Seeing and inviting participation in autistic interactions

Abstract

What does it take to see how autistic people participate in social interactions? And what does it take to support and invite more participation? Western medicine and cognitive science tend to think of autism mainly in terms of social and communicative deficits. But research shows that autistic people can interact with a skill and sophistication that are hard to see when starting from a deficit idea. Research also shows that not only autistic people, but also their non-autistic interaction partners, can have difficulties interacting with each other. To do justice to these findings, we need a different approach to autistic interactions—one that helps everyone see, invite, and support better participation. I introduce such an approach, based on the enactive theory of participatory sense-making and supported by insights from indigenous epistemologies. This approach helps counteract the homogenizing tendencies of the “global mental health” movement, which attempts to erase rather than recognize difference, and often precludes respectful engagements. Based in the lived experiences of people in their socio-cultural-material and interactive contexts, I put forward an engaged—even engaging—epistemology for understanding how we interact across difference. From this perspective, we see participatory sense-making at work across the scientific, diagnostic, therapeutic, and everyday interactions of autistic and non-autistic people, and how everyone can invite and support more of it.

Keywords

autism double empathy enactive approach engaged epistemology indigenous epistemology linguistic bodies participatory research participatory sense-making

Between a fishbowl and an imitation game

What does it take to see how autistic people participate in their social interactions—between themselves and with non-autistics? And what does it take to invite and support more and better participation, if, when, and as desired and appropriate?¹ If we engage badly with someone or something we are trying to understand, we may misunderstand and potentially damage them. This regularly happens with autistic people, and with autism as a topic. Damian Milton (2014), an autistic autism researcher, writes that approaches to autism “often [lead] to ill-fated attempts at normalisation and a continuing vicious cycle of psycho-emotional disablement” (p. 799). This happens because the lived experiences of autistic people are often taken as deficient and as not relevant or interesting in their own right (Hens, 2019; Jaswal & Akhtar, 2019; Yergeau, 2018).

It happens for instance when autistic people are taught the ‘rules of social interaction,’ as part of one or another ‘remedial program.’ For example, autistic children are ‘taught’ to make eye contact by conditioning them. But it is well known that making eye contact can be painful for autistic people (Schaber, 2014). Furthermore, making eye contact is not necessarily a generally expected behaviour across situations in all cultures (LeVine et al., 1994; Zhang et al., 2006). Teaching autistic people to make eye contact ignores—even goes against—the needs and sensitivities of many autistic people. This example in the realm of practice has its counterpart in psychological theories about autism, such as the Theory of Mind (ToM) theory, which suggests that autistic people have difficulty reading other people’s minds (Baron-Cohen et al., 2013). Such theories are objectivist and individualistic, and start from a detached view of the human psyche and social world. Because of this, these theories preclude many researchers from seeing autistic people’s engagement. Teaching people (autistic or not) the ‘rules’ of social interaction does not tend to lead to improved social fluency (Koenig et al., 2009; Ozonoff & Miller, 1995).

This is because our social capacities cannot be captured in abstract rules about how to interpret and predict others’ behaviours. Instead, social expertise is based in the lived experience of the social interactions we engage in from very early in life (Di Paolo & De Jaegher, 2012; Lymer, 2011; Reddy, 2008, 2012; Trevarthen & Aitken, 2001; Zlatev et al., 2008). Since ToM is about interpreting and predicting behaviours and ignores the significance of connecting and interacting, it may in fact reinforce the “fragmented social perceptions” of autistic people “via the very way ‘social skills’ are being taught” (Milton, 2014, p. 798). A better approach is to begin from the capacities, even if limited, that an autistic person has, and to build up from there, in and through activities of relating, such as imitation and child-led play (Caldwell, 2006; Nind & Hewitt, 1994; Nind & Powel, 2000; see also Gernsbacher, 2006).

There is a high need to better recognize autistic people and their capacities, needs, desires, and struggles. But, as Jessica Benjamin (1988) shows, recognition is two-sided, and comes with high stakes in interaction. While engaging, we not only recognize an other; we are ourselves recognized, with all the risks this involves. Really engaging with autistic people thus provides us with more than a mirror in which we become aware of ourselves and our approaches. We cannot avoid being transformed by how we know autism. This is as true for carers, researchers, and psychiatrists as it is for autistic people and their family, friends, therapists, teachers, and colleagues. In all of these capacities, we engage and interact with each other. Lack of engagement can literally make us misunderstand each other (see e.g., Maddox et al., 2019; see also Fletcher-Watson et al., 2018).

Milton (2012) has diagnosed what he calls a double empathy problem, pointing precisely to difficulties in understanding that both sides have, allistics (i.e., non-autistic people) as much as autistics. Not seeing this, and—paradoxically?—expecting autistic people to do all the work of making interactions better, results in “a lack of interactional expertise between researchers and autistic people[,] a breakdown in trust and communication [and] an increase in tension between stakeholder groups” (Milton, 2014, p. 800).

