Top Left: Girl in glass is a piece about masking and how it feels trying to push your self to a form that doesnt fit. Sometimes parts of you escape, the concept of self is distorted, your needs and comfort is minimised. (Melanie Martinelli)

Top Right: “SunDark”, Charcoal and chalk on paper, 9” x 12”, 2025 (Miss Mossy)

Bottom Left: Capturing the Aurora (big special interest) in October 2024 - Brue River Estuary, Somerset (Kyra Chambers)

Bottom Right: Now is when I need to speak, out loud and present. I existed yesterday and will exist tomorrow again, but now I am here. (Megan Reilly)

All fantastic artistic expressions of the Neurodivergent world we occupy. Knowledge is not only passed through word of mouth or writing. Sometimes the most impactful things we learn come from what we see with our own eyes.

NeuroHub Community Journal is currently looking to publish articles on Autistic Pride and Autistic Mental Health. If you would like to write something, please submit at the link below.

We no longer offer paid subscriptions to our Substack, and all of our content is now free to access. If you would like to donate to our work, you can do so at the button below, or you can purchase a subscription to our online community space on the Heartbeat app, also linked below.

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For this first installment of community artwork from the neurodivergent community, we have this work from Danielle/Dee Stella

Neurographic drawing, in pen and water colours. Emotion is “ lonleyness”.

“inner child” - Neurographic drawing in pen and watercolours. “Inner child”. Emotion is “lonleyness 2” the second neurographic drawing I’ve done.

Adele Murray

A digital drawing of my dog coco in the sunlight.

Rainbow Mosho

I belong to various cultures. I am empowered by my diversity and history. Autism is a part of it and I am making sense of it all.

There is power in art, it is a medium of communication that is open to all in some way. NeuroHub Community Journal is proud to feature this first installment of community artwork. To submit a post to the journal, you can click the button below.

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Greater awareness – and a wider understanding of the many different ways in which Autistic experience manifests – are resulting in people recognising themselves and undergoing what can amount to a fundamental shift in their identity and self-concept.

It can take a long time to reach a point of acceptance and self-compassion, particularly where people have held pathologised views of autism and seen it as a negative and a disorder rather than neurology that is neither inherently good nor bad.

Even after a formal diagnosis, very little support is automatically offered to help people to process this potentially seismic change. When I was diagnosed Autistic I received some signposting resources and a few psychoeducation webinars – which is more than most people seem to get.

Where support is offered, its quality varies hugely. Outdated, pathologising and harmful narratives are often still pushed.

So, what might be a helpful path to take when you’re identified as Autistic – whether diagnosed or not? When governments treat us as a burden and the press drown us in stigma, getting informed and embracing being Autistic can be an act of resistance.

Tigger Pritchard advises people who discover their neurodivergence to

“find your well-informed neurokin as soon as you can.”

Tigger is a neuroaffirming advocate, consultant and trainer, and he happens to be the first person I reached out to after realising I was Autistic. I thoroughly agree with his suggestion, and entering what I’ll call ‘informed Autistic spaces’ has started me on a journey of self-understanding, unlearning, growth, and connection that I’m grateful for every day.

If you’re reading this then you’ve already found some of these spaces and started on a potentially lifelong journey through the Autistic Rhizome. Which turning to explore next is down to personal preference and the resources available to you, but there are more choices now than ever before.

Communities

I’ve found Autistic spaces to be beautifully non-hierarchical in a way that is hard to find in neuronormative society. Many people who are well-known and have a profile within the broader Autistic sphere are accessible and can be engaged with directly and meaningfully through social media, email - and in many cases via their own communities such as NeuroHub.

I’m enjoying the more personal and connected nature of these communities compared to social media groups (some of which can still be a helpful way to access information). They provide the opportunity to directly discuss ideas and research with those advocates who are creating or interpreting them – in NeuroHub’s case David Gray-Hammond, Helen Edgar and the guests they invite – as well as other Autistic people who are at different points in their journey and bringing their own unique lived experience to the discussion.

Communities can feel much safer than the wider internet as a place to ask questions in forums; connect; share personal experiences; learn from one another; feel validated about struggles; and celebrate wins along the way. It’s also more likely that outdated and pathologising information will be helpfully challenged and deconstructed when it comes up.

The addition of live, interactive Zoom presentations, & support and social events adds a deeper layer of connection than many alternatives such as Facebook groups.

One-to-one support

Though it often requires more resources, one-to-one support in an informed Autistic space can provide something uniquely tailored to you. Whether it’s therapy, coaching, mentoring, or peer support, there are options catering to almost every identity and experience.

As a counsellor and therapist, it’s a huge honour to spend my working days helping Autistic and otherwise neurodivergent people to explore and make sense of their neurodivergent experiences; to examine and restory their past in light of their new knowledge; to unpack neuronormativity and internalised ableism; and to build a life that works for them.

The one-to-one spaces I’ve access for myself have helped me in ways I never conceived, and continue to support me to learn about broader Autistic experiences and my own Autistic identity at a much deeper and more personal level.

Media and Structured Support

Whether you prefer to get your information through books, videos, podcasts, articles, or elsewhere, there are high quality, neuroaffirming options out there in amongst the sea of pathology and neurodiversity-lite. However, if you’re new to exploring Autistic identity it can be hard to filter the well-informed and neuroaffirming from the pathologising, ableist or outdated. I attempt to support with this each month via my Neurodiversity Newsletter which rounds up and signposts to some of the newest neuroaffirming content.

Helen Edgar, Meghan Ashburn, and Kieran Rose have all produced helpful book lists that remove the guesswork.

David and Helen’s ‘Restorying Autism’ workbook and NeuroHub’s ‘Embracing Our Autistic Selves’ course are examples of structured support options which walk you through steps to build a positive and well-informed Autistic identity. If you appreciate getting everything in one place via video or written format, and want reassurance that it will be Autistic-affirming and up to date, then options like this are invaluable. The interactive element of the course and community discussion can also help you connect with others on the same journey.

In person events

Well-informed Autistic events are rarer in person due to the realities of geography. While online informed Autistic spaces attract people from many different countries, physical options can require substantial travel to access unless you happen to be fortunate enough to live near a particular group or event. If you enjoy in-person connection they can definitely be worth the effort and give you the chance to meet and talk with others directly.

Some events, such as the upcoming Autistic Mental Health Conference, offer hybrid options so you can attend in person if you wish, or online if that’s more convenient.

Friendships

I’m privileged to be working in the neuroaffirming online space with other neurodivergent people. I recognise that this has allowed me to connect with other Autistic therapists and advocates in a way that isn’t necessarily as easily open to everyone. But as you connect with other Autistic people, perhaps through some of the avenues outlined above, you may well find yourself developing friendships and connecting directly with others who are also learning about Autistic identity and their own place within it. Friendships with well-informed neurokin can be some of the most healing and meaningful of all.

Jade Farrington (she/her) is a UK-based NeuroHub community member who works online as a disabled and neurodivergent counsellor and therapist. Jade writes at https://jadefarrington.substack.com

Abstract

This article challenges traditional Western education models, prioritising normative performance over individualised learning. It argues that these systems, established during the Industrial Revolution to fulfil capitalist needs, have become oppressive for neurodivergent learners, particularly Autistic individuals. Drawing on neuroqueer theory and the neurodiversity movement, the article advocates for educational spaces rooted in autonomy and consent, allowing for authentic expression and interest-led learning. The authors propose a shift towards embodied, interdependent, and rhizomatic learning environments that honour neurodivergent needs, challenging the current obedience-based, meritocratic structures. Through this lens, the article critiques the rigid structure of modern education and calls for systemic change that nurtures safety, trust, and neuroqueering potential. Educators can support all students’ well-being by creating inclusive, flexible learning spaces, particularly those marginalised by neuronormative standards.

Introduction

Western models of education are held up as the pinnacle of learning spaces. Despite this they continue to fail huge swathes of children and young people, with many (regardless of neurocognitive style) being forced out of the school system by the inaccessibility of the classroom setting, this is especially prevalent amongst the Autistic and neurodivergent population (Connolly et al., 2023).

The most significant part of the schooling systems that we know today came with the industrial revolution. Having an illiterate workforce presented a challenge to the growing complexity of capitalist production processes, and it was clear that a more universal standard of education would be required to fulfil the need of progress. Education became about increasing productivity through uniformity, and less regard was paid to individual needs or experiences.

