Self and Other in Autistic Experience

The question under discussion in this section revolves around the sense of self formed by an autistic interlocutor and their means of connecting with others. Milton and Lyte Moon take a phenomenological perspective to argue that ‘identities (including autistic ones) are the reflection of embodied lived experiences constructed within the confines of historical and cultural positionality, with the autistic positionality representing an outlying dispositional personal equilibrium’ (Milton and Lyte 2012a: 2). The complex narratives regarding the self and power relations, highlighted through the work of Michel Foucault, is utilised by Karen Gainer Sirota in her study of subjective experiences that autistic teenagers communicate in their school and family environment (Sirota 2012). Sirota brings to the fore these narratives of everyday experiences as technologies of the self for autistics in an attempt at un-shackling them from the psychological reports, the parental testimonies and the various representations that dominate over the autistics’ experience. Karl, an autistic teenager, has been urgently asking his parents to purchase for him a toy that, according to him, ‘every other kid in the school has, except for me. Because I am autistic’ (Sirota 2012: 98). Carl requests said toy by strategically assuming the position of an autistic and re-framing this position as one of power, through which he attempts to manage his own feelings and relationships. From this starting point, Carl proceeds to assume other social positions, becoming a reader, a performer, a dancer, while his fellow classmates cheer him on.

A dense description of these communication exchanges and their statutory precarity is presented by Laura Sterponi and Alessandra Fasulo in an article concerning intersubjectivity and continuity with regards to communication with an autistic child (Sterponi and Fasulo 2010). The aforementioned child, Aaron, utilises the communication abilities and techniques that he has at his disposal for coping with the everyday interactions with his parents. In the authors’ analysis, the repeated use of the phrase ‘Or what?’ by Aaron at pivotal junctures during the conversation, shifts the exchange into a theoretical, hypothetical, abstract level, which enables him to bridge the cracks appearing in this process of communication by recalling a familiar code, a form of regulatory knowledge that has been established in the family's interaction dynamics. Aaron's parents invest in the continuity of a possibly precarious communication, accepting the shaky ground upon which every process of communication is built.

With pertinence to Sirota's political gesture, as well as Sterponi and Fasulo's attempt at approaching autistics’ communication exchanges, I would propose an analysis of the linguistic and sensory structures that marginalise autistic persons and define their formulation of self. I draw mainly from the approach which disputes the existence of an extra-social or pre-social ‘authentic’ self and considers identity and selfhood as a product of power relations, discourses, and subject positions available within language as well as other cultural codes (Du Gay et al. 2000). However, some autistics’ communicative modes in the context of social interaction and the non-normative relation that they form towards representations, pose anew the question of how the autistic self is formed and how normative processes of othering are implicated in this formation. In their study on the sense of well-being according to the narratives of autistic adults, Milton and Tara Sims present the challenges faced by autistics in an exclusory society (Milton and Sims 2016). One of the burdens impeding on their quality of life concerns the process of ‘othering’, which they are forced to deal with due to a multitude of power dynamics and confronting hurtful social attitudes or misrepresentations of their needs and their feelings. At the core of this discussion lies the use of metaphorical language, which, according to biomedical approaches, is exempted from autistic persons’ ways of communication. My reflections here focus on how this difference was experienced in my relationship with Alexis and how I processed the communication gap which arose between us.

When I met Alexis, he was in his late thirties and he was very rarely leaving his house. He used to play the piano in various choirs in the past, although during the time of our first meeting, he had abandoned music. In the note I had received from the psychologist assigned to him, next to their phone number, an instruction–warning had been inscribed: ‘SOS! Hands away from your waist’. During my first visit, Alexis, as an essential prerequisite for our meeting, asked of me to respect this particular sensitivity. Afterwards, while we were chatting and after he had gained some confidence towards me, he described the reverberations that this sensitivity had in his social life. ‘I go out in the street and I see people everywhere with their hands on their waists. Everywhere, at the bus stop, in the street. It's as if they do it on purpose’. He remarked that he had finally stopped going out because of his sensitivity, which, as he explained, caused him sexual stimulation that had to be released.

