AAC Technology, Autism, and the Empathic Turn

ABSTRACT

Augmentative and Alternative Communication Technology [AAC Tech] is a relatively young, multidisciplinary field aimed at developing technologies for people who are unable to use their natural speaking voice due to congenital or acquired disability. In this paper, we take a look at the role of AAC Tech in promoting an ‘empathic turn’ in the perception of non-speaking autistic persons. By the empathic turn we mean the turn towards a recognition of non-speaking autistic people as persons whose ways of engaging the world and expressing themselves are indicative of psychologically rich and intrinsically meaningful experiential lives. We first identify two ways in which AAC Tech contributes positively to this development. We then discuss how AAC Tech can simultaneously undermine genuine empathic communication between autistic persons and typically developed communicators (or neurotypicals). To mitigate this concern, we suggest the AAC field should incorporate philosophical insights from Design for Emotions and enactive embodied cognitive science into its R&D practices. To make our proposal concrete, we home in on stimming as an autistic form of bodily expressivity that can play an important role in empathic communicative exchanges between autistic persons and neurotypicals and that could be facilitated in AAC Tech designed for autistic people.

KEYWORDS:

• AAC technology
• autism
• empathy
• Design for Emotions
• participatory sense-making

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes

1. The two explicitly philosophical discussions of AAC that we have come across are by Kathy Howery (2018) and Josh Dohman (2016), with the latter discussing AAC in passing.

2. We should note that there are degrees of being ‘non-speaking’ and different ways in which one may incorporate an AAC device in one’s daily life. Someone may be permanently non-speaking or intermittently non-speaking, where, in the latter case, there may be certain periods or situations that make using one’s natural speaking voice undesirable (for instance, because it is too taxing or, perhaps, because it simply doesn’t meet the way in which one wants to express oneself and respond to a situation). We want to thank an anonymous reviewer for encouraging us to make this explicit.

3. The labelling language surrounding autism is complex. We will use ‘identity first’ language (e.g. ‘autistic people’ and ‘autistic persons’). This is typically the preferred label used by autistic people who argue that their autism is an integral part of their identity. Cf https://autisticadvocacy.org/about-asan/identity-first-language/

4. Though increasingly accepted as an essential resource for people with Complex Communication Needs, AAC Tech has also been seen as controversial by many clinicians and educators. One concern, which is now considered empirically false, was the worry that introducing AAC Tech into the lives of non-speaking children would stunt them in their abilities to communicate in more standard ways (Cf Millar 2009). Two forms of AAC usage that continue to be viewed with suspicion are Facilitated Communication (FC) and Rapid Prompting Method (RPM), both of which involve physical and/or emotional and/or instructional support from another person throughout the communication process (Cf. Mirenda 2009). While many users of FC and RPM insist on the authenticity of their communicative acts (Cf. http://nonspeakingautisticspeaking.blogspot.com/); and while academics such as Douglas Biklen, who introduced FC to North America, have also defended their emancipatory potential; the American Speech Language Hearing Association (among others) has raised concerns about the scientific validity of these methods, stating that it ‘should not be assumed to be the communication of the person with a disability’ https://www.asha.org/policy/ps2018-00351/. We will leave these controversial debates to the side, focusing on the now more widely accepted forms of high-tech AAC that do not involve direct in-person mediation from another human person. That said, there are philosophical assumptions underpinning the distinction between ‘authentic’ unmediated communication and supported communication that warrant further scrutiny. As Matthew Wolf-Meyer poignantly puts it we all depend on wider support systems in our capacities as speakers: ‘we are equally facilitated by those technologies which are largely invisible – language, institutions, society itself – which have been brought into being and control our experiences of self and world’ (2020, 183).

5. In using ‘non-speaking’ we are adopting the term as it is preferred by neurodiversity activists. For a clear defense of the ‘non-speaking’ (as opposed to non-verbal) label and why it does a better job at acknowledging that speaking comes in degrees, see https://withasmoothroundstone.tumblr.com/post/84597394825/about-nonverbal-and-nonspeaking

6. For another powerful approach to inclusive research, involving autistic people in ethics and social science research as co-researchers see Maaike Hermsen’s inaugural address https://www.han.nl/artikelen/2020/12/intrede-maaike-hermsen-wat-vinden-mensen-met-een-verstandelijke-beperking-zelf-belangrijk/#

7. There is an obvious link here between the AAC Field and the philosophical research area on Epistemic Injustice (Cf. Fricker 2007).

