The Elephant in the Room: The Lived Experience of Talking to Children with ASD about their Diagnosis

Smith-Demers, Amanda D.

The Elephant in the Room: The Lived Experience of Talking to Children with ASD about their Diagnosis

dc.contributor.advisor	McCrimmon, Adam W.
dc.contributor.advisor	Nicholas, David Bruce
dc.contributor.author	Smith-Demers, Amanda D.
dc.contributor.committeemember	Wilcox, Gabrielle
dc.contributor.committeemember	Drefs, Michelle A.
dc.contributor.committeemember	Badry, Dorothy Eleanor
dc.contributor.committeemember	Attwood, Tony
dc.date	2018-11
dc.date.accessioned	2018-07-03T14:57:54Z
dc.date.available	2018-07-03T14:57:54Z
dc.date.issued	2018-06-20
dc.description.abstract	Autism Spectrum Disorder (ASD) is a complex neurodevelopmental disorder encompassing a wide variety of cognitive, communicative, behavioural and social abilities. Given the increasing prevalence of ASD, both clinicians and researchers are increasingly required to provide enhanced supportive services throughout the entirety of the diagnostic process. While many researchers have investigated parental experiences surrounding assessment and diagnosis of ASD, the relative oversight of diagnosis disclosure to children is surprising. As such, the current study focused on the lived experience of parents as they explored their decision-making process about whether to, and if so how and when to inform children about their ASD diagnosis. This decision-making process was explored through the use of semi-structured interviews conducted with both parents who had disclosed (n = 20) and parents who had not disclosed (n = 20) an ASD diagnosis to their child. This study initially set out to compare and distinguish differences between participant groups; however, much of the process revealed by both groups could only be differentiated by where these groups were situated on the timeline of disclosure. Consistent with previous research, results revealed that disclosure is often a gradual process that changes and develops over time. While many reflections and themes were highlighted by parents, the process of considering disclosure and/or disclosing to a child was seen as a unique and situational experience for each family and child; thus, emphasizing the complexity of the disclosure process and the consideration of unique factors specific to each family. In sum, many parents underscored the benefits and importance of disclosure, while also highlighting the experience of fear and wonder throughout the decision-making process. Research and clinical implications of the findings are discussed, along with suggestions for future research.	en_US
dc.identifier.citation	Smith-Demers, A. D. (2018). The elephant in the room: The lived experience of talking to children with ASD about their diagnosis. (Doctoral thesis, University of Calgary, Calgary, Canada). Retrieved from https://prism.ucalgary.ca. doi:10.11575/PRISM/32049	en_US
dc.identifier.doi	http://dx.doi.org/10.11575/PRISM/32049
dc.identifier.uri	http://hdl.handle.net/1880/106827
dc.language.iso	eng
dc.publisher.faculty	Graduate Studies
dc.publisher.faculty	Werklund School of Education
dc.publisher.institution	University of Calgary	en
dc.publisher.place	Calgary	en
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.
dc.subject	Autism Spectrum Disorder
dc.subject	decision-making
dc.subject	Diagnosis
dc.subject	disclosure
dc.subject	non-disclosure
dc.subject	parents
dc.subject.classification	Educational Psychology	en_US
dc.title	The Elephant in the Room: The Lived Experience of Talking to Children with ASD about their Diagnosis
dc.type	doctoral thesis
thesis.degree.discipline	Applied Psychology
thesis.degree.grantor	University of Calgary
thesis.degree.name	Doctor of Philosophy (PhD)
ucalgary.item.requestcopy	true