Examining the frames of reliability and productivity in non-verbal autism: A critical disability studies approach

Aparna Raghu Menon (she/her)

Aparna Raghu Menon is a PhD Candidate in Public Health Sciences at the University of Toronto. Her SSHRC-funded doctoral project draws on critical disability studies, communication studies, posthumanism, and feminist frameworks to investigate the intersections of autism, health, and communication among nonverbal autistic children and adolescents. 

Abstract
In this presentation, I question the notion that autistic communication is fulfilled only by a successful completion of the communicative act and show how communicative possibilities exist simultaneously within the risks of failure-laden communication or even within a silent refusal to communicate. To do this, I draw on Titchkosky’s and Michalko’s ideas of how disability-framed-as-problem reproduces endless renderings of the problem of disability while leaving the frames completely unexamined (2012). 

For the video recording of this presentation, please see the online symposia recordings page.

As a PhD student located in Public Health, as a mother to a 7-year-old son diagnosed with non-verbal autism, Down syndrome and multiple other diagnoses, as a tutor to autistic adolescents and as a parent counsellor, I am really not a stranger to what has been referred to as the autism industrial complex (Broderick & Roscigno, 2021; McGuire, 2016). Within this dominant complex, autistic non-verbal communication is often construed as faulty. The labels usually applied are unreliable and unproductive. Medicine, rehabilitative services and public health put forward solutions in the shape of ‘evidence-based’ interventions that typically fall under the umbrella of what is known as therapeutic Speech and Language Pathology (I will refrain from making the obvious point about the implications of using the term ‘pathology’ here). One such intervention is known as the Picture Exchange Communication System, or PECS,which is widely used in North America by children and adults with non-verbal autism to make communicative requests. Systems such as PECS are said to increase the ‘reliability’ and ‘productivity’ of communication. PECS is taken for granted as a communication tool for teaching respondents, typically non-verbal children or adults, to make requests to a communicative partner, who is usually verbal and normally a parent, a teacher or a therapist, by exchanging symbols printed on cards for desired items (e.g. food, drinks, toys). The communication request is deemed fulfilled if the “correct” picture card is presented to a communication partner who asks questions or provides 'prompts.'  

But let us step back for a minute here to reconsider the first label –reliability. Autistic non-verbal communication is constructed as unreliable and, therefore, often incomprehensible. Replacing unruly and incomprehensible communication with an exchange of laminated pictures improves the effectiveness of the communicative act because these pictures are seen as objects invested with fixed meanings. Building on this idea, effective communication is thus framed as being dependent on ‘procedural reliability’, which, in this case, is established by marking a boundary around the field of communication, enclosing communicative possibilities to a set of plastic cards and the visual symbols on those cards.  

