Peer-Reviewed Journal Details
Mandatory Fields
Roisin Finnegan*, Tim Trimble & Jonathan Egan
The Irish Journal Of Psychology
Irish parents' lived experience of learning about and adapting to their child's autistic spectrum disorder diagnosis and their process of telling their child about their diagnosis
In Press
Optional Fields
ASD, Parents, Diagnosis, IPA
Little is known about the lived experience of Irish parents in learning about and adapting to their child's diagnosis of autistic spectrum disorder (ASD) and the process of disclosing this diagnosis to their child. Semi-structured interviews were completed with seven Irish parents of children with an ASD diagnosis to gain an in-depth understanding of these experiences. An interpretative phenomenological analysis (IPA) revealed key themes affecting the process of adjusting to the diagnosis and communicating this diagnosis to their child, including difficulties obtaining a diagnosis and parents ambivalent feelings upon receiving a diagnosis; challenges accessing appropriate support and resources, and attempting to maintain a ‘normal' family life; and finally a feeling of needing to protect their child, the realisation that non-disclosure is a poor strategy in the longer term, and adapting communication style to facilitate their child's understanding of their diagnosis. The importance of the sensitivity and manner in which professionals involved in the diagnosis inform that the parents of the diagnosis cannot be underestimated. Despite guidelines having been developed in Ireland and the UK, ongoing audit of the fidelity of professionals in adhering to these guidelines needs to take place and become a part of service reviews with service user involvement being central to this. Parents also need to be facilitated to discuss the appropriate developmental timing of telling their child about their diagnosis and to explore their ambivalence about this process
Grant Details
Publication Themes
Applied Social Sciences and Public Policy, Biomedical Science and Engineering, Humanities in Context