I agree with this, and also with Milton’s recommendation, shared by many autistic people and by more and more researchers, that, in order for research on autism to “claim ethical and epistemological integrity,” we need to stop “fishbowling” people with autism (Milton & Moon, 2012). Instead, we need greater “involvement of autistic scholars in research and improvements in participatory methods” (Milton, 2014, p. 794). There is a lot of development and promotion of participatory research (see e.g., Fletcher-Watson et al., 2019; Nicolaidis et al., 2019; Pellicano et al., 2017), but it is also being criticized by some autistic researchers for carrying its own risks of being exclusionary. My question in this article is: How can we best understand the lived experience of the dynamics of participation, so that participatory research methods most benefit autistic people, and everyone’s understanding of autism?

Milton (2014) puts forward an approach to furthering the involvement of autistic researchers in autism research, as well as engagement between autistic and non-autistic people more generally. Building on sociologist Harry Collins’s concept of “interactional expertise” (Collins and Evans, 2007), Milton proposes a kind of imitation game to test whether a researcher understands autistic people enough to speak about or for them. To see if someone has the ability “to engage and interact with autistic language and communications” (Milton, 2014, p. 796), they should show a capacity to imitate being autistic, such that independent judges could not distinguish them from an autistic person.

But this kind of test is problematic. The first question, raised by Milton himself, is whether it is possible to have full imitative expertise of someone else in the case of (high) neurological difference (such as, supposedly, between an autistic and a non-autistic person). He even wonders whether “some level of expertise in what it is to be autistic on a phenomenological level of lived experience [is] always beyond the grasp of non-autistic social scientific researchers” (Milton, 2014, p. 799). In some sense, I think it is. But neither the lived experience nor the expertise at work here is fixed, as we will see.

There is a second question we must ask. To show that we understand someone, do we really need to imagine or pretend to be so much like them that we become practically indistinguishable from them? If we were to become so much like the other, to the point of becoming them, we would coincide with them. And this, in fact, makes us lose both the other, and ourselves.

But not only this. In so doing, we also lose the possibility to, precisely, interact with each other. Interacting, engaging, requires that we remain separate. It is only as people who are different but interested in engaging that we can interact. And it is only in such interactions—between people who are different but interested in each other—that we can get to know each other, both in life and scientifically (Reddy, 2008).

I know this last point, that we need difference, interest, and engagement for gaining scientific knowledge, is contentious. A received criterion of rigour in european-north-american science demands that we gain knowledge only from an indifferent, disinterested, detached stance. However, it has been well established that understanding knowledge in this way is an illusion (see, e.g., Césaire, 1990; Meek, 2011; Polanyi, 1958; Prigogine & Stengers, 1984). But not only that. Understanding knowledge like this can be actively harmful. One area where this shows is precisely autism research. By “scientifically” interacting with autism, i.e., with an objective—really: remote—stance, researchers contribute to the alienation of autistic people. We could even be accused of instituting alienation. This is what the neurodiversity movement acts against (Davidson & Orsini, 2013; Kapp, 2020; Milton et al., 2020; Singer, 1999; Walker, 2017; Woods et al., 2018). Started in the autistic civil rights movement, neurodiversity counters the idea of one standard, “normal” way of being and thinking, and instead advocates for understanding the neurological diversity that characterizes the human population as a whole. We are all different, and all deserve respect in our differences. The dominance of colonial western scientific thinking is not only contested by autistic people, but by many others as well, not in the least by indigenous peoples across the world. Various indigenous epistemologies can be seen to share in questioning the european-north-american idea of what it means to know (Semali & Kincheloe, 2002, p. 45). At the same time, autistic people are increasingly asking of mainstream medical and cognitive science: what does it mean to participate, to interact, to communicate, and to know oneself? These questions are deeply related. One of the backgrounds I weave into this article brings together arguments of critical autism studies and the neurodiversity movement with decolonizing epistemologies. I do this because they share a striving against the (psychiatric) othering of colonial approaches, and for respect across difference.

For all these reasons, what I will argue for and work to better understand in this article is interested engagement.

My aim is double: I want to contribute to better seeing the kinds of participation that are already there in the interactions of autistic people, and to invite more of it, in accordance with the needs, questions, wishes, struggles, and strengths of everyone involved in each concrete situation. I will do this on the basis of a cognitive science paradigm that is precisely concerned with understanding human interaction in this humane way—one that does justice to human intersubjective experience. This is the enactive approach to cognition.

Enaction is a paradigm in cognitive science that begins from the needs of living beings, their situated and bodily experiences, and the ways they engage with each other, to understand how they make sense of the world and each other (De Jaegher & Di Paolo, 2007; Thompson, 2007; Varela et al., 1991). I introduce this approach in the second and third sections, while also expanding it with insights from indigenous epistemologies.² In the fourth section, we will look at some examples from autistic languaging and interacting through the lens of this enriched enactive approach, and implications for transcultural psychiatry.