The psychologist who had acted as an intermediary for my introduction to Alexis had suggested that I keep my friendly relationship with him separate from my role as a researcher. At the day-care centre, Alexis was told that he was there in order to be helped and not because the people there were his friends or because they loved him. Alexis, however, stopped going to the centre. I had chosen not to subscribe to this rigid dichotomy, especially when ‘help’ in this context is a controversial notion, as it holds certain philanthropic connotations, drawn from the medical model of approaching disability. When I asked Alexis why he did not wish to visit the centre anymore, he showed me a text written by his psychologist. The text was referring to his ‘obsession’ (as it is usually framed in a biomedical language), an intense irritation upon seeing someone resting their hands on the waist, something which prevents him from leaving his house. The text was written in first person, as if both the subject of the sentence and the writer were Alexis himself, whereas, in fact, it had been written instructively by the psychologist, and it read: ‘People put their hands on their waist when they are tired in order to rest. I am not omnipotent; I do not have control over others so as to tell them where to put their hands’. As the paper looked crumpled and torn, Alexis explained he had torn it one day because it infuriated him. In an official document written in a paternalistic tone, Alexis’ experience was codified as an egocentric behaviour. In this context, Alexis, as a patient, had to be disciplined in order to participate as a social agent in the process of interacting with others. The authority stemming from the psychologist's expertise was built through this disciplinary practice towards Alexis, deducting from him the importance of his experience. Alexis expressed his fury towards this form of injustice, namely the interpretation of his experience as an intentional strategy used to control others, whereas what he was actually experiencing was a sense of vulnerability in his relation to others. In Foucault's notion of power (Foucault 1976), the practice of the psychologist is a paradigmatic example of how certain practices (say, psychiatry/psychology) and groups of people (psychiatrists/psychologists) come to have an influence on subjugated bodies. Nevertheless, in spite of his position in the existing framework of power relations, he was not ‘passive’, as he had reclaimed his space by refusing to go back to the centre. This agency of his, stemming from vulnerability, problematises harsh hierarchies and dichotomies of activity/passivity with regards to the production of biopolitical subjectivities in the context of health and disability. Alexis’ reaction to the psychologist's note is concomitant with Lyte's account on how behaviouristic prospects dehumanise autistic lives:

Do autistic people have the status of being ‘human’? It is my view that Behaviourists think I have to ‘do’ something to be human, or that I am not intrinsically ‘okay’. The idea of ‘human’ that they hold has been toxic and limiting to me and my inner spirit, to the ‘me-ness’ of me. It dumbs down all my gifts and renders me disabled. It cannot be otherwise: that which makes me the gifted, sensitive, perceptive, creative, original and intelligent being that I am, is, by their processes of trying to turn me into something I am not, yanked and wrenched as though my guts are being pulled out of me: and thus suitably disabled, enables the breaking of my spirit, just as surely as one would do with breaking-in horses. (Milton and Lyte 2012:7)

During my first visit, when Alexis asked me clearly whether I intended to do the thing that bothers him, I replied ‘no’, admittedly with some trepidation, however, because I realised that a slight oversight on my part would be catastrophic. One day, I put my uneasy hands on my chin, being unable to place them on my waist. Alexis looked at me intensely, almost frightened, and told me: ‘You're doing the thing that bothers me’. I did not remember anyone pointing out the fact that hands on the chin were an equally traumatic gesture for him. I apologised profusely several times, and he seemed as though he had accepted my acknowledgement of regret, at least momentarily. I did not meet him for a long period following this event, however, because I needed the time and distance so that I could carefully process what had occurred, feeling that this was a decisive moment for the trajectory of our communication. During the period when I was not in contact with him, I kept trying to understand and explain this rift that had also, in turn, hurt my own feelings. How could the ‘double empathy problem’ be ascribed to a social relation?

