The Conceptualisation of Autism by Parents and Clinicians: A Review of Empirical Studies with Clinical-Ethical Implications

The conceptualisation of Autism Spectrum Disorder (henceforth ASD) in stakeholders is rarely explicitly addressed in studies investigating how parents and clinicians view an ASD diagnosis. Biomedical research on ASD, often does not mention the participants' conceptualisation of ASD. As a result...

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Bibliographic Details
Published in:Ethical perspectives
Authors: Jacobs, Delphine (Author) ; Dierickx, Kris 1964- (Author) ; Hens, Christine (Author) ; Steyaert, Jean (Author)
Format: Electronic Article
Language:English
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Published: Peeters [2019]
In: Ethical perspectives
Standardized Subjects / Keyword chains:B Autism / Imagery / Parents / Physician / Psychologist
RelBib Classification:NCH Medical ethics
ZD Psychology
Online Access: Volltext (doi)
Description
Summary:The conceptualisation of Autism Spectrum Disorder (henceforth ASD) in stakeholders is rarely explicitly addressed in studies investigating how parents and clinicians view an ASD diagnosis. Biomedical research on ASD, often does not mention the participants' conceptualisation of ASD. As a result, it seems to be implicitly assumed that they share the common view on ASD, which is a view that considers it to be a medical disorder. This narrative review of empirical studies investigates conceptualisations of ASD in both parenting a child with an ASD diagnosis and clinical work involving an ASD diagnosis. Six databases were searched in July 2016 for studies investigating how parents and clinicians conceptualise ASD in countries in which the medical view on autism is dominant. Eighteen studies were subjected to Thematic Analysis. Three themes emerged from interpretatively summarising the studies' findings: (i) the conceptualisation of ASD; (ii) relational consequences; and (iii) psychological consequences. Seven subthemes constituted these 3 themes: the concept of normality, the concept of ASD as a medical disease, the concept of ASD as a psycho-socially influenced condition; the clinician-parent and parent-child relationship; and the identity of the parents, and of the child. This review affirms the value of a biopsychosocial understanding in the mental health clinic, also when dealing with ASD, as well as of a deliberative - rather than an informative - relationship between clinician and parents, substantiated by shared decision making. In order to establish such a deliberative clinician-parent relationship, we argue that it is of clinical and ethical importance that clinicians familiarise themselves with both their own and the parents' views on ASD, and are aware of the possible impact of their ASD diagnostic activity on both parenthood and the identity of parents and child. Based on this review's results on clinicians' and parents' conceptualisations of ASD, we argue for an ethically and clinically enriched relationship between clinician and parent/patient in neuropsychiatric health care beyond ASD.
ISSN:1783-1431
Contains:Enthalten in: Ethical perspectives
Persistent identifiers:DOI: 10.2143/EP.26.3.3287343