The 20^th century further expanded this with the introduction of compulsory education in many western countries. The latter half of the 20^th century brought a renewed focus on diversity and inclusion with the aim to reshape education as we know it to better serve a student population of greater diversity. Prior to this, education was reserved for the elite, non-disabled, and otherwise privileged few (Chapman, 2023).

Despite a renewed focus on more access to education for a greater number of people, education has perpetuated a meritocratic attitude within which we are made to feel that without academic achievement our social value will be reduced (Fisher, 2021). Western education in this sense has become a tool of oppression within which those that have access to autonomy within their education are the ones who receive privilege (Heleta, 2023). They benefit from the productivity of those who are not afforded the luxury of autonomy within their education (Kumashiro, 2000).

The Modern Learning Space

The modern classroom is epistemologically incompatible with the inclusivity that it purports to honour (Shapiro, 2020). It is built upon a politics of resentment that manipulates our fear of reduced social status in order to force us to conform with its principles and goals, regardless of whether those goals are relevant or helpful to the individual (Boren, 2024) . Current curriculums and access to education is controlled by a privileged class that moulds the learning space to their own benefit which upholds class disparities and the capitalist systems (Kumashiro, 2000).

Young minds that are predisposed to learning are placed into a learning space where the information they consume is dictated by the needs of capitalism rather than their own needs or goals (Kumkel, 2018). This perhaps plays a role in organised religions vested interest in education given its ability to shape the values and ethics of young people (Heleta, 2023).

Take for example the suggestions of banning the teaching of critical race theory. Racism and white supremacy are a tool of oppression that serves those at the top of the system. Therefore, many call for its removal from educational systems in order to protect those who use white supremacy to their benefit (Abu Moghli & Kadiwal, 2021).

The modern learning space has become a site of societal control wherein young people are conditioned into normativity rather than allowed to follow their interests and expand their repertoire of knowledge (Foucault, 1977). This systemic conditioning nurtures a culture of oppression via behaviourism. The basis of which is a positivist attitude that there is a pinnacle of human behaviour (which we call neuronormativity) and sits firmly in the pathology paradigm through the medicalisation and targeted elimination of any embodiment or behaviour that diverges from normative standards (Walker, 2021). The behaviour is seen as a separately occurring phenomenon that occurs uncoupled from one’s subjective experience.

This systemic oppression directly encourages Autistic people to internalise ableism (Sinclair, 2012). It is a necessary tool of privilege that seeks to retain the imbalance of power within western society.

What Happens To Those Who Cannot Be Conditioned Into Normativity?

Society breaks those that cannot be conditioned into normativity by convincing them they were already broken (Sinclair, 2012). Tools such as stigma, medicalisation, behaviourism, creation of social hierarchies, and other forms of oppression uphold the pathology paradigm (Walker, 2021). The pathology paradigm can be considered as a worldview under which all that deviates from “the average man” (Quetelet, 1842) is the metaphorical broken machine as positioned by Descartes (Chapman, 2023). The pathology paradigm positions the neurodivergent brain as suboptimal (and therefore subhuman) to the needs of society and in need of correction and repair (Walker, 2021).

This pathological approach to non-conformity set the stage for the emergence of eugenics and institutionalisation of those who did not meet the exact standards or normativity in terms of their productivity and expression of Self (McCusker, 2012). This can be traced back to the late 19^th century with Galton’s work to apply things like selective breeding to human populations in order to produce so-called desirable traits (McCusker, 2012).

While eugenics is now widely regarded as abhorrent, other systems have been put in place to integrate non-conforming students into this system. Rather than eliminating children who are neurodivergent, western society implements complex legally binding assessments and education plans. When standard tools of conditioning are ineffective, systems use methods that can be effectively summed up as “forcing square pegs into round holes” (Slee, 2011).

This is deeply problematic and contributes to the staggeringly high suicide rate for not just Autistic children, but adults as well, diagnosed or not (Cassidy et al., 2022). It may also play a role in the litany of co-occurring conditions that Autistic people experience due to its role in creating chronic stress between an Autistic person and their interaction with their environment (McEwan & Stellar, 1993). Other negative outcomes that need to be considered include substance use issues, mental health issues, and criminal activity and exploitation, all of which are known outcomes of minority stress (Botha & Frost, 2020).

A widely known issue for marginalised learners is the “school to prison pipeline” that see’s those who cannot achieve in this meritocratic system pushed into criminal exploitation and eventual incarceration. This in particular effects multiply marginalised and racialised groups (Wald & Losen, 2003). One way or another, if you can’t be conditioned, you are segregated or eliminated from society at large. Disturbingly common outcomes for Autistic people are suicidality, institutionalisation, or imprisonment (Hedley, 2017).

Looking For An Antidote

The immediately observable outcomes of these systemic issues can be observed in the increasing rates of mental health issues and the misleadingly named “school refusal” that has been particularly high in UK schools with persistent absence almost doubling between 2018/19 and 2022/23 (Department for Education, 2023). 92.1% of absent children are neurodivergent and 83.4% are Autistic (Fielding et al., 2024). In children aged 7 to 16 years (in England) the rates of mental health issues among students rose from 1 in 9 (12.1%) in 2017 to 1 in 6 (16.7%) in 2020 (NHS Digital, 2022).

Mental health issues disproportionately affect Autistic children, with some 70% meeting the criteria for a mental health diagnosis, versus 14% of non-Autistic children; the presence of ADHD further increased the likelihood of a mental health diagnosis (Simonoff et al., 2008). It should be noted that the COVID-19 pandemic both showed us that non-traditional schooling can work, while also seeing negative outcomes for students forced to return to the status quo Pelicano et al., 2021).

This highlights that current systemic oppression within the educational system is having the opposite effect of that which is intended. Rather than conditioning children into normative performance, it is instead causing a crisis of wellbeing that is removing children from the system that conditions them (Fisher, 2021). The pandemic created space for children to learn and engage with education with greater autonomy, and that autonomy was denied upon return to the physical school building. The logical conclusion is that the current status quo does not work for anybody, but this is amplified for Autistic children and young people who serve as the “canary in the coal mine” in this context (Fisher, 2021).

We are reaching a critical point in society where few are benefiting from our current education system. Fisher’s (2021) also highlights this from the perspective of teachers, students, and parents/carers. The purpose of education hasn’t changed over the years; though we no longer need workers for factory production lines and should not be endorsing behaviourist approaches to fulfil this outdated perception that education is only there to serve capitalism. The consequences of this way of approaching education means that children are becoming more ‘disembodied’ and alienated as time goes by (Aldred & Aldred, 2021). Both students and teachers have less autonomy than ever before.

Neoliberal society requires high levels of productivity at the cost of autonomy. We are encouraged to produce profit while costing the system as little as possible. Education currently serves as a means to prepare children and young people for this by enforcing normativity from a young age (Chapman, 2023). School-aged children and young people are denied autonomy in favour of meeting goals and standards that have been arbitrarily set according to the needs of the system (Aldred & Aldred, 2021). Neoliberalism’s requirements have become so unachievable that the system is essentially cannibalising itself. Rather than nurturing and encouraging a workforce, it is creating a greater need for public health and social care services. Neoliberalism is creating a need to move away from neoliberalism (Brown, 2015).

In response to this terminal capitalism we have seen the emergence of grassroots resistance among minority groups. Of particular relevance to this discussion is the emergence of the social model of disability (Oliver, 1983), this positioned disability as a matter of equal access rather than the cartesian idea of broken machines/people. This new way of thinking lead to the establishment of critical disability studies in academia, subsequently followed by the community creation of the neurodiversity movement in the 1990’s (Botha et al., 2024). The neurodiversity movement built on the social model of disability and the long-established concept of biodiversity to position diagnoses such as autism as natural variations of human bodyminds rather than disorders or conditions (Walker, 2021).

Emerging from the grassroots resistance to systemic oppression is the conceptualisation and practice of neuroqueer theory and neuroqueering respectively. Neuroqueer theory invites people of all neurocognitive styles to queer their bodyminds through the subversion of neuronormativity (Walker, 2021). This in turn allows us to open up routes out of restrictive systems and see the potential that has been obscured from our view. We the authors propose that neuroqueering may present a means to “throw away the masters tools” (Walker, 2021) and liberate the education systems of the west from normative performance.

How Does One Neuroqueer Learning Spaces?

