“I feel forces like waves of sensory energy:” The Phenomenology of Ido in Autismland

 

ido

Ido Kedar, author of Ido in Autismland: Climbing Out of Autism’s Silent Prison (2012)

Autism, in the Diagnostic and Statistical Manual of Mental Disorders (IV-TR), is “characterized by severe and pervasive impairment in several areas of development: reciprocal social interaction skills, communication skills, or the presence of stereotyped behavior, interests, and activities.” It is tempting in this regard to think of autism as one of the limits of sociology, a phenomenon where the sociological discourse must fall silent. In the clinical usage from Leo Kanner on down, it signals the inability or absence of social connection, the lack of reciprocity or Weckselwirkung (“exchange-effect”) that Simmel defined as the proper dimension of the social.

This is surely not correct however. Even the most non-social, non-verbal autists are involved in social relationships.  Certainly they are in Foucault’s sense of being defined by the clinical descriptor “autism” and all that this entails for relations of knowledge and power. They are also enmeshed in other ways in the social relationships of family, peers, school and institution. To a large degree these relationships might seem purely affective rather than symbolic, especially for those non-verbal autists for whom symbolic interaction is difficult. In Gerhard Bosch’s view, autists are in fact über-social in the sense that their dependence on others comprises an almost complete social symbiosis: a way of life that defines them as social creatures through and through. “These children are thus not just dependent and incapable of looking after themselves, but their whole behavior shows that they rely on and are adjusted to being cared for, dressed, fed, and looked after. Their behavior presupposes the continued presence of someone to look after them…” (cited in Zaner, 1981, p. 184).

carly fleishcmann

Carly Fleischmann video

In fact, the autobiographical account of Ido Kedar in Ido in Autismland and others like Carly Fleischman’s Carly’s Voice reveal the non-verbal autist to have a rich responsiveness to others. These accounts describe an experience mediated by language and centred in a consciousness of self and others–including attributes of empathy, responsibility, and the “I/me” dialectic described by George Herbert Mead.

The problem that Ido Kedar recounts in his autobiography is that the clinicians  only recognized “consciousness,” and thus agency, self, and sociality, in externally observable demonstrations of language competence. The dogmatic insistence on continual testing within therapy to see whether Ido could demonstrate a “theory of mind”–a capacity to perceive others’ mental states–created the therapeutic conditions for an acutely painful double bind that persisted for years in the repetitive exercises of Applied Behavioural Analysis (ABA) and the Picture Exchange Communication System (PECS). Ido writes:

It frustrates me to look back at how my ABA teachers drilled me endlessly in basic skills only to say it wasn’t mastered because I had inaccurate pointing. I knew everything so easily. I was bored to tears but my apraxic hands would go to the wrong card so they thought I didn’t know “book” or “tree.” I did it over and over. It was the worst. The assumption that people don’t understand if they reply incorrectly is a huge misconception. ABA is built on this erroneous misconception (p.54).

With all the force and acuity of righteous teenage ire, Ido dissects the concept that to be fully, interactively human is to be equated with the ability to demonstrate language competence in tests.

Phenomenology

Husserl

Edmund Husserl (1859-1938): BBC program on Husserl

Phenomenology provides a potential antidote for these problems of clinical analysis and practice.  It offers an avenue of rich description of autism from the inside—from autism’s specific ‘openness to being’—that can correct, or at least resituate, the abstracted, secondary knowledge of clinical diagnosis. When Edmund Husserl conceived phenomenology as the “return to the things themselves”–an examination of the world as it comes to presence within immediate experience—he suggested that the strength of the non-phenomenological sciences were also their weakness. The ability to accumulate knowledge, to build upon previous observations and research, to fill in a comprehensive account of “the truth” of the world, was also the means by which “the truth” of the world was passed over too quickly. As Merleau Ponty (1962) put it,

To return to things themselves is to return to that world which precedes knowledge, of which knowledge always speaks, and in relation to which every scientific schematization is an abstract and derivative sign-Ianguage, as is geography in relation to the countryside in which we have learnt beforehand what a forest, a prairie or a river is (Phenomenology of Perception, p. ix).

In sociology, phenomenology has been a minor school of sociological research. In medical sociology, it is often used in a somewhat limited way to draw attention to the disjuncture between patients’ lived experience of illness and doctors’ diagnoses based on disease models. In the case of autism, in Ido’s case in particular, clinical practice sees the list of symptoms that categorize a child as autistic and then moves quickly to whatever current therapeutic interventions exist. It passes over the actual experience manifest in the symptoms. Despite being based on a science of empirical observation, it does not actually “see” the experience itself. What is the experience of repetitive behaviours, avoiding eye contact, sensory defensiveness? It is of course difficult to know what is happening for a child at these moments when the child is not able to verbally express what is going on. But what is missed here is primary. What do these symptoms or markers entail about the nature of autistic being? How is it to be autistic?

