“Te Kore and the Artiste within: De-Tyrannizing Autistic Viewpoints in Life,Self,and Identity through Creative Methodologies”

Abstract

The voices of the autistic community have been systematically forfeited in research and practice, both as a consequence of the double empathy problem and, as a direct result of albeist methodic approaches to researching and representing autism (Milton, 2012., Goodley, 2016, 2018., Heilker & Yergeau, 2011., Hobson et al, 2022., Ridout, 2017). Methodologically speaking, autism creates challenges for allistic researchers, particularly as there is an associated “exaggerated risk” of researching autistic people and as researchers frequently study and thus experience autism, from etic perspectives (Van De Hoonard, 2016, p. 585). This paper contends that these challenges have resulted in a lack of flexibility in methodologies designed to protect those at risk of harm, creating disproportionate fear and an over-surveillance of autistic research participants, despite their potential. Inertia is a direct consequence of this, which manifests itself twofold. Firstly, as the struggle researchers have in capturing meaningful and authentic autistic representation and secondly, of the methodic implications autistic inertia presents. What is suggested, therefore, is a subversion of homogeneous ways of knowing from the production of quasi-aesthetic representations of autistic voice, favoring those creative methodologies which appreciate that autism is not experienced diachronically. As to capture the realities of contemporary autistic life, dividing practices of ableism must be challenged (Goodley, 2018). Therefore, by centralizing autistic research participants as “insiders” to autistic worlds, researchers will have to lay aside academic habits and rethink, heuristically, how to privilege unobscured autistic voices through transabelism (Garland-Thompson, 2005). For in order to carve out hybrid dilatory spaces from which autistic people can develop their narrative capital, a transableist agenda must be pushed. What will ensue are creative and flexible methodologies that align with social justice beliefs and resist methodic stasis and inertia; as decisions to explore the lifeworlds we experience, as autists, comes with no modus operandi.

Introduction

Disclosures and acknowledgments in research papers are frequently considered personal to the author(s) and to those to whom the acknowledgment is directed. In this instance, and in the interests of explaining the use of first person singular and plural pronouns throughout this paper, acknowledgment and epistemological position must be declared; particularly as when you are given no keys, you have no clues to understand the author’s process (King, 2012). Therefore, and in the interests of transparency, I withhold nothing; as nothing can be learned if the author of that knowledge and experience refuses to create the conditions that will apprentice others into the new body of knowledge (Freire, 1970). Furthermore, as narrative identities “are us”, there is an attempt to align this paper with the seminal works of Freire whose notion of preparing the oppressed to re-signify themselves as authentic beings are important here; as there is no community more capable of contradicting paradigms of their oppression, than the oppressed (Sachs, 2006, p. 110; Freire, 1970, p. 48). Therefore, there is specific intent to attest the “very definite ways” in which research works “through and against preferred and othered” in favor of those methods which locate power within them to acknowledge autistic individuals as the expert “insiders” (Goodley, 2018, p. 8, Ridout, 2017). For too often, particular views about autism are situated from positions of allistic privilege (Goodley, 2014; 2021).

Checking Oneself in the Discourse

I am autistic. Though for one moment, I ask you to put my autistic identity to one side; instead viewing this disclosure as one scholar interested in authentic, flexible methodologies designed with thought and care; situated in the interests and rights of the people “I see” and who see me. This declaration is important, as this paper from the outset seeks to confront the reality of being “othered” in academia, its potential impact on data, and upon research praxis (Goodley, 2021). And whilst myself and the community are conscious and well aware of ableist language and behaviors which marginalize us in research studies more generally, there is a deeper and specific issue to confront with our allistic or neuro-typical peers. That situated within the often-perceived boundaries of procedural ethics tyranny remain; as prominence is given to the principle of no maleficence over meaningful participation of the oppressed communities they were designed to support (Ne’eman, 2010). Furthermore, the agenda on autism continues to be steered toward the understanding of autism as a homogenous state rather than a complex part of human identity that perpetuates oppression (Cage et al., 2019; Goodley, 2021). As Goodley (2020) questions, this may be the consequence of the systematic dehumanization of the disabled whose narratives are notably backgrounded, whilst ableist retellings take centerstage (p. 7). This lack of engagement strips away any “supernatural” or physical variation of the autist; instead favoring those descriptions of autism from ableist perspectives who have no lived experience of autistic identity (Couser, 2009, p. 23). This is not to say there can be no insight from allistic researchers, but without authentic representation from improved participatory and inclusive approaches, there will only ever be third-hand representation, resulting in oversimplified, overly scientific, and generalized understandings of autism that do nothing to advance what “being autistic” looks like, from individual perspectives (Ridout, 2017).