We posit that autonomy is one of the most fundamental principles of neuroqueer theory. In order to neuroqueer, one must first have autonomy. This is problematic in western education systems that deny children and young people their autonomy by default (Fisher, 2021). Therefore, the first step in neuroqueering learning spaces is to decouple the thoughts of both learners and teachers from “what am I supposed to do?” to “how do I exist authentically?”, or to put it in simple terms, we must ask ourselves what we want to do.

A neuroqueer learning space needs to be fluid. As we create and explore possibilities through autonomous neuroqueer practice, the learning space itself needs to move with the needs of it’s students. In order to understand neuroqueering’s relationship with Autistic learners, we have to understand Autistic culture and performance. Autistic people naturally occupy a neurologically queer space with their interaction with the world and embodiment (Yergeau, 2018). A learning space built on autonomy allows for the neurologically queer expression of Autistic learners, where as current educational practices seek to eliminate this expression via neuronormative practices.

This autonomy via authenticity is built upon the vital foundation of safety and trust:

“Can we trust the space you offer?

Can we trust the words you utter?

Can we trust the time decided?

Can we trust the form provided?

Can we trust your singular view?

Can we trust the treatment we receive from you?

Can we trust the way you perceive?

Can we trust you to sit, listen and receive?

Can we trust you not to leave another dent……in us….again? Can we trust the system you’ve decided and provided

… will it actually be in our best interest…

… with our knowledge and guide?”

Fraser, 2019

Historically and presently, no, we cannot trust. We exist within a system that uses it’s words and space to eliminate the potential for neuroqueering. As a foundation stone we believe we need an embodied approach to education and we need our educational facilitators to act as “space-holders” to allow the freedom of creative learning to take place so children feel safe to be themselves (Aldred & Aldred, 2023).

Aldred & Aldred (2023) wrote, “There is no learning without the body.” An embodied educational practice is based on trust. Once you have trust you can support well-being and co-regulation of the bodymind. An embodied educational practice advocates for a body and sensory system first, interdependence and relational approaches, omnidirectional learning, and offers the opportunity for neuroqueering potential.

“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.”

Brown, 2017

Current systems rely upon obedience, which is incompatible with interdependence. Rather than building safety and trust, obedience removes the autonomy to choose whether or not to consent. It is built on fear; fear of punishment, fear of parental involvement, fear of academic failure. There cannot be interdependence or collaboration without consent. Obedience is enforced, whereas consent is given and can be withdrawn at any time (Freire, 1970).

The matter of consent is as relevant to teachers as it is to students. Teachers with autonomy are more readily able to shape learning spaces to the needs of learners. Current systems take a prescriptive approach to education that limits the actions that educators can take within the learning space. This essentially removes the freedom to address needs, which is highly problematic for the Autistic learner (Fisher, 2021). The requirement of obedience is not helpful to anyone, and makes teachers and facilitators victims of the system in similar ways to their students.

Through the autonomy of consent, we create spaces that allow for Autistic children’s natural penchant for flow-state and hyperfocus, with the subsequent evolution in learning that arises from that. Spaces become collaborative, with learning being facilitated rather than dictated. Children and young people can be guided by interest and intrinsic motivation (Fletcher-Watson & Happé, 2019), . Via the process of neuroqueering we dismantle the enforced hierarchy and instead allow for consensual leadership and facilitation. Consent allows for informed decision-making by all parties in the learning space, not just those with the privilege of power.

Within an educational context, this means decentralising education, or at least making attempts within our own lives to change the way learning spaces are conceptualised, moving away from the hierarchical model of ‘Master’ and ‘Student. Deleuze and Guattari (1987) would describe this as an arborified structure, where the student branches rely in the master’s tree trunk. What happens to the master impacts the students that depend on them. We propose that a rhizomatic approach (Deleuze & Guattari, 2013), to be considered as an interdependent system with no central point, allows for more effective learning and deconditioning from neuronormative standards. Or simply, leadership via ongoing consent with the aim of facilitating interest led collaboration with no pre-determined end point.

Through the practice of consent and autonomy, we can create pockets of safety within the current system, demonstrating ways to move away from the misplaced ideals of western education. A decentralised, rhizomatic learning space becomes a shelter for marginalised children while the wider work of systemic change is undertaken that will benefit all.

We need trust in every space, in all our personal and professional relationships and in ourselves so we can engage and learn. We change spaces drop by drop, until they have become the limitless ocean of possibility. With trust as a foundation that enables us to intentionally liberate ourselves from culturally ingrained and enforced neuronormativity, we can begin to neuroqueer and transform ourselves and our learning spaces.

Practical Considerations For Neuroqueering Learning Spaces

To neuroqueer is not to destroy, but to reconstruct, opening new possibilities where previously thought impossible. To neuroqueer a learning space you must first understand it’s foundations and structure, then use that structure in such a way that it is reformed and redefined. Brick by brick we are rebuilding the master’s house, using tools of our own design, so that it is no longer the master’s house. It is a perpetual process with infinite iterations that allows us to adjust at will. It is not the work of a single person, there is no hierarchical nature to how one neuroqueers space. Neuroqueering on a systemic level is a collaborative endeavour.

The educationalist in this respect could be the model for how neuroqueering the contemporary learning space alters how we think, feel, and embody our education. For Autistic students this means modelling autonomy and consent where previously it has been denied. Normative structure of education deny autonomy through everyday acts. Examples include the need for permission to use the toilet, strict deadlines on coursework, and enforcing of a restricted curriculum. The teacher then can model autonomy through somatic liberation and interest-led learning. Allow Autistic learners to lead through their experience of their bodymind and the flow of their interests.

“Can we trust you to understand that sound is once, twice, three times as loud?

Can we trust you to understand that light, ‘that light’… there is burning, burning our eyes?

Can we trust you to provide the space to breathe?

Can we trust you to understand that our senses are more involved BIGGER?

Can we trust you to let us move away from you… that you cause the trigger?

Can we trust you not to deplete our hard fought for energy and vigour?

Can we trust you to listen when we say we are tired…. and let us leave the room?

Can we trust you to give us time to form……form our own words…. it our way and not yours?

Can we trust you not to constantly correct when we misspell or stutter?

Can we trust you to say what you are going to do and not just assume?

Can we trust you to understand that your correction… may only be correct for you?

Can we trust you to not magnify difference and constantly question our existence?

Can we trust you to leave us and let us decide?

Can we? Can we trust you? Can we decide?

Fraser, 2019

It is not enough for students to trust their educator. For the educator to model autonomy and consent they must shift their cognition to trust in themselves, the ultimate tool we have in an oppressive society. Oppression relies on us not trusting the Self, when we change that, oppressive measures become less effective. The systems of oppression are built to convince us to trust in them and not ourselves by destroying our sense of Self. The destruction of trust in oneself can be found at the root of many children’s lack of self-worth and even their abuse by those with predatory intentions. By modelling trust in oneself, those teaching students may then begin to model autonomy and consent, shifting away from the culture of domination that is so pervasive in western education.

Cavendish Learning Spaces: A Hypothetical Case Study

Thornburg (2013) advocates for the creation of spaces that provide the autonomy and accommodation of need that allows for flow to occur and all students to be met in their own space. It provides safety and freedom to learn in ways that empower the learner rather than enforce a regime. Boren (2021) conceptualised these as Cavendish spaces in the context of neuroqueering learning spaces.

The Three Cavendish Learning Spaces (Boren & Edgar, 2024) comprise of:

Caves: Spaces for quiet reflection and self-directed or interdependent exploration and learning, recovery and rest. A private space to transform learning from external knowledge to internal belief. Home of reflective construction. Cave’s build autonomy through private space to process information and understand its impact on the student’s life. It is a place of safety in one’s own company away from instruction or routine. The cave is a space of building interoception through introspection, allowing the student to understand the needs of their bodymind.

Campfires: Spaces for learning with a storyteller - teacher, mentor or carer. Spaces where education facilitators actively subvert neuronormativity. Educators embark on their transformative neuroqueer journey so their re-storying can inspire neurocosmopolitanism (Walker, 2021). The campfire allows for the student to consent to a temporary hierarchy in which they learn from the wisdom of a teacher, rather than being forced to abide by their teachings. The student can step away from the campfire at any point, according to the needs of their bodymind. It requires the somatic freedom to listen and respond to one’s bodymind without the need for approval. It is a space where students are encouraged to know their own needs and trust in them. It is not about being given a choice or arbitrary, tokenistic options, it is about choice not being a factor, as it was never held back from availability.

