Autism Spectrum Disorder diagnosis in young children: A clinical-ethical study on the experiences of parents and physicians.

After three quarters of a century of research and clinical experience, autism spectrum disorder (ASD) turns out to be surprisingly heterogeneous in its presentations, causes and cognitive mechanisms. In light of the miscellaneous nature of this diagnosis, it is unclear how the array of (predominantly “basic”) research findings on ASD is translated into information that is meaningful and valuable to parents and clinicians. Few studies are dedicated to detect the experiences of an ASD diagnosis of a child by parents and clinicians, or reflect from an ethical viewpoint on their personal perspectives.

My central aim is formulating ethical considerations concerning the clinical care related to ASD in young children. I answer three research questions: (1) What has previous empirical research ascertained about how the ASD diagnosis is understood and experienced by parents and clinicians in the international context? (2) How is an ASD diagnosis for a young child without a previously diagnosed disability understood and experienced by Flemish parents and physicians? (3) What are the clinical-ethical implications of how parents and physicians understand and view the ASD diagnosis in young children? This ethical reflection on the results of the empirical studies with parents and physicians leads to the formulation of clinical-ethical considerations towards both policy makers and clinicians concerning the clinical (mainly diagnostic) care related to ASD in young children.

My literature review showed that (1) both parents and clinicians may understand an ASD diagnosis in a pluralistic way (and parents evolved in their understanding in a temporal way throughout the child’s clinical trajectory, from mainly biomedical towards pluralistic); (2) parents and clinicians prefer a deliberative relation and communication between them over an informative or, certainly, a paternalistic type of relation; and (3) the experiential importance for parents and physicians of both treatment-related and ‘psycho-relational’ implications of an ASD diagnosis.

Many interviewed parents and physicians viewed the ASD diagnosis in a pragmatic way. Parents were queried longitudinally: before the start of the diagnostic ASD assessment, right after the feedback session at the end of the assessment, and 12 months later. Twelve months after their child got an ASD diagnosis, the interviewed parents mainly had come to value the ASD diagnosis for two reasons: the entitlements to school support and public services it ensured, and the fact that they and some others (like many teachers) adapted their interactions with the child because of the ASD diagnosis. The interviewed physicians from their side needed an ASD diagnosis to be useful in their clinical practice. They fitted their understanding of ASD in their personal clinical styles, and picked from the ‘textbook’ knowledge on ASD what worked for them, parents and child. 

In the ethical reflection, I argued for a collective responsibility towards raising children, and for incorporating the ‘personal utility’ of an ASD diagnosis into the communication between the clinician and parents.

Finally, I formulate 4 clinical-ethical considerations in relations to policy, and 5 in relation to the clinic. Towards policy makers, this study’s findings sustain an argument for continuity-in-person in the care trajectory, starting from parents’ request for help until the answer to this request. I also suggest that services do not need to be ASD-specific but suited for and adapted to each child with behavioural issues, with and without an ASD diagnosis. Towards clinicians, I argue for the expansion of the clinical model of shared decision making and person-centred medicine toward the diagnostic care concerning ASD in young children. I advance the use of not only a ‘treatment-oriented’ diagnosis but also a ‘request-oriented’ diagnosis -incorporating an open dialogue on parents’ views, hopes and concerns. Such a clinical communication strategy may lead to a better alignment between physician and parents, and a more satisfying clinical trajectory for both parties.