What then is autistic being? How is it to be autistic?

ido kedar

Ido Kedar video

Ido Kedar’s account of his coming to language is an especially rich source to examine the horizons of autistic experience. Until the age of 7, Ido was regarded as a “low functioning” non-verbal autistic child. The assumption was that he was severely cognitively impaired. He could not communicate. The drilling, flashcard exercises, and verbal instructions went “in” but no coherent responses came “out.” Even after his mother realized that Ido could spell out words if she offered assistance, the experts believed she was just prompting him.  It was not until around the age of 9 that Ido began to independently point out letters one by one on a writing board. The problem all along was a condition that Ido describes as an apraxic disconnection between conscious intention and action. “It’s hard to speak because apraxia is like a bad phone connection. I know my thoughts are getting lost on the way to my mouth. I think of an idea. I try to say it and the wrong thing comes out” (p. 53).

Leo-Kanner

Leo Kanner (1894-1981): CBC Sunday Edition “The Story of Autism”

Stimming” is one of the characteristic gestures of autism. Repetitive actions like hand-flapping or eye pressing are described as stimulations that produce sensations within the body. Ido’s first entry in the book is on the sudden urges that come over him to stim: to repetitively flap hands, make noises or spit out water.  Ido’s account provides an important corrective to the literature.

In Leo Kanner’s (1943) view, the monotonous repetition of gestures of the autist are governed by an “anxiously obsessive desire for the maintenance of sameness” (p. 245). They are mechanisms that provide an escape from a chaotic, disquieting, unpredictable environment to a comforting and known sense experience.  Similarly, in Zaner’s (1984) view (citing Bettelheim and Bosch), the stims act as defenses, or even “incantations,” against the primary social experience of differentiatedness.  Autistic children, “faced with at least what they apparently take as an overpowering, immensely threatening and radically unalterable world, seem to put up a defense–a retreat into non-action or rigidly ritualized and repeated actions” (p. 186). But both Kanner and Zaner seem to immediately fall into normalizing accounts of the experience, defining the phenomenon in terms of the distance, as it were, between the “behaviours” of autism and what is normal and appropriate “behaviour.” They overlook, or have no means of access to, the directly lived experience of stimming from the point of view of their autistic subjects.

The phenomenologist is confronted therefore with the question of how can we access this experience on its own terms. “The being” of autistic stimming—what it is—requires a different kind of reflection, a different kind of sniffing out or sensing. As Heidegger puts it,  “to follow a direction that is the way something has, of itself, already taken is called, ‘to sense.’ To venture after sense or meaning is the essence of reflecting” (Science and Reflection, p. 180). What is the essence of stimming?

“I feel forces like waves of sensory energy”

Clarke Moustakis’ (1994) guide to phenomenological research recommends the approach of horizonalization to get “to the things themselves.” He breaks the accounts of subjects’ experiences into separate horizons to define the unique worlds of experience disclosed by each distinct expression of the phenomenon. As he puts it, “Each horizon as it comes into our conscious experience is the grounding or condition of the phenomenon that gives it its distinctive character” (Moustakis,1994,  p. 95). In the attitude of epoché (i.e. from the Greek, to stay away from or abstain from), the researcher brackets his or her presuppositions about the phenomena and grants every statement in an account equal value to avoid pre-selecting the significant meanings. This allows the researcher to step back from his or her biases, or even the narrative logic of the account, to perceive the unique horizons or worlds of each element of the experience more clearly.

amanda baggs

Amanda Baggs video, “In My Language”

In the entry on stimming Ido says, “I feel forces like waves of sensory energy” (p. 42). Within the description of this experience the horizons that form the unique world of the stimmer can be discerned. A number of elements grant this statement its distinctive originary character as a horizon.

The first part of the phrase “I feel forces” bestows the forces with both the immediacy of a felt effect and a purely impersonal quality as “forces.” Prior to the determination of their source as internal or external, they come to presence as something both “felt” and, with respect to Ido the person, indifferent. They elicit the idea of a certain kind of access to ‘forces of nature,’ although the phrase ‘forces of nature’ would need to be subjected to further examination.

The second part of the phrase “forces like waves” describes the wave-like nature of the experience of forces. It takes the form of a simile or analogy within language, an invitation to compare the feeling of the forces to waves, whether oceanic or electro-magnetic. But Binswanger (1986 (1930)) argues that phenomenologically, such similes should not be taken primarily as either logical analogies or poetic metaphors, even if they arise out of language itself (“every man’s spiritual homeland”). Instead this phrase should be taken as describing the experience of actual waves that ebb, flow-over and buffet Ido, in the sense that tangibly his footing in the shared, consensus world becomes precarious.