What runs through all this, both in practice and in theory, are threads and difficulties of engagement. The current changes in our understanding of autism and in the scientific disciplines and fields of practice involved in this lead to novel insights, but also to new tensions in engagement. The growing participation of autistic people in all aspects of research and the autistic self-advocacy movement open up not only exciting new questions, but also heated debates. One example is the question of which language to use to describe people with autism. Which way of speaking most helps autistic people live well, be themselves, and participate in society? The best thing to do is to ask them, and to be open, sensitive, and transparent about the issue (see e.g., Block et al., 2015; Brown, 2011; Gernsbacher, 2017; Kenny et al., 2016; Sinclair, 2013; Yergeau, 2018). This is a good paradigm for autism research and for understanding and engaging in interactions with autistic people in general.

To be better able to cut through some of the complexities surrounding social interactions and autism, I think it is useful to see that what we are facing are tensions in letting each other be. Tensions, that is, in dealing with difference, from both sides, as Milton and others show. If, as scientists, therapists, teachers, medical doctors, we impose a certain understanding of autism on the people we are interacting with, they cannot be, in a particular sense. They cannot be themselves. This is—and leads to—misunderstanding and harm. To change this, we need to better understand what respectful engagement is. Engagement, that is, in which we can all let each other be.

I have a particular meaning in mind of letting be. I do not mean by it an invitation to disengage. On the contrary, letting be refers precisely to the existential engagement that is at the heart of all our interactions—an engagement that involves us deeply, and that is as transformative of the being and becoming of whom we engage with, as it is of our own being and becoming. This is a difficult thing both to understand and to do. This is because it generates all kinds of tensions, of self-maintenance and of mutual influences and determinations.

To better understand autism and to better interact with each other, everyone will have to be able to stand on their own ground, to bring their own specific wishes and capacities, questions, troubles, and hopes to the table—autistic and non-autistic participants alike. The letting be that I am talking about here is an existential engagement. As such, it is at once epistemological, ontological, and ethical, and involves all interaction partners fully.

In what follows, I explain what this means based on Kym Maclaren’s work in epistemology, insights from indigenous epistemologies, and the enactive approach to social understanding as participatory sense-making.

A broken horse and epistemology

How do we know something? Philosopher Kym Maclaren says knowing has something to do with letting be (Maclaren, 2002). What does this mean? Consider, she says, a horse trainer who is mainly interested in making money off of their horse. They train and train the animal, drill and exercise it. As this goes on, the horse becomes more and more damaged and dispirited. Eventually it breaks down.

This horse has not been seen properly. It has not been recognized in its horseness, in its particular, concrete, individual, living being; in its needs to—also—roam and play and connect. The trainer has not let the horse be. They have not known their horse properly, and this has impacted the horse’s very being. The example shows something about how interwoven knowing and being are. It shows that the way we know something has consequences for its being, impacts its being.

The example also shows something about the relation between knower and known. Knower and known are linked in their relationship. If the very being of the known can be impacted in the relationship of knowing, then knower and known are tethered to each other, at least for as long as this epistemic relationship holds. This, in turn, also impacts the knower. Because isn’t the horse trainer doing their particular kind of knowing badly, if they destroy their horse in their efforts to make money with it? And doesn’t this mean that their capacity as knower, that is, their being as this particular knower, as a horse trainer, is impacted by their way of knowing? Knowers act on purpose (McGann, 2007). Their intentions, wishes, desires, fears, motivations, and so on—in part—determine how they know. And their ways of knowing can sometimes defeat their very purposes. They can go against their own motivations and interests.

Knower and known are intertwined. Knowing is an activity-in-relation that impacts both knower and known. Knowing modulates and transforms the being and becoming of both. This makes knowing and being-known tensionful activities, for all involved. This is both a deeply philosophical and a deeply practical issue.

It is also an issue that may not be so easy to understand, especially for those accustomed to a western, colonizing worldview, which considers humans’ most sophisticated ways of knowing to be abstract, disconnected, and disinterested. A reader may wonder whether the example is really a good instance of knowing, because the horse trainer has a particular interest when interacting with their horse. What they are doing, one may say, is not knowing; they are, rather, using it. To call what they do knowing would be to say that their knowing is tainted, biased—and this is not how we are used to thinking of knowing. But the point that Maclaren and other thinkers make (Heidegger, 1959; Levin, 1988; Merleau-Ponty, 1945/2012) is that knowing is precisely like this. That knowing is never, in fact, disinterested. Disinterested knowing is not just an illusion, but even to consider “true” knowing to be abstract and disinterested is unethical, because it merely pretends that knowing has no impact on the known and the knower, and this can lead to harm.

Where knowing in its full ethical significance is taken seriously is in engaged epistemologies. Developmental psychologist Vasu Reddy illustrates this well in her book How Infants Know Minds. Reddy shows how infants, from a much younger age than an individualistic, cognitivist psychology predicts, participate in creating humour, in playing, in being the object of another’s attention, in self-recognition (Reddy, 2008). Reddy does this work as a psychologist, using anthropological methods like participant observation. This is of course no coincidence, because anthropology and sociology have always been the parts of western science that have been most closely concerned and aligned with engaged epistemologies and methodologies.

