TY - JOUR
T1 - The Human Spectrum: A Phenomenological Enquiry within Neurodiversity
AU - Murray, Dinah
AU - Milton, Damian
AU - Green, Jonathan
AU - Bervoets, Jo
N1 - Funding Information:
Jonathan Green is a UK NIHR Senior Investigator (NIHR NF-SI-0617-10168) and Trustee of the UK autism research charity Autistica. He reports funding from MRC, Wellcome, DfID, NIHR, Action for Medical Research, Rosetrees Trust, Autistica, Waterloo Foundation; Lecture Honoraria from World Association of Infant Mental Health, University of Haifa; Director’s fees from a not-for-profit PACT training company IMPACT (CiC 10902031). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR, or the Department of Health and Social Care.
Funding Information:
Jo Bervoets received funding from the European Research Council (ERC) under the European Union’s Horizon 2020 research and innovation programme (Grant Agreement No. 804881). The funder had no role in study design, collection, analysis, interpretation of data, or writing of the report.
Publisher Copyright:
© 2022
PY - 2022/9/30
Y1 - 2022/9/30
N2 - Introduction: 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. Method: 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. Results: 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. Conclusions: 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.
AB - Introduction: 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. Method: 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. Results: 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. Conclusions: 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.
UR - https://doi.org/10.1159/000526213
U2 - 10.1159/000526213
DO - 10.1159/000526213
M3 - Article
SN - 0254-4962
JO - Psychopathology
JF - Psychopathology
ER -