Doing Neuroqueerness. Reimagining Autism and Neurodivergence through Queer Theory

This research project deals with autism: it aims on the one hand to find possible ways out of stereotypical attributions about autistics and on the other to explore their possibilities of agency and autonomy. This agency and autonomy is theorised and negotiated through the concept of “neuroqueerness.”

Neuroqueerness is a neologism which has recently gained prominence among communities of people living with autism. It is constituted by the adjective “neurological”, since autism is a neurological difference, and the verb “to queer”, which is borrowed from feminist theory to refer to the questioning of supposed social and cultural certainties regarding this condition.

This thesis argues that the neurological difference of neurodivergent people – in this case people with autism – is not completely different, extra-discursive or incomprehensible, as it is often presented in research literature or public perception. Rather, this difference is entangled with the allistic world (the world of people without autism) and can touch and enrich it with new impulses and thus potentially break open and expand rigid ways of doing things. This could lead to a less dominating and exclusive culture and to more inclusion, equality and innovation.

However, for a more productive reception of neurological diversity and agency to become possible, education about autism and neuroqueerness is needed for allistic people, and a conscious approach to “one’s own way of doing things”, for autistic people. I would like to call this a conscious and autonomous approach, that any neurotype can make use of; Doing Neuroqueerness.

If we are to better understand autistic individuals in a movement toward greater inclusion, we must, paradoxically, acknowledge the fluidity and complexity of their subjectivity, according to the thesis of the Doing Neuroqueerness project. The discourse on autism is currently dominated by the biomedical and psychiatric model, which seeks to essentialise and pin autism to a few stereotyped, pathologized, and immobile traits. 

However, there is probably not one universal autistic phenomenology or neurological autistic essence that applies to all autistic people. Two autistic people can be more different than one autistic person and one allistic person. Autism is a very large spectrum. However, it is important to be interested in the autistic perspective on the world so autistic individuals are no longer marginalised and underestimated.

Yet this does not necessarily require the elaboration of an autistic essence as a nailing down and strict categorization of people based on their neurology. A strategy can also be rolled up from the other side: That which is widely understood, still prejudiced, as "divergent" from the norm can be read as a symptom of a culture that needs the "(neuro-)divergent" to consolidate its status and identity.

What is at stake here is a constructed image of the "right" way of being human, which claims universal validity. The reflections within the project Doing Neuroqueerness are informed by this constructed but persistent outside perspective, but do not follow it. They rather seek to criticise and queer it. Queering something does not mean that tangible and concrete new knowledge cannot be elaborated, this knowledge merely remains unfinished and open to revision. Knowledge is understood in this project as an ongoing process instead of a fixed object. 

Observable autistic behaviour, from the outside, is still largely misunderstood and interpreted as disturbing, pitiful, deficient, and antisocial. The aim of this project is to develop a style of interaction that allows autistic people to be recognized as epistemically significant and equal. This new style of interaction should also make the conditions of the specifically occurring interaction accessible to both interaction partners. In my project Doing Neuroqueerness I try to think about the internal and the external of autism in a way that it could be mobilised for a new kind of encounter. The basis of this attempt is to understand autistic thinking, acting, and feeling as unrestrictedly intentional, conscious and meaningful.

The Social Construction of Autism as Non-Human

The main problem regarding the social inequality of autistic people is that autistic people are not recognised according to the constructed image of what is considered a human being. As such, they are denied all the characteristics that are generally attributed to human beings. This includes ideas about autistic people having no intentionality, no willpower, not being goal-directed, having a compulsion to be self-oriented rather than other-directed, having no feelings, no sexuality, an inability to relate to others or to learn, and, strangely, not even being alive. Even Slavoj Žižek has described autistics as subjects at its zero-level, like an empty house where #nobody is home". (2)

Kristina Lekić Barunčić describes this problem very aptly in her doctoral thesis entitled "Philosophical Perspectives on Autism: Epistemic, Moral and Political":

The exclusion of autistic persons from the public conversation about autism is a consequence of prejudice and stereotype about autism as a disorder that prevents a person from understanding their (autistic) experiences and the world around them. (3)

Autistic people are considered so other-than-human that their statements cannot be trusted, even if they refer to themselves. Lekić Barunčić refers to the theory of epistemic injustice according to Miranda Fricker. This epistemic injustice is also very clear in the following quote from the autistic author M. Remi Yergeau: “Autistics don’t tell us what we want to hear, nor do they tell it to us in the manner in which we wish to hear it.” (4) In order to fight for the social inclusion of autistic people, we depend on autistic people's knowledge about autism. (5) But not only that: epistemic injustice also prevents the contribution that autistic people more generally could improve society in all domains if they were considered to be equal and included. (6)