Anthropology, however, has not had a sustained influence on the cognitive sciences, including psychology, even though rapprochements between them have been attempted (Boden, 2006; Turner, 2018). Perhaps it is not so hard to understand why they have not often been comfortable bedfellows. There is something inherently concerned with abstraction, with disconnection, at the heart of european-north-american cognitive and medical sciences, which it is hard to break open, dissolve, and separate from broader colonial projects. Many cognitive scientists (including neuroscientists, psychologists, psychiatrists, and many ‘applied’ professions linked with them, such as education, therapy, medicine, social work, care work, and so on), and imperialist society in general, are much maligned by cognitivist, individualist, functionalist assumptions. These assumptions are in fact and in effect divisive. We seem quite convinced that the more abstractly we think and work, the more capable we are. A case in point is the thought that if we could only make autistic people learn the ‘rules of social interaction,’ they would become socially fluent. But the idea that something like this can work pulls all of human capacity to the side of ‘coldly’ dealing with abstract rules. It ignores the wealth, depth, and intricacy of the lived, intersubjective sensitivities and powers that ground and pervade our abstract capacities.

From phenomenology to feminism to decolonial theories to critical psychiatry, we know that we can only understand subjectivity and knowing—human intentionality—by looking at interactions between real, toiling, worldly bodies (e.g., Davar, 2014; Dhar, 2020; Lugones, 1987; Maclaren, 2002; McNally, 2001; Merleau-Ponty, 1960, 1945/2012; Mills, 2014; Stawarska, 2009a; Velez & Tuana, 2020). On this kind of understanding, abstract knowing (what colonial cognitive science often takes as the highest form of intelligence) is not so much the lonesome pinnacle of our sophistication, but in fact derives from our essentially dual (not: dualistic!) and connected nature (Stawarska, 2009b).

There is an approach to cognitive science that recognizes and begins from this. This is the enactive approach. Varela, Thompson, and Rosch (1991) said, in The Embodied Mind (one of the first ‘manifestos’ of enaction), that:

it is only by having a sense of common ground between cognitive science and human experience that our understanding of cognition can be more complete and reach a satisfying level. We thus propose a constructive task: to enlarge the horizon of cognitive science to include the broader panorama of human, lived experience in a disciplined, transformative analysis. (p. 14)

That is: to root the view of cognition in lived experience. And moreover, to root it in intersubjective experience (De Jaegher & Di Paolo, 2007; Thompson, 2001a, 2001b). This means: to see that most of our sense-making is both participatory and situated. How we know is deeply shaped in and by the socio-cultural-historical-materially situated face-to-face interactions we engage in (Di Paolo, 2015, 2016; Di Paolo et al., 2018; Lugones, 1987; Maclaren, 2017, 2018).

But an experiential-intersubjective ground for cognitive science is not something pristine or innocent. As soon as we understand that cognition is social, communal, and interactive, we also understand that it is a mess. This is something that rationalist, individualist, functionalist accounts do not even see, but that, as soon as we recognize the intersubjective ground of knowing, becomes clear and unavoidable. We like to ignore this, because messiness seems too hard to deal with, especially for a ‘neat,’ abstract science. But in cutting out the mess and making everything abstract, rational, detached—‘manageable’—we cut out precisely the heart of what is going on. We cut out the making of meaning.

Here is where western cognitive science can—and needs to—learn from epistemologies that are comfortable with the mess. Epistemologies, in other words, that have engagement at their roots. They can be found in many indigenous worldviews and in what Boaventura de Sousa Santos calls ‘epistemologies of the south.’ De Sousa Santos articulated the notion of epistemología do sul to describe the fragmented ways of knowing and suffering, but also the hybridity emerging from the experience of being colonized (de Sousa Santos, 2007, 2018). Linda Smith (1999) argues that western science has been complicit in colonial projects and is itself an imperialist endeavour, and that research should be non-positivistic and be focused on social justice, for and with colonized people. Engaged epistemologies, generally and each in their own ways, understand how knowing is through-and-through ethical and ontological (Kimmerer, 2013; Kincheloe, 2011; Simpson, 2017; Welch, 2019). They know that we do not know anything without modulating its being and our own being. That knowing is consequential and has impact. It comes with responsibilities to what we know, to ourselves, to our worlds, views, and practices. There is a connection between these ways of knowing and critiques of and mobilizations against the Global Health Movement, which intends to globalize the western biomedical idea of mental health (Cooper, 2015; Kirmayer & Pedersen, 2014; Mills, 2014).

