time and hindsight, I have discovered new possibilities by connecting with other communities. Likewise, families also need time to explore and space to connect, validate experiences and learn together. Time is often something many families do not have; family life is generally busy! However, everyone deserves the opportunity to access practical information about different educational pathways and support for their children and to be able to advocate for their needs. Education does not and should not only happen inside a school building between 9 am-3 pm sat behind a desk. We are passionate about expanding learning opportunities and neuroqueer spaces for learning to take place and giving families and educators some ideas and resources to be able to do this.
We want to create a campfire experience by bringing community networks together; we want to share stories, knowledge and create connections to be with each other. We want to provide a space that brings agency and autonomy back to families and school staff. Educational settings and families need freedom for niche construction so children can move seamlessly and weave between different learning spaces. For families opting for alternative learning routes, these pathways need to be made more accessible, and the journey and support need to be much smoother and more empowering for families.
We aim to provide practical resources for professionals and families to support them. For families this may include resources to support them in being able to advocate for their child (such as template letters and signposting to research). For educational settings this will include practical ideas to launch their neuroqueer learning spaces in their own setting.
Caves:Space for quiet reflection, introspection and self-directed learning. A private space to transform learning from external knowledge to internal belief. Home of reflective construction.
Campfires: Space for learning with a storyteller. Education facilitators need to actively subvert neuronormativity. They need to embark on their transformative neuroqueer journey so their re-storying can inspire neuro-cosmopolitanism.
Watering holes: Space for being with peers and social learning. Community enables thoughts and ideas to expand rhizomatically. Embracing unique strengths expands creativity into new horizons and a collective flow full of potential.
A radical change to learning spaces is needed to enable children to be embodied, feel safe and feel liberated enough to explore and be curious about the world around them. We can work and learn in infinitely creative ways, but we need to be embodied in order to do that and connected within ourselves and with the world and people around us. To feel embodied, you need feelings of safety; people need to value strengths, validate difficulties, and provide support where needed. The neurodiversity-affirming work by McGreevey et al.(2023) based on the Life World Model by Todres et al. (2009) applies equally to health care and education. It offers a humanising framework for everyone, not just autistic people. Everyone deserves to feel a sense of togetherness and have their journeys make sense so they have agency and autonomy over their learning journeys.
We have created alilypadto launch our project by inviting discussion around the following ideas:
“Cavendish Spaces” are based on flexibility, interaction, movement, and the role of embodied responsive experiences. They reject the boundaries of traditional classroom settings and examine how they restrict embodied experiences and lead to disembodied experiences and harm. Our project is multidimensional, non-linear and de-hierarchical. We need to deconstruct, dismantle and un-learn as part of the neuroqueering process to lift the burden of neuronormativity that is weighing our children down. We are exploring the idea of an embodied education. We are exploring how learning spaces may impact neuroqueer learning potential and radical cognitive and somatic liberty. Inspired by Ira Socol who suggestsZero-Based Design as part of this process which means children will be no longer be trapped in your past. It will enable us to:
“Reimagine the Learner Experience. Reimagine the Learning Spaces. Reimagine How Professionals Learn”. (Ira Socol)
We are looking at neuroqueering from all angles across the community. We are looking at ways to give agency and autonomy back to families and support those working in educational settings that facilitate and guide learning experiences. Importantly, we want to offer children timeless learning and neuroqueer space to be with others, be themselves and ‘become’ and ‘become what they are’ (Watts, 1955).
The path to escape the box of a sick society involves rediscovering timeless and minimalistic principles for coordinating creative collaboration.
NeurodiVentures are a concrete example of an emerging cultural species that provides safe and nurturing environments for divergent thinking, creativity, exploration, and collaborative niche construction. NeurodiVentures are built on timeless and minimalistic principles for coordinating trusted collaboration that predate the emergence of civilisation.
“The global mono-cult pretends that all aspects of life can be categorised and understood in terms of normality — by the hump of the bell curve. But the living planet does not conform to anthropocentric normality; it is chaotic, but it is beautifully and awesomely diverse.” Bettin (AutCollab, 2024)
We are documenting the neuroqueering process of our journey as a live- stream across Stimpunks website as the project unfolds. It is a reflection of the kaleidoscopic rhizome of Stimpunks, which is a beautifully awesome and diverse learning space in itself.
