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"Receiving an Autism Spectrum Disorder diagnosis for a child: a longitudinal interview study on parents’ experiences" Delphine Jacobs (KU Leuven, Belgium)

Egenis seminar series

An Egenis, the Centre for the Study of Life Sciences seminar
Date28 January 2019
Time15:30 to 17:00
PlaceByrne House

In a longitudinal empirical study, I investigate how the autism concept is understood and experienced by parents. Parents who ask for an ASD (Autism Spectrum Disorder) diagnostic assessment for their child are interviewed at three different moments (Saldaña, 2003): before the ASD diagnostic assessment, right after the feedback session, and 12 months later.

Parents are increasingly valued as stakeholders in research, clinical practice and policy concerning ASD. It is not known, however, how parents asking for an ASD diagnostic assessment for their young child experience ASD and an ASD diagnosis. Indeed, the autism concept is characterised by change and heterogeneity throughout history (Verhoeff, 2013)and throughout cultures (Kim, 2012). Moreover, the lack of clear and applicable scientific findings may confuse parents whose child receives a diagnosis of ASD. Besides the challenge of interpreting inconclusive scientific results on the variable concept of ASD, parents have to try to integrate this challenging interpretation with the inputs from their clinician(s), the people they interact with, and popular and social media. It is not known how parents translate this mix of inputs on ASD into meaningful information.

I will present the results of the Interpretative Phenomenological Analysis (IPA) of the semi-structured parent interviews (Smith, Flowers, & Larkin, 2009). The analysis of the pre-assessment interviews reveals 5 chronological experiences of the parents in the pre-amble of their child’s diagnostic assessment. Toward the end of this chronological sequence, the assessment is found to raise ambiguous feelings in these parents. However, several positive implications of a diagnosis are anticipated, concerning both services and psycho-relational implications for parents and child.

In a preliminary ethical synthesis of these results and of our systematic literature review on the topic, I argue that parents anticipate several positive implications connected to a diagnosis of ASD. These advantages appear to be closely linked to the way mental services are distributed in our society, and to the way people in our society view and estimate parents, children and their behavioural problems. Thus, these positive implications are culturally and socially embedded, and because parents also fear negative implications of a diagnosis, the question arises whether giving a categorical diagnosis of a medical disorder is the most favourable way to deal with parents’ worries about the autism-like behaviours of their children.

Kim, H. U. (2012). Autism across Cultures: Rethinking Autism. Disability and Society, 27(4), 535–545.

Saldaña, J. (2003). Longitudinal Qualitative Research: Analyzing Change Through Time. AltaMira Press.

Smith, J. A., Flowers, P., & Larkin, M. (2009). Interpretative Phenomenological Analysis: Theory, Method and Research (Reprint edition). Los Angeles: SAGE Publications Ltd.

Verhoeff, B. (2013). Autism in flux: a history of the concept from Leo Kanner to DSM-5. History of Psychiatry, 24(4), 442–458. 


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