Watering Holes: Spaces for social learning with or alongside peers and carers. Community enables thoughts and ideas to expand rhizomatically. These represent a space in which the human need for connection is fulfilled at a consensual and mutually beneficial pace. The student can share their interests and grow their knowledge through the mutual exchange of information while creating friendships.

Learning takes place in all of these spaces. All of the learning is a critical as the other, regardless of the space within which it occurs. It does not have to be radical or grandiose. It invites the learner to become neuroqueer by opening up to the concept that space and bodymind can be neuroqueered. Simply by questioning the status quo we are already at the start of dismantling the status quo. One drop at a time, until the limitless ocean cycles into something new, again, and again, and again.

Conclusion

In order to shed the shackles of normative culture, we must attack it at its root; the system of education that indoctrinates us into such culture.

The boundaries between current societal standards for education, and the liberated education of potential futures are not as robust as we have been led to believe. It’s time to step beyond the path that was laid before us and take foot on the path less trod.

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Grace, J. M. (2025) Recognising The Belonging Of Profound Intellectual And Multiple Disabilities In Research Through A Collaborative Exploration Of Identity. University Of Southamptom Doctoral Thesis.

Hedley, D., Uljarević, M., Wilmot, M., Richdale, A., & Dissanayake, C. (2017). Brief report: Social support, depression, and suicidal ideation in adults with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 47(11), 3669-3677. https://doi.org/10.1007/s10803-017-3274-2

Heleta, S. (2023). Decolonisation of higher education: Dismantling epistemic violence and Eurocentrism in South Africa.

Fraser, P. (2019). Can we trust? Stimpunks Foundation. https://stimpunks.org/can-we-trust/

Kumashiro, K. K. (2000). Toward a theory of anti-oppressive education.

Kunkel, C. A. (2018). Capitalism in the classroom: Confronting the invisibility of class inequality. In K. Haltinner & L. Hormel (Eds.), Teaching economic inequality and capitalism in contemporary America (pp. 211-240). Springer. https://doi.org/10.1007/978-3-319-71141-6_11

Lorde, A. (2018). The master’s tools will never dismantle the master’s house. Penguin Classics.

McEwen, B. S., & Stellar, E. (1993). Stress and the individual: Mechanisms leading to disease. Archives of Internal Medicine, 153(18), 2093-2101. https://doi.org/10.1001/archinte.1993.00410180039004

McNutt, C. (n.d.). More Human Than A Ladder Or A Pyramid: Psychology, Behaviorism, And Better Schools. Human Restoration Project.

Mitchell, D. (2004). Cloud atlas. Sceptre.

NHS Digital. (2022). Mental health of children and young people in England 2022 - wave 3 follow-up to the 2017 survey. Retrieved from https://digital.nhs.uk/data-and-information/publications/statistical/mental-health-of-children-and-young-people-in-england/2022-follow-up-to-the-2017-survey

Oliver, M., & Oliver, M. (1983). Introduction: Setting the scene. Social Work with Disabled People, 1-5.

Pellicano, E., Brett, S., den Houting, J., Heyworth, M., Magiati, I., Steward, R., ... & Stears, M. (2021). COVID-19, social isolation and the mental health of autistic people and their families: A qualitative study. Autism, 25(3), 814-827. https://doi.org/10.1177/1362361320977615

Shapiro, S. (2020). Inclusive pedagogy in the academic writing classroom: Cultivating communities of belonging. Journal of Academic Writing, 10(1), 154-164. https://doi.org/10.18552/joaw.v10i1.607

Sinclair, J. (2012). Don’t mourn for us. In J. Bascom (Ed.), Loud hands: Autistic people speaking. The Autistic Press.

Slee, R. (2011). The irregular school: Exclusion, schooling and inclusive education. Routledge.

Stimpunks Foundation. (n.d.). Behaviorism. Stimpunks. Retrieved September 6, 2024, from https://stimpunks.org/glossary/behaviorism/

Wald, J., & Losen, D. J. (2003). Deconstructing the School-to-Prison Pipeline. In J. Wald & D. J. Losen (Eds.), New Directions for Youth Development (Vol. 99, pp. 9-15). Jossey-Bass. https://doi.org/10.1002/yd.52

Walker, N. (2021). Neuroqueer heresies: Notes on the neurodiversity paradigm, autistic empowerment, and postnormal possibilities. Autonomous Press.

Quetelet, A. (1842). A treatise on man and the development of his faculties (T. W. Shore, Trans.). Harper & Brothers.

Simonoff, E., Pickles, A., Charman, T., Chandler, S., Loucas, T., & Baird, G. (2008). Psychiatric disorders in children with autism spectrum disorders: Prevalence, comorbidity, and associated factors in a population-derived sample. Journal of the American Academy of Child & Adolescent Psychiatry, 47(8), 921-929. https://doi.org/10.1097/CHI.0b013e318179964f

Thornburg, D. (2013). From the campfire to the holodeck: Creating engaging and powerful 21st century learning environments. John Wiley & Sons.

Yergeau, M. R. (2018). Authoring autism: On rhetoric and neurological queerness. Duke University Press.

Autistic community has traditionally been ignored by the medical industrial institution at large, positioning Autistic people as asocial and in deficit when engaging in social exchanges. In this article, the author explores the nature of the double empathy problem by positioning Autistic community through a post-humanist lens, as a mycelial structure growing in a rhizomatic nature. Thus, the author argues that Autistic sociality (AuSociality) represents a non-hierarchical interdependent social style that creates a fundamentally different culture when compared to mainstream sociality. It is then this socio-cultural difference that the author argues creates the double empathy divide.

Introduction: The Myth Of Social Deficit

For decades, dominant medical and psychological frameworks have positioned Autistic people as fundamentally lacking in social capacity. This framing is deeply embedded within what Chapman’s (2023) Empire of Normality critiques as the normative machinery of psychiatry. It casts Autistic communication as broken, deficient, or incomplete; the Autistic person in this story is alone in the social world, reaching out but never quite achieving self-actualisation. This concept of never achieving true sociality echoes Yergeau’s (2018) demi-rhetoricitiy where we are both too Autistic to achieve rhetorical value, but simultaneously not Autistic enough to engage in the rhetoric surrounding autism. Thus, we are both deficient of social capital by exclusion and simultaneously framed as suffering for not having enough social capital.

I would however argue that this framing makes a fundamental mistake by assuming that Autistic people lack the social ability required to access the social capital provided by community.

Emerging Autistic-led scholarship and community discourse suggest something incredibly poinient: that Autistic people are not asocial, but differently social; that what has been misread as absence is in fact difference. This difference is not random or disordered, but patterned; culturally, relationally, and deeply complex when approached as an ecological phenomenon.

This article explores that possibility. It reframes the Milton’s (2012) double empathy problem as a rupture between two distinct social ecologies. Drawing on the work of Gilles Deleuze and Félix Guattari, alongside Autistic scholars such as Nick Walker, M. Remi Yergeau, Robert Chapman, Erin Manning, and Helen Edgar, it proposes a new conceptualisation: AuSociality; a rhizomatic, mycelial mode of being with others.

The Double Empathy Problem As Cultural Rupture

The double empathy problem, first articulated by Damian Milton (2012), suggests that communication breakdowns between Autistic and non-Autistic people arise from mutual misunderstanding rather than unilateral deficit. This shifts the question from “What is wrong with Autistic people?” to “What happens when different ways of being meet?”

Yet even this framing, while powerful, often remains at the level of interaction. It describes the traits of disconnection, but not its deeper structure.

To understand that structure, we must move beyond individual cognition and into a broader cultural cognitive style.

As Nick Walker (2021) argues in Neuroqueer Heresies, neurodivergence is not simply a neurological variation but a way of being-in-the-world; a relational ontology. Similarly, Remi Yergeau (2018) challenges the assumption that Autistic people lack rhetoric, instead demonstrating that Autistic communication has been systematically misrecognised by neuronormative frameworks.

The double empathy problem, then, is not merely a mismatch of signals. It is a collision of epistemologies; two different ways of organising meaning, attention, and connection at the level of social culture.

Rhizomes and Mycelium: Mapping Autistic Sociality

Autistic social behaviour can be understood as a form of ethodiversity (Tarragnat, 2025) where behaviour and existential nature differs from broader human ecologies and sociality. To make sense of this difference, we turn to the concept of the rhizome.