Part of the issue is therefore, one of perceived capability and how un-humanlike, autists are considered to be (Cage et al., 2018; Goodley, 2021; Ne’eman, 2010). Furthermore, there is a veil of concealment under the guise of ethical concern which is driven by a set of priorities different from disabled communities. This creates a sense of the “lack of generosity” from the allistic society which (Goodley & Runswick-Cole, 2016) discuss as being reticent of dominant ableist viewpoints and neurotypical privilege. As their attention is frequently directed towards the priorities of non-autistic individuals whose interest is more akin to that of a subject-object dichotomy, than genuine outsider-curious position (p. 770). This is despite the notion of ethics as contextually understood and a discipline from which researcher limits, boundaries, and methodological comfort are significantly influenced. Therefore, there is an impetus in this paper to resolve this issue by asking productive questions of researchers and inviting an adoption of a “more anthropological strangeness gaze” to methodologies that seek to unfold autistic narratives (Tolich, 2016, p. 594). This will undoubtedly create a dilemma as researchers gain ethical permission for their studies on the premise of ethical formulae which is frequently considered inflexible. However, as Tolich (2016) argues, this is often premature, as in its “embryonic stage” the need for full disclosure of methods is frequently misaligned with meaningful participation (p. 597). This renders the autistic as “human but not quite”; for not affording participatory rights to the majority of a community is both misguided and tyrannical, leaving the autistic “unaccounted for” (Taylor, 2013).

The de-tyranny of autistic viewpoints is thus, a matter of social justice and in highlighting these interethic frictions there is hope that “ethical wisdom” can grow and an emergent discipline flourish that honors the hybrid field and allows for autistic narratives to be cherished, in whatever forms they take (Ridout, 2017). After all, just as writing is an ethical activity, so is the exercise of harvesting meaningful narrative participation (Richardson, 2016). I argue though, that what needs to change is attitude and a wider understanding of narrative expression. For any inclusive methodology should acknowledge the priorities of the expert insider voice, “facilitate an exploration of their priorities” and advance knowledge about social and psychological worlds which must include the practice of rejecting unjustified exclusionary research practices (Ridout, 2017, p. 53; Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council, 2018). What I am suggesting here is a capability approach that looks to transabelism as a guiding principle; as there is too much autism research where participants have been inappropriately excluded by virtue of their autistic identity, which is neither in keeping with ethical practice nor, notions of appropriate inclusion (Nussbaum, 2009; Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council, 2018).

My purpose is therefore in the interests of solidarity with the oppressed; neither in the guise of shallow imitation nor as the knower of all things. Moreover, as an autistic person, I “know things” that I have learnt in relation to the world and with others who are “like” me (Freire, 1970, p. 63). Furthermore, when a researcher’s epistemological position reflects neurodivergence they become the” insider-curious outsider” and as Ridout (2017) points out, diversity might emerge in the narratives (p. 53). Though on this point, I should respond and make clear that my autism diagnosis was (unremarkably) late and for which Freire might consider me, a “host” of latent oppression and not, born to it. However, and from my perspective, the diagnosis of autism was more an actualization of identity; an identity I believe I have always possessed. After all, my understanding of feeling and thinking differently was distinct, but in the absence of a formal diagnosis, I was considered allistic. However, I am not a convert in Freire’s sense of the world, who “remains nostalgic towards his origins” as I do not see or recall myself in any other form other than the one, I am consciously aware of (Freire, 1970, p. 61). Furthermore, and post-diagnosis, I believe I have some sort of authoritative and simultaneously limited “truth” about autistic people which enables me to see the artiste within; to see in effect, past the tyranny of the narrative (Baldwin, 2017; Freire, 1970, p. 61). These truths are thus conceptualized by me as “autistic lessons for the allistic" and loosely aligned with Freire’s second stage of developing a pedagogy of the oppressed; that a formation of a pedagogy of autistic practice(s) shaped and developed in the new order, will liberate and thus, de tyrannize autistic viewpoints from the shackles of old order thinking (Freire, 1970, p. 28).

