Autism

My work on autism is geared towards: 1) understanding the diverse ways autistic people make sense of their world, of others, and of each other, together with the people around them; and 2) to inviting better participation between autistic and non-autistic people, in mutual respect.*

  • De Jaegher H (2021) Seeing and inviting participation in autistic interactions. Transcultural Psychiatry.
    • This paper is about better seeing how autistic people do already participate in the interactions they engage in, and to invite better participation, also (especially) from non-autistic interaction partners.
  • Linguistic Bodies. The Continuity Between Life and Language (with Ezequiel Di Paolo and Elena Cuffari, 2018)
    • In chapter 10 of this book, we introduce two new hypotheses about autistic participation in languaging:
      • That people with autism over- or under-shoot in co-regulating utterances
      • That autistic people may not pick up all the threads of a conversation. For instance, they may pick up the pragmatic, but less easily the expressive threads of a conversation.
  • Diversity computing (with Sue Fletcher-Watson, Jelle van Dijk, Chris Frauenberger, Juan Ye, and Maurice Magnée, 2018)
    • In this article, a psychologist, two designers, a computer scientist, and me—philosopher— think about how to design technology to help invite better and more participation in social interactions with high diversity, including those involving autistic people.
  • Grasping intersubjectivity: an invitation to embody social interaction research (with Barbara Pieper, Daniel Clénin, and Thomas Fuchs, 2017)
    • Here, we present a phenomenological, hands-on method to unfold what happens in social interactions in terms of the experience of interacting. Applying this method to an interaction between 2 young friends who are both diagnosed with autism, we uncovered fine-grained aspects of their capacities for interacting with each other. This confirms conversation analysis research on the interactive capacities of people with autism.
  • We can work it out: An enactive look at cooperation. (with Valentina Fantasia and Alessandra Fasulo, 2014)

    • Here we discuss the capacities for cooperation of autistic people.
  • Embodiment and sense-making in autism (2013)
    • Here I present the enactive approach to autism. I argue that the different ways in which people with autism move, both individually and with others, affect their ways of understanding the world and of thinking. Just like everyone else, they are busy making sense of the world and of others—only sometimes they do so in specifically different ways to those who don’t have autism.

Most current theories see autism as a combination of social, communicative, and cognitive deficits, like in a hampered capacity to read other people’s minds. Lately, however, there is a growing awareness that autism is also characterized by different ways of perceiving and moving, as well as particular emotional-affective aspects. These, for a long time all but ignored in autism research, are receiving increasing attention. For instance, a recent special issue of Frontiers in Integrative Neuroscience focuses on movement and perception in autism. However, most theories to date, whether they deal with cognitive, communicative, or embodied aspects of autism, treat them in a piecemeal fashion – different sub-aspects of movement, emotion, perception, cognition are studied in isolation from each other.

What is needed is a framework that can coherently bring together the cognitive, social, embodied, affective, and experiential aspects of autism. Only this will help us understand why autistic people move, perceive, and understand the world in the way they do.

I believe participatory sense-making can be such a framework. Looking at autism through the lens of the enactive approach to cognition, we can use two of its main concepts: sense-making and participatory sense-making. Sense-making is the relation that lies at the core of all forms of cognition and affect. It links the cognizer’s self-organization and self-maintenance, embodiment, affect, and experience, and makes up the way in which she perceives and gives meaning to her world. Participatory sense-making describes how people make sense of each other and of the world together. With it, we investigate the inter-individual coordination of sense-making as it happens in various forms in and outside of social interactions.

An enactive approach conjectures that autistic people make sense in different ways than non-autistics do, both individually and socially, because they are differently embodied and situated. Support for this idea can be found in the study of perception and movement in autism. There is evidence for hypo- and hypersensitivity to sounds, difficulties with the timing, coordination, and integration of movements and perceptions, painfulness of certain stimuli, muscle tone differences, rigid posture, motor planning problems, etc. An enactive account allows to make precise connections between particular sensorimotor patterns and the way a person relates to their world in terms of what it means for them. On such a perspective, for instance, echolalia — previously treated as unwelcome, meaningless behaviour that should be eliminated — can be shown to have particular significance in the interactional context in which it occurs.

Embodiment, sense-making, and participatory sense-making continually co-determine each other over the course of development. If movement difficulties are core to autism, and movement is basic to how we make sense of the world and of others, then the way autistic people move is an essential part of how they make sense of their physical and social world, and should be understood as such. Therefore, contrary to traditional views, an enactive account sees both autistic and non-autistic sense-making as intrinsically valid and significant ways of dealing with the world. Autistic and non-autistic worlds may then be brought together, not by one-sided, normative adjustment of one to the other, but by understanding the differences and similarities between how they are constituted in perception and movement, and building bridges on this basis.

See also the special issue of Frontiers in Integrative Neuroscience: Autism: The Movement Perspective.

Some relevant papers in the special issue:

Becchio C & Castiello U (2012). Visuomotor resonance in autism spectrum disordersFrontiers in Integrative Neuroscience, 6(110)

Donnellan A, Hill DA & Leary MR (2013). Rethinking autism: implications of sensory and movement differences for understanding and supportFrontiers in Integrative Neuroscience, 6(124)

Marsh KL, Isenhower RW, Richardson MJ, Helt M, Verbalis AD, Schmidt RC & Fein D (2013). Autism and social disconnection in interpersonal rockingFrontiers in Integrative Neuroscience, 7(4)

Robledo J, Donnellan AM & Strandt-Conroy K (2012). An exploration of sensory and movement differences from the perspective of individuals with autismFrontiers in Integrative Neuroscience, 6(107)

*I use autistic people/people with autism interchangeably, as both ways of speaking are accepted by different people for different reasons (though “autistic people” seems to be preferred, at least by many people in English-speaking parts of the world). See for some discussion on this:
Sue Fletcher-Watson: Autistic person, or person with autism?
Judy Endow on Person-first language