What Do You Mean I Have Autism? Perspectives of the Impact and Lived Experiences of Individuals on the Autism Spectrum Being Uninformed of Their Diagnosis
Date
2022-08-25
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Abstract
Autism (spectrum disorder) is a neurodevelopmental disorder characterized by a range of qualitative impairments in social communication across various settings as well as restricted, repetitive patterns of behaviours, interests, or activities. Many autistic individuals go through the diagnostic process while still a minor, with parents serving as translators of sharing the outcomes of the assessment with their child. Parents are often overwhelmed with contemplating whether to tell their child about the diagnosis as there are considerable stereotypes and stigma associated with the label of autism and parents often associate this when receiving the diagnosis from a clinician. Therefore, considerable time and thought go into the decision of whether to disclose the information to one’s child. The current study investigated the lived experiences of autistics who were not disclosed their autism diagnosis and remained uninformed for at least one year. A qualitative methodology was conducted to understand autistics’ perceptions, understanding, and opinions on nondisclosure of their autism diagnosis. Six participants took part in semi-structured interviews that were then analyzed utilizing interpretive phenomenogical analysis. Six group experience themes emerged from cross-case analysis of individual experiential themes. The findings of the study are discussed in context to existing literature and highlighting new knowledge as well as discussion of clinical and research implications and suggestions for future research.
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Keywords
Autism Spectrum Disorder (ASD), diagnosis disclosure, diagnosis nondisclosure, diagnosis disclosure decision-making, parents, withheld, qualitative research, autism
Citation
Lorentz, B. R. (2022). What do you mean I have autism? perspectives of the impact and lived experiences of individuals on the autism spectrum being uninformed of their diagnosis (Master's thesis, University of Calgary, Calgary, Canada). Retrieved from https://prism.ucalgary.ca.