The spiral of self-identification of autism. understanding self-identification of autism through firsthand experiences

Sandland, Barbara ORCID: 0000-0002-2644-6436 (2022). The spiral of self-identification of autism. understanding self-identification of autism through firsthand experiences. University of Birmingham. Ph.D.

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The following thesis uses a qualitative primacy, sequential mixed-methods approach, employing the principles of participatory research, to explore the significantly under researched phenomenon of self-identification of autism. Evidence is gathered through semi-structured interviews and an online survey. These are reinforced with autistic narratives, both book based and via online blogs. As such, they provide a unique element to the exploration of available literature and reinforce the data collected through this research. In total, one hundred and thirty-five individuals participated in this study, spanning all adult age ranges, seven genders, nine ethnicities, eleven religions and twelve countries.

This study is significant, as it shows there is a sizable population of people that self-identify as autistic and that they have more negative life experiences than their diagnosed counterparts. Self-identification was seen as a process of claiming back an identity, from the deviant one placed upon them by others, or the ‘self’ presented through adaptive morphing undertaken as a security mechanism driven by fear of negative attention. The process of self-identification is a modern phenomenon facilitated by the growth of social media and the global community. Importantly, the data indicates that regardless of diagnosis, the autistic identity cannot be built in isolation.

The experiences shared provide clear evidence that because the individual’s journey begins with being labelled as deviant, both externally and internally, the autistic identities are reduced to a politicalised static identity, as the need to validate themselves from the perspectives of doubt and prejudice of others becomes more important than embracing the plurality and fluidity of their autism. Both the necessity of adaptive morphing and then politicalising their autistic identity has long term implications on the individual’s mental health and sense of self. The results of this research significantly indicate that this often results in a diagnosis being sought as a means of biocertification, more for the benefit of others than the individual.

The ‘spiral of self-identification of autism’ is developed to represent the way in which the individual is trapped in a vicious cycle, unable to effectively facilitate the autistic identities into their nexus of identities, which has a significant impact on their long term, mental well-being. The experiences shared through this research indicate that the autistic individual is often dominated by the powers of others, which the ‘spiral of self-identification’ seeks to demonstrate. It is through discourse that power can be challenged, and therefore this thesis has enabled a discourse, and in turn has provided recommendations for change, to break the spiral and enable the autistic individual to hold their own power.

Recommendations are given to changes required in the way society values diversity, with a specific focus on reducing the ‘them and us’ atmosphere that the medical model, social model and neurodiversity continues to promote. Changes to the education system is proposed, to move away from the ‘factory model’ of education, as this is where the participants reported significant trauma. An urgent call for action is also presented to provide much needed support for those seeking diagnosis or newly diagnosed, to enable them to understand the autistic identities, build positive peer-to-peers relationships and support structures, which in turn would reduce significant mental health challenges.

Type of Work: Thesis (Doctorates > Ph.D.)
Award Type: Doctorates > Ph.D.
Licence: All rights reserved
College/Faculty: Colleges (2008 onwards) > College of Social Sciences
School or Department: School of Education, Department of Disability, Inclusion and Special Needs
Funders: None/not applicable
Subjects: H Social Sciences > HN Social history and conditions. Social problems. Social reform
H Social Sciences > HT Communities. Classes. Races
L Education > LC Special aspects of education


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