Our project shows an example of a neuroqueering workflow transformation, which we will expand on in future blogs. Stimpunks is a virtual space holder for my personal neuroqueering process and the community joining us. As a space holder they provide safety to explore, try out new ideas and work collaboratively towards a mutual goal without fear of judgment.
To neuroqueer, you have to un-learn. I visualise my neuroqueering as being like fractals in a kaleidoscope. It is a process of turning, changing and becoming by un-learning and re-learning and time-less learning from others in a campfire space, having time for self-reflection and self-directed learning in a cave space, joining in with and alongside others and celebrating diversity in a watering hole space. We are not perfect, and the project may be chaotic and messy in places. However, we feel passionate that we are heading in the right direction and want to celebrate the ‘beautifully and awesomely diverse’ potential of neuroqueer learning spaces with you.
Created Serendipity
“Seemingly serendipitous events are also based on our willingness to create connections and be in the space, and to put in the effort in the first place. I often tell people that if you start connecting with others in online spaces, you won’t just find great ideas, but the great ideas will find you.” (George Couros)
Created Serendipity is a beautiful thing. We would love for you to join us and expand the potential of neuroqueer learning spaces!
We’re requesting community writing and art about neuroqueering education, play, and learning spaces. “Cavendish Space” is the first piece in our “Neuroqueer Learning Spaces” project. It’s also our explainer for the project. The campfires in the “Cave, Campfires, and Watering Holes” concept introduced in “Cavendish Space” are places for storytelling. They are places for elders and experts to pass along knowledge. We want to weave campfire wisdom into community storytelling. Community storytelling is part of our neuroqueer journeying and becoming.
For each section of the “Cavendish Space” piece, we’d like to have a “Campfire Wisdom” (working title) callout box featuring submitted writing and art. We want to highlight the wisdom of experts and elders in our community and associate it with the campfire primordial learning space and the storytelling and cultural transmission it facilitates. We’ll integrate submitted writing and art into “Cavendish Space” and other pieces created by this project. The writing might be included in a chapter we’re working on for a neuroqueer anthology. We’ll also publish standalone pieces of your work. Anything of any length is welcome. A poem, a paragraph, a painting, a plea, a blog or any other inspiration you may have for Neuroqueering Learning Spaces.
“…human nature is to nurture and be nurtured” Immordino-Yang (2023)
All submissions will be attributed and linked to you whenever used. We plan on writing up this project and submitting a chapter for Nick Walker’s new Neuroqueer anthology.
“The growing cracks in the thin veneer of our “civilised” economic and social operating model are impossible to ignore”, Jorn Bettin (2020).
As a late-diagnosed autistic person, I feel a massive disconnect with the world around me. I am living in the ‘gap’ between so many spaces but also feel the potential of neuroqueering and transforming what could be voids into ‘Ma’, a space for neuroqueer potential. I have lived through cycles of autistic burnout caused by systemic unmet needs and seen the effects of an education system that is not meeting the needs of my children and the many children of the many families I support as an education professional. (I will expand on the terms Ma and neuroqueering throughout this blog).
Neuroqueer has a verb form, unlike neurodivergent or neurodiversity. Nick Walker (2021) defines neuroqueering as “intentionally liberating oneself from the culturally ingrained and enforced performance of neuronormativity ”. Neuroqueering has helped me navigate and transition through a difficult period of my life and given me hope for myself, my family, and also those I support. ‘Anyone can neuroqueer. Neurodivergent or neurotypical. Gay or straight. Anyone can neuroqueer and be neuroqueer” (Ryan Boren, Stimpunks 2024). Neuroqueering is a form of embodied shapeshifting; it is an internal process that helps you discover potential in the spaces in between in Ma.
Ma: The Inbetween
I love this description of Ma from Ghibliosophy as it captures everything I am trying to convey within the context of neuroqueering, a journey which I began almost 25 years ago before I had the vocabulary of neuroqueering or even knew I was autistic; I have recently revisited these themes in my blogs in Middle Entrance and Caverns, Pleats and Folds:
“Ma’ is a captivating Japanese philosophy that finds beauty in the spaces between — the pauses, the silence, the emptiness. It’s like the breath between words, giving rhythm and depth to our experiences. Embracing Ma is not just about appreciating the void; it’s about understanding its potential. It invites us to pause, breathe, and find richness in moments of stillness. By integrating Ma into our daily lives, we open ourselves to a world of mindfulness and creativity, where every pause is an opportunity for growth and a deeper connection with the world around us. In the art of Ma, we learn that sometimes, what we don’t do or say can be as powerful as what we do.”