Cognitive science, to fully understand human knowing, needs to engage with engaged epistemologies to learn about the responsibility of knowing. But this cannot be a relationship of taking some elements, assimilating them, and forgetting others. The abstract, functionalist approach of traditional cognitive science is fundamentally at odds with engaged epistemologies. Disconnected and dichotomous thinking is at the basis of functionalism, and cognitive science is riddled by an abyss between mind and body, feeling and reason, subject and object of which the bottom is out of sight. What is needed for cognitive science to understand knowing-as-engaging is to first of all begin to see the common ground underlying experience, intersubjectivity, and sense-making. Cognitive science itself needs to begin recognizing this, before it can start to engage with engaged epistemologies. This is because, as Sarah Lucia Hoagland (2020) says:

it is not because we are able to be scholars that we are positioned to develop knowledge of marginalized others; it is because of how we are positioned in relation to marginalized others that we are able to be scholars. (p. 48)

The enactive approach, with its basis in both existential phenomenology (e.g., Merleau-Ponty 1945/2012) and dynamical systems theory (Juarrero, 1999; Thelen and Smith, 1994), can recognize the existence and influence of an abstract separation between mind and body, reason and emotion, and so on, while also seeing both elements arise from the same soil. Because, as a science, it roots itself in the material-energetic processes of life, in lived experience, and in intersubjectivity, it is grounded. It is not abstract, but toils; it continually works at understanding, also at a meta level, by critically reflecting on its own continual theoretical and empirical development (see Di Paolo et al., 2018). This, I think, is the ground from which enactive cognitive science can begin to engage with engaged epistemologies, and to build an understanding of difference in general—including neurodiversity—that does justice to everyone’s experience, while also understanding what cognition is at a general level. The point here is that “[t]he problems facing us are solved, ‘not by giving new information’ … but by us ‘going on’ with each other in a new way” (Katz & Shotter, 1996, p. 926).

Engaging epistemology

The enactive approach to cognition defines cognisers as sense-makers. Sense-makers act and interact out of their various cares and concerns. Things matter to sense-makers. Sense-making (cognition, knowing, understanding) happens in relation to the various identities that people maintain, e.g., as a client, a teacher, technician, baker, student, sister, scientist, and so on. Maintaining these identities gives them perspectives from which they view and interact with the world and with each other. They act on the basis of needs that stem directly from these concerns, which form the ever-changing bases of their different identities. All of this, they do as metabolic, sensorimotor, and intersubjective, societally situated, labouring, and working bodies (Di Paolo et al., 2018). We have metabolic needs (hunger, thirst), sensorimotor habits that we maintain or try to break (smoking, dieting), and intersubjective concerns (‘will they like me?’) and agencies. As particular, concrete, and situated bodies, sense-makers have needs and constraints on all these levels that intricately relate to each other.

Underlying living sense-making is a basic tension between self-production and self-distinction (Maturana and Varela, 1980; Varela, 1979). Living beings continually construct themselves out of the environment, and in doing so, also continually distinguish themselves from the environment. Sense-makers deal with the tension between these opposing tendencies by regulating their couplings with their environment in view of their metabolic, sensorimotor, and intersubjective needs and constraints and what the environment has to offer—what we call agency. In this way, enactive sense-makers are continually individuating themselves and ongoingly becoming in interaction (Di Paolo, 2018, 2020; Di Paolo et al., 2018).

Sense-makers engage in social interactions, which are emergent processes between people that generate their own dynamics. These processes can pull people in, or push them out. Social interaction processes can self-organize and take on a certain autonomy (De Jaegher and Di Paolo, 2007; De Jaegher et al., 2010). The processes that make up social interactions, e.g., the rhythmic dynamics between interactors’ breathing and heartbeats, or how their vocabularies align over time, can coordinate in such a way that these processes themselves work to maintain the interaction. As such, interaction processes can—in part—determine how people participate in them. We not only influence each other in our interactions (our intentions, motivations, and perspectives are impacted by each other’s presence, moves, and utterances), but these interactions themselves, as emergent, coordinating processes, also determine what happens in an encounter. Think of greeting someone you have not seen in a while. Imagine you are used to meeting in a formal context (say, as doctor and patient), but this evening you bump into each other at a house party. You’re feeling jovial and light-hearted. How will you greet each other now? Will you shake hands? Hug? How the greeting in this different situation turns out not only depends on each of your intentions and the context, but is also coordinated there-and-then. Whether it will end up being a hug or a handshake (or a clumsy ‘neither’) emerges, in part, out of the interaction itself. Each of you participate in it, each of you bring expectations. There is a certain pre-coordination, but the greeting that emerges tonight is co-determined by the interactive normativity (by the coordination dynamics that emerge between you in context), and what each of you brings.

Enaction searches for the principles of sense-making by asking What is at stake for a sense-maker?, thereby doing justice to their specific bodily needs, self-organization, constraints, context, and capabilities. Asking what is at stake for someone helps to see what identities they are maintaining, what their concerns are in the situation, and thereby why they behave in certain ways.