Invisible Metaphors and the Formation of the Subject of Language

The aforementioned line of questioning indicates the inability of a metaphysics of the self to account for the way in which the autistic self is positioned and experienced in relation to others, since this self has been subjectivised through injurious codes of intelligibility. The negotiation of this vulnerable position takes place in the midst of personal and emotional relationships, psychic events, biographical experiences, and neurobiological processes which are intertwined with social representations, historic–political conjunctures, and power relations. Inspired by Vic Finkelstein's notorious scenario of a city designed primarily for wheelchair users, Chown prompts his readers to imagine an autistic society. Using a Wittgensteinian framework, he stresses that ‘minds are attuned to the dominant sociality in a society’ (Chown 2014: 1675). In his hypothetical autistic world, non-autistic people would face significant problems in their effort to survive in autistic modes of sociality. Public criteria of the mind in the context of social interactions with autistic people would enable non-autistics to develop an understanding of the minds of autistic people in order to navigate in their world. The meeting between me, a neurotypical, and Alexis, an autistic person, and everything at stake in the space between us, brings to the fore distinct experiences. In the hegemony of neurotypicality, the visibility of autistic persons becomes potentially troublesome for the dominant systems of power–knowledge; their existence and claims question the authorised matrices of intelligibility. The aim of this section is to delve into the relation between my autistic interlocutor and language, the social impact of autistic people's ‘literal’ use of language, and to examine the social exclusion which results from his ‘different’ conception of the conventional division between metaphorical and literal meaning.

Sometime after the rift which occurred in my relationship with Alexis, his mother, mediating for Alexis’ own wish, called me to meet up and I responded positively. After we had exchanged our news for a bit in the living room, Alexis started talking about his everyday life and how he had been seeing very few people. At some point, he asked to speak to me in private. His mother, Mrs. Mary, left the room, while Alexis carefully closed the doors of the room, not leaving even a small crack open, so that nothing from what he would confide in me could be heard from outside. Meanwhile, Ι had grown curious, since in the past we had had a lot of private discussions in the presence of his mother, even regarding his sexuality. And so I was curious as to what this thing was that he wanted to share with me and that his mother should not be privy to.

‘You want me to talk about myself, don't you?’ Alexis asked.

‘Of course I do’, I reassured him.

‘Well, there is something I have never told anybody. On June 8, 2010, I went down to the centre of Athens, at Omonoia. I took a cab, and, as soon as I got in, I saw a boy. The boy looked at me and smiled. Then I thought: The boy flashed like lightning [astrapse apo agori].

‘A very nice thought, Alexis. It is truly beautiful. Why don't you wish to share it though?’

‘Because lightning flashes, not boys. That is not real.’

‘So you've never talked to anyone about these thoughts?’

‘No, to no one, and I have been thinking about this for years. I've never even uttered these thoughts out loud, not even to myself.’

I asked him if I could write about this in my research and he consented, while in actuality, his body language was affectively asking me to write about it and to further communicate his experience. I describe this sense of intersubjectivity and the importance of Alexis’ storytelling by taking into account Yergeau's framing of autistic rhetoricity and communication:

But autism is also a story about communication more generally, about enriching our ideas of rhetoricity and eye contact and the beauty of shiny objects. It's a story about disability culture. It's a story about stories, and what or who is determined to be storyable. It's a story about empathy and expression and reclamation. (Yergeau 2018: 21)

The gesture of sharing his metaphor with me was one of the few moments Alexis had asked to see me by myself, without the presence of his mother. It was right after the rift that had occurred between us, and this left me with the impression that he had offered up this very personal thought in a bid to resume our relationship, with me being there to respond to his desire. It also occurred to me that my resistance to idealise or victimise him and to possibly claim and share my own vulnerability might cause turbulence further down the line, but it also motivated him to share, take responsibility, make choices, connect. We may have managed at some point, given the limitations of our relation, to dismantle some of the pre-existing hierarchical discourses that governed our mutual behaviours and instead produce self-empowerment.