The final part of the phrase “waves of sensory energy” evokes the experience of sensation, not as particular sensations oriented to a subject (sight, sound, taste, touch, smell, etc.), but as quanta of energy or intensity that shift in magnitude with the movement and density of waves. This offers a comparison to the way that fluctuations of soft sounds and loud sounds, or of dim light and the power of the blazing sun, indicate the fluctuating intensities of the sensations arising from them. But in Ido’s account the sensory energy is not specific to any particular sense. The sensory energy is experienced as undifferentiated quanta.

Martin Heidegger

Heidegger’s Letter on Humanism:  “Within the destiny of Being in metaphysics the lighting first affords a view by which what is present comes into touch with man, who is present to it, so that man himself can in apprehending (noein) first touch upon Being (thigein, Aristotle, Metaphysics IX, 10)”.

In what sense do these characteristics provide the ground for the act of stimming and give it its particular world? Stimming is clearly not just a rote, unthinking behaviour that has been reinforced by positive feedback to become habit. If thought, going back to Aristotle (Metaphysics, Book 9, Ch. 10), is the means by which humans can “touch” the world (thigein), then stimming is a kind of thought. It is a mode of expressing a non-representational thought, or affect. Stimming creates a horizon that orients thought, yet it is a way of thought that seemingly by-passes or forestalls the “I think” of a locatable agent. In Ido’s account stimming is a response to the intensity of sensory energies and a mode of expression that carries these energies or forces to their fruition. It is a response that holds meaning, even if the effect of stimming pushes the world of meaning to its breaking point. The forces come as unpredictable, impersonal events or happenings which, as Ido describes in other passages of the same entry, take form as “urges” that “overwhelm” Ido-the-subject and threaten to “overflow  inside” unless he stims. They mark thresholds of affect which threaten to nullify the tenuous agency Ido claims. Ido is swept away by them. The different acts of stimming—he mentions hand flapping, grunting, spitting out water—are the modes of expression that transform the pressure of these impersonal forces into “a sensory world of big soaring feelings.” They are acts of passage that ‘come’ and carry Ido away into a purely sensory world. Each act–hand flapping, grunting, spitting, etc.–has a different qualitative effect, which a phenomenological account could examine further.

From this ground, it is possible to see how the stimming manifests in four forms in Ido’s account: as an amusement (“I enjoy vocal stims the most. Other people hear those as pointless sounds, but for me they are entertaining”); as the imposition of an urgency (“to hold it in is like forcing me not to vomit; the urge is that strong”); as a release of tension (“They work to let me release my emotions sometimes”); and as the realization of, or entry into, a purely sensory world  where the possibility of becoming “lost” is ever present  (“I am bombarded with silver lights and streams of colour. It’s beautiful to watch. They mesmerize me, but sometimes they scare me”).

Life and Power

There are at least three figures of the relationship of power and life in Ido’s account in Ido in Autismland. This is just the first one, the impersonal power of forces of a life which are too strong and carry him away – “a becoming that is too powerful for him” to paraphrase Deleuze (“Life and Literature,” p. 3).

There is a second figure of life and power, centered on the disciplinary power of the clinical sciences of autism. This is the relationship that opens up within the power to separate and prioritize normal and abnormal life, neuro-typicality and neuro-atypicality. In practice, it leads to the program of continuous scientific experimentation exercised directly on the ones like Ido who are classified as non-verbal autists. Contemporary therapies like ABA, (Applied Behavior Analysis) are practiced through continual testing. The recognition of language development that qualifies a life as neuro-typical is pre-established by the self-fulfilling criteria of valid communicative performances. It is this figure of power and life–an example of Deleuze’s “society of control”–that Ido resists and fights back against, even if it is protected and sanctified by the caring relation.

The third figure of life and power, is the figure of healing, of coming to health, of overcoming the “stupid disease of autism,” of the joy of realizing a power of action. In Nietzschean terms, the experience of healing or coming to health is the experience of power, in the sense of  feeling empowered to realize a specific power of action.“What is happiness? The feeling that power is growing, that resistance is overcome” (Nietzsche, Antichrist, Section 2).  For Ido this is manifest in his growing ability to independently communicate through the devices of the language board and Ipad, but speaks to a relation of self to self, of overcoming the painful resistance to taking initiative, and of inserting himself into social circuits of communicative exchange whereby, in Ido’s estimation, he can claim a status and be recognized as a human.

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