Knowing Me, Knowing You… An autoethnographic perspective on autism research from the inside out
Introduction
Researchers immerse themselves in their research, living and breathing it, reading and writing, dancing in the tensions and pulling at threads, always conscious that a distance must be maintained. But what if the researcher’s identity resonates with the research? What if as the researcher, lived experience aligns closely with the focus of the study? And what if, in occupying the role of researcher, parts of the self also become a part of the research?
In this paper, I explore this proximity through an autoethnographic lens, tracing the threads where lived experience and research are inseparably linked. I am a late-diagnosed neurodivergent woman, living with Multiple Sclerosis (MS), and I inhabit the role of both lecturer and researcher. Some time ago in the final throes of my doctoral thesis, I made the decision to do another Masters, to fill the void that I knew the end of my doctorate would bring. For this Masters I decided to conduct a phenomenological study focusing on the lived experiences of autistic academics working in Autism Friendly Universities, while simultaneously navigating the same spaces myself. My lived experience overlapped with my professional life, the boundaries between the two were at times blurred but not blended, they were co-constituted in ways that allowed a particularly nuanced insight. During the research process, I walked the line of ensuring that I remained reflexive and accountable in my practice as a researcher, conscious at all times of my identity and of how my interpretations may be perceived by those on the outside looking in. This paper examines the consequences of conducting a phenomenological study in one’s own backyard, so to speak.
Methodology
Ethics is a significant element of the research playbook and significant focus is placed on remaining apart from the research. However, it is not always possible to be entirely separate from the research when there is an alignment of identity; my body, my history, my experience and the third level space in which I existed all folded into the questions I was asking and the patterns that I noticed in the data. My proximity to the topic brought clarity that may have been missed had I been neuronormative (whatever that might be). It must however be noted that these moments of clarity also brought up some tensions between insight and interpretation, begging the question: what is lived and what is analysed?
Interpretative Phenomenological Analysis (IPA) was used to analyse the data in the study. IPA is concerned with making meaning of lived experience. The researcher is immersed in the data as they engage in sustained interpretation of the participant’s accounts. Meaning is made and shaped through interpretation. Lived experience in this approach is at the centre of knowledge production, the researcher must be conscious of their interpretative role in engaging with the participant’s meaning making of their experiences. Reflexivity is of significant importance in this approach. There remains an assumption that a degree of experiential distance between the researcher and the research must exist, this positions shared identity and experience as a source of potential bias to be managed rather than something that can be harnessed for good. In autism research this assumption is increasingly difficult to sustain as more neurodivergent researchers undertake research in the very community to which they themselves belong. The part that remains somewhat underexplored is what this proximity does to the research process, and how it shapes interpretation, ethics and the way in which knowledge is created.
IPA is concerned with how people make sense of their lived experiences, and with how this meaning-making is then interpreted by the researcher. The double hermeneutic names this relationship, but it does not tidy it up for those of us with complex identities. Meaning is shaped through the encounter between the participant and the researcher. IPA’s commitment to ideography means that the researcher resists abstraction and extraction, instead immersing themselves in the data in each individual account before moving outward to the whole. In this process bracketing is considered a way of managing the researcher’s presence in this process, yet this at times proves aspirational. In situations where the researcher’s identity and experiences align with those of the participants, setting oneself aside is more about being conscious and aware of one’s own history, experiences, identity and assumptions and how these may move in and out of the analytic frame.
The intention of this paper is to treat the researcher’s situated experiences as consequential from an interpretative perspective, and therefore open to scrutiny. The autoethnographic material generated during the study included reflexive notes written during data collection and analysis, noting of physical and emotional responses to interviews and transcripts, and decisions made (and indeed revisited) during coding. These materials are written from a neurodivergent and disabled standpoint, with an understanding that the researchers’ complex identity in some way created the conditions under which knowledge was produced. The next section will explore some of the knowledge produced.
Lived Experiences
During data collection some participants spoke openly about the precarity of their professional futures. One stated that because they are autistic, I will never get a promotion. Others spoke about being anxious about making mistakes in the workplace while on a fixed term contract, of being judged and of being made visible in ways that might mark them as different from their academic peers. There was a fear, not unfounded, that to be known as autistic within a workplace where neurodivergence is not considered normative resulted in being made vulnerable by the environment and experiencing more barriers to progression than non-autistic colleagues.
Participants spoke about the disbelief they were met with when they disclosed their autistic identity, are you sure? You don’t seem autistic. The tension was palpable in their words at times as they spoke about trying to ascertain who might accept them and who might not. There was evidence of the quiet, careful vigilance in what they chose to disclose and to whom and what they held back in relation to their identity. I recognised the exhaustion of being so very hypervigilant and how it shapes interactions, decisions and attempts to belong.
Most participants felt like they did not belong in their workplaces, with one participant stating, I don’t belong here, I’ve never felt like I belonged anywhere. In my notes for this interview and on my notes on the transcript, I have written my emotional reaction in the moment, this is so upsetting; I know this feeling. I’ve also written the participant's physical reaction, head downcast, wringing hands, voice low and resolute. The feelings of inadequacy came through clearly in the interviews, with some participants stating that their peers were already so much better than them. Several participants described experiences of bullying and exclusion, describing the difficulties of navigating a departmental culture which was overtly or implicitly unsafe.
In listening and analysing, I was unable to extricate myself from my own positionality. My professional life exists within the same institutional boundaries; I have navigated those uncertainties, I understand the caution in relation to disclosure, the need to constantly watch for what is permissible and what will result in being viewed as less than legitimate. I listened to the participants intently, paying attention to what was said, the hesitations, the shifts in emphasis, the silences that spoke of caution. I was hyper aware of my own interpretative decisions, knowing that they were shaped by my experiences as I struggled with the familiarity and difference, the searing empathy coupled with the need for distance.
The alignment of experience, while generative and rich, carried significant weight. Being entrusted with the experiences of participants whose experiences were so closely related to my own was far from abstract; it influenced every interpretative decision that I made. I wanted to present their narratives, their experiences without overlaying my own stories. I wanted the experiences of the participants to be visible and to hold their uncertainties while tracing its meaning within the professional and cultural ground we shared. The closeness sharpened my insights, but it also risked assumption, and I had to always keep this in mind, remaining reflexive and committed to authenticity always.
Conclusion
Reflecting on this study from within my own experience, I can clearly see that the research and the researcher cannot be fully separated. The participants narratives in relation to disclosure of identity, exclusion and professional vulnerability resonated with my own experiences as a neurodivergent academic. The alignment of my own experiences offered insight, but also placed extra emphasis on reflexivity. My interpretations were perhaps deeper, but I had to pay careful attention to where lines began to blur.
Participants spoke of their experiences, the fragile work of being visible in spaces not created for neurotypes that exist outside the norm. Their experiences resonated with me, making me all the more aware that insight does not always come from distance but from engaging with the very tension that proximity to the topic can bring. Representation is never straightforward.
This paper has argued that research in a space inhabited by the researcher cannot fully divorce the method from the researcher’s positionality. Knowledge is rarely neutral, and it remains ever incomplete. The creation of rich knowledge comes from the intersections between the people who live it and those who seek to understand it.