I have felt the burden of trying to be linear when my mind and body are anything but. Trying to conform and fit into the rigid boundaries of neuronormative society for so long has left me feeling shattered. I have taken a lot from Yunkaporta’s Sand Talk (2020). He has helped me realise why things have felt so hard and why I have felt so heavy and weighed down. Re-storying my own life through the lens of monotropism (Murray et al, 2005) and the neurodiversity paradigm has helped explain repeated cycles of burnout cycles to the point where I crashed entirely and would likely still be crashing if I had not found support and ways to move on through the neurodivergent community over the past few years.
Yunkaporta (2020, pg. 97) has drawn a symbol with two circles adjacent to each other and another line joins them to form a circle, this is enclosed within a hexagon shape. Yunkaporta suggests that the left-hand circle represents the abstract world of mind and spirit, and the right represents the concrete world of land, relationships and activity. The lines above and below, joining the circles, represent communication. Below is my reinterpretation of this image, with the flow of embodiment between the circles in Ma, where neuroqueering can happen and evolve and keep expanding and evolving and connecting with other spaces.
Yunkaporta explains the importance of metaphors being the ‘language of the spirit’, the language of ritual and magic. Transformative processes can create change in people. One way is through sharing stories and building connections, comparing stories and developing ever greater understanding as more connections and stories are shared and the story rhizome expands. As Yunkporta says (2020, pg 114), “We don’t want our stories to be used at bedtime to put children to sleep; we need an exchange of stories to be awake and grow.” I think the lines Yunkapoeta draws in the sand (see image above) could also be seen to representing the importance of embodied relationships, the flow of connections between people and their surroundings, the transformative process that enables people to continuously unfold and reform, to be creative and find joy in between neuroqueer theory and practice, in Ma.
Meaning in Ma and Connections
I have recently read The Hidden Life of Trees by Peter Wohlleben (2017) and Sand Talk by Tyson Yunkaporta (2020). These are two texts, one about trees and one about Indigenous cultures questioning how contemporary life diverges from the pattern of creation and how we may be able to do things differently. I enjoy reading, but I often find more joy in discovering meaning in my thoughts that appear between texts. The shared message between these books is that we need to be more in tune with the world around us, make meaningful connections, and support our communities and stories from those around us and our elders from the past. We need to create time and space to be with each other in a more embodied way; we can find meaning in the spaces and the gaps in the inbetween-ness of Interaction as described in my previous blog, ‘Being With’ and within and between the Cavendish Spaces of our Neuroqueer Learning Spaces.
“People today will mostly focus on the points of connection, the nodes of interest like stars in the sky. But the real understanding comes in the spaces in between, in the relational forces that connect and move the points”. (Tyson Yunkaporta, Sand Talk, 2020)
People, like trees, need each other; we need to focus on the ‘points of connection, the nodes of interest’. as mentioned in the above quote by Yunkaporta (2020). I find it valuable to be a part of an online community; it is currently one of the few spaces I can access where I can connect with people. The connections I am making are essential and allow me safe spaces to explore conversations with others, mostly about monotropism, the neurodiversity paradigm and neuroqueer potential, as described in Connections and Becoming. However, communities can be formed in many different ways. Just as trees can form woodlands and forests and protect each other, people also need to create more caring communities that work with the flow of people’s needs and interests and not against them, which can liberate them so they can thrive.
There is an ever-expanding network of online spaces that are evolving and branching out like a rhizome and connecting with other networks where more nodes and connections form and spiral out again and again from each point; this is repeated endlessly, and we have just added another with our Discord Server to explore Neuroqueering Learning Spaces. A rhizome, as conceptualised by Deleuze and Guattari (1987) and studied in my previous blog, ‘Middle Entrance,’ is a network with no central point of origin. It also has no dependency on other networks and can keep evolving and expanding.