What if we open the door that critical disability studies provide to interrogate some of these normalised structures? Here, I am particularly indebted to Titchkosky’s and Michalko’s provocative idea of disability-as-frame (2012, pp. 127-141). They write, “Like all other phenomena, disability comes to us in a frame and this frame ‘works’ as a guide and even as a rule for recognizing the phenomenon of disability” (p.129). I draw upon this provocation to ask this question: What if we remove our focus from the unreliability and unproductivity of autistic non-verbal communication? What if we look instead at the frames or in other words, the reliability and productivity of communication that we take for granted as desirable? In his influential book on communication, J.L. Austin recognizes the possibility of what he refers to as “infelicity,” (1975, p. 39) or in other words, the possibility of failure of the communicative process. As Austin points out, the possibility of failure is unavoidable in any communication, yet that possibility does not render the act of communication null and void.  Neither is the possibility of failure external to the act of communication – it is not a trap into which communication might fall! Why, then, is the possibility of failure in autistic communication seen as an exception or accident to be guarded against at all costs instead of as intrinsic to the very structure of communication? For instance, my son might indicate that he wants a cookie. Now he could do this by pointing at a picture of a cookie on a PECS chart or by pointing to the actual tin sitting on my kitchen shelf. However, the unreliability of his motor movements may mean that his finger/hand may sometimes land on not the cookie but on the apple symbol on the chart. Perhaps on another day, he will choose to use ASL and point. Again, maybe he points instead to the tea caddy on the same shelf, three tins away from the biscuit tin. As we now see, failures or infelicities may thus happen with or without the PECS chart. Nor is failure necessarily external to the secure space of the PECS chart, that claims to provide this boundaried field within which interlocutors can carry out a reciprocal exchange that securely avoids potential pitfalls. Communication reliability is thus not a given, as the industrial complex would have you believe, but a ‘reliability-frame’ to draw on Titchkosky and Michalko. Not just that, it is a frame dictated by a communication process that is essentially receiver-oriented. In other words, it is reliable to the receiver and not to the initiator of the communicative act. Yet so unexamined and normalised is this frame that any embodied resistance to this, enacted by the supposed ‘initiator,’ implies a failure requiring a ‘solution.’ Examining and re-examining reliability-as-communicative-frame allows us to reject the possibility of failure as a predicament that must be kept away from the positive operation of communication. Only then can unreliable communication be reconceptualised as a positive contingency of communication and an acceptance of uncertainty. 

Let us now look at the second label: productivity. What if we ask more foundationally whether such an indefatigable insistence, not just on reliable communication but any communication, is itself a frame? Is this unrelenting compulsion to communicate not at the very least as undesirable as the ‘refusal to communicate’? Yet in a biomedicalised world of health and therapy, the only thing that seems to be worth interrogating is this ‘unnatural’ communication refusal. As a result, communicability itself is considered frameless and passes as self-explanatory, natural and neutral. Since the preoccupation revolves around how communication can be made ‘productive’ rather than whether or under what conditions it can be so, the idea that the imperative to communicate might itself be undesirable or detrimental remains, once again, unexamined. When we examine productivity-as-a-communicative frame, we begin to discover that for communication to take place, it must always navigate and possibly transcend a matrix of indeterminacies. An autistic human’s silences or interaction avoidances may themselves be productively indicating their agreement, disagreement, indecision, uncertainty over someone else’s meaning, impoliteness, anger, etc. Conversely, the PECS card that a respondent hands over may signal not a fulfilment of productive communication but a demand that must be satisfied before the responder is allowed to exit the intrusively oral and aural world of productive communication. The communicative act thus performed is not a fulfilment but the enactment of a gap or rupture about which the subject cannot stay silent. 

The cultural reality of communication means that communication always inherently involves a certain incommunicable element. Indeed, if ‘productive’ communicability is defined as the capacity to transfer meanings seamlessly from one mind to another, would this not also imply the termination of communication itself? 

In summary, my purpose in this paper has been to trace autistic communication using PECS and to specify the need for a reflexive critical disability politics around medicalised and reparative therapies with which we surround autistic, non-verbal children and adults. By examining and examining again the frames of reliability and productivity that pass unnoticed as desirable communicative outcomes – as represented by the PECS tool – we open up spaces to trace cracks and ruptures in these frames that present the risk of failure, or even the refusal to communicate as equally constitutive of communication. 

References

Austin, J. L. (1975). How to do things with words. Harvard University Press.

Broderick, A. A., & Roscigno, R. (2021). Autism, inc.: The autism industrial complex. Journal of Disability Studies in Education, 2(1), 77–101.

McGuire, A. (2016). War on autism: On the cultural logic of normative violence. University of Michigan Press.

Michalko, R. (2002). The Difference that Disability Makes. Temple University Press.

Titchkosky, T., Michalko, R., Hughes, B., Goodley, D., & Davis, L. (2012). The Body as the Problem of Individuality: A Phenomenological Disability Studies Approach. In Disability and Social Theory (pp. 127–142). Palgrave Macmillan UK. https://doi.org/10.1057/9781137023001_8