These lessons begin with context and acknowledgment of power and as the expert insider, it is important to reiterate that to facilitate change, those who lack power (the autistic) must re-position themselves away from objects of research and become the dialogists for their people. We can say with some certainty that this presents itself as a search for ‘epistemic injustice’ which is important; as to dispel the myths that exist about autistic people which persist in research of this kind there must be a reckoning; as there are those who believe in the myths of ignorance and there are those who cannot recognize them (Hobson et al., 2022, p. 1012). But by virtue of the adoption of closed research methods in eliciting autistic voices, they all are slaves to those myths (Ridout, 2017). This suggests a particular problem that will need to be resolved in the first instance. That without commitment to unlearning what is learned about autistic people and without sincerity and genuine endeavor to discover “us” through the use of more open research methods, autistic research will not advance. As such here must be a priority to see our autistic “possabilities” and on this point, I will begin this act of persuasion with the words of autistic author and poet, David Miedzianik (Goodley & Runswick-Cole, 2016, p. 1).

Extracts from Tom’s Temper

Tom had a temper when he was a kid

His temper affected everything he did.

He never could keep his anger hid.

His temper never left him no matter what he did.

Tom’s Temper isn’t easing and he’s not pleasing

And he isn’t a pleasure to know. But as he grows older

His anger doesn’t grown colder and why he can’t

Think more calmly he hasn’t got a clue.

Tom took tablets and he wore rabbit’s feet

This didn’t take the heat our out of his mind.

Tom didn’t know what it was like to be kind.

To other’s emotions, he was blind.

Tom would fall out with people in shops.

He would fall out with cripples that hop.

He could never see anyone’s point of view.

He had his own problems on which to chew.

Te Kore and the Temper of Tom

In “Tom’s Temper” author and poet, David Miedzianik makes visible the loneliness and frustrations that autistic people experience as part of their life course. Fear is a concurrent theme in many of his works, but most significantly, his feelings of autistic inertia are manifest, which is important to this paper for a number of reasons. In Miedzianik, and other autistic representations of aesthetic works (Dougherty, 2019), we see great capacities for creativity; capacities from which autistic life stories can be more closely understood. And as such, we would not expect to see inertia as an opportunity to advance narrative constructions through innovative and flexible methodologies emerging all of the time in the hybrid field (Przybylski, 2021). However, autism research remains largely the territory of the quantitative which may well be exacerbated by the fact that many important forms of data for autism research, such as the use of video footage, are considered unethical. Furthermore, the double empathy problem means there is a need to be “nimble” in this field, which is challenging when the manifestations of autism present themselves as unfamiliar and disassociated from the comforting rhetorical structures present in allistic people (Przybylski, 2021; p. 169; Heilker & Yergeau, 2011). Nussbaum (2009) has argued for a slightly different approach here, defending from a framework of justice, the conditions under which individuals can exercise capabilities that enable human flourishing. Placing special emphasis on practical reason and affiliation, she makes explicit that at the core of human functioning is a person who constructs their way of life in reciprocity with others, a construction though, that does not imply merely following with no volition. On this point, scholars would likely argue that whilst reciprocity is sometimes considered out of the realm of profound autism, autistic people are tired of the “cure agenda” as the dominant ableist guiding philosophy (Ne’eman, 2010). And as Barnbaum (2009) argues, whilst the autistic are frequently described as “mental solipsists”, we arrive at morality via logical systems rather than allistic visceral empathetic routes. This does not mean we have no sense of morality. Moreover, it is autistically defined.

Nussbaum (2009) has argued that her view of human flourishing is simultaneously both robust and vague and as such, few do not meet the parameters of her views of a moral community and its constituents. Furthermore, she does believe in a capabilities approach and, remembering that Nussbaum is less concerned with why people perform certain actions, providing the proper space that allows an individual to use their powers to fulfill a capability, is more than how that capability manifests itself (2009). Therefore, the autistic are not without morality; just that their moral community thinks and interacts differently from the allistic. This demonstrates that the issue still lies in tyranny and within oppression; as autistic perceived capabilities such as lack of empathy or preference for I-it relations are left wanting when compared to ableist perspectives. Kant (2012) would argue here that personal morality and feelings of empathy are not mutually exclusive, as, for Kant, all that is needed is a sense of duty, expressed as imperatives or advocation to satisfy membership to a moral community. So, Kant would have likely argued that if a person can understand rules, that is sufficient for them to be moral and thus, capable in Nussbaums’ sense of the word (2009).