In A Thousand Plateaus, Gilles Deleuze and Félix Guattari (1987) describe the rhizome as a non-hierarchical network, spreading horizontally, without a central root or organising authority. Unlike tree-like (arborescent) structures, which impose order through hierarchy and linear progression, rhizomes grow through connection, multiplicity, and emergence.

This concept maps uncannily well onto Autistic modes of sociality.

Autistic communities often form not through rigid social hierarchies or implicit rules, but through shared intensities; common interests, mutual recognition, and moments of deep resonance. Connections are not governed by status or social performance, but by attunement. As with Munday’s (2023) Neuroanarchy concept, they actively resist normativisation and the enforcement of rigid social structures.

Here, the metaphor of mycelium becomes useful.

Mycelial networks, vast underground fungal systems, operate through distributed intelligence, resource-sharing, and mutual support. They are not visible in the same way as trees, but they sustain entire ecosystems. They communicate chemically, adaptively, and relationally.

Neimanis (2009) positions humans as bodies of water stating “We are both materially and semiotically entwined with other bodies of water”. Autistic culture is deeply entwined from space to space, and as such I would understand the AuSocial community as the fungal mycelium, connected and interdependent; sharing resources and knowledge across a rhizomatic structure. We are all entwined and impacted by one another either directly or indirectly.

Autistic sociality, or AuSociality, can be understood in similar terms:

• It is distributed, rather than centralised

• It is interest-driven, rather than norm-driven

• It is relational, rather than performative

• It is emergent, rather than scripted

As Helen Edgar (2023) suggests in her work on Autistic relational spaces, these modes of connection create entire realms of interaction that are often invisible to those outside them but deeply meaningful within.

Minor Gestures and the Subtle Architecture of Connection

One of the reasons AuSociality is so often misrecognised is that it does not always conform to dominant expectations of social behaviour. It does not necessarily announce itself loudly or clearly; instead, it often operates through what Erin Manning (2016) calls minor gestures.

Minor gestures are small, often imperceptible acts that nonetheless carry transformative potential. They are the hidden shifts in attention, the subtle acts of recognition, the shared moment of focus on a particular detail.

In Autistic sociality, these gestures might include:

• Parallel engagement in a shared interest

• The offering of information as a form of care

• The quiet presence of co-regulation without demand

• The recognition of another’s intensity without judgment

To a neuronormative observer, these gestures may appear insufficient, incomplete, or even absent. But within an Autistic socio-relational ecology, they are the very fabric of connection. This is the site where the double empathy problem becomes most visible as a failure to perceive communication that is already happening. Neuronormative sociality lacks the ability to perceive the minor gestures that constitute the Autistic socio-relational ecology.

Neuroqueering Sociality: Beyond Normative Interaction

To fully grasp AuSociality, we must also consider the process of neuroqueering.

For Nick Walker, neuroqueering involves disrupting and reimagining normative assumptions about mind, behaviour, and identity. It is both a personal and political act; a refusal to conform to neuronormative expectations, and an exploration of alternative ways of being.

AuSociality can be understood as inherently neuroqueer. It resists:

• The demand for constant eye contact

• The prioritisation of small talk over meaningful exchange

• The performance of socially acceptable affect

• The linear progression of conversation

Instead, it embraces:

• Nonlinear communication

• Depth over breadth

• Authenticity over performance

• Connection through shared focus

In this sense, AuSociality is a challenge to the very idea of the norm itself rather than simply being a deviation from social norms.

Mindfully ivergent Grounding Pack

The Political Ecology of Misunderstanding

The misrecognition of AuSociality is not neutral. It is shaped by systems of power.

As Robert Chapman (2023) argues, the concept of “normality” is historically contingent and politically enforced. It privileges certain ways of being while marginalising others. Within this framework, AuSociality is actively devalued as a form of sociality.

Similarly, Remi Yergeau (2018) highlights how Autistic communication has been systematically excluded from what counts as legitimate rhetoric. Autistic voices are often dismissed as incoherent, inappropriate, or irrelevant; not because they lack meaning, but because they do not conform to dominant expectations.

The double empathy problem, then, is not simply interpersonal. It is structural. It reflects a world that has been designed for one kind of sociality, and which struggles to recognise another.

Toward Recognition: Reframing AuSociality

If we are to move beyond the double empathy divide, we must do more than increase awareness. We must reframe our understanding of sociality itself.

This involves:

1. Recognising Autistic sociality as valid and complete
   Not a lesser version of neurotypical interaction, but a different form altogether

2. Valuing minor gestures as meaningful communication
   Learning to perceive connection where it has previously been overlooked

3. Embracing relational multiplicity
   Accepting that there are many ways to be social, not just one

4. Challenging neuronormative standards
   Questioning whose ways of being are privileged, and why

In doing so, we begin to see that the problem is not a lack of empathy but a lack of shared ground and cultural competence. Neuronormative social styles approach AuSociality the same way one might read a language they are unable to translate

Autistic Mental Health Conference

Conclusion: The Mycelial Future

Autistic community is not a collection of isolated individuals. It is a living network; a mycelial web of connection, care, and shared experience. It grows beneath the surface, often unseen, in a rhizomatic style. It resists hierarchy. It thrives on mutual recognition.

When we are able to understand it as difference as opposed to deficit, we open the possibility of something new. Not a world where Autistic people are forced to adapt to dominant norms, but a world where multiple forms of sociality can coexist. Where mycelial rhizomes in shared space and where minor gestures are recognised as the seeds of transformation.

A place where empathy is not a one-way demand, but a shared practice of becoming-with.

References

Chapman, R. (2023). Empire of normality: Neurodiversity and capitalism. Pluto Press.

Deleuze, G., & Guattari, F. (1987). A thousand plateaus: Capitalism and schizophrenia. University of Minnesota Press.

Edgar, H. (2023, July 28). Ethodivergent hearth building: A relational neuroqueering community practice. Autistic Realms. https://autisticrealms.com/ethodivergent-hearth-building-a-relational-neuroqueering-community-practice/

Manning, E. (2016). The minor gesture. Duke University Press.

Milton, D. E. (2012). On the ontological status of autism: The ‘double empathy problem’. Disability & society, 27(6), 883-887.

Munday, K. (2023, April 17). Definitions for Autistic shielding and neuro-anarchy. Autistic and Living the Dream. https://autisticltd.co.uk/2023/04/17/definitions-for-autistic-shielding-and-neuro-anarchy/

Neimanis, A. (2009). Bodies of water, human rights and the hydrocommons. Topia: Canadian journal of cultural studies, 21, 161-182.

Tarragnat, O. (2025, February 25). What is ethodiversity? Ombre Tarragnat. https://ombretarragnat.com/2025/02/25/what-is-ethodiversity/

Walker, N. (2021). Neuroqueer heresies: Notes on the neurodiversity paradigm, Autistic empowerment, and postnormal possibilities. Autonomous Press.

Yergeau, M. R. (2018). Authoring autism: On rhetoric and neurological queerness. Duke University Press.

Stimpunks Foundation. (n.d.). Neurodiversity and cultural paradigms.

Functioning labels such as “high-functioning,” “low-functioning,” and terms like “profound autism” impose external judgments that often deny Autistic people access to support, undermine autonomy, and distort how our needs are understood. Autistic advocacy and research show these labels are harmful and inadequate, and that naming specific support needs is a more just and respectful way forward.

Visit Autistic Realms

During Autism Awareness and Acceptance Month, there is often a focus on learning about autism and being more inclusive of Autistic people. However, real support goes beyond awareness or acceptance alone. The words we use matter, and functioning labels can shape access to support, autonomy, and belonging in ways that directly affect Autistic people’s mental health and well-being. Functioning labels don’t describe us; they gatekeep access to support, autonomy, and opportunity. This blog, written for the NeuroHub Community Journal is an invitation to look more closely at those labels and to consider what it means to truly support Autistic people.

Functioning labels don’t describe us; they organise access to support, autonomy, and power. They are often used to justify the denial of support to those seen as “high functioning,” while restricting autonomy for those seen as “low functioning”. Functioning labels were never designed to support Autistic people, they were designed to make Autistic people legible to systems and have power over us.

If you are Autistic and have ever been described as “high-functioning” or heard someone you love described as having “Profound Autism”, you will know these words do not sit lightly. They shape how people see us, how much support we are offered, and what others believe we are capable of.

Functioning labels are not descriptive tools; they are used within systems of sorting people into categories. They reduce Autistic people to how closely we approximate neuronormativity, and in doing so, they shape who is believed, who is supported, and who is denied, who is heard and who is silenced. They are words that cause wounds.