The enactive approach also theorizes language, elaborating on Bakhtin’s idea that language is a living stream in which we participate (Bakhtin, 1981, 1986; Cuffari et al., 2015; Di Paolo et al., 2018). It is a living stream of utterances, all around us, that we take up, agree with, or contest, struggle with, do and do not understand, carry forward, copy, repeat, address to others and are addressed by, modulate, transform. This stream of utterances moves through us and changes us. We variously pick it up and play with it. As we participate in language (which, as linguistic bodies—as humans—we continually do), both we and language change. Our organization as living, sensorimotor, and intersubjective bodies is modified by language as we participate in it. Language can affect us, down to the metabolic level. Think of how a harsh word from a loved one can make it hard to digest dinner (cf. research showing that quality of marital relationship impacts wound-healing, Kiecolt-Glaser et al., 2005).

We incorporate other persons’ and socio-cultural ways of speaking, of thinking, of judging. We can even incarnate others’ agencies. This means that others can ‘speak through us.’ When this happens, we don’t know whether it is us speaking, or the other person. You may have your grandmother’s “clean your plate!” in your ears after dinner. You have incarnated your grandmother. She is a small part of how you organize your life, the actions you take. Is it you or her speaking? In this case, you may be fine with this particular incarnation, but other such ‘voices’ you may not want to accept, you fight with. This is the tension of self-production and self-distinction that linguistic bodies deal with: maintaining your ways of speaking, thinking, interpreting, acting, meaning, presenting and being yourself, while always participating in (including rejecting, questioning, critiquing, etc.) the living stream of language that you move in, incorporating and incarnating others’ agencies.

This enactive way of approaching (human) sense-making is, then, an engaged or even an engaging epistemology (De Jaegher, 2019). What does this mean? Maclaren (2002), remember, said that knowing is letting be. It is a balancing between the ongoing becomings of both known and knower. The knower has to let the known be, in order to know it. Letting be is an activity, but an activity of at the same time approaching (determining) the known, and letting it be—itself. Too much interference with the known, and it will be over-determined—in danger of losing itself—so that we do not truly know it, or misunderstand it at best. Too little interference, to the point of disengaging from it, will mean we also do not know it, because we are not in touch with it anymore (we under-determine it). Knowing as letting be is a careful epistemological balancing act that happens only in a relation.

This idea of knowing as letting be is unusual, and perhaps a little difficult to understand. But there is an area in our lives where we know these tensions of letting be well. We know the—sometimes difficult—balancing act of letting be in our loving relationships. I am thinking here in particular of the most basic tension in loving relationships: that between being in relation and being yourself. How much do you give in, how much do you assert yourself, and still remain well-connected? We know this kind of tension from parent–child relations, friendships, romantic and sexual relationships (see e.g., Gilligan, 1982, 2003). What furthermore characterizes every loving relationship at its most basic level is that it is existential. Loving goes out from the core of your being—it involves you existentially—and goes out to a particular other, whom your loving reaches out to, because of their being. It is thus a radically existential relationship. Loving is a non-neutral, particular, concrete involvement, with particular, concrete others, in particular, concrete interactions. In this kind of relationship, not only you, but the other, as well as the interactions between you, impact all of it. This relationship, then, has three elements: the ones who love (that’s two), and their relationship itself. Each of these plays a fundamental part in loving. Leave one out, and there is no loving. (The elements are necessary and sufficient.) This is an extension and deepening of the primordial idea of participatory sense-making. Here also, the individual participants co-determine and are co-determined by their interactions (De Jaegher and Di Paolo, 2007; De Jaegher et al., 2010). In loving, this interaction involves you basically and existentially. Loving is an existential dialectic that swirls up both its individuals and its relational/interactional elements into an ongoing storm.

The problems of the colonial tendency to think epistemology dichotomously stem from forgetting this root and core of what knowing is. Knowing is like loving in the sense that both are manifestations of the same existential way of relating (De Jaegher, 2019). Loving and knowing are both fundamental ways of relating in which the lover (the knower) is existentially involved with a particular other, and in which their relation, as well as each of them as participants, play basic primary roles, and can all influence and impact on each other. Already on the enactive idea that living beings are metabolically involved in their sense-making, knowing is deeply determined by what is existentially necessary for the organism. As living beings, we are tied to our life provisioning—our processes of living are completely intertwined with our environments. An engaged epistemology, one that understands the depths and widths of human knowing by engaging with people, can thus be understood as a loving and knowing epistemology, or an engaging epistemology.

Defining loving as I do (in this conceptual-experiential exercise) begins from the most basic, minimal form of both loving and knowing (De Jaegher, 2019). The form of knowing that is analogous to loving, that is, the most basic form of knowing, is this form of relating. Maclaren (2002) makes the same point. She also says that the fact that the horse trainer could get it so wrong with their horse, destroying it in the process (and also damaging themselves as a trainer), shows that letting be is something we have to learn. Moreover, she argues, we learn it from letting others be. Letting be, she says, is first of all intersubjective, in-relation-with-others. I agree with this. Her example shows that knower and known are existentially engaged. Both of their being is implicated in this relation between them. More even: Maclaren (2018) also says that we are ontologically intimate with each other, which means that in knowing each other and interacting with each other, we cannot help but transgress each other. This is perhaps the strongest explication of why epistemology is ethical.