8. Some of these challenges can be mitigated at the level of the technology itself. For instance, most AAC devices are now able to support both word and sentence-based messaging, thus mitigating the trade-off between selecting a device that supports expressive depth or one that supports swiftness in communication. Beukelman and Mirenda (2013) also note that ‘the voice output options available in modern AAC devices’ have greatly improved, making the artificial voice ‘intelligible and natural enough to allow AAC use in a wide range of social contexts’ (20).

9. Cf Beukelman and Mirenda (2013)

10. Two other prominent theories of autism are weak central coherence (WCC) and executive function (EF). WWC sees a focus on parts and details at the expense of grasping wholes and overall context as the defining characteristic of autism. This theoretical perspective on autism signifies an important departure from ToMD. It has contributed to an appreciation of some of the remarkably detailed ways in which persons on the autism spectrum experience their environment (Cf. De Jaegher 2013; Happé and Frith 2020). While important insights from WCC (and also EF) can undoubtedly be gleamed for the purposes of AAC Tech development, we focus our discussion on ToMD because we are, in the first instance, focused on social cognition, social interaction and the promotion of reciprocal empathy; and ToMD is the theory of autism focused on precisely these phenomena. For a discussion of some of the pressing shortcomings of ToMD, WCC and EF, including Frith’s 2003 attempt to integrate these three theories into one account see De Jaegher (2013).

11. See also Morton Ann Gernsbacher (2006), which critiques parents, scientists, and educators for failing to see how they fail to engage in genuinely reciprocal interaction with autistic persons.

12. Even Autism Speaks, the most influential autism ‘activism’ organization that pushed for a cure for autism and has been labelled by some autistics as a hate group, has removed any mentioning of a cure from its website.

13. We want to thank an anonymous reviewer for drawing our attention to this study.

14. We are here rephrasing the earlier citation from Anderson (2013) who criticizes the view of autistic persons as ‘broken beings in need of repair.’

15. We can here see an analogy with reductive accounts of artistic expressions that attempt to translate music or visual art into linguistic, propositional meaning, thereby missing the point of what is the unique medium-specific language of music and visual art. The link between autistic forms of self-expression and aesthetic experience is made explicit below via De Jaegher’s observations (2013).

16. See Roeser and Willemsen (2004) for a more detailed discussion of empathy understood in this more genuine or elevated form.

17. Notable exceptions are McGeer (2009), Hacking (2009) & Dinishak (2016)

18. Note that the notion of ‘disorder’ is problematic from the perspective we take in this paper.

19. This includes explicit ethical reflection to avoid that any emotions and values of people are given equal weight, as people can obviously harbour problematic values and emotions (Cf. Steinert and Roeser 2020).

20. https://people.utwente.nl/jelle.vandijk?tab = research

Additional information

Funding

This work was supported by the This work is part of the research programme Ethics of Socially Disruptive Technologies, which is funded by the Gravitation programme of the Dutch Ministry of Education, Culture, and Science and the Netherlands Organization for Scientific Research (NWO) [024.004.031].

Notes on contributors

Janna van Grunsven

Janna van Grunsven is an assistant professor in TU Delft’s ethics and philosophy of technology section and a research fellow in the NWO-Gravitation research programme ‘The Ethics of Socially Disruptive Technologies’ (ESDT.nl). Van Grunsven’s work focuses primarily on issues in ethics and philosophy of technology, using insights from the field of embodied, embedded, extended and enactive cognition. She is particularly interested in how different theoretical accounts of the mind and different technological developments can have decisive ethical implications for how (autistic) persons are brought in view in a moral sense. Her work has appeared in journals such as Phenomenology and the Cognitive Sciences, the Journal of Consciousness Studies, Ethics and Information Technology, Techné: Research in Philosophy and Technology, and Adaptive Behavior.

Sabine Roeser

Prof. dr. Sabine Roeser is professor of ethics and head of the Department of Values, Technology and Innovation at TU Delft, Netherlands. Roeser holds degrees in fine arts, political science and philosophy. Her research covers theoretical, foundational topics concerning the nature of moral knowledge, intuitions, emotions, art, and evaluative aspects of risk, but also urgent and hotly debated public issues on which her theoretical research can shed new light, such as nuclear energy, climate change and public health issues. Roeser argues that moral emotions and intuitions as well as works of art can highlight important ethical issues. Roeser has led various research projects on these topics for which she received highly competitive grants from the Dutch Research Council (NWO), as well as the EU. She is vice-chair of the project ‘The Ethics of Socially Disruptive Technologies’ funded with a gravitation grant by NWO, the Dutch Ministry of Education and the participating universities, with a total budget of more than 26 Million Euro (2019–2029). She is a frequent speaker at academic and public events. Roeser served on various Dutch governmental advisory boards, such as concerning genetic modification and nuclear waste. Her publications include the monograph Risk, Technology, and Moral Emotions (Routledge 2018).