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Parents’ views and experiences of the autism spectrum disorder diagnosis of their young child: a longitudinal interview study

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Abstract

Parents are valuable stakeholders in research, clinical practice and policy development concerning autism spectrum disorder (ASD). Little is known, however, about how parents view and experience an ASD diagnosis. We investigated the evolution of parents’ views and experiences of the ASD diagnosis before, right after and 12 months after their child was diagnosed. Seventeen Flemish parents waiting for their young child’s diagnostic ASD assessment participated in a longitudinal study consisting of three in-depth interviews. They described their views and experiences concerning their child’s ASD diagnosis at three separate moments: (T1) prior to a diagnostic ASD assessment; (T2) immediately after their final feedback session at the end of the assessment; and (T3) 12 months later. Interviews were digitally recorded, transcribed and analysed in Nvivo 11 according to the procedures of interpretative phenomenological analysis. We extracted three themes from the interview material throughout the parental journey: (T1) expecting certainty and exculpation; (T2) vulnerabilisation of the child; and (T3) pragmatic attitude and some disappointment. At T3, the parents overall had come to value the diagnosis because of two reasons: they were satisfied with their child’s entitlement to ASD-related support at school, and with the diagnosis’ impact on the child’s relationships with parents and teachers. Many parents experienced their child with an ASD diagnosis as vulnerable, and themselves as acutely responsible for his development and future. Our findings may lead to a higher satisfaction with the clinical trajectory in both clinician and parents by inspiring a conversation between them about parents’ evolving views, hopes and concerns related to their child’s ASD diagnosis.

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Notes

  1. Sib + parents often had already experienced these same pragmatic benefits of the diagnosis with their older child with an ASD diagnosis.

  2. This was the case for both Sib + and Sib − parents because when Sib + parents talked about this evolution they conflated their experiences with both the concerned child and their older child(ren) with an ASD diagnosis.

  3. ASD is often viewed as a disability (Baron-Cohen 2002).

  4. Parents’ ‘backward-looking’ responsibility, consisting of accountability and blameworthiness, was replaced by a ‘forward-looking’ responsibility, “that of seeing to it that a certain state of affairs obtain” (Goodin in [67], p. 37), in this case for taking care of the child’s vulnerability.

Abbreviations

ADHD:

Attention deficit and hyperactivity disorder

ASD:

Autism spectrum disorder

DSM:

Diagnostic and statistical manual of mental disorders

ID:

Intellectual disability

IPA:

Interpretative phenomenological analysis

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Acknowledgements

We thank the interviewed parents for their time and for openly sharing their experiences.

Funding

D.J. received funding from the Leuven University Fund, grant ‘Opening the future’. K.H. received funding from the European Research Council (ERC) under the European Union’s Horizon 2020 research and innovation programme (grant agreement number 804881).

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Correspondence to Delphine Jacobs.

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The authors assert that all procedures contributing to this work comply with the Helsinki Declaration of 1975, as revised in 2008. All procedures involving human subjects were approved by the Ethics Committee of the University Hospitals Leuven (Belgian Registration Number B322201731147).

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Jacobs, D., Steyaert, J., Dierickx, K. et al. Parents’ views and experiences of the autism spectrum disorder diagnosis of their young child: a longitudinal interview study. Eur Child Adolesc Psychiatry 29, 1143–1154 (2020). https://doi.org/10.1007/s00787-019-01431-4

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