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 in Expanding 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 also means rewriting neurodiversity affirmative assessment guidance by adopting approaches such as those set out by The Neurodiversity Affirmative Child Autism Assessment Handbook (2025) by Dr Maeve Kavanagh, Dr Anna Day, Davida Hartman, Tara O’Donnell-Killen and Jessica K Doyle. In addition we also need to create new therapy resources and educational materials led by Autistic people, shaped by our values, in formats that feel intuitive to our minds and bodies and that are accessible.
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.
References
Adkin, T., (2023, June 7). What is meerkat mode and how does it relate to AuDHD? – Emergent Divergence. Emergent Divergence. https://emergentdivergence.com/2023/06/06/what-is-meerkat-mode-and-how-does-it-relate-to-audhd/
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.
Milton, D. E. (2012). On the ontological status of autism: the ‘double empathy problem.’ Disability & Society, 27(6), 883–887. https://doi.org/10.1080/09687599.2012.710008
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.