Ne’eman’s work here is also useful as they remind us that advocacy can only be achieved when ableist views of autism are laid aside, instead making way for a new kind of autism research paradigm which includes autistic people as full partners in the creation and implementation of studies relating to their quality of life (2010). However, despite these affirming views, the autism research agenda is still adverse to change and slow to push back on the disqualification of autistic participants; over cautious perhaps or academically habitual, but either way there is no doubt the field of autism research is struggling to broaden its scope to develop methodologies which represent more ethical and inclusive solutions to capturing autistic narratives.

Corder (1984) views this struggle as representing a distortion of world views as within our rhetorical universe lies the dominant non-autistic autism discourse which mythicize autistic narratives as “so secret and so truly original” they only give rise only to private forms of structure and style, which will not sustain communication with others” (p. 142). Corder maintains that this position creates a stalling or a returning to form, as the allistic community (In Freire’s eyes the oppressors) are “unable to move backward to explore or to use an inventive world and also unable to move forward and realize [ourselves] through a unique style” (p. 142). This also connects to the aforementioned “I-It” relationships as there is still the dominant view that capability and competence refer only to the ability to relate to people as well as things. And those relations are considered un-human if they do not align with ableist viewpoints of normalcy.

Think Again

I would assert this attitude has resulted in an over-surveillance of autistic people as producers of narratives and a position that creates inertia and renders the community “unaccounted for” and subsequently de-humanized (Goodley, 2021; Taylor, 2013). Corder’s response to this is to advocate for autism to be understood as rhetoric and this seems significant, particularly in relation to the “possability” approach, rather than from the privileged ableist perspective (Goodley & Runswick-Cole, 2016, p. 1). If autism can be considered a profoundly rhetorical phenomenon, there can be a demand of sorts that researchers be beholden to respond to it; and this is not based on the premise that the rhetoric is of one particular kind (Heilker & Yergeau, 2011). Moreover, by definition, the fundamental ways that autism presents itself in the world and through rhetorical means are associated with communication(s) in the social realm. Therefore, it is simple to assert that whilst understanding autism and its rhetorical perspectives may present as “interruptions, illogicality, and strangeness” to allistic ways of thinking, they are nonetheless deserving of complex pedagogical and methodological thinking (Heilker & Yergeau, 2011, p. 489). This will require a “think again-ness’ to what makes a human, human Goodley, 2014, p. 116). As the key to understanding what is different is to understand what is not; in the interests of basic principles of justice (Nussbaum, 2009).

However, if autism is to be understood in rhetoric form, we are still “minority rhetors” and as such, we must seek to de-mythicize our worlds (p. 488) Without this, we surrender ourselves to researchers’ ethical hyper caution and what ensues are mimetic accounts of events and autistic experiences, less than authentic and preserving of the allistic status quo (Freire, 1970, p. 112). This is problematic and not just for reasons of social justice. Remembering that autistic inertia or “stuckness” applies not only to cognitive stasis but to the more visible forms of autistic inertia, we must “be with” the people through dialogical action despite the hardships. However, progress is slow. But optimistically, there has been a narrative turn toward more nuanced representations of autism which utilize the sense of narrative integrity the community has longed to be part of. For example, the OP-DOC’s, “Inside Our Autistic Minds” produced by the BBC highlights the stories of four autistic people who share, through meaningful exchanges with their autistic host, their understandings of autism (BBC iplayer, 2023). Furthermore, “Alongside We Travel: Contemporary Poets on Autism” is the first literary anthology to gather international views on autistic lifeworlds in a variety of traditional and experimental forms (Dougherty, 2019). Whilst a harrowing read, these collections demonstrate autistic people have a sense of shared culture and thus, the kind of work we are suggesting from researchers is what Ratcliffe (2005) terms as a form of rhetorical listening she defines as a practice that should fundamentally alter how we hear and respond to the discourses of others through an interpretive stance of openness. Furthermore, Radcliffe’s attention to the understanding of silence as a rhetorical form is useful here, particularly when autistic silence is seen to make communications “invisible” creating a narrowing of the adoption of open research practices in autism research. Remembering that human silences are a form of communication may serve to explicitly contain these concerns, particularly if we also consider that silence can also be subject to the more systematic forms of rhetorical criticism such as Kenneth Burkes’ Pendatic Analysis (as Burke implies where there is rhetoric, there is persuasion, even if that persuasion is non-verbal (Burke, 1969).