They are used to justify withholding accommodations from those seen as “too able,” while simultaneously stripping autonomy from those seen as “too disabled.” They do not protect us; they position us and cause harm. There is no accurate version of a functioning label, only different ways of being misunderstood. Functioning labels are not only inaccurate, they are also harmful (Autistic Self Advocacy Network, 2021; Finn Gardiner, 2018).

Autistic Mental Health Conference

What Are Functioning Labels?

Functioning labels such as “high-functioning,” “low-functioning,” “mild,” “severe,” or describing Autistic people in terms of “levels,” are shorthand categories often imposed by those researching on us or writing about us. They classify Autistic people based on our perceived outward behaviour and how closely we align with normative expectations, rather than reflecting our lived experience or actual support needs.

As Gardiner (2018) explains, the same person may be labelled “high-functioning” or “low-functioning” depending entirely on what someone chooses to notice and the context in which they are. These labels do not describe who we are; they reflect what others value, expect, or find acceptable. Autistic advocacy-led spaces have long argued that functioning labels operate as compliance-based judgments, measuring how well an Autistic person performs according to neuronormative expectations rather than recognising our actual strengths and needs.

A False Binary With Harmful Consequences

Functioning labels create a false binary that Autistic people are forced to live inside, either being “not disabled enough” to deserve support or “too disabled” to be trusted with autonomy and our voices are silenced.

There is no safe side of that divide; these labels operate as gatekeeping mechanisms, determining who is granted support, whose needs are taken seriously, and whose autonomy is respected (Autistic Self Advocacy Network, 2021; Stop ABA, Support Autistics, 2019).

Many people labelled “high-functioning” are only seen that way because they may be masking, often at high cost to their mental health, identity, and long-term well-being. Their struggles are minimised, their needs dismissed, and support withheld because they appear to be coping. This might look like an Autistic professional who is praised for performing well at work, yet denied reasonable adjustments, expected to sustain that level of output without support, and eventually reaching burnout, often told they were “fine” until they are no longer able to keep going and then have to suffer the consequences.

At the same time, those labelled “low-functioning,” “severe,” or described as having “profound autism” often experience the opposite harm: their autonomy is reduced, their voices sidelined, and their capabilities may be underestimated. This might look like a non-speaking Autistic person whose understanding is not seen because they do not use spoken language; decisions can be made about their life without their input, despite their ability to potentially communicate in other ways when given the right support.

For people with profound and multiple learning disabilities and other medical or significant health care needs, the harm can be even more significant. Communication may be more subtle, embodied, and relational, expressed through movement, affect, or interaction, and easily overlooked when support is not attuned. Presuming competence, in this context, is not about expecting performance, but about recognising personhood and providing the support needed for that to be expressed, as I have recently described in my blog about Intensive Interaction.

Alvares et al. (2019) found that IQ tests are often used as the basis for “high-functioning” labels, and that these labels are poor predictors of how Autistic people often have to balance and juggle their fluctuating capacity and sensory needs through the day. Many Autistic people without intellectual disability still experience significant challenges in daily living, demonstrating that these labels are fundamentally unreliable and unhelpful.

Kapp (2023) further argues that severity scales and terms such as “profound autism” risk reinforcing these same problems. Non or minimally speaking Autistic people may communicate meaningfully when provided with appropriate support, yet are frequently underestimated or overlooked by standardised assessments. Standardised assessments often measure how well someone can perform under narrow conditions, not what they understand, experience, or are capable of in the right environment.

This is not just a problem of outdated language; it is structural. These labels shape how support, recognition, and rights are distributed. Dignity and autonomy are not achieved by lowering expectations or imposing unrealistic ones, but by deeply understanding each individual’s communication style, meeting their sensory needs, and building responsive, relational support with each person.

It is not labels but the presence or absence of understanding, support, and respect that determines whether autonomy is upheld or denied for Autistic people. Functioning labels not only misrepresent us, they actively shape what happens to us and harm us.

Beyond Fixed Categories: Why Autistic Lives Cannot Be Reduced to Labels

One of the deepest problems with functioning labels is that they treat being Autistic as a fixed, stable state, a set of traits that can be observed, measured, and ticked off.

Being Autistic is not a static way of being, it is dynamic, fluid and context-dependent. Our needs shift across environments, relationships, and our lifespan. Burnout, sensory overwhelm, other co-occurring physical and mental health needs and other life circumstances all shape how much support we need at any given moment. From a monotropic perspective, functioning labels flatten the depth of attention, energy, and experience into static categories that cannot reflect how we actually move through the world, how our attention flows, how it becomes overloaded, and how it is sustained or supported.

A History Of Autism

This fluidity is also shaped by intersectionality and race, gender, class, sexuality, communication style, and access to resources, all of which influence how Autistic people are perceived, supported, or dismissed. The same person may be read as “coping” in one context and “struggling” in another, not because they have changed, but because the environment, expectations, and biases around them have.

A label applied in childhood cannot predict a person’s needs later in life. Many people who were denied support because they appeared “high-functioning” later often reach burnout, and their mental health is affected. Others, labelled “low-functioning,” may develop new forms of communication, connection, and autonomy when given the right conditions and support and some people may need ongoing support for all aspects of daily living.

Terms such as “profound autism,” “high functioning,” or “levels of autism” do not resolve this problem. They maintain systems of categorisation and segregation that prioritise some needs over others, without addressing the structural changes required to support all Autistic people.

From Labels to Support

The goal is not to replace one label with another, but to move toward clarity, specificity, and respect. Access to support is not something that should be earned through appearing “disabled enough”; it is a human right.

As organisations such as Autistic Self Advocacy Network (2021) emphasise, the most meaningful alternative is to: Describe what someone actually needs. This might look like:

• “[Name] uses AAC to communicate and benefits from extra processing time”

• “[Name] needs support with executive function, transitions, and sensory regulation”

• “[Name] is Autistic and has a co-occurring intellectual disability”

This shift is about more than language; it is about how we understand Autistic people and competence itself. David Gray-Hammond’s and Tanya Adkin’s framing of neurodivergence competence (2023) invites us to move away from judging Autistic people by how closely we meet normative expectations, and toward recognising how competence emerges when the right supports, environments, and relationships are in place. What is often interpreted as inability or overwhelm is frequently a reflection of unmet needs, inaccessible environments, or misattuned expectations.

What we often call “ability” is not a fixed trait, it is something that emerges in context. From an ecosystemic perspective, as explored through my work with David Gray-Hammond in our NeuroHub Community, support does not sit within the individual alone, it exists across systems, in relationships, environments and structures. When these systems are responsive and attuned, Autistic people are better able to access, express, and sustain their strengths. When they are not, what is often labelled as a lack of ability or “challenging behaviour” is more accurately a lack of support.

Functioning labels fail, not just descriptively, but relationally, systemically and structurally. They locate difficulty and failure within the person, rather than within the interaction between the person and their environment, shaping not only how someone is understood, but how their autonomy and agency are recognised or denied.

When we begin instead with listening, with tuning in, building understanding, connection, and meaningful relationships, we create the conditions in which Autistic ways of being, monotropic attention, and different communication and sensory needs can be recognised and supported, rather than misunderstood or dismissed.

Within this, autonomy and agency are not abstract ideals; they are lived through everyday interactions. They are expressed through supported communication, through having choices respected, and through being included in decisions that affect our lives. Consent is part of this, not as a one-off act, but as an ongoing, relational process that requires time, trust, and appropriate support.

Instead of generalising through inaccurate labels, we need to name and respond to specific needs through adjustments, accommodations, and support that enable people to be understood, valued, and believed so everyone can truly thrive and live the life they deserve.

A Note to Our Community

During Autism Awareness and Acceptance Month, there is often a focus on understanding, inclusion, and celebrating Autistic people. But awareness and acceptance alone are not enough if the language and systems around us continue to cause harm. Supporting Autistic mental health and wellbeing requires more than recognition; it requires change.

Sustainable Advocacy Toolkit

Functioning labels shape how Autistic people are seen and treated. They can deny access to support, restrict autonomy, and contribute to mental ill health, exclusion, and misunderstanding. If we are serious about the wellbeing of Autistic people, we must be willing to question the frameworks that quietly sustain these harms.

Your worth, your capacity, and your future are not defined by how others categorise you. Your strengths and challenges are both real, and both deserve to be understood and supported.