Rhizomatic Potential
David Gray-Hammond and I discussed the concept of the Autistic Rhizome last year. The rhizomatic potential of online spaces enables people to explore different topics and interests, including neuroqueering learning spaces, a community project by Autistic Realms and Stimpunks, which we hope will transform future learning spaces. As more people show an interest and more connections are formed, the online rhizome keeps expanding, adding new potential and even more possibilities. Katie Munday came up with the concept ‘Neuro-Anarchy” and with David Gray-Hammond they co-wrote the blog “Neuroqueer neuro-anarchy and the chaotic self (2023). They suggest that most people are arriving in these spaces ‘by existing on the fringes of their communities and challenging the politics within them’. This appears to be the case for the majority at the moment, but also a significant proportion of the people who have been in contact with us via Stimpunks are parents and professionals who do not identify as neurodivergent themselves but are advocating for their children or those families they support professionally, they want a safe neuro-inclusive space so they feel less alone and more connected with others that hold the same ideals and beliefs.
It has been shown that single trees planted alone often grow less well and live shorter lives than those amongst other trees in a community. Trees connect through a nourishing network deep in the soil. They use this network deep underground to communicate and care for each other. Wohlleben shares how he discovered that trees could communicate by scent, share food, and nourish other trees struggling or in danger. We can learn much from forests and trees and what Simard et al.(1997) called the ‘wood wide web’ in our human communities and within the rhizomatic online networks of the emerging community exploring neuroqueering. Gray-Hammond (2024) reminded me that “we are not all trees”. Humanity is rich and diverse, and we all have our ecosystems that need to coexist and grow.
Gray-Hammond (2024), in response to my first draft of this article, wrote;
“Our mind can be thought of as rhizomatic. Each neuron is connected to the others through intricate paths. Each experience and thought is linked to the others. Each point is like the atoms of the wave. My human life takes form. Neuroqueering allows me to change the behaviour of that rhizomatic thought structure, moving freely between solid, liquid, gas, Earth, water, and air.”
This builds on the quote from Yunkaporta (2020) and emphasises that the only restrictions on neuroqeer potential are our minds; we are all human, but what that means for each individual is unique and can be transformed. Buddhist Teacher Daisaku Ikeda suggests that we could imagine life as a wave. A wave takes form within the ocean, follows its path, and eventually crashes into the shore before returning to the ocean. To neuroqueer is to consider what we may need to do to change the wave’s trajectory within us; this may mean going deeper within ourselves and allowing our bodyminds to expand further. Online spaces offer opportunities to make connections, form friendships and be with people in ways that will enable freedom to be and communicate in ways that work for them and in ways that fit into their day and lifestyle, with no demands and no expectations — other than to be accepting of differences and be kind.
The concept of creating primordial Cavendish Caves spaces, which we are exploring in our Neuroqueer Learning Spaces project, are spaces of quiet contemplation. They offer a chance to reflect and recover; for some people, this may involve listening to music, watching TV programmes on repeat or online gaming. For others, the Cave space may provide an opportunity to embrace the sound of silence. For me, it is within this silence that neuroqueer potential may be found, the bodymind replenished and new ideas created. It is within a silent space filled with Ma that I can breathe in safety and comfort and breathe out and expand ideas, to shapeshift and transform myself and my thoughts,
I see ‘Being With’ as a process of coming together. Deleuze’s (1987) concept of the line of flight allows us to explore meaning between created spaces and through our connections with people. It is a way of moving beyond and between the gaps of the often preconceived ideas of what ‘being with’ people may mean and what our roles as educators and care facilitators may be. ‘Being With’ creates an opportunity for an embodied sense of belonging and wonderful, meaningful shared experiences. ‘Being With’ is a process of coming together and being full of potential. ‘Being with’ means being willing to explore the unknown and benefit from Cavendish Learning Spaces (cave, campfire, and watering hole), as we have described in our previous blogs.
Yunkaporta (2020) suggests that we must diversify, connect, interact, and adapt. “Diversity is not about tolerating differences or treating others equally and without prejudice. The diversification principle compels you to maintain your differences…you must interact with other systems beyond your own, keeping your system open and sustainable.” I think this is important for neuroqueering; we need to seek out differences, work with diversity and connect with others to benefit from the potential that can bring for people in their learning spaces and those facilitating learning spaces.
According to Yunkaporta (2020), “Interaction is the principle that provides the energy and spirit of communication to power the system. This principle facilitates the flow of living knowledge. You must transfer knowledge (and energy and resources) with as many other agents as possible, rather than trying to store it individually.” The final guideline they suggest for sustainable communities is adaptation; within a neuroqueering context, this is not about adapting to the society that we already have that is breaking so many people; it is not about adding more accommodations into children’s care plans. There has to be a point where if a child needs so many accommodations, people should start to question whether the setting or provision is even suitable; nobody wants to feel different and like a burden. If there is no defined ‘normal’, there will be no need for accommodation, everyone will be different, and everyone’s needs will be met.