Other forms of “silent” autistic aesthetic creation can also be found within the wider artistic community. For example, autistic artist Jon Adams (2014) described his autism as being instrumental in allowing him to conceptually engage through his synesthesia to produce a “geographical metaphor” during the 2012 Olympics. This project’s unorthodox approach bares some similarities to an ethnography, but interestingly, utilized techniques from the hybrid fields (Pink & Fors, 2022; Przybylski, 2021; Ridout et al., 2011). The project was viewed as dialogical which aligns with the premise of this paper as the intent was to create a genuine shift in attitudes toward disabled people whose narratives are frequently disregarded (Adams & Loriggio, 2014). Adam’s hypotheses fundamentally challenge some of the most foundational assumptions about autism which proliferates autism research methods traditionally. Primarily, that the autistic have a deficient comprehension of metaphoric language and as such, would belie metaphoric representation difficult. However, in reality, very little is known about autistic abilities to generate metaphors and some research findings directly contradict this (Kasier & Mashal, 2014). Furthermore, autistic people are widely believed to operate in “I-it” relativity which the allistic do not understand and which arises as a consequence of the double empathy problem (Milton, 2012). The actual questions should be about capacity and the prospect of benefit for the participants before automatically assuming vulnerability by virtue of ableist assumptions. For nothing about the construction of a methodology should render a significant population incompetent. And yet this is where we are.

Clearly, we have come to view the primacy of the word, spoken in one way and with an absence of alexithymia, as the one true representation of voice (Cook et al., 2013). However, and referring to Ricoeur’s rule of metaphors, the metaphor makes one see things because it represents things as in a state of activity (p. 48). And whilst this does mean most or many may ‘speak in narrative’, Ricoeur suggests there may be an underlying relationship between ‘signifying active reality’ and the action of speech (p. 48). This is because for Ricoeur, all mimêsis (the Aristotelian re-presentation of nature), especially those which are in creative form, take place within the horizons of a being-in-the-world. This links to Heideggerian dasein, providing an ontological grounding for viewing any deviations from normal lexis as belonging to the great enterprise of ‘saying what is” (Heidegger, 1962; Ricoeur, 1975). Therefore, it is academic dishonesty from the standpoint of double hermeneutical perspective to present humanity as only acting within the action of speech. Mckemmish et al. (2012) refer to this as the challenges and complexities of the double hermeneutic spiral and in this light, there should be no doubt that narratives can be understood in hybrid forms because nature leaves space for the ‘making’ of imitation (Ricoeur, 1975, p. 47). There must be recognition after all, that autism research is particularly at odds with the double hermeneutic problem because the majority of studies look to science to categorize autistic people and explain autistic behavioral phenomena through the lens of quantitative data (Milton, 2012; Ridout, 2017).

On the Subject of Silence

Other attention should be paid to our discomfort with silence. According to Clandinin and Connelly (2000), narrative inquiry is distinguished as being one and amongst “the midst of living and telling, reliving and retelling” (p. 20). As such, narrative inquiry is always a relational endeavor, and arguably, silences form an essential part of those embedded spaces. Whilst silence is often considered a way to demonstrate trauma there is an argument to suggest that the untold stories of experiences can be shaped by silence and this is relevant to autism for many reasons. As (Ratcliffe, 2005) stated there is a dominant interpretive trope from which systemic prejudices are shaped. A consequence of this agenda is the shaping of research designs in the methodic priorities of non-autistic individuals which see narrative inquiry within the substance of text and the activity of storytelling (Gubrium et al., 2009). Autistic people are very capable of storying their skills, experiences, and beliefs but only when there are dis-efforts from thoughtless methodologies that create, heighten, or attenuate vulnerabiltities (Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council, 2018).