In the wake of the neurodiversity paradigm, some attempts have already been made to broaden societal epistemological horizons and create societal hermeneutic resources to conceptualise autism more accurately and less limitedly. (7) This also helps show that what we understand by being human is constructed and in need of revision when the dominant construct does not want to recognise minorities, or those outside “the norm”, like autistic people as human beings. Many autistic authors have described autism as an internal experience. Reading these autobiographical narratives is incredibly important, because they give people a chance to understand that being autistic is anything but inhuman, empty, or dead and that autistic people perceive and think very consciously with the strong ability to understand, interpret, and meaningfully weave experiences into a narrative.

(1) Cf. Yergeau, M. Remi, 2018, p. 10.

(2) Žižek, Slavoj, 2014, p. 165. 2

(4) Lekić Barunčić, Kristina, 2020, p. 2. 3

(5) Cf. Fricker, Miranda, 2007, p. 1. 4

(6) Yergeau, M. Remi, 2018, p. 22. 5

(7) The neurodiversity paradigm is the opposite of the pathology paradigm, when it comes to neurodivergence. Cf. Walker, Nick: Throw away the master’s tools: Liberating ourselves from the pathology paradigm (Accessed 13th of May 2023). Cf. Fricker, Miranda, 2007, p. 1. 7

Nevertheless, attention must be paid not only to what is internal to autism, but also to what is very concrete, visible, and external for this is the realm of the production of reality, through action and perception. Furthermore, this is the place where we can imagine new ways of dealing with otherness that leads to more inclusion and justice and less dominance and stigmatisation.

My thoughts on the topic start from my existence and experience as an autistic person. This said, I am concerned with neurodivergence in general. In this sense, the Doing Neuroqueerness project aims to educate about autism, among other things, but, above all, to imagine practices that put divergent people on an equal footing in wider society. Because doing things differently from what we are used to does not mean that it is wrong. Even if we do not understand this difference from the beginning it is worthwhile to deal with what we do not yet understand, because another interpretation of reality could reveal itself here, which opens advantages for all. 

With a more open engagement with autistic cognitions, emotions, and behaviours, we are also more likely to recognise that this way of being has inherent value and validity as a genuine and valuable form of knowing. By understanding divergent behaviour as meaningful strategies, we can overcome the notion of autism as an incomprehensible and sense-deprived deviation or limitation and access originality, innovation, and a more enlightened form of connectedness. Thus, in what follows, I will argue for the concept of neuroqueerness in the topic of autism and explain how the ethnomethodological perspective of “doing" as an ongoing process of becoming can be made productive for autism and neuroqueerness. In a neuroqueer perspective, embracing and valuing autistic doing challenges the hierarchy of knowledge systems that prioritise neurotypical ways of thinking and encourages the coexistence and validation of diverse cognitive processes.

What Autism Has to Do with Queer Theory - Between Agency and Neuronormativity

The minute you say ‘queer’ … you are necessarily calling into question exactly what you mean when you say it … Queer includes within it a necessarily expansive impulse that allows us to think about potential differences within that rubric.⁰

Queer theory does not provide a positivity, rather it is a way of producing reflection, a way of taking a stand vis à vis the authoritative standard.⁰

If we recognise autism as a very broad spectrum, some commonalities can be found between the autism spectrum and queerness in queer theory. Both queer theory and the autism spectrum challenge normative understandings of identity, social norms, and the constructedness of categories such as gender or neurotypicality and even personhood.

Autism challenges neuronormativity, which is one of the greatest forms of normalised violence and remains invisible unless we address it. Neuronormativity encompasses the notion, or rather the compulsion, that all people must function the same in terms of their sensory, cognitive, social, and communicative characteristics. An empowered and proud approach to autism highlights the need to recognise neurodiversity within the human population. Similarly, queer theory challenges binary and heteronormative understandings of gender and sexuality and acknowledges the spectrum of identities and experiences. Queer theory (and Gender Studies) have also made heteronormativity visible and negotiable, whereas it was once an unquestioned and automatic given.

