The Human Spectrum: A Phenomenological Enquiry within Neurodiversity

Abstract

<b><i>Introduction:</i></b> Autism has typically been characterized by its external manifestations rather than experienced phenomenology, with consequent impacts on both research and practice. There have recently been increasing calls for more phenomenological enquiry in autism, but little actual work reported. <b><i>Method:</i></b> A shared participatory phenomenological self-investigation was conducted, by the four authors, of lived experience across the autistic/non-autistic divide. The sample size was chosen as necessary for the feasibility and acceptability to participants of such work in this context. Roles of “researcher” and “interviewee” were purposefully alternated between participants to establish trust and reciprocity. Initial phenomenological reduction or bracketing was applied to the description and recording of each participant’s intimate lived experience in a number of key domains across social relationships, the physical environment, development, and in adult life. These experiences were shared within dialogue to open them to investigation and questioning from the others, with alternating interviewer and respondent roles. A third step synthesized these shared observations across individuals into themes of continuity and difference. <b><i>Results:</i></b> A number of emergent themes, such as the need for trust and reliability, and the impact of context on regulation of emotion, sociability, and empathy, showed striking commonalities between all participants. Other themes, such as primary sensory experience and social joining, pointed up more clear differences between autism and non-autism in development and the adult world. Themes of interest-focus and attention were marked by both commonalities and difference. <b><i>Conclusions:</i></b> This shared phenomenological method was taken as a first step within a new area of active investigation in autistic phenomenology. It proved successful in eliciting detailed information on self-experience. The results suggested hypotheses for a new understanding of autism within the wider “human” spectrum of experience; for instance, the common basic need for trust and social connection but striking differences in sensory experience. It suggested that some characteristics long thought intrinsic to autism, such as social mis-perception and reduced empathy, may be alternatively understood as state-dependent outcomes contingent on specific contexts and interactions. Implications are suggested for testing in further research, developmental theory, and intervention practice.

Debate: Neurodiversity, autism and healthcare

“…In addition to the large literature within the autistic and ND community on lived‐experience, interest is growing in developing a more formal autistic phenomenology of this kind (Nilsson et al., 2019). Three autistic colleagues and myself recently published a first step paper on this (Murray, Milton, Green, & Bervoets, 2023), exploring an in‐depth phenomenological approach across the autism/non‐autism divide. The results of this were intriguing.…”

School Distress in UK school children: A story dominated by neurodivergence and unmet needs

“…One undisputed aspect of the autistic lived experience is differences in sensory processing (36), with sensory processing differences believed to occur in as many as 90% of autistic individuals (37,38).…”

“…However, contemporary research and autistic scholars argue that a paradigm shift away from a deficit model of autism is needed and a more nuanced understanding is necessary; one that situates autistic communication differences within a wider social context and considers communication breakdowns as a consequence of differing perspectives between autistic and non-autistic individuals (34, 35). One undisputed aspect of the autistic lived experience is differences in sensory processing (36), with sensory processing differences believed to occur in as many as 90% of autistic individuals (37, 38).…”

Debate: Responses to commentaries – neurodiversity, autism and healthcare

“…But, accepting Mottron and Gagnon's point on the often distinctive patterns of perceptual orientation and ability in neurodiversity, their theory of a social/non‐social ‘bifurcation’ is more binary than I would understand it and I think underplays the continuing interplay between ‘social’ and ‘non‐social’ in all development. As well as an awareness of difference, our own work and others' in phenomenology (Murray et al., 2023; Williams, Gleeson, & Jones, 2019) have highlighted the equivalent value for autistic and neurodivergent people – as anyone – of acceptance, understanding, trust and relationship. For instance, our intervention model in PACT and iBASIS aims to create a more neurodiversity‐adapted early environment for infants and children, using video‐feedback work with parents to help them attend to and understand their neurodiverse child's verbal and non‐verbal communication intent and attune their parental dyadic responses.…”

“…I referred to this in my paper with the term ‘Sensorium’ as indicating a fundamental quality of neurodiverse development, on which there is now an emerging literature, with, for instance, evidence of differences in auditory and visual perceptual organisation extending back into the first year. Later in development, autistic colleagues and I explored this in our own phenomenology study (Murray et al., 2023). And yes, there are important transactions here too – in the way that autistic people will wish to adjust their own environments to make them more manageable (something that can illuminate some behaviours), and in the increasing awareness of the value of adapting physical environments for well‐being, whether through ‘sensory diets’ or sensory management in everyday life, or adapted public or office spaces for older individuals.…”