The Experience of Receiving a Late Diagnosis for Autistic Young Adults
Date
2021-09
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Abstract
Autism spectrum disorder (ASD) is a neurodevelopmental disorder which presents with deficits in social communication and restricted, repetitive patterns of behaviour. ASD is estimated to occur in 1 in 59 individuals, with the average age at diagnosis being 53 months. Yet, many individuals are missed as children and diagnosed later in life. As a result, adults are now diagnosed more often than youth and/or children. Despite this, little is known about the experience of receiving a late ASD diagnosis. A qualitative inquiry was conducted to better understand the experience of diagnosis and what it is like to be undiagnosed vs. diagnosed with ASD. Eight participants were interviewed and their responses analyzed using interpretive phenomenological analysis. Results identified 29 themes across three different levels. Level 1 themes represented pre-diagnosis and post-diagnosis timeframes and were broken down into Level 2 themes. The pre-diagnosis Level 2 themes were circumstances leading to diagnosis, hidden diagnosis, alternative identities, and potential negative outcomes of not having an ASD diagnosis while the post-diagnosis Level 2 themes were settling into diagnosis, potential benefits of receiving an ASD diagnosis, potential negative outcomes of an ASD diagnosis, and desires. Some Level 2 themes were further broken into more detailed Level 3 themes which communicated the nuances in experiences for each of the participants.
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Keywords
autism spectrum disorder (ASD), diagnosis, qualitative research, adults
Citation
Schembri-Mutch, T. (2021). The experience of receiving a late diagnosis for autistic young adults (Doctoral thesis, University of Calgary, Calgary, Canada). Retrieved from https://prism.ucalgary.ca.