In an unusual way for my neurotypical conception, Alexis’ guilt did not refer to the content of his message, the sexual associations triggered by his contact with a boy. During my various visits to Alexis’ house, I attended discussions of a sexual nature taking place in the presence of his mother, without any hesitation on his part. What prompted such intense emotions was the function of metaphor itself, as a linguistic modality, the form of language which bent its own categorical taxonomies, the ecstatic result of the contact between ‘language’, ‘body,’ and ‘reality’. Tracking biomedical explanations of the absence of metaphor in autistic experience, Anna Thiemann and Annete Kern-Stähler argue that “the relationship between body and mind in autism leads not to the absence of metaphor but to a modification of its conventional uses.” (Thiemann and Annete Kern-Stähler 2008: 216). The story that Alexis generously narrated to me, for which I have his permission to present here, hints towards the processes that occur between experience and the language that is used to express it. What is at stake in this in-between?

In order to clarify this, following the aforementioned argument by Thiemann and Kern-Stähler, I would like to refer to another ethnographic incident. In the day-care centres which I visited during my fieldwork, I used to participate in the periods of children's entertainment, during their breaks from normal class activities. One morning, we were drawing with Angelos and I asked him to draw a fish for me. He started painting a whole scene which included that fish. He drew a boat with a surprising amount of detail, the surrounding sea waves and, between them, a fish. In other words, Angelos recognises a fish only when it is embedded in its environment. During a session, we insisted, together with his supervising occupational therapist, on teaching him the word yellow. We showed him the yellow piece of carton countless times. Angelos consistently resisted learning the word. He would not match the word yellow with the yellow object he was shown. Instead, when the occupational therapist would say the phrase ‘like a banana’, Angelos would respond in no time.

The above incident, highlighting our reactions towards the way Angelos approached the meaning of the word yellow, is characteristic of the type of education autistic people receive. The neurotypical intervention draws its certainty regarding this stance towards him from a belief deeply rooted in Western ableist culture. I am referring to the emphasis placed on the literal function of language, its ability to name things, as if this ability is not dependent on the social context in which it is applied and on the subject connecting with the thing it names. The challenge facing this hegemonic orientation, and the turn towards discovering the limits and relations between language and ideology, had both been anticipated by the approach of ethnography of communication, which prevailed in the 1960s and 1970s, and incorporated the speaking subject in its theorisation, providing access to this restricted region between experience and speech (Tsitsipis 1995). The probing by the theorists of ethnography of communication disputed the orientation of linguistic research that had been conducted until that point because they considered this approach a product of Western cultural bias, whose accepted subject is a single individual with clear ideological and rational intentions. On the contrary, ethnographic research has pointed out that in other, non-Western cultural formations, it is not the intentionality of the speaker that matters but rather the specific speech product uttered by every speaker under specific communicative occasions. The foundational principle of ethnography of communication is the emphatic focus on the act of speech and the will to investigate how the use of language relates to specific cultural, social, and political circumstances and hegemonic ideological mechanisms under which said language is spoken. The analysis of this intractable entanglement between language and body is also the subject of Shoshana Felman's work The Scandal of the Speaking Body: Don Juan with J. L. Austin, or Seduction in Two Languages (Felman 2008). There, she analyses the disjunction between knowledge and pleasure which characterises the mythical life of Don Juan. Moliere's hero takes advantage of this specific separation, especially the ability of language to refer to itself, which in turn offers to the speaker a scandalous autonomy from the consequences of his commitment towards the correspondence between words and referred objects. For some autistic persons, this expected mirroring structure of language and its expressed meaning represents a tortuous, somehow open question: how is this coincidence achieved, the correlation and consistency between the speaker and his/her words, the language and the body?

The work of Judith Butler (1997a) investigates the disciplinary and violent processes of materialisation of socialised embodied subjects which take place through conscious and unconscious, visible and invisible, identifications and disidentifications. The educational contributions of language learning have a defining power over this process of normalising the materialisation of embodied autistic subjects. In her performativity theory, which originates from the critical adaptation of John Austin's speech act theory (Austin 1976), discourse is not absolutely defined by the specific speaker or the context in which it occurs and becomes validated, and that is precisely why it is marked by its ability of becoming detached from them. Subverting the dominant monologism of a presumed stable and integral subject, the theory of performativity proposes that agential action results from the limits in language.