Queer theory critiques the notion of a fixed and essential identity and emphasises the fluidity and socially constructed nature of identity categories. Similarly, the autism spectrum challenges the idea of a fixed and essential understanding of a person's neurology, highlighting the diversity of autistic experiences and the ways in which social expectations and norms shape our understanding of autism.

In addition, both autism and queer theory challenge societal expectations and norms regarding social interaction and communication. Autistic people often struggle in social interactions due to differences in communication and information and sensory processing, which can be compared to the way queer people navigate and negotiate social spaces that do not correspond to or even threaten their identity.

Queerness is thus not simply a fixed identity, but perhaps even more a method of questioning and de-identifying, a constant shifting of meaning, and thus a fluid concept. It is a moving space of thought that makes more possible than previous conventions allow. Yet queerness always defines itself in relation to the "normal," status quo, heteronormativity, etc. We are constantly moving in the traces of a different invention of reality.⁰

With my project I make a queer and deconstructive move that deviates from the prevailing invention of reality and humanness. I understand autism (and also other neurodivergences) differently than the biomedical model. I understand them as queer acts which have their most obvious meaning in their differentiation from a neuronormative and dominating standard. Collective meaning, then, can only ever be shifted in relation to the status quo. In this sense, among others, my project moves in the discourse of not just Queer Theory, but also Cultural Disability Studies and Critical Autism Studies. These, too, do not only investigate disability or autism, but at the same time also distinguish themselves from it and define it as inferior. What we currently understand by "normal," the normative, and in a sense culture more generally are de-centered and can be better and differently understood from this new perspective. Understanding disability, or more specifically, autism, as a category of analysis allows us to notice and discuss aspects of the status quo of our culture that would otherwise remain hidden.⁰ For example, what we mean by being human and whether this construction of being human is meaningful or not and whether it is not time to shift one meaning or another. 

It is important to recognise that the characteristics of autistic people can vary widely and do not fit into a binary categorization. Therefore, it would be too short-sighted to conceive of autistics as merely a neurological category of people. Moreover, they do not exist in isolation from various influences, such as neurological predisposition, physical condition, individual experience, intersectional identity, personality, family and educational conditioning. When we are aware of this, we can approach more interesting questions than creating an essentialist profile of autistic people. For then we can also read autistic traits, for example, as the result of individual experience rather than as the mere effect of a "defective" neurology.

Are autistic people, for example, often very logical in social interactions because their neurological disposition does not allow it otherwise? Or is this tendency towards logic perhaps a coping mechanism to be able to make oneself understood socially when one has had the confusing experience all of one's life of being rejected for one's own emotional, intuitive and relaxed self, without justification? To be allowed to think such thoughts is important. Being able to rethink autism over and over again is important. Using Queer Theory and fluidity thinking, it offers a path away from essentializations that is worth exploring. A certain unknowability of the exact being of autistic people will always remain, but in this unknowability regarding a way of existence there is also a lot of freedom and epistemological potential.

This paves the way for a difficult balancing act: On the one hand, autistic people need more substantial knowledge about autism in order to understand themselves better and not to accept a neuronormative perspective as deficient and inhuman. On the other hand, it is important not to insist on an autistic essence or categorisation, because this would again identify some autistic people, whilst others would not be recognised as autistic at all, so that both groups are deprived of the possibility to be self-determined, to be themselves and to be able to know themselves neutrally. It is a matter of being allowed to retain authority over the narrative.

In this sense, critiquing essentialism should not mean that not anything can be known. It simply means that meaning always remains negotiable, and that autistic individuals must be believed when they set ideas because that is precisely the negotiation of meaning and the queering of knowledge.⁰

Doing Neuroqueerness - A Balance between (Unfinished and Ethical) Knowledge and Freedom

Interesting research is research conducted under conditions that make beings interesting. —Vinciane Despret

What we have found so far is that the freedom of queerness is productive and can lead to new knowledge, if knowledge is not essentialised as in the biomedical model, but always remains negotiable. One of the biggest problems about the exclusion of autistic people from society is that autism is an epistemology that is not even recognised as such. Thus, we need to queer not only ideas about what it means to be recognized as a “full” human being, but also ideas about the proper functioning of the brain and ideas about knowledge and epistemological hierarchies. For this, the term neuroqueering provides a suitable framework.

