The Elephant in the Room: The Lived Experience of Talking to Children with ASD about their Diagnosis
Date
2018-06-20
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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.
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Keywords
Autism Spectrum Disorder, decision-making, Diagnosis, disclosure, non-disclosure, parents
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