Marsden, Sarah and Kaley, Alex and Eastham, Rachael (2023) The Truth Hurts : An Online Qualitative Study on Self-Harm on the Autism Spectrum. PhD thesis, Lancaster University.
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Abstract
Autistic people experience a higher prevalence of self-harming behaviours than the general population. Due to a combination of self-harm being a taboo subject, the isolation created by the intersection of multiple marginalised identities, and a belief held by professionals that many mental health related problems are inherently part of autism and therefore immune to treatment or help; many autistic people are left unable to access the help and support that they desperately need. This thesis uses an online qualitative methodology to explore this under-researched phenomenon, thematically analysing online forum posts from non-intellectually impaired autistic adults seeking help and support from each other; to determine what forms of self-harm are described, what precipitates the self-harm, and how forum users help each other. Qualitative methodologies are under-represented in autism research, due to the dominance of psychology and neuroscience, the historical representation of autism by third parties such as parents, carers and health care professionals, and the belief that autistic people are unable to truthfully present their own narrative. Using the neurodiversity paradigm as a fresh lens through which to view the subject of autistic self-harming behaviours, I give the adult autistic online community a voice through my insider-researcher status. I discover that self-harming behaviours are nuanced and complex, highlighting the connections between sensory overload, meltdowns, and impulsive repetitive blunt trauma seen as autistic self-injurious behaviours (SIBS); as well as the interactions between anxiety, depression and more controlled self-harming, seen as classic nonsuicidal self-injury. These two phenomena are not mutually exclusive, as they can cooccur, and one can precipitate the other. SIBs are found to be not just the domain of the intellectually impaired child, but are a taboo activity for an autistic adult without intellectual disability, creating shame and self-hatred. Other repetitive behaviours such as stimming are also revealed as socially unacceptable harmful behaviours used to reduce the build-up of sensory overload and meltdown SIBs, and I use the neurodiversity paradigm to argue why these behaviours should be left alone and accepted more by society. I discuss my findings in relation to theories such as the minority-stress framework, the double empathy theory, intersectionality, and social identity theory, to reconceptualise the issues raised as a wider societal problem, and not just a burden of autism. I conclude with suggestions for improvement, including education of professionals and the public to increase awareness and acceptance, alongside provision of tailored support including written communication options for autistic people.