Autistic people do not need pity. We need understanding, respect, and support that meets us where we are.

If you are a non-Autistic professional, parent/carer or ally supporting an Autistic person, thank you for reading this and being part of the community. The language we all choose, the assumptions we all take time to question, and the ways we all listen and respond with each other matter. Functioning labels don’t describe us; they organise access to support, autonomy, and power.

This piece connects with my wider work at Neurohub Community with David Gray-Hammond, including Re-Storying Autism, our 7-module video course and workbook that deepens this relational, neuro-affirming understanding of supporting Autistic people beyond labels.

Submit your article to the NeuroHub Community Journal by clicking here.

NeuroHub Community | Newsletter is a reader-supported publication. To receive new posts and support our work, consider becoming a free or paid subscriber.

References

Adkin, T., & Gray-Hammond, D. (2023, April 11). Creating autistic suffering: Autistic safety and neurodivergence competency. Neurohub Community. https://neurohubcommunity.org/2023/04/11/creating-autistic-suffering-autistic-safety-and-neurodivergence-competency/

Alvares, G. A., Bebbington, K., Cleary, D., Evans, K., Glasson, E. J., Maybery, M. T., Pillar, S., Uljarević, M., Varcin, K., Wray, J., & Whitehouse, A. J. O. (2019). The misnomer of “high functioning autism”: Intelligence is an imprecise predictor of functional abilities at diagnosis. Autism, 24(1), 221–232. https://journals.sagepub.com/doi/10.1177/1362361319852831

Autistic Self Advocacy Network. (2021). Functioning labels harm autistic people. https://autisticadvocacy.org/2021/12/functioning-labels-harm-autistic-people/

Edgar, H. (2022). Autism is fluid. Autistic Realms. https://autisticrealms.com/autism-is-fluid/

Gardiner, F. (2018). The problems with functioning labels. Thinking Person’s Guide to Autism. https://thinkingautismguide.com/2018/03/finn-gardiner.html

Gray-Hammond, D. (2026, January 2). Understanding Autism: The Ecosystemic Model Of Distress. Neurohub Community. https://neurohubcommunity.org/2026/01/02/autism-ecosystemic-model/

Kapp, S. K. (2023). Profound concerns about “profound autism”: Dangers of severity scales and functioning labels for support needs. Education Sciences, 13(2), 106. https://www.mdpi.com/2227-7102/13/2/106

Stop ABA, Support Autistics. (2019). Rejecting Asperger’s and other functioning labels. https://stopabasupportautistics.home.blog/2019/09/15/rejecting-aspergers-and-other-functioning-labels/

Sinclair, J. (1993). Don’t mourn for us. Our Voice: The Autism Network International Newsletter, 1(3). https://www.autreat.com/dont_mourn.html

Wong, A. (2020). Disability visibility: First-person stories from the twenty-first century. Vintage.

Further Reading & Signposting

If you would like to explore more advocacy-led perspectives on functioning labels and Autistic experience, check out:

AUsome Training. Functioning labels.

Bristol Autism Support. Why functioning labels are damaging and irrelevant.

Johnson, C. (2017). A label on functionality labels. Just Keep Stimming.

Lincoln Student Life. (2022). Autism functioning labels.

NeuroClastic. Disorder, condition or disability: A look at the fables of autism labels.

Rose, K. (2017). Functioning labels: Why you shouldn’t be using them. The Autistic

Advocate.

Sinclair, J. (1993). Don’t mourn for us. Our Voice: The Autism Network International

Newsletter, 1(3).

Stimpunks Foundation. Functioning labels.

Functioning labels such as “high-functioning,” “low-functioning,” and terms like “profound autism” impose external judgments that often deny Autistic people access to support, undermine autonomy, and distort how our needs are understood. Autistic advocacy and research show these labels are harmful and inadequate, and that naming specific support needs is a more just and respectful way forward.

Visit Autistic Realms

During Autism Awareness and Acceptance Month, there is often a focus on learning about autism and being more inclusive of Autistic people. However, real support goes beyond awareness or acceptance alone. The words we use matter, and functioning labels can shape access to support, autonomy, and belonging in ways that directly affect Autistic people’s mental health and well-being. Functioning labels don’t describe us; they gatekeep access to support, autonomy, and opportunity. This blog, written for the NeuroHub Community Journal is an invitation to look more closely at those labels and to consider what it means to truly support Autistic people.

Functioning labels don’t describe us; they organise access to support, autonomy, and power. They are often used to justify the denial of support to those seen as “high functioning,” while restricting autonomy for those seen as “low functioning”. Functioning labels were never designed to support Autistic people, they were designed to make Autistic people legible to systems and have power over us.

If you are Autistic and have ever been described as “high-functioning” or heard someone you love described as having “Profound Autism”, you will know these words do not sit lightly. They shape how people see us, how much support we are offered, and what others believe we are capable of.

Functioning labels are not descriptive tools; they are used within systems of sorting people into categories. They reduce Autistic people to how closely we approximate neuronormativity, and in doing so, they shape who is believed, who is supported, and who is denied, who is heard and who is silenced. They are words that cause wounds.

They are used to justify withholding accommodations from those seen as “too able,” while simultaneously stripping autonomy from those seen as “too disabled.” They do not protect us; they position us and cause harm. There is no accurate version of a functioning label, only different ways of being misunderstood. Functioning labels are not only inaccurate, they are also harmful (Autistic Self Advocacy Network, 2021; Finn Gardiner, 2018).

Autistic Mental Health Conference

What Are Functioning Labels?

Functioning labels such as “high-functioning,” “low-functioning,” “mild,” “severe,” or describing Autistic people in terms of “levels,” are shorthand categories often imposed by those researching on us or writing about us. They classify Autistic people based on our perceived outward behaviour and how closely we align with normative expectations, rather than reflecting our lived experience or actual support needs.

As Gardiner (2018) explains, the same person may be labelled “high-functioning” or “low-functioning” depending entirely on what someone chooses to notice and the context in which they are. These labels do not describe who we are; they reflect what others value, expect, or find acceptable. Autistic advocacy-led spaces have long argued that functioning labels operate as compliance-based judgments, measuring how well an Autistic person performs according to neuronormative expectations rather than recognising our actual strengths and needs.

A False Binary With Harmful Consequences

Functioning labels create a false binary that Autistic people are forced to live inside, either being “not disabled enough” to deserve support or “too disabled” to be trusted with autonomy and our voices are silenced.

There is no safe side of that divide; these labels operate as gatekeeping mechanisms, determining who is granted support, whose needs are taken seriously, and whose autonomy is respected (Autistic Self Advocacy Network, 2021; Stop ABA, Support Autistics, 2019).

Many people labelled “high-functioning” are only seen that way because they may be masking, often at high cost to their mental health, identity, and long-term well-being. Their struggles are minimised, their needs dismissed, and support withheld because they appear to be coping. This might look like an Autistic professional who is praised for performing well at work, yet denied reasonable adjustments, expected to sustain that level of output without support, and eventually reaching burnout, often told they were “fine” until they are no longer able to keep going and then have to suffer the consequences.

At the same time, those labelled “low-functioning,” “severe,” or described as having “profound autism” often experience the opposite harm: their autonomy is reduced, their voices sidelined, and their capabilities may be underestimated. This might look like a non-speaking Autistic person whose understanding is not seen because they do not use spoken language; decisions can be made about their life without their input, despite their ability to potentially communicate in other ways when given the right support.

For people with profound and multiple learning disabilities and other medical or significant health care needs, the harm can be even more significant. Communication may be more subtle, embodied, and relational, expressed through movement, affect, or interaction, and easily overlooked when support is not attuned. Presuming competence, in this context, is not about expecting performance, but about recognising personhood and providing the support needed for that to be expressed, as I have recently described in my blog about Intensive Interaction.

Alvares et al. (2019) found that IQ tests are often used as the basis for “high-functioning” labels, and that these labels are poor predictors of how Autistic people often have to balance and juggle their fluctuating capacity and sensory needs through the day. Many Autistic people without intellectual disability still experience significant challenges in daily living, demonstrating that these labels are fundamentally unreliable and unhelpful.

Kapp (2023) further argues that severity scales and terms such as “profound autism” risk reinforcing these same problems. Non or minimally speaking Autistic people may communicate meaningfully when provided with appropriate support, yet are frequently underestimated or overlooked by standardised assessments. Standardised assessments often measure how well someone can perform under narrow conditions, not what they understand, experience, or are capable of in the right environment.

