« Vous avez l'impression d'avoir échoué envers votre enfant » : expériences parentales du langage des comptes rendus diagnostiques de l'autisme

Titre original en anglais : ‘You Feel Like You Failed Your Child’: Parental Experiences of Autism Diagnostic Report Language

Cette publication est incluse dans le projet « Contributions académiques de personnes autistes sur l’autisme ». un auteur·ice de cette publication est identifié·e comme autiste dans le projet.

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Kerr, S., Robertson, A., Davies, J., & Lang, J. (2026). ‘You Feel Like You Failed Your Child’: Parental Experiences of Autism Diagnostic Report Language. Neurodiversity, 4. https://doi.org/10.1177/27546330261483779

Publication date: 01/09/2026 Ajout dans AutiHub: 18/09/2026 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. Sophie Kerr
  2. Ashley Robertson
  3. Jennifer Davies
  4. Jason Lang *

Résumé

Cette étude a exploré les perceptions des parents concernant le langage utilisé dans les comptes rendus diagnostiques neurodéveloppementaux à la suite d'évaluations de l'autisme. La recherche a examiné comment le langage axé sur les déficits au sein des cadres diagnostiques traditionnels influence les expériences, la compréhension et l'engagement des familles à l'égard du diagnostic de leur enfant. Quinze parents d'enfants autistes ont participé à des entretiens semi-structurés, analysés au moyen d'une analyse thématique réflexive. Quatre thèmes ont été identifiés : le cadrage en termes de déficits comme représentation erronée de l'enfant, la valeur des mots, le recadrage du diagnostic au moyen d'un langage neuroaffirmatif, et l'affirmation par opposition à l'accès. Les parents ont indiqué que le langage employé dans les comptes rendus était décourageant, excessivement axé sur les déficits et représentait parfois de manière erronée les forces et l'identité de leur enfant. Les participants neurodivergents ont exprimé une sensibilité à la terminologie axée sur les déficits. Bien que beaucoup aient valorisé un langage plus affirmatif, fondé sur les forces, certains ont reconnu qu'un langage orienté vers les déficits demeure nécessaire pour obtenir du soutien auprès des services d'éducation et de santé. Cela révèle un paradoxe complexe : un langage susceptible de permettre l'accès à l'aide peut simultanément porter atteinte à l'identité et au bien-être. Les résultats indiquent que le langage diagnostique a un impact émotionnel et relationnel sur les familles et peut façonner l'identité personnelle des enfants. Bien que la seule modification du langage ne puisse résoudre les défis systémiques, l'adoption de pratiques davantage neuroaffirmatives pourrait améliorer les expériences diagnostiques et favoriser un développement identitaire positif. L'étude souligne la nécessité d'un changement culturel et institutionnel afin de soutenir des pratiques diagnostiques significatives et inclusives, reflétant les valeurs du mouvement de la neurodiversité.

This study explored parents’ perceptions of the language used in neurodevelopmental diagnostic reports following autism assessments. The research examined how deficit-based language within traditional diagnostic frameworks influence families’ experiences, understanding and engagement with their child's diagnosis. Fifteen parents of autistic children participated in semi-structured interviews, analysed through reflexive thematic analysis. Four themes were identified: deficit framing as misrepresentation of the child, the value of words, reframing diagnosis through neuro-affirming language and affirmation versus access. Parents reported that language in reports was discouraging, overly focused on deficits and at times misrepresented their child's strengths and identity. Neurodivergent participants expressed sensitivity to deficit-based terminology. While many valued more affirming, strengths-based language, some recognised that deficit-oriented language remains necessary to secure support from education and health services. This reveals a complex paradox: language that may grant access to help can simultaneously undermine identity and well-being. The findings indicate that diagnostic language has emotional and relational impact on families and may shape children's self-identity. While changing language alone cannot resolve systemic challenges, adopting more neuro-affirming practices could improve diagnostic experiences and support positive identity development. The study underscores the need for cultural and institutional change to support meaningful, inclusive diagnostic practices reflecting the values of the neurodiversity movement.

Bibliographie citée par cette référence

Les références citées sont importées depuis des sources externes de métadonnées lorsqu’elles sont disponibles. La liste peut être partielle.

Vue d’ensemble de la bibliographie citée

Ces indicateurs décrivent la bibliographie citée par cette publication. Un nom d’auteurice est compté chaque fois qu’il apparaît dans une référence citée : une même personne peut donc être comptée plusieurs fois. Les noms qui ne sont pas encore associés à un·e auteurice déjà présent·e dans AutiHub sont traités comme inconnus, pas comme non autistes. Dernier calcul : 19/09/2026 23:31.

Références citées
82
Avec un DOI
69
Sans DOI, à partir du texte brut de la bibliographie
13
19 / 82 (23,2 %) références citées comprennent au moins une personne identifiée comme autiste.
Références avec données à compléter
4 / 82 (4,9 %)
Références avec noms d’auteurices détectés
78 / 82 (95,1 %)
Sans nom d’auteurice détecté
4
Sans titre structuré
3
Sans identifiant stable
13
Références avec noms bruts d’auteurices restant à vérifier
4
Références avec problème de récupération des métadonnées externes
1
Ces indicateurs portent sur les références citées affichées sur cette page, après fusion des doublons techniques. Une référence sans DOI peut quand même soutenir les statistiques d’auteurices lorsqu’un titre et des noms d’auteurices sont disponibles.
Noms d’auteurices détectés dans la bibliographie citée
208
À partir du DOI ou de métadonnées externes
208
À partir du texte brut validé de la bibliographie
0
Noms bruts déjà validés
0
Noms bruts restant à vérifier
4
96 / 208 (46,2 %) noms sont associés à un·e auteurice déjà présent·e dans AutiHub. 112 / 208 (53,8 %) noms ne sont pas encore associés.
Noms associés à une personne identifiée comme autiste
25 / 208 (12,0 %)
Calculé sur l’ensemble des noms d’auteurices détectés dans la bibliographie citée. Parmi les noms associés à un·e auteurice déjà présent·e dans AutiHub : 25 / 96 (26,0 %). Personnes distinctes identifiées comme autistes : 16 / 187 (8,6 %).
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