Blix et al. (2021) offers an alternative perspective, suggesting that silence can be understood as a practice. Exploring the potential of silences they state, creates a means of “being wakeful to silences” which aligns with hermeneutical understandings of phenomena reflected too in the works of Ricoeur (1975). Thus, the practice of contemplative silence, in its manifestation as a mode of capable being, is not only an ethical activity but a way in which the oppressed can present their human solidarity. Therefore, whilst we may be minority rhetors by virtue that there is silence embodied in some autistic narratives, through a hermeneutical endeavor and a breaking of academic habits, there can be a rethinking of narrative form, in and for the world. One could also question, why we are so uncomfortable with silence and why researchers are so unwilling to observe tacit narrative forms. Ketelaar (2001) noted that this may be because our understandings are based on discourse and as such there has been little to relativize notions of truth but rather the multiplication of perspective, whose truths are largely from ableist viewpoints (p.136). However, in a post-traditional society, traditions should be brought into contact with one another and forced to ‘declare themselves’ as we cannot claim to be post-traditional if we systematically discount any narratives which only fit traditional forms.

This brings me to the RAI Film Festival (2023), which similarly to “Inside Our Autistic Minds” (2023), has sought to challenge the dominant discourses around silent narratives. Showcasing over 80 cinematic works including one collection entitled disability futures, the program highlights neuro-diverse lifeworlds through the re-framing of languages, which demonstrates how humanizing methodologies allow for more artistic expressions of truth. And there is an appetite for this within the autistic community as trust in autism research from a participant perspective has waned; paving the way for the same sense of inertia reflected in the autistic aesthetic forms aforementioned (Heilker & Yergeau, 2011). It is difficult to contest here that research methodologies, on the whole, have remained stubbornly analog in their representations of autistic narratives, and in one sense, this speaks to the linear and homogeneous lens from which we view their design and speaks to our pursuit of finding narrative coherence. However, given that self is the center of narrative gravity (Baldwin, 2016), this presents a distinct challenge to the pursuit of any one narrative coherent account and this false dichotomy continues to oppress the autistic and the wider disabled community (Goodley, 2021). And perhaps we have become far more interested in finding the gold, than mining for it, and within these acts, we have forfeited the autistic person as outside of self or situated within Te Kore, described in the Māori community as the realm between non-being and being (Paterson, 2016). This highlights how dehumanized we are as a community, being considered biologically human, but not people in the moral sense and thus, “unaccounted for” (Goodley & Runswick-Cole, 2016; Taylor, 2013).

As such, Te Kore used in this metaphoric sense is characteristic of ableist viewpoints of autistic people as the representation of stark black nothingness which in Māori culture represents the state before life, highlights the dehumanizing effects of oppressing voice. Furthermore, it is important to note the chaos Te Kore is aligned with, aligning with ableist beliefs about autism that we are somehow incapable and incomplete beings. And therefore, whilst abundant with possibilities, Te Kore is pronounced in its nothingness and carved in this image, the autist thus presents to the allistic world as less than human. Therefore, to challenge this requires what Freire (1970) terms a “profound rebirth” (p. 35). For if autism is aligned as a state of Te Kore and to the realm between non-being and being, ableist privilege will always precede and autistic people will continue to be presented as a state of stark black nothingness, or of the state before or outside life.

“Of habits and of Baggage”

These dialogues are uncomfortable but necessary; as historically and from an autistic standpoint, the oppressed close themselves in their truth and are less compelled to “jettison some of their baggage of their old academic rigor” (Jones, 2012, p. 17). For if views of the oppressors are left largely unchallenged and protected from criticism under the guise of ethical care, there is a strong sense that there will be no incentive and even less appetite for researchers to develop flexible methods which adhere to autistic values and value autistic rhetorics in their various forms. What I am suggesting by way of a solution is that those who are committed to participating with autistic people in research environments must authentically commit themselves to the process of unlearning and unpacking the prejudices they hold about the capacities of autistic people which systematically overrule any attempts of meaningful participation. This is not meant to dispel caution and adherence to broad notions of ethical conduct but to ask for contemplative awareness. In doing so, I ask researchers to humanize the autistic and to have the confidence to design methodologies that more fully understand the multiplicities of narrative forms using methodic techniques such as photo narrative, cinematography, and arts-based methods which value aesthetic forms of “storying” (Ridout, 2014). What will follow are more inclusive practices that define the suitability of participants within autistic methodic parameters which directly confront the double empathy and hermeneutic problem autistic research presents. However, idealistic this maybe it has to be prioritized as despite Tolich’s (2016) cautions that ethical research boards threaten narrative research as they try to make formal, what is a dialogical and relational task (p. 597), researchers do face a Sisyphean task. However one could consider that they must widen the narrative parameters of autism research praxis in the interests of avoiding a stalemate position (Goodley & Runswick-Cole, 2016; Goodley, 2021).