Prefacing some ethnographies which approach this dialectic relation between language and society, Elinor Ochs denotes a popular practice by anyone contributing to the linguistic socialisation of a child of indicating with the use of verbs such as ‘say’ or ‘do’ followed by the word that the child has to learn, usually with a specific intonation of the syllables. This familiar educational process is based on continuous repetition. However, through the findings of fieldwork research in non-Western social and cultural contexts, friendlier verbal practices have been proposed in order to promote ways of communication in children. Such practices include, for example, the description of the circumstance, the guiding questions which orientate the child, the syntactic and grammatical simplification of sentences, and other strategies which can build a social environment of signified communication (Schieffelin and Ochs 1986: 6). In any case, this ‘say’ imperative mediates the relationships between many autistic people and their family or educational environment.

Being aware of the imprint of these aspects of typical language learning in autistic children, I will trace the relations at stake between language and pain. What is the impact of the injurious interpellatory dimensions of language on the embodied experience of autistic people?

Between Experience and Language

Returning to the metaphor that Alexis had created, my interlocutor's realisations were similar, when he talked about the ‘real’ which was violated in his meeting with the other, in the unconscious affective processes that were triggered ‘inside’ of him and were struggling to find an exit.

‘Did you see?’ I told him. ‘If you go out you may meet other such boys that may smile to you. You won't see only people that do the thing that bothers you.’

‘Yes,’ he replies, ‘I am a pessimist.’

Language exerts a force over Alexis which becomes painful in an intensely experienced embodied way. For instance, Alexis described the expressions of several people that addressed him as frightening, without any of them having the intention of frightening him. One day, a psychologist addressed him with the expression ‘Alimono sou’, which roughly translates to ‘You're in trouble’, uttered in a playful way. Alexis conceived of both him and his words as threatening. He told me this after I asked him what it meant for him to receive such an imperative expression.

Among the arguments Judith Butler develops in her work Excitable Speech, regarding linguistic vulnerability, I wish to highlight the points which concern the spatial and temporal force of language, which, in my view, aptly describe the traumatic relation some autistic people have with language and the linguistic component of their social trauma. Inferring an existential relation towards the links of language with both space and time, and consequently its connection to the body, Butler highlights the transgression of spatial–temporal conventions, as they are transposed to the convention of language. She writes: ‘To be addressed injuriously is not only to be open to an unknown future, but not to know the time and place of injury, and to suffer the disorientation of one's situation as the effect of such speech. Exposed at the moment of such a shattering is precisely the volatility of one's “place” within the community of speakers; one can be “put in one's place” by such speech, but such a place may be no place’(Butler 1997b: 4). These spatial–temporal dimensions of public life and the corresponding social antagonisms which inhabit them, among other political implications, are occluded in the everyday use of language and emerge in conditions of linguistic vulnerability and social injury. These conditions produce an environment where some autistic persons experience neurotypical language as (potentially) threatening, since every word violates its own verbal context in the precise moment when the autistic person experiences its represented content.

The lack of visibility of the context of linguistic interactions, often occurring in neurotypical interactions, is crucial here. When neurotypicals speak, the body somehow vanishes: through patriarchal and ableist constructions, the body is deemed to belong to nature; in a deep dichotomy with culture, it is regarded as absent. However, autistic writer Naoki Higashida explains that when someone else is talking, some autistics ‘try to listen to the other person with all of our sense organs’ (Higashida 2007:43). This is one of the points where the difference between autistic people's conception of meaning through language can be found in comparison to non-autistics. Through this lens, in the incident I mentioned earlier regarding the learning of the word ‘yellow’ by Angelos, the addition of the word ‘like’ helped Angelos surmount the neurotypically automatic, self-explanatory, metaphysical circumvented gap which exists between the sense of yellow and the word yellow. It is from this perspective that we might read the urge of Jim Sinclair when it comes to communication with autistic people:

It takes more work to communicate with someone whose native language isn't the same as yours. And autism goes deeper than language and culture; autistic people are ‘foreigners’ in any society. You're going to have to give up your assumptions about shared meanings. You're going to have to learn to back up to levels more basic than you've probably thought about before, to translate, and to check to make sure your translations are understood. You're going to have to give up the certainty that comes of being on your own familiar territory, of knowing you're in charge, and let your child teach you a little of her language, guide you a little way into his world. (Sinclair 1993)

Non-autistics need to analyse the mystifications of social relations and sensory experiences that are concealed through the use of language. This perspective transposes the issue from the ‘nature’ of symptoms towards the social position of autistic people, specifically towards their ‘otherness’, which contrasts deeply with the invisible and privileged locality of a neurotypical person. For Alexis, the metaphor violated a linguistic reality: the fact that lightnings strike, a linguistic representation which is not even self-evident for the entirety of the autistic spectrum, but a ‘truth’ nonetheless for Alexis’ symbolic abilities, with which he had been struggling ever since. In this sense, ‘truth’ stands for the situated knowledge that he had gained until then, which, as a familiar past, limited the representations that had never been created inside of him as of that moment.

Conclusion

As Anna McGuire, following critical disability studies, notes: ‘Disability is always both lived and lived with. In this way, when we are talking about “living with” disability, we are also talking about how disability is related to and is constituted by a relationship to non-disability’ (McGuire 2010). In an account on autistic spaces, Jim Sinclair explains the challenges raised by ‘autistic togetherness’. Although he describes a community of autistic people without interventions by neurotypicals, he also stresses how helpful a neurotypical ally might be: ‘On the other hand there are benefits that NT people bring to social situations: They tend to be far more oriented than we are in social encounters. They know what to do (or at least they know how to fake knowing what to do). Sometimes NT people are willing to explain things to us and coach us’ (Sinclair 2010). Although these critical observations call for an ethics of mutuality and cooperation between autistic and non-autistic people, critical autism studies have also stressed the uneven power dynamics that these relations entail (Milton and Moon 2012b).

In non-autistic experience, complex discursive fields, as intelligible and normalising fields of meaning-making, hegemonise the possibilities and perspectives of self-reflection. Unconsciously, non-autistic people internalise the structures of power relations, as the work of Judith Butler has shown. The body materializes and is being materialised performatively as a process within social time. Some accounts of autistics’ experiences show that they often manage to escape from these exact processes of subject formation that poststructuralist critique has described in detail. Dawn Prince describes how her language is contextual and sensory-based:

For me, language was blended inextricably to context and memory. This melding represented the most important thing in the world, and everything, from bathrooms to snails, to dogs, had language. If a thing existed, it existed as a living part of language and had a deep understanding of its place in the vibrations of speech, in the vibrations of existence. (Prince 2010)

In order to create space for autistic self-determination and for the formulation of metaphors we have not yet been privy to, non-autistic people have to trace these different trajectories of language acquisition, use and performance. They have to question and even abandon the certainties and conceits that linguistic categories produce and reproduce, such as the rigid distinction between metaphorical and literal language. In his article on critical disability studies, Dan Goodley writes: ‘When disabled people (and non-disabled people for that matter) ask “who am I?” they risk being hit with the mirror of the abled self’ (Goodley 2013: 640). In a way, autistic people are often hit with the mirror of a language which is supposed to have lost touch with the body, in order to represent a sense of belonging within objectified categories. As Lennard Davis notes referring to Pinker's account on speech: ‘All speech is an allusion in which we do not so much listen to a speaker as try to fit that speech into preconstructed categories, so that we simply hallucinate word boundaries when we reach the edge of a stretch of sound that matches some entry in our mental dictionary’ (mentioned in Davis 1995:19). Instead, Alexis’ metaphor shows us the painful and sensory dimensions of a language which has its roots in the embodied and affective experience of human reciprocity.