What can this enactive, engaging epistemology do to help better see how autistic people participate, to let autistic people be (themselves), and to improve interactions between autistic and non-autistic people?

Implications for transcultural psychiatry: Heeding what participation teaches us

What guidelines for both seeing and improving participation can we derive from the enactive approach sketched in the previous sections? The first recommendation is to start from where and how people are, and to let them be where and how they are. To begin any engagement from there. Some autism research already takes this as a starting point. It begins to shed light on some of the sophistication with which autistic people participate in social interactions.

Adopting the attitude of letting be does not close the door to scientific research, or to therapy. On the contrary, this attitude can inform and help generate scientific hypotheses and improve practices. In our book Linguistic Bodies, we put forward two enactive hypotheses about autistic linguistic participation. First, we propose that autistic people tend to over- and under-regulate interaction dynamics. And second, we propose that they braid utterances differently. This means that autistic people tend to engage with different threads of meaning than non-autistics do (Di Paolo et al., 2018, chapter 10). This may make it hard for them to pick up on certain meanings. Autism is diverse, it manifests in diverse ways, and autistic people interact in many ways. The maxim we worked out in Linguistic Bodies is that, in the face of all this diversity, one thing to do is to enhance participation, if and when desired. Also if this means to take breaks, to retreat, to remain sometimes unseen, to not know, and to attend to “a rhetoric that tics, a rhetoric that shrieks and wails and sometimes bites” (Yergeau, 2015, p. 93). A participation between non-autistic and autistic people that lets each one be and become.

Several studies show that this works well, in both autistic children and adults. For instance, discourse analysis shows that, with sensitive interaction partners, autistic children can play with pedagogical instructions, with withdrawal and engagement, with language, with self-presentation and -interpretation, and with forming their identity (Bottema-Beutel, 2017; Bottema-Beutel & Smith, 2013; Ochs et al., 2004; Sterponi & Fasulo, 2010; Sterponi & Shankey, 2014). They can also collaborate with and have awareness of others when using technology designed to support their ways of interacting (Holt & Yuill, 2014, 2017). Ethnographic research shows how autistic children become both more stable and more flexible in their bodily participation when therapists use sensory integration techniques and take them on narrative journeys (Park, 2008, 2010, 2012; see also Lee et al., 2016). In these investigations, the autistic children, their interaction partners, and the researchers are able to let each other be, while also staying with their own motivations, aims, and perspectives in the interaction. In this way, they can balance the tensions in participation over time, including moving through breakdowns.

Participatory design researchers explicitly involve autistic people as co-investigators to develop technologies to enhance their quality of life. Together, they engage in iterative co-design processes to explore and reflect on what would be most helpful. Approaches like this stimulate rethinking ideas of empowerment, outcomes, and assistive technology (e.g., Frauenberger et al., 2019; van Dijk et al., 2019; see also Fletcher-Watson et al., 2018; Parsons et al., 2017, 2020). Such approaches unearth the micro-ethics of this kind of practice, and naturally go together with critical reflections on empathy, which—if understood as inferring another’s intentions—risks being one-directional and thereby over-determining people’s needs (Spiel et al., 2017, 2019, 2020).

Most autistic people desire friendship, intimacy, and social relations. They may not always know so well how to have them, or may simply have them in different ways than non-autistics do (Calder et al., 2013; Cresswell et al., 2019; Daniel & Billingsley, 2010; Sedgewick & Pellicano, 2019; Sedgewick et al., 2019; Vine Foggo & Webster, 2017). Many experience loneliness, but “talking together” about it can be a “potent remedy,” as Williams shows in a sensitive study that integrates community building and critical reflections on participation research (Williams, 2020, p. 324). Crompton, Hallett et al. (2020) show that having and maintaining friendships is easier with other autistic people than with non-autistics, for all the reasons one may expect: with other autistics, people feel like they belong, that they can be themselves and are understood. In interactions with non-autistics, in contrast, autistics more often feel misunderstood, feel the stresses of being a minority, and cannot so easily be themselves.

These are all examples and considerations of seeing and inviting autistic participation. To do so means to do justice to participatory sense-making’s three elements: each participant’s sense-making, needs and constraints—what matters to them—and the emergent dynamics of the interactions between them. Research shows that autistic interactions have particular characteristics and dynamics (Bolis et al., 2017; Crompton, Ropar, et al., 2020; De Jaegher, 2013; Heasman & Gillespie, 2019). Understanding these better can help combat misperceptions that come from taking a merely neurotypical perspective, and can improve interactions between autistic and non-autistic people (see also Sinclair, 2010).

