The diagnosis of Autism spectrum disorder in young children: A clinical-ethical study of parents' and physicians' experiences

Goal

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 views and experiences of an ASD diagnosis of a child by parents and clinicians, and make an ethical reflection on their personal perspectives. An ethical reflection on the results of the empirical studies with parents and physicians lead to the formulation of clinical-ethical considerations towards both policy makers and clinicians concerning the diagnostic care related to ASD in young children.

Method

We conducted in-depth interviews on how parents and physicians view and experience a young child's ASD diagnosis. 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. The interviews were analysed in Nvivo 11 according to the guidelines of Interpretative Phenomenological Analysis.

Results

The interviewed parents and physicians addressed ‘psycho-relational’ implications of an ASD diagnosis as much as ‘treatment-oriented’ implications. The psycho-relational ‘exculpatory’ effect was particularly appreciated, which consists in both parents and child being able to exonerate themselves with regard to the child's unusual behavior towards both the parents and other adults. The interviewed parents and physicians often came to view the ASD diagnosis in a pragmatic way, in the light of its usefulness for child, parents, and to a lesser extent, professionals. 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 it ensured, and them and some others adapting 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, particularly to describe the child toward parents and teachers as “he wants to do what is expected from him but is not able to”, and to provide entitlements to adapted care. Clinicians expressed some doubts about the use of and need for a formal diagnosis. They preferred to establish a descriptive and treatment-oriented profile of the child, profile of which an ASD diagnosis was sometimes considered to be a useful part.

Discussion

Based on an ethical analysis and reflection, we formulate 4 clinical-ethical considerations in relations to policy, and 4 in relation to the clinic. Towards policy makers, this study's findings sustain an argument for continuity-in-person in the help trajectory, starting from parents’ request for help up to the answer to this request. We 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, we 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.

Conclusion

An ASD diagnosis in itself may be of limited help to parents and clinicians but can be of use if it is embedded in a request-oriented diagnostic process aimed at elaborating a treatment-oriented profile of the child. A clinical communication strategy incorporating an open dialogue on parents’ views, hopes and concerns may lead to a better alignment between physician and parents, and a more satisfying clinical trajectory for both.