Observing Autism Through a Different Lens
What is autism? The term autism demarcates two very different polar positions. On the one hand, there is the medical definition of autism. On the other hand, there is the inner world of the individual person living with autism. There is obviously an experiential gap between these two different positions. The medical understanding of autism should primarily help people with autism lead more fulfilling lives in terms of diagnostic accuracy, and helping provide appropriate therapeutic services and support. Yet, the medical definition may also stigmatize and pathologize what may be just one end of the spectrum of human brain function in terms of neurodiversity. This blog analyzes the medical understanding of autism, as a means of reducing the gap between the medical understanding and the first-person experience of autism.
The 5th edition of the psychiatric Diagnostic and Statistical Manual of Mental Disorders (DSM-5) defines autism as a neurodevelopmental disorder, characterized by persistent deficits in social communication and social interaction as well as restricted, repetitive patterns of behavior starting from early childhood. The DSM-5 definition of autism has been highly influential in terms of facilitating the medical management of autism. Yet, this definition of autism, as any other definition, is not necessarily the “thing itself.” Moreover, the success of the medical definition of ASD overlies an inherent referential instability. As of yet, there are no clear biological markers for autism. As such, the DSM definition of autism is based solely on the observation of behaviors – which vary from individual to individual in the type and severity of behaviors.
Even though the DSM-5 definition of autism is based on careful participatory and open clinical observation its observational methodology is necessarily objectifying. It cannot capture the subjective experience of living with autism, nor can it explain the personal meaning of particular behaviors associated with autism. The DSM-5 categorizes behaviors associated with autism in terms of three distinct symptomatic domains: social communication, social interaction and repetitive behaviors. An alternative phenomenological conception of autism is required that adequately reflects the first-person experience of “autism worlds” experienced by different individuals. One phenomenological approach defines autism as a “generalized developmental disorder that occurs early in life due to an alteration in the neurobiological foundations of intercorporeality and intersubjectivity.”1 Lacking in individuals with autism is an implicit pre-reflective matrix, linking and integrating different experiential elements, such as affect, cognition, and perception, affording a stable sense of self and capacity for intersubjective relating.
This phenomenological conception does not necessarily require rejecting the DSM-5 definition of autism, but rather mining the three symptomatic domains for their phenomenological content. This approach would maintain the “typicality” of the term autism to refer to individuals with similar symptomatic behaviors, and still leave space for acknowledging the individual experience of autism. For example, most theoretical approaches to repetitive behaviors or stereotypies define them as free of intentionality or purpose. However, the phenomenological approach would consider the intentionality of a child’s movement patterns, including stereotypies – especially in terms of pre-reflective intentionality in relation to the child’s developing self. This focus on intentionality, perception and the developing self characterizes the phenomenological conception of autism. It also provides the linking thread between all three symptomatic domains. A child’s pre-reflective apperception of its embodied self in relation with the external world will have effects on the child’s ability for social interaction, communication and sensory-motoric behaviors. Individuals with autism are restricted in the fluid relation between their embodied selves and the external world.
What kind of open observational methodology can one as a clinician put into effect that is not simultaneously objectifying? First and foremost, to observe a child’s movements through the lens of its perceptual world, its Umwelt.2 This methodology derived from zoological observation applied to the autism arena, attempts to understand the structure of a child’s perceptual apparatus from within, with which he/she makes sense of and relates to the world. For example, a child’s repetitive stereotypical behaviors might be interpreted in terms of the child’s attempt to order the spatial-temporal elements of a chaotic external environment, or to regulate her emotional affect. Movement kinematics may also be examined in terms of what different qualities of movement, for example what psychoanalyst Judith Kestenberg describes as a movement’s shape, flow, tension and effort.3 These behaviors might also be analyzed in terms of neurological correlates of brain function connecting, for example, frontal cortex, limbic system and basal ganglia.
Important in this neuro-phenomenological observation methodology is to keep the subjective autistic world specific to each individual in the foreground. This is important because the behaviors of different children with autism represent different autism worlds that cannot be reduced into an objectifying analysis. This phenomenological approach also implies that autistic behaviors are not necessarily deficits or impairments to be corrected. Moreover, phenomenological observational and associated therapeutic modalities, exemplified by Feldenkrais and play provided at the SomaticWell Center, means that the intentionality behind phenomenological observation is to stimulate and support a child’s natural capacity for self-transformation, rather than to restrict possibilities for self-development through an objectifying lens.
1. Francesco Barale, Davide Broglia, Giulia Zelda De Vidovich, and Stefania Ucelli di Nemi, 2019. “The Life-World of Persons with Autism.” In Oxford Handbook of Phenomenological Psychopathology. Edited by Giovanni Stanghellini, Matthew Broome, Andrea Raballo, Anthony Vincent Fernandez, Paolo Fusar-Poli, and René Rosfort, University of Oxford Press. DOI: 10.1093/oxfordhb/9780198803157.013.104.
2. Jakob von Uexküll, J. 1957. “A stroll through the worlds of animals and men: a picture book of invisible worlds.” In Instinctive Behavior: The Development of a Modern Concept. Edited and translated by C. H. Schiller. International Universities Press, Inc.: 5–80.
3. Judith Kestenberg, 1975. Children and Parents: Psychoanalytic Studies in Development, New York: Jason Aronson.