Neuroqueer is a relatively new term and one that emerged on the web, elaborated in the context of autism by several people: M. Remi Yergeau, Ibby Grace, Athena Lynn Michaels-Dillon, and Nick Walker. The latter describes the term as not definable, but only ever tangible in approximation.⁰

Among other things, Walker describes neuroqueering as a verb as follows:

Engaging in practices intended to undo and subvert one’s own cultural conditioning and one’s ingrained habits of neuronormative and heteronormative performance, with the aim of reclaiming one’s capacity to give more full expression to one’s uniquely weird potentials and inclinations.⁰

Following this quote, I also understand neuroqueering as a critical stance and as a way of being and acting that opposes neuronormativity and heteronormativity, and pursues the goal that neurodivergent people can express themselves in a self-determined way and do not have to mask their autistic being in order to be allowed to have a say. Furthermore, I understand neuroqueering as an emancipatory and ethical act of subverting neuronormativity and creating social, as well as cultural environments that are more inclusive, interesting and just, in an effort that these practices are gradually cultivated on a societal level as well. I understand neuroqueering as an action rather than an identity, because I believe that all neurotypes, genders and kinds of sexually oriented people can appropriate neuroqueering as long as it is about invalidating neuronormativity and supporting idiosyncratic forms of expression and communication of people.⁰

Neuroqueerness also allows, promotes and performs the recognition of neurodiversity as a fact to be respected and valued, but also, for example, diversity within autism. Neuroqueerness can hold the complexity of diversity, even within an identity, like autism.

What the concept of neuroqueerness further offers is that, like queerness, it always leaves open freedom in desire: “It is here between desire and discourse that queer theory is situated, not to reveal desire so much as to revel in its extra-discursive leakages."⁰ I think desire is a very important concept within queer theory and also within neuroqueering. Neuroqueer desire is perhaps different from genderqueer desire, but I think they overlap on this very point, that its emphasis is not in a precise identification of desire, but about the (epistemological) potential that lies in the extra-discursive leakages. The autistic blogger Laurie Green who deals with the concept of neuroqueering has written a wonderful essay on autistic and trans desire, in which they state:

Desire fills the gap between present reality and an imagined idealised future. […] If we need our desires to be fulfilled to feel whole, then we become attached and dogmatic. Many would preach that letting go of desire is a spiritual good.

But, desire can also be a liberatory force. Desire can become drive, creating action out of imagination. In this way, desire is a magical force of change and transition. Without desire, there is catatonia and inaction, a passive acceptance of submission and oppression.⁰

From this it can be theorised that neuroqueering is a desire. It is a force that strives to be recognised and used.

I use the term “desire” in the poststructuralist psychoanalytical sense according to Jacques Lacan. In Sigmund Freud there is a similar concept, namely the life instinct, which can be theorised as a force within human body minds, that keeps human beings alive and healthy physically and mentally. It is a fundamental part of being human, being alive and realising the self. 

To return to autism specifically: If autism is a neurological predisposition, then it is the underlying grammar that influences every thought, action, and feeling of autistic people. It is not simply a trait that can be trained away, as many therapeutic offerings unethically would have you believe. It is a way of existence and of drive in itself. Not something defective that can be cut out so that only the "useful", "acceptable" or "normal" remains in the person. It is the life force of autistic people (life force is another term for “desire" in psychoanalysis ) and it is an intrinsically coherent and exceedingly reflective and meaningful kind of subjectivity. 

All to say that autistic people are not so very differently wired from all other people that it is an insurmountable hurdle, but rather that autistic people are extremely human, and they no longer need to be conceived of as puzzling if we find new ways to meet each other by celebrating our mutual differences. And those new ways are conceivable through Doing Neuroqueerness.

With the project Doing Neuroqueerness, I keep showing new ways of understanding autism without claiming to ever find the final truth. It is about moving away from deficit-oriented or fixed ideas about autism by continually rethinking autism and placing it in different contexts. Moreover, I keep the meaning of what is understood by autism in flux with emancipatory intent.

Part of my project is the series “Neuroqueer Doings”: exercises for how autistic behaviour that is thought of as deficient can be understood in a new way and valued as anything but deficient. These exercises also keep the subject of autism open-ended, while showcasing informative knowledge value: They address and reverse preconceptions about autistic people. For example, according to M. Remi Yergeau, one of the biggest prejudices against autistic people is that they are unintentional in acting, thinking and feeling: With the Neuroqueer Doings I take up exactly such prejudices, which convey this unintentionality, involuntariness or even unreflectiveness, and show that these characteristics – ’ll leave it for now whether these characteristics really have to do with autism at all – have a great deal of inherent intentionality, volition and consciousness. One example is overexplaining: the deficit-oriented perspective sees it as something dysfunctional and self esteem-less, but in a neuroqueer perspective, I understand overexplaining as creating an even playing field for synthesising thoughts to conclusions instead of just offering conclusions. It is an invitation to think together. Overexplaining in this sense might even be understood as an ethical and respectful act towards the other person. So, in a sense, I resolve oppositions without diluting or dissolving meaning. In this queering of prejudices about autism and of neuronormative expectations, I am precisely making meaning that could possibly serve as knowledge about autism and be thought about further.