To conclude, I would like to come back to where we began this article. Milton (2014) hopes that “those wanting to research the sociality of autistic people may take up the challenge of an imitation game” (p. 801). I would not. What I would rather do is to continue interacting with autistic people in ways that are both serious and playful, open and vulnerable, each of us starting from our own points of view and expertise, open to who we are encountering, and to changing and transforming in and through these interactions (and researching and building methodologies on this basis, e.g., De Jaegher et al., 2017). I wholeheartedly agree with Milton (2014) and others that the field of autism research needs full “ethical and epistemological integrity” (p. 796), and that this requires that autistic people participate at all levels of research. But much more is to be gained from engagement than from either fishbowling or imitation games. The road to a solution lies in sensitively moving into and out of what emerges between us. The enactive approach in cognitive science supports and grounds doing this.

This, then, I think, is one way to respond to the questions that Melanie Yergeau (2015) asks: “What to do with scholarship that denies autistic agency, denies autistic voice, denies autistic personhood?” and “how can we create more inclusive spaces to speak back to these theories of lack?” (pp. 89–90). I would say: by understanding how everyone can participate in interactions, and understanding what concretely matters to people in each situation. It is up to all of us to be inclusive. We can do this by continually developing the scientific understanding of participatory sense-making, and by learning to trust its processes in practice.

Reading feminist, decolonial, indigenous, and autistic thinkers and educators, what I hear—even if it is often not said so explicitly—is a plea for colonial scientists to be silent for a change. To participate in silence. This may help us listen. In Audre Lorde’s (2017) words, it may help us recognize that:

[w]ithin the interdependence of mutual (nondominant) differences lies that security which enables us to descend into the chaos of knowledge and return with true visions of our future, along with the concomitant power to effect those changes which can bring that future into being. Difference is that raw and powerful connection from which our personal power is forged. (p. 91)

An engaged epistemology does not mean that we will—or have to—know each other exhaustively. It does mean that knowing each other will never be finished, because each of us keeps on developing, both apart and in relation with each other. That is why this is not just an engaged, but an engaging epistemology. It engages us.

It is true, especially regarding questions like the one addressed in this article, that epistemological integrity needs ethical integrity. It also needs an appropriate ontology, and this ontology is one of ongoing becoming-in-relation. This is bound to involve deep tensions, which we can move through and survive, or not. Understanding that loving and knowing will always involve such tensions should help with moving through them and, in the process, being able to truly recognize each other, even if fleetingly (because the possibility is always there to be recognized wrongly, but also to be recognized better, recognized again).

What bringing together insights from indigenous epistemologies, enactive cognitive science, and the neurodiversity movement does is to deepen the insight at the heart of participatory sense-making, which is that engaging with each other means to stand on one’s own ground and, from there, to engage in social interactions, which will entail breakdowns, repairs, and transformations, of oneself and of the relationship. This is engaging knowing.

As for the field of transcultural psychiatry, both the clinical and the research practice can learn from explicitly recognizing these tensions inherent in engagement. When Melissa Park (2012) says that “the work to cultivate experiences that matter to individuals remains an ‘underground practice’ … that continues to create ongoing dilemmas deeply felt in clinical practice” (p. S34), I wonder what would happen if we brought these tensions to the surface. As Park (2008, 2010, 2012) and other researchers show, we may be able to deal with them better than we thought. That is what engagement-sensitive methods can bring to clinical work and to the sciences of the mind: a lived understanding of our human (in)abilities to participate, and that we can trust them (however paradoxical this may seem at times).

Footnotes

Acknowledgements

Thank you to Jo Bervoets, Luc De Jaegher and Mieke Koppers, Ezequiel Di Paolo, and participants of the 2019 Advanced Study Institute in Cultural Psychiatry “Cultural Poetics of Illness and Healing: Embodiment, Enactment and the Politics of Experience,” June 26–28, Division of Social & Transcultural Psychiatry, McGill University, Montreal (CA), especially Laurence Kirmayer, Keven Lee, Melissa Park, and Hiba Zafran. A deep thank you also to the three anonymous reviewers, one of whom in particular pulled on me to bring some of the ideas in this article significantly forward. And finally, thank you to Jonny Drury and the participants of the #AutismDialogues at Dialogica UK for helping me understand yet better the ideas being developed here.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was financially supported by a Ramón y Cajal Fellowship to the author (RYC-2013-14583) and by the Inter-Identidad project (FFI2014-52173-P), both funded by the Spanish Ministry of Science, Innovation and Universities; and by a Basque Government Group Call funding (IT1228-19).

ORCID iD

Hanne De Jaegher

Notes

Hanne De Jaegher, DPhil, is Senior Researcher in the Department of Philosophy, University of the Basque Country, Spain, and Visiting Research Fellow in the Department of Psychology, University of Sussex, UK. She is also co-Director of Dialogica UK. As a philosopher and cognitive scientist, she studies how we think, work, play—basically, live and love—together. For this, she developed the enactive theory of intersubjectivity called participatory sense-making, a comprehensive framework for investigating our social lives. The concepts and methods of participatory sense-making build bridges between different fields and sectors of expertise, and find application in real-life issues such as autism, therapeutic practices, learning and teaching, intimacy, and development. In turn, these applications inform the further evolution of the theory.

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