Instead, I feel Yunkaporta’s idea for adaptation is more about adapting ourselves, allowing ourselves to change and transform. For this, we need safe spaces online and in the community. Yunkaporta describes this as taking on the role of a “strange attractor’ to “facilitate chain reactions of creative events within the system” In my mind, this all has excellent neuroqueer potential to explore further and ties in beautifully with Bettin’s (2021) work where he suggests that we need to “Grow competency networks and catalysts rather than leadership and leaders — to get things done and distribute decision making to where the knowledge resides.”
Collective Flow
Connections create communities, and as described in my previous blogs, communities can generate a collective flow and potential for people to ‘become’ and for society to be shaped by us for our future. For flow to happen, there has to be intent, and people have to want their intention to lead somewhere positive, even if that endpoint is the unknown, in Ma. Knowing and feeling the energy and potential of others who also want to explore neuroqueer learning spaces is exciting. Not having an exact end destination or prescribed route to get there is still more exciting. We will all have to neuroqueer ourselves to begin reimagining education and consider neuroqueer learning spaces.
Looping back to Yunkaporta’s (2020) Sand Talk and connecting this with Walker’s Neuroqueer Heresies, we can learn a lot from focusing on the things people usually ignore and being able to discover the unknown potential in learning spaces. We need to neuroqueer ourselves from within to have an effect and even begin neuroqueering learning spaces.
In Neuroqueer Heresies, Nick Walker describes what it means to embrace neuroqueering as a verb. In learning spaces, we need to reinterpret, rethink, redefine, and reimagine what those spaces may look like and the journey required to facilitate them. I am considering if we can use Nick Walker’s template for designing autism courses as a template for designing neuroqueer learning spaces. It has made me think of the differences between being neurodiversity affirming and having everyone’s needs met and then neuroqueering those spaces to enable unknown potential to bloom; once you are free from the reigns of neuronormativity, cognitive and somatic liberty and learning potential are endless.
Yunkaporta talks about being a ‘strange attractor’ (2020, pg82), which feels to me as if it is in line with neuroqueer ideology. To be a strange attractor in education means taking a risk and creating chaos. There is enormous negativity around words such as anarchy and chaos, but as Yunkaporta reminds us, chaos means no structure, like a rhizome, and anarchy means ‘no boss’. He asked if we could have a structure without a boss or management. If the current education system is causing so much harm, we must move away from it and create something new. We need to make something where words like average, typical, and even divergent become irrelevant, as everyone will be diverging to and from each other, constantly evolving and expanding.
Walker (2021) posed a question that I think we need to consider for our learning spaces:
“What if both the education of youth and adults and the training of educators included the explicit understanding that no neurocognitive style is more “correct” or “normal” than any other and that the work of mutual accommodation is both an essential part of a proper education and an essential preparation for being a participating citizen in a civilised society?”
Family is important, but not everyone has a loving family that they can depend on, and even if you have a loving family (for which I am grateful), then found or chosen extended family and friends can still play a hugely important role in life. Whānauis a Maori term for an extended family group, as written by Jorn Bettin & Ulku Mazlum(2022). “Whānau is much more than the Western notion of “family”. It is a deep connection, a bond that you are born into that no one can take away from you.”
There is so much we can learn from other cultures. Adults and children need time and space to co-create Whānau in our neuroqueer learning spaces. As Bettin (2021) reminds us, “In many indigenous cultures, children with unique qualities are recognised, are given adult mentors with similarly unique qualities, and grow up to fulfil unique roles in their local community, connected to others with unique knowledge and insights, perhaps even in other communities. If we are embedded in an ecology of care, we can thrive and share the pain and the joy of life.” (Bettin, 2021)
The Magic Is Open
The magic of neuroqueering is open to everyone; it embraces the neurodiversity paradigm and celebrates the endless variation and potential of unique body-minds in our society and beyond as we learn from other Indigenous cultures. To neuroqueer is to become neurodivergent and to expand, unfold, create and recreate continuously. To neuroqueer is to explore the magic between spaces and discover possibilities that can emerge from Ma and be transformed into new spaces. We hope that by providing some ideas for neuroqueer learning spaces and opening up conversations about what neuroqueer learning spaces may be like, we will continue to expand the community rhizome. We are adding another node to the rhizome by opening up conversations for others to contribute so we can create more possibilities.
