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

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.

Name thesis:degree_name

Master of Science (MSc)

Discipline thesis:degree_discipline

Education Graduate Program – Educational Psychology

Grantor dc:publisher.institution

Werklund School of Education

Year dc:date.issued

2022

Author dc:creator

• Lorentz, Brittany R.

Advisor dc:contributor.advisor

• McCrimmon, Adam

Committee members dc:contributor.committeemember

• Makarenko, Erica
• Ellard, John

• Autism Spectrum Disorder (ASD)
• diagnosis disclosure
• diagnosis nondisclosure
• diagnosis disclosure decision-making
• parents
• withheld
• qualitative research
• autism

Statement dc:rights

• University of Calgary graduate students retain copyright ownership and moral rights for their thesis. You may use this material in any way that is permitted by the Copyright Act or through licensing that has been assigned to the document. For uses that are not allowable under copyright legislation or licensing, you are required to seek permission.

Language dc:language.iso

eng

DOI

https://dx.doi.org/10.11575/PRISM/40191

OAI identifier oai:identifier

oai:ucalgary.scholaris.ca:1880/115169