This is not just a problem of outdated language; it is structural. These labels shape how support, recognition, and rights are distributed. Dignity and autonomy are not achieved by lowering expectations or imposing unrealistic ones, but by deeply understanding each individual’s communication style, meeting their sensory needs, and building responsive, relational support with each person.

It is not labels but the presence or absence of understanding, support, and respect that determines whether autonomy is upheld or denied for Autistic people. Functioning labels not only misrepresent us, they actively shape what happens to us and harm us.

Beyond Fixed Categories: Why Autistic Lives Cannot Be Reduced to Labels

One of the deepest problems with functioning labels is that they treat being Autistic as a fixed, stable state, a set of traits that can be observed, measured, and ticked off.

Being Autistic is not a static way of being, it is dynamic, fluid and context-dependent. Our needs shift across environments, relationships, and our lifespan. Burnout, sensory overwhelm, other co-occurring physical and mental health needs and other life circumstances all shape how much support we need at any given moment. From a monotropic perspective, functioning labels flatten the depth of attention, energy, and experience into static categories that cannot reflect how we actually move through the world, how our attention flows, how it becomes overloaded, and how it is sustained or supported.

A History Of Autism

This fluidity is also shaped by intersectionality and race, gender, class, sexuality, communication style, and access to resources, all of which influence how Autistic people are perceived, supported, or dismissed. The same person may be read as “coping” in one context and “struggling” in another, not because they have changed, but because the environment, expectations, and biases around them have.

A label applied in childhood cannot predict a person’s needs later in life. Many people who were denied support because they appeared “high-functioning” later often reach burnout, and their mental health is affected. Others, labelled “low-functioning,” may develop new forms of communication, connection, and autonomy when given the right conditions and support and some people may need ongoing support for all aspects of daily living.

Terms such as “profound autism,” “high functioning,” or “levels of autism” do not resolve this problem. They maintain systems of categorisation and segregation that prioritise some needs over others, without addressing the structural changes required to support all Autistic people.

From Labels to Support

The goal is not to replace one label with another, but to move toward clarity, specificity, and respect. Access to support is not something that should be earned through appearing “disabled enough”; it is a human right.

As organisations such as Autistic Self Advocacy Network (2021) emphasise, the most meaningful alternative is to: Describe what someone actually needs. This might look like:

• “[Name] uses AAC to communicate and benefits from extra processing time”

• “[Name] needs support with executive function, transitions, and sensory regulation”

• “[Name] is Autistic and has a co-occurring intellectual disability”

This shift is about more than language; it is about how we understand Autistic people and competence itself. David Gray-Hammond’s and Tanya Adkin’s framing of neurodivergence competence (2023) invites us to move away from judging Autistic people by how closely we meet normative expectations, and toward recognising how competence emerges when the right supports, environments, and relationships are in place. What is often interpreted as inability or overwhelm is frequently a reflection of unmet needs, inaccessible environments, or misattuned expectations.

What we often call “ability” is not a fixed trait, it is something that emerges in context. From an ecosystemic perspective, as explored through my work with David Gray-Hammond in our NeuroHub Community, support does not sit within the individual alone, it exists across systems, in relationships, environments and structures. When these systems are responsive and attuned, Autistic people are better able to access, express, and sustain their strengths. When they are not, what is often labelled as a lack of ability or “challenging behaviour” is more accurately a lack of support.

Functioning labels fail, not just descriptively, but relationally, systemically and structurally. They locate difficulty and failure within the person, rather than within the interaction between the person and their environment, shaping not only how someone is understood, but how their autonomy and agency are recognised or denied.

When we begin instead with listening, with tuning in, building understanding, connection, and meaningful relationships, we create the conditions in which Autistic ways of being, monotropic attention, and different communication and sensory needs can be recognised and supported, rather than misunderstood or dismissed.

Within this, autonomy and agency are not abstract ideals; they are lived through everyday interactions. They are expressed through supported communication, through having choices respected, and through being included in decisions that affect our lives. Consent is part of this, not as a one-off act, but as an ongoing, relational process that requires time, trust, and appropriate support.

Instead of generalising through inaccurate labels, we need to name and respond to specific needs through adjustments, accommodations, and support that enable people to be understood, valued, and believed so everyone can truly thrive and live the life they deserve.

A Note to Our Community

During Autism Awareness and Acceptance Month, there is often a focus on understanding, inclusion, and celebrating Autistic people. But awareness and acceptance alone are not enough if the language and systems around us continue to cause harm. Supporting Autistic mental health and wellbeing requires more than recognition; it requires change.

Sustainable Advocacy Toolkit

Functioning labels shape how Autistic people are seen and treated. They can deny access to support, restrict autonomy, and contribute to mental ill health, exclusion, and misunderstanding. If we are serious about the wellbeing of Autistic people, we must be willing to question the frameworks that quietly sustain these harms.

Your worth, your capacity, and your future are not defined by how others categorise you. Your strengths and challenges are both real, and both deserve to be understood and supported.

Autistic people do not need pity. We need understanding, respect, and support that meets us where we are.

If you are a non-Autistic professional, parent/carer or ally supporting an Autistic person, thank you for reading this and being part of the community. The language we all choose, the assumptions we all take time to question, and the ways we all listen and respond with each other matter. Functioning labels don’t describe us; they organise access to support, autonomy, and power.

This piece connects with my wider work at Neurohub Community with David Gray-Hammond, including Re-Storying Autism, our 7-module video course and workbook that deepens this relational, neuro-affirming understanding of supporting Autistic people beyond labels.

Submit your article to the NeuroHub Community Journal by clicking here.

References

Adkin, T., & Gray-Hammond, D. (2023, April 11). Creating autistic suffering: Autistic safety and neurodivergence competency. Neurohub Community. https://neurohubcommunity.org/2023/04/11/creating-autistic-suffering-autistic-safety-and-neurodivergence-competency/

Alvares, G. A., Bebbington, K., Cleary, D., Evans, K., Glasson, E. J., Maybery, M. T., Pillar, S., Uljarević, M., Varcin, K., Wray, J., & Whitehouse, A. J. O. (2019). The misnomer of “high functioning autism”: Intelligence is an imprecise predictor of functional abilities at diagnosis. Autism, 24(1), 221–232. https://journals.sagepub.com/doi/10.1177/1362361319852831

Autistic Self Advocacy Network. (2021). Functioning labels harm autistic people. https://autisticadvocacy.org/2021/12/functioning-labels-harm-autistic-people/

Edgar, H. (2022). Autism is fluid. Autistic Realms. https://autisticrealms.com/autism-is-fluid/

Gardiner, F. (2018). The problems with functioning labels. Thinking Person’s Guide to Autism. https://thinkingautismguide.com/2018/03/finn-gardiner.html

Gray-Hammond, D. (2026, January 2). Understanding Autism: The Ecosystemic Model Of Distress. Neurohub Community. https://neurohubcommunity.org/2026/01/02/autism-ecosystemic-model/

Kapp, S. K. (2023). Profound concerns about “profound autism”: Dangers of severity scales and functioning labels for support needs. Education Sciences, 13(2), 106. https://www.mdpi.com/2227-7102/13/2/106

Stop ABA, Support Autistics. (2019). Rejecting Asperger’s and other functioning labels. https://stopabasupportautistics.home.blog/2019/09/15/rejecting-aspergers-and-other-functioning-labels/

Sinclair, J. (1993). Don’t mourn for us. Our Voice: The Autism Network International Newsletter, 1(3). https://www.autreat.com/dont_mourn.html

Wong, A. (2020). Disability visibility: First-person stories from the twenty-first century. Vintage.

Further Reading & Signposting

If you would like to explore more advocacy-led perspectives on functioning labels and Autistic experience, check out:

AUsome Training. Functioning labels.

Bristol Autism Support. Why functioning labels are damaging and irrelevant.

Johnson, C. (2017). A label on functionality labels. Just Keep Stimming.

Lincoln Student Life. (2022). Autism functioning labels.

NeuroClastic. Disorder, condition or disability: A look at the fables of autism labels.

Rose, K. (2017). Functioning labels: Why you shouldn’t be using them. The Autistic

Advocate.

Sinclair, J. (1993). Don’t mourn for us. Our Voice: The Autism Network International

Newsletter, 1(3).

Stimpunks Foundation. Functioning labels.

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