One of the reasons why we have faced this sense of methodic stasis is perhaps a consequence of allisticness which functions as a visible and dominant category of humanity. As such, the sharing of autistic voices in creative methodic form has been historically disenfranchised from autism research, resulting in a significant lack of autistic viewpoints; other than those which elicit narrative coherence. These acts of privileging some sources of knowledge over others do not celebrate neurodiversity but exploit both directly and indirectly, the insecurities of the autistic community (Freire, 1970, p. 117; Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council, 2018). Articulated by Ratcliffe (2005) as “consciously standing under discourses that surround us and others while consciously acknowledging all our particular—and very fluid—standpoints”, this form of cultural inaction leads to a celebration of our deficits and differences and leads to normative assumptions in the field of autism research (p. 28). This prevents the growth of human inquiry and divorces autism research from the more progressive, hybrid field. However, I would argue that there is interest from both autistic and allistic communities to make this change, especially when most established research practices concerning the autistic community are also those with the least participatory input from autistic people (Goodley & Runswick-Cole, 2016; Pellicano, 2020; Ne’eman, 2010; Ridout, 2017).

There is then a deep frustration felt by the autistic community, particularly as research continues to focus on the medical model of autism and represents a narrow, deficit-focused approach which the community is keen to dispel (Den Houting et al., 2022; Petersen, 2011; Ridout, 2017; Van Den Hoonard, 2016; Ridout et al., 2011). Certainly, there is work to be done here in building researchers’ confidence to challenge those perceived systemic issues which are seen to prohibit participatory research and it could be argued that allisticness, aligned with Milton’s (2012) double empathy problem, will continue to function as a visible category of humanity, providing neurotypical reasons for this displacement (Tolich, 2016). The point is that we are continuing to bear witness to what are the products of ableism; inherited with it an autism research agenda that is (i) inflexible and over-scrutinizes autistic research participants, (ii) captures autistic representation anecdotally if at all, and iii) obscures autistic voice due to differing priorities. Therefore, researchers should seek and value autistic input, but reject the systems that claim to protect autistic people but are still inequitable and work with autistic communities to create and experiment with creative methodologies which develop their narrative capital (Kasier & Mashal, 2014). In this light, and as an autistic person, I would say, what have they to lose? Since the publication in 2000, “Nothing About Us Without Us” by James Charlton and others in the same authoritative vein, there is still a far greater presence of research on “us” which further perpetuates oppression and naturalizes somatic anomaly (Charlton, 2004). This suggests that to prevent inertia in autism research, there must be an absolute commitment to privilege autistic voices and dilatory spaces from which autistic people can develop their narrative capital. As you cannot fit a square narrative peg into a round narrative hole (Baldwin, 2016).

I would argue then and by way of conclusion, that theorizing of the intersections of allisticness and autisticness as carved in the same forms of humanity is the only way to subvert the status quo of autism research. Such an approach seeks to understand the human in “us”; as heterogenous, ubiquitous, and uniquely aesthetically significant. This is an anthropic obligation; as to grow our understandings requires an untying of knots or “a moral mandate” which reconfigures the ethical system in the interests of the inclusion of all respondents (Lincoln & Denzin, 2003). In this sense, the “messy” representations of autistic experience including silence will take their place among new genres for representing lived experience (Law, 2004). And for this to succeed, there must be an acknowledgment of the privileged status of allisticness and the power that it affords. This forces a confrontation of those perceptions of autism and ignores the complete specificness of humanity. Moreover, intersectionality reaffirms that both the allistic and autistic are collective terms to describe “us” and this request for re humanization through transabelist approaches to research methodologies may well be the autistic lesson (Barnbaum, 2009; Garland Thomson, 1997; Goodley, 2021; Goodley & Runswick-Cole, 2016; Pellicano et al., 2013). Above all, no lessons should overstate or supersede those decisions which reveal the super-organic narrative character(s) of the oppressed.