Révélation par les parents du diagnostic de TSA à l’enfant : une revue systématique

Titre original en anglais : Parental Disclosure of ASD Diagnosis to the Child: A Systematic Review

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Smith, I. C., Edelstein, J., Cox, B. E., & White, S. W. (2018). Parental Disclosure of ASD Diagnosis to the Child: A Systematic Review. Evidence-Based Practice in Child and Adolescent Mental Health, 3(2), 98-105. https://doi.org/10.1080/23794925.2018.1435319

Date de publication: 02/02/2018 Ajout dans AutiHub: 08/08/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
4
Auteur·ices de la publication identifié·es comme autistes
1 / 4 (25,0 %)
  1. Isaac C. Smith
  2. Jeffrey Edelstein
  3. Bradley E. Cox *
  4. Susan W. White

Résumé

Malgré l’augmentation des taux de diagnostic du trouble du spectre de l’autisme (TSA) ces dernières années, la littérature examinant quand et comment les parents de jeunes récemment diagnostiqués leur révèlent leur diagnostic est rare. Compte tenu du nombre croissant de personnes nouvellement diagnostiquées, une exploration des effets de la révélation du diagnostic sur les enfants atteints de TSA est justifiée. Nous avons mené une revue systématique afin d’identifier les articles décrivant le processus de révélation d’un diagnostic de TSA du point de vue des enfants, des parents, ou des deux. La présente revue a identifié cinq articles rapportant des données qualitatives sur le processus de révélation. Dans l’ensemble des études, il a été constaté que la plupart des parents avaient révélé les diagnostics de TSA à leurs enfants avant l’adolescence, les enfants et les parents manifestant diverses réactions. Les préoccupations fréquemment identifiées par les enfants et les parents comprenaient le temps nécessaire pour assimiler l’impact émotionnel des diagnostics, le délai entre la réception par les parents des diagnostics de la part des cliniciens et la communication de ces diagnostics aux enfants, la crainte que l’étiquette TSA n’entraîne une stigmatisation, et le sentiment que les comportements ou symptômes passés d’une personne étaient bien expliqués par le nouveau diagnostic. L’identification de ces problèmes potentiels peut constituer une première étape pour orienter l’élaboration de lignes directrices de bonnes pratiques concernant la révélation par les parents des diagnostics de TSA aux jeunes, ainsi que de nouvelles recherches sur cette partie peu étudiée du processus diagnostique.

Despite increased rates of diagnosis of autism spectrum disorder (ASD) in recent years, literature examining when and how parents of newly diagnosed youth disclose their diagnosis to them is scarce. Given the increasing number of newly diagnosed individuals, an exploration of the effects of disclosure on children with ASD is warranted. We conducted a systematic review to identify articles describing the process of disclosing a diagnosis of ASD from the perspective of children, parents, or both. The current review identified five articles reporting qualitative data on the disclosure process. Across studies, most parents were found to have disclosed ASD diagnoses to their children by adolescence, with children and parents exhibiting a variety of reactions. Concerns frequently identified by children and parents included time taken to process the emotional impact of diagnoses, delay between parents receiving diagnoses from clinicians and delivery of those diagnoses to children, concern that the ASD label would result in stigmatization, and the sense that an individual’s past behaviors or symptoms were well explained by the new diagnosis. Identification of these potential problems may serve as an initial step to inform the development of best-practice guidelines for parental disclosure of ASD diagnoses to youth and further research on this understudied part of the diagnostic process.

Bibliographie citée par cette référence

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Vue d’ensemble de l’inclusion dans la bibliographie

Ces indicateurs décrivent la bibliographie citée importée pour cette publication. Les métriques de références citées utilisent le total des références citées comme dénominateur. Les métriques d’auteurices cité·es indiquent si elles utilisent toutes les occurrences d’auteurices cité·es ou seulement les occurrences rattachées à des auteurices déjà intégré·es à la base de données AutiHub. Ils utilisent les rattachements mis en cache entre les auteurices cité·es et les auteurices intégré·es à la base de données AutiHub. Dernier calcul : 16/08/2026 11:31.

Références citées
30
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
1 / 30 (3,3 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
1 / 90 (1,1 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 1 / 14 (7,1 %). Auteurices cité·es distinct·es identifié·es comme autistes : 1 / 88 (1,1 %).
Occurrences citées rattachées à la base AutiHub
14 / 90 (15,6 %)
Auteurices cité·es distinct·es rattaché·es : 13 / 88 (14,8 %)
Occurrences rattachées, non identifiées comme autistes
13 / 14 (92,9 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 13 / 90 (14,4 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 12 / 13 (92,3 %).
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