Murray, D., Lesser, M., & Lawson, W. (2005). Attention, monotropism and the diagnostic criteria for autism. Autism (London), 9(2), 139–156. https://doi.org/10.1177/1362361305051398
Simard, S. W., Perry, D. A., Jones, M. D., Myrold, D. D., Durall, D. M., & Molina, R. (1997). Net transfer of carbon between ectomycorrhizal tree species in the field.Nature, 388(6642), 579–582. https://doi.org/10.1038/41557
Walker, N. (2021). Neuroqueer heresies: Notes on the Neurodiversity Paradigm, Autistic Empowerment, and Postnormal Possibilities.Autonomous Press.
Wohlleben, P. (2017). The hidden life of trees: What They Feel, How They Communicate — Discoveries from a Secret World. William Collins.
Yunkaporta, T. (2020). Sand talk: How Indigenous Thinking Can Save the World. HarperCollins.
In Milan Kundera’s novel, ‘The Unbearable Lightness of Being’ (1981), he described the heaviness of life, the restrictive oppression and boundaries that can tie us all down, yet there is freedom in the possibilities the mind can bring and in the choices we can make. We can subvert the restrictions of neuronormative society; we can, to some extent, choose our line of flight and see the potential in the folds of our thoughts. This potential may be expressed through art, literature, science, music, movement, conversations and joining in collective flow states as a community and also through neuroqueering as discussed by Nick Walker in my previous writing.
This article is continuing my exploration of the philosophy of Deleuze and Guattari in relation to the creation of concepts and theories, such as monotropism. I am interested in the inner experience of flow states and also the flow states within society as I have noticed that a new collective flow state is gaining momentum within the neurodivergent community. Talk about the theory of Monotropism (Murray, Lesser, Lawson, 2005) and The Monotropism Questionnaire (Garau et al., 2023) is flooding some social media channels, and many people (especially those who are Autistic/ ADHD) are sharing their experiences and resonating with this theory and the potential for a new way of framing their own experiences.
Monotropism Questionnaire
The Monotropism Questionnaire (Garau et al., 2023) research article has been shared millions of times across various social media platforms over the past few weeks. There are likely many reasons why the Monotropism Questionnaire has been taken so many times and has been so popular. However, I believe one of them is the feeling of validation it brings to autistic/ADHD people. It seems to be helping to create a sense of connection and understanding, a sense of safety and reassurance from other people that ‘get it’.
Neurodiversity Affirming Flow
There is a new energy and strong flow behind neurodiversity-affirming work, especially within education and mental health organisations. There is a variable weight to flow states and momentum created behind all the research; it is interesting to consider how and why this particular piece of research has moved so fast, especially across social media platforms. For example, Dr.’ Joey’s post on TikTok about the Monotropism Questionnaire now has over 3.5 million views, a staggeringly high statistic for any topic.
Validation
There is a deep yearning for people to feel understood, for their strengths to be celebrated and for their difficulties to be acknowledged. There seems to be a growing number of neurodivergent people seeking support and a growing number of neurodiversity-affirming, neurodivergent-led charities, organisations, and groups emerging to help people who have previously been marginalised and left feeling alone.
Many of the new organisations, groups and online spaces that are evolving are proving to be a wonderful coming together of different minds, a collective response to the long-standing unmet needs of neurodivergent people. They are an example of the internal experiences of neurodivergent people being acknowledged and represented in the community with shared experiences, empathy and understanding. This coming together and uniting through shared experiences and theories such as monotropism could be seen as being like a collective flow state; a combined energy of mutual understanding created by accepting and validating each other’s similarities and also differences.
Collective Flow
Deleuze and Guattari are philosophers, and they explored aspects of a broader interpretation of flow, a collective flow state in society. In A Thousand Plateaus (1980), Deleuze and Guattari specifically talk about society’s economic and social flows; this is a broader interpretation of flow compared to the internal channelling of attention resources described by Monotropism Theory (Murray et al., 2005) or the flow states described by Csikszentmihalyi (1990).
Deleuze describes the bigger picture, the flowing river of a community and society. However, the flow in society could not happen without the diversity of all different minds sharing their passions, skills and knowledge, all working together. The world is in a constant state of flux, and society is in a continuous state of movement. The world and its collective flow states are multidimensional; we live in a world of differences, and neurodiversity is that difference and where the creative potential lies.
