Research

To enquire about taking part in this research or for more information, please send an email to katrine@naturalneurodiversity.com. Thank you

Research Objectives

This research project aims to qualitatively explore the lived experiences and impact of late-diagnosis/identification in autistic women and consider the potential positive impact of a connection with the natural environment. The diagnostic structure of and common cultural perceptions of Autism Spectrum Disorder/Autism Spectrum Condition (ASD is the term described in the biomedical DSM-5, ASC is a term more widely accepted within the autistic community) has been angled towards the male perspective and there has been a tendency towards negating the female experience, resulting in later diagnosis and fewer support structures. Recent research has considered that autism can present differently in women.

A connection with the natural environment has the potential for positive impact, particularly when going through a period of profound shift in personal narrative perspective. An example of this type of life-changing experience is the late-stage identification/diagnosis of autistic women.

The research project aims to:

1. Identify if a late-stage autism diagnosis creates a liminal experience of narrative re-alignment and shift in personal history and if so, how does this manifest itself?
2. Investigate how this phenomenological subjective experience may contrast with current diagnostic and common cultural perceptions of autism.
3. Evaluate the potential role of connections with a natural environment and compare the potential impact of this as strategies for managing the impact of autistic traits and self-acceptance.

The dissertation will review how the cultural understandings of autism may be different to the personal experience and how this changes autistic women’s understanding of their own life history. The project explores an understanding of phenomenology (individual experience), relativism and a search for personal discourse/agency.

Methodology

Interviews – video, audio or written – will be the primary ethnographic method to explore and connect with the personal, lived experience of participants. The format will explore information around the time of the diagnosis/discovery with potential scope to provide life history information if suitable. There will be the opportunity for the participants to narrate their own history and how their autistic traits and the experience has potentially re-aligned their perspectives. The research will take place in a virtual format, due to the Covid-19 restrictions.

Literature reviews will include information from published academic papers, books, library resources, public access official documentations, research data and individual online resources including blogs, articles, podcasts and articles. This will enable me to compare and contrast the lived experience with the common perception of these difficulties and the benefit of natural connectivity. 

One aim of the project is to expand collaboration, increase awareness and further therapeutic understanding for this neurodiverse group and practitioners supporting them. As such, all findings will be presented to all participants and efforts will be made to continue support of this goal. 

Ethics

The research will be based on participant confidentiality and anonymity, no personal details will be recorded, and participants will be allocated a pseudonym. Participation is entirely voluntary and that all participants can change their minds and decide not to continue. Quoted research material will not be personally attributed. 

The project’s primary ethical areas of concern are complete transparency and communication. The project will involve interviews in video, audio or written form with adult women who have identified as autistics after the age of 25. The research will include interviews of both self-diagnosed and officially diagnosed women to evaluate the experiences of both groups.

All participants will be presented with full prior information on the project, methodology, aims and expectations, verbal consent is acceptable and is revocable at any time. Autism is a spectrum condition, and as such can’t be considered a linear disorder with specific requirements for accommodations. There is a likelihood that different participants may require different accommodations.

A risk of myself and the participants of contracting Covid-19 will be mitigated by conducting the fieldwork virtually. A written transcript of participants personal contribution with the possibility of withdrawing information.

Ethical issues that may arise include the research process impacting mental health, such as anxiety. I will ask trained specialists in autism support organisations for the most suitable response and interaction if such issues, such as mental triggers, should arise. These will be included in the in-depth risk assessment prior to the project commencement. The project does not require formal permission from local or national authorities. 

Deliverables

• MA in Environmental Anthropology Dissertation -15,000 words.
• A copy of the dissertation will be provided to the participants for their free use.
• Potential inclusion in the University of Kent’s UoKA support autism spectrum network. 
• Potential for a publishable paper based on the research material. 
• Potential expansion of research area into a PhD project.

Significance/impact

This project aims to give voice to the lived experience of autistic women. It utilises anthropological and ethnographic research methodology, journalistic analysis and scientific data collection to improve neurodiversity understanding, human requirement for natural connections and collaboration between organisations and support groups.

The project aligns with anthropological environmental connections and natural therapies as well as phenomenology and the search for personal discourse/agency. This provides the scope for a detailed analysis of the lived experience and a deeper understanding of potential frameworks that may provide more sustainable support mechanisms.  Though this particular research question is linked to a very particular segment of neurodiversity, the misalignment between the female experience, the diagnostic assessment process, minimal support frameworks and the lack of appreciation of natural connection as a therapeutic support tool are applicable to other neurodivergent communities.  

Existing scholarship

Theoretically, this paper draws on the disciplines of social anthropology, environmental anthropology, eco-psychology and social psychology to explore the topics of neurodiversity, liminality in identity, reclaiming of agency and connection with a natural environment. 

Within anthropology, the cultural challenges of accommodating neurological differences and cognitive perceptions have been explored in relation to phenomenological anthropology (Atran, 2012; Bloch, 2018; Decotau, 2017; Lawlor et al, 2017; Hull et al). This focus considers the ways in which meanings become and are reality to the people themselves; how meanings appear to them and coincide with the practical everyday world in which one exists (Solomon, 2010). 

My research will expand this individual neurodivergent lived experience to consider the therapeutic and wellbeing connection with the natural environment (Sharma et al, 2018; Russell et al, 2020; Torng, 2013). These academic descriptions of therapeutic research lie within the anthropological explorations both of the relationship connected to nature as a cultural signifier (Carrier and West, 2009) and of identity in relation to natural environments (Clayton and Opotow, 2003; Hinds and Sparks, 2008/2009; Rubenstein, 1990). 

These academic papers will be related to contemporary exploration of sources both within and outside academia of a natural connection in relation to identity and specifically neurodivergence. Forms of natural interaction have been considered to positively influence psychological stress and provide cognitive rejuvenation (Selhub, 2012). The qualitative research of the project will explore the eco-psychological viewpoint on the impact of mindful nature interaction from a narrative perspective (Vakoch & Castrillón, 2014).

The research will review the underlying topic of female vs. male ASC, late-stage identification and the bias of both cultural understanding of the condition and the diagnostic process. My qualitative research will be underpinned and considered in relation to the academic exploration of these aspects. This includes the gender coherence in ASC and challenges to female autism identification, review of adult experiences of ASC and the liminal experiences of receiving a late diagnosis/self-identifying.

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For suggested Academic References in relation to this research project, please see: https://naturalneurodiversity.com/academic-references/

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To enquire about taking part in this research or for more information, please send an email to katrine@naturalneurodiversity.com. Thank you

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