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

Abstract

Background Autism Spectrum Disorder (ASD) is a neurodevelopmental condition diagnosed through the assessment of early-onset difficulties in social communication and repetitive behaviours and restricted interests, leading to dysfunctioning in at least two contexts (American Psychiatric Association, 2013; Lai, Lombardo, & Baron-Cohen, 2014). Parents are pivotal in the care of children with a (presumed) ASD diagnosis. Indeed, in understanding and supporting children with a diagnosis, parents occupy a central position (Lord, Elsabbagh, Baird, & Veenstra-Vanderweele, 2018; Mintz, 2018). Moreover, it has been argued that understanding ASD begins with listening to, communicating with, and learning from autistic people and their families, and by understanding their experiences (Bakan, 2018; Cascio, 2018). Several studies investigated parents' experiences of their child having ASD and getting an ASD diagnosis. Previous research investigated diagnostic best practices for ASD, and made recommendations to improve the diagnostic assessment, the disclosure of a diagnosis, and parents' satisfaction after the feedback session. For example, studies have shown that a clinician's manner during the disclosure of the ASD diagnosis was important, and a follow-up appointment was advised to take place within weeks after the

Parents' Multi-layered Expectations when Requesting an Autism Spectrum Disorder Assessment of their Young Child: an In-Depth Interview Study

“…The pre-assessment experiences of parents followed a sequential course of, as a rst theme, parents and professionals noticing worrisome behaviours in the child; second, parents involving professionals as well as, in parallel, professionals addressing parents; third, ASD getting mentioned and a diagnostic ASD assessment being arranged; and fourth, parents having ambiguous feelings about the (consequences of the) possible ASD diagnosis. In this paper, we will describe the latter theme in detail (the 3 other themes are described in (38)), consisting of anticipated positive and negative implications of the diagnosis. The positive part of this theme consisted of two equally prominent subthemes: treatment-related and 'psychorelational' expectations (Additional le 2).…”

“…This method section is similar to the method section in the article concerning the longitudinal evolution in parents' experiences throughout three interviews (38).…”

“…In this manuscript, we present the rst part of this longitudinal study concerning the pre-assessment interviews. The longitudinal evolution from T1 to T2 to T3 is described in another article (38) which addresses the understanding and experiences of ASD throughout time by the included Flemish parents. This longitudinal study in turn is part of a broader research project which triangulates this study's ndings by investigating doctors' understanding and clinical experiences of an ASD diagnosis (Barbour, 2001; Carter, Bryant-Lukosius, DiCenso, Blythe, & Neville, 2014).…”

Parents’ multi-layered expectations when requesting an Autism Spectrum Disorder assessment of their young child: an in-depth interview study

“…This method section is similar to the method section in the article concerning the longitudinal evolution in parents' experiences throughout three interviews [39].…”

“…In this manuscript, we present the first part of this longitudinal study concerning the pre-assessment interviews. The longitudinal evolution from T1 to T2 to T3 is described in another article [39] which addresses the understanding and experiences of ASD throughout time by the included Flemish parents. This longitudinal study in turn is part of a broader research project which triangulates this study's findings by investigating doctors' understanding and clinical experiences of an ASD diagnosis [40][41][42][43].…”