Double Empathy
The Monotropism Questionnaire may be popular with Autistic /ADHD people as it reflects their experiences beyond a purely cognitive understanding and resonates with people’s inner states of being. Many people are taking the questionnaire and only then asking, ‘What actually is monotropism?’
A lightbulb moment is often felt, a moment of clarity and relief of being heard and feeling understood; this is reflected in all the likes and excited reshares across social media.
If you have constantly felt on the outside of spaces, there is often a deep yearning to be understood and to feel a part of ‘something’. By taking the Monotropism Questionnaire, there is a feeling of connection with others; there is no double empathy problem (Milton, 2012). Instead, there is a wonderful mutual understanding which reflects so many aspects of life, the positives and the challenges, and there is value in sharing these experiences.
Todd May suggests that the question Deleuze & Guatarri are asking about philosophy is, ‘How might we live?’ rather than, ‘How should we live?’This quote feels particularly relevant for the neurodivergent community and could be a way of reframing our understanding of autism and thinking about what it means to be Autistic/ADHD. Work led by neurodivergent people researching for their community is proving valuable, resonating deeply and is slowly flowing into other research. (I collated a Summary of Monotropism Research for Summer 2023, which can be found on Monotropism.org).
Monotropism is not a new theory, but the collective flow of the online community may have been what was needed for the current to gather this strong momentum and create such an exciting amount of energy. It has quickly moved out of purely academic circles into spaces where people are now sharing their own experiences of monotropism. People are sharing some of the struggles in their lives as they have tried to live up to the expectations of how they felt they “should be” against the norms of the neuromajority. People have been coming together to share ideas of how to manage being monotropic and sharing ways to try and balance energy.
Monotropism and Inner Experiences
Monotropism could be considered the most accurate reflection of autistic/ADHD experiences that we currently have. I feel it reflects a deep inner experience and way of processing that impacts every aspect of life, from cognition, attention, communication and socialising to sensory experiences and mental well-being.
Diving into your monotropic flow state can create a feeling of joy and safety. Immersing yourself in familiar topics and interests in an overwhelming and chaotic world is reassuring and can provide comfort. The theory of monotropism is helping some people understand and find ways of managing their energy and attention resources to support them in their day-to-day lives. It offers explanations for other difficulties people may have with focusing, switching tasks, concentration, attention, communication, interactions, socialising and also physical and sensory processing. Realising that others relate to this theory and struggle with more challenging aspects of monotropism is drawing people together across social media which can only be a positive outcome.
Creative Potential
Deleuze draws on the idea that philosophy is a process of creation, a process of possibilities and the art of concept creation. As a concept, monotropism absolutely works for me. I can apply it to every aspect of my life. Monotropism helps me understand myself and relation to others and the world around me, it is helping to bring some sense into what can feel like quite a chaotic world. There is potential in the theory on both a personal level and in the wider implications for supporting people in education and other settings and family life.
Rhizomatic Flow
Our collective flow from within the neurodivergent community is rhizomatically evolving and starting to branch outside the autistic community. Interest is growing that was not here even six months ago; webinars and training sessions are popping up over the internet, and new writing is being shared all the time.
I believe we need to embrace this flow and channel it into productive research and enable the inner experiences of neurodivergent people to drive the research so it is more meaningful for everyone. Neurodiversity is where potential and possibilities lie. Everyone has an integral and equally important role in creating and contributing to our community flow state and in the possibilities that may bring.
Celebrating Differences
The Monotropism Questionnaire has possibly gained significant momentum because there is a collective need for a shared neurodiversity affirmative understanding from within the neurodivergent community. Everyone deserves to flourish and live their best life; having your inner experiences validated is intensely valuable and has the potential to create new possibilities and better outcomes for autistic/ADHD people.
If we accept and celebrate differences, we can all work together to shape the course of our collective flow. More research into monotropism and inner Autistic ADHD experiences will help support and benefit everyone.
Deleuze and Guattari suggest:
‘Lodge yourself on a stratum, experiment with the opportunities it offers, find an advantageous place on it, find potential movements of deterritorialisation, possible lines of flight, experience them, produce flow conjunctions here and there, try out continuums of intensities segment by segment, have a small plot of land at all times.’
(A Thousand Plateaus (2013), Chapter 6, How do you make yourself a Body Without Organs?, pg. 187)