In the sense of such an interactionist focus, the aspect of doing in the title of my project refers to the ethnomethodological concept of "doing x". Ethnomethodology challenges the notion that social order is pre existing and objective. Instead, it highlights how individuals actively construct and maintain social meanings through their actions and interactions. Applying this concept to autism, we can begin to appreciate the agency and competence of autistic individuals in shaping their own experiences and the world around them. The concept of doing echoes my reflections above that personhood is intrinsically constructed and that we can always perform and reiterate, or change, personhood through actions and interactions. If personhood is constructed, then we can also extend that construction using neuroqueering, so that autistic people can also be recognized as people without having to perform everyone else's way of being human in the form of mimicry, thus abandoning themselves and burning themselves out in the process.

Within the ethnomethodological concept of doing, Doing Neuroqueerness could be conceived as an improvised performance of social meaning and subjectivity, rather than a ritualised performance of social meaning.⁰ In ethnomethodology, ritualised performances are, to a certain extent, representations and self-presentations that are supposed to direct social relations and make the conditions of an interaction accessible without words.⁰ In the context of my project, however, I think that we should never automatically access these conditions based on ambiguous signals, but rather develop a style of interaction that allows the conditions of an interaction to be opened up again and again in new ways, always specifically tailored to each situation.

I don't know yet what the concrete and correct parameters of this interaction style are, whether it is consent, care, or something else entirely. But I try to search for answers to this question with the Neuroqueer Doings, which I incorporate into my everyday life myself, in an exemplary way. As such, this is my research method. It is about permeable and negotiable encounters. Doing in Doing Neuroqueerness makes distance against the thinking in identities and fixations and provides a closeness to a practice of becoming and not knowing and always redefining togetherness. ⁰ 

I would like to compare this kind of exploratory togetherness in Doing Neuroqueerness with Donna Haraway's words about Vinciance Despret's research. Haraway describes Despret’s research as "polite inquiry", which fits extremely well with my idea of an interaction style based on Doing Neuroqueerness:

The first and most important thing at risk in Despret’s practice is an approach that assumes that beings have pre established natures and abilities that are simply put into play in an encounter. Rather, Despret’s sort of politeness does the energetic work of holding open the possibility that surprises are in store, that something interesting is about to happen, but only if one cultivates the virtue of letting those one visits intra-actively shape what occurs. They are not who/what we expected to visit, and we are not who/what were anticipated either. Visiting is a subject- and object making dance, and the choreographer is a trickster. Asking questions comes to mean both asking what another finds intriguing and also how learning to engage that changes everybody in unforeseeable ways. Good questions come only to a polite inquirer, especially a polite inquirer provoked by a singing blackbird. With good questions, even or especially mistakes and misunderstandings can become interesting. This is not so much a question of manners, but of epistemology and ontology, and of method alert to off-the-beaten-path practices.⁰

Finding such a new style of interaction would not simply be goodwill towards minorities, such as autistic people, but it would be beneficial to all, because all know the feeling of not being understood or pinned down to an identity or trait. Learning to cultivate such a style of interaction would be part of the desire described earlier, which must believe an idealised future is possible. 

In summary, Doing Neuroqueerness means a different way of thinking, acting and feeling, which does not have to be directly transferred back into a known logic or ritualised interpretation, but may first be lived out with curiosity and appreciation. Neuroqueer is in this sense a vehicle that transfers the supposedly extra-discursive in which autism is readily located, into the sphere of the meaningful.

Doing Neuroqueerness achieves this by understanding neuroqueering as interaction in the broadest sense and by not rashly projecting one's own ideas onto autistic behaviour, but by giving autistic behaviour a raison d'être that only enables a better understanding of the differences to be found. Interactions with divergent people are not a dead end, but, on the contrary, an opportunity. A new and unfamiliar path must be taken if we are to allow ourselves the possibility of arriving at a more ethical response than the ones previously established.

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