The Concept of “Autism” in Parenthood and in the Clinic. an Empirical Investigation.

Poster Presentation
Saturday, May 12, 2018: 11:30 AM-1:30 PM
Hall Grote Zaal (de Doelen ICC Rotterdam)
D. Jacobs, Centre for Biomedical Ethics and Law, KU Leuven, Leuven, Belgium

The concept of autism is characterized by change and heterogeneity throughout history (Verhoeff, 2013) and throughout cultures (Kim, 2012). Moreover, it is unclear whether the research findings on ASD are translated into meaningful information for the clinic and for parents (and their children).


We aim at investigating the experiences of parents of getting an ASD diagnosis for their child, and the experiences of clinicians in using an ASD diagnosis. The final goal is to come to an ethical synthesis, grounded in the results of our empirical investigation, and in our systematic literature review on the topic.


In our empirical study, we investigate how the autism concept is understood and experienced by parents and physicians. Parents who ask an ASD (autism spectrum disorder) diagnostic assessment for their child are interviewed at three different moments (Saldaña, 2003). Physicians working with children with (a presumption of) ASD are interviewed once.


I will present the results of the Interpretative Phenomenological Analysis (IPA) of the clinician and parent interviews (Smith, Flowers, & Larkin, 2009).

A preliminary interpretation of these empirical results argues that the most common research view on ASD appears to be different from the interviewed physicians’ view.

Such a discussion secondly purports that the interviewed physicians and parents experience several advantages connected to a diagnosis of ASD. These advantages appear to be closely linked to the way our society is organized in distributing mental services, and to the way people in our society view and estimate children and parents.


Evidence-based medicine is not the only guiding principle for clinicians when dealing with ASD.

Besides, the experienced advantages of a diagnosis are culturally embedded, and when also possible disadvantages are considered, the question arises as to whether giving a categorical diagnosis of a medical disease is the most favorable way to deal with autism-like behaviors and worries, both for clinicians and for parents and 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.