« Les mauvais soutiens sont pires que l'absence de soutien » : perspectives autistes sur les soutiens à l'autisme du nourrisson très précoces

Titre original en anglais : “The Wrong Supports Are Worse than no Support”: Autistic Perspectives on Early-in-Life Infant Autism Supports

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Smith, J., Dwyer, P., O’Connor, E., Gurba, A., Aulich, A., Constantine, C., Fidock, E., Gore, K., Green, C., Harrington, L. T., Hudry, K., Jellett, R., Kennedy, L., Meera, S. S., Nowell, S. W., Rabba, A. S., Watson, L. R., Whitehouse, A., & Bent, C. A. (2026). “The Wrong Supports Are Worse than no Support”: Autistic Perspectives on Early-in-Life Infant Autism Supports. Autism in Adulthood. https://doi.org/10.1177/25739581251371874

Date de publication: 02/02/2026 Ajout dans AutiHub: 05/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
19
Auteur·ices de la publication identifié·es comme autistes
2 / 19 (10,5 %)
  1. Jodie Smith
  2. Patrick Dwyer *
  3. Erin O’Connor
  4. Ava Gurba *
  5. Alexandra Aulich
  6. Christos Constantine
  7. Esther Fidock
  1. Katherine Gore
  2. Cherie Green
  3. Lucas T. Harrington
  4. Kristelle Hudry
  5. Rachel Jellett
  6. Lyndel Kennedy
  7. Shoba S. Meera
  1. Sallie W. Nowell
  2. Aspasia Stacey Rabba
  3. Linda R. Watson
  4. Andrew Whitehouse
  5. Catherine A. Bent

Résumé

Contexte : Les données suggèrent que plus les soutiens sont fournis tôt aux jeunes enfants autistes, meilleurs sont les résultats globaux. Les soutiens n'ont généralement été disponibles qu'après un diagnostic d'autisme, mais grâce à l'accroissement des connaissances sur les trajectoires développementales précoces, des soutiens cliniques peuvent désormais être proposés avant le diagnostic aux nourrissons présentant des caractéristiques précoces de l'autisme et/ou à ceux ayant des antécédents familiaux d'autisme. Néanmoins, nous en savons actuellement peu sur les perspectives de la communauté autiste concernant l'acceptabilité des soutiens prédiagnostiques et, sans ces informations, nous ne pouvons pas être certains que ces soutiens correspondent aux préférences et aux priorités de la communauté. Méthodes : Dans cette étude, nous avons interrogé 16 adultes autistes — 10 parents et 6 non-parents — sur leurs opinions concernant les soutiens à l'autisme du nourrisson très précoces (c'est-à-dire prédiagnostiques). Nous avons analysé les données à l'aide d'une analyse thématique réflexive. Résultats : Les participants ont exprimé qu'une gamme de soutiens devrait être disponible en fonction des besoins individuels des familles, leur conception et leur mise en œuvre étant éclairées par une contribution significative de la communauté autiste. Les participants se sont fortement opposés aux soutiens qui encourageaient les enfants à masquer, camoufler et/ou se conformer aux normes non autistes. Ils ont approuvé les soutiens dans lesquels les personnes s'occupant des enfants étaient aidées à reconnaître les tentatives des nourrissons de communiquer et d'interagir et à y répondre, et qui optimisaient la qualité de vie et le bien-être des nourrissons. Au-delà de leurs perspectives sur ce à quoi devraient ressembler les soutiens très précoces, les participants ont également réfléchi aux difficultés rencontrées par les personnes autistes — y compris eux-mêmes — lorsqu'elles tentaient de s'orienter dans les systèmes de services neurotypiques, notamment le fait de se sentir souvent non reconnues, jugées et non soutenues, ce qui était particulièrement difficile pour les adultes autistes de tous genres qui découvraient l'expérience de la parentalité. Conclusion : Ces résultats peuvent éclairer la forme que prendront les futurs soutiens très précoces destinés aux nourrissons/jeunes enfants neurodivergents et la manière dont nous pouvons au mieux soutenir les nouveaux parents qui sont eux-mêmes autistes.

Background: Evidence suggests that the earlier supports are provided to young Autistic children, the better the overall outcomes. Supports have typically only been available after an autism diagnosis but with increased knowledge about early developmental trajectories, clinical supports can now be offered prediagnosis for infants showing early autism features and/or those with a family history of autism. Nevertheless, we currently know little about the Autistic community perspectives on the acceptability of prediagnostic supports, and without this information, we cannot be confident that these supports align with community preferences and priorities. Methods: In this study, we interviewed 16 Autistic adults—10 parents and 6 nonparents—about their views on very early-in-life (i.e., prediagnostic) infant autism supports. We analyzed the data using reflexive thematic analysis. Results: Participants expressed that a range of supports should be available based on individual family needs, with design and delivery informed by meaningful input from the Autistic community. Participants strongly opposed supports that encouraged children to mask, camouflage, and/or comply with non-autistic norms. They endorsed supports where caregivers were aided to recognize and respond to infant attempts to communicate and interact, and which optimized infant quality of life and wellbeing. Beyond their perspectives on what very early supports should look like, participants also reflected on the challenges Autistic individuals—including themselves—faced trying to navigate neurotypical service systems, including often feeling unrecognized, judged, and unsupported, something that was especially difficult for Autistic adults of all genders who were new to the parenting experience. Conclusion: These findings can inform what future very early supports look like for neurodivergent infants/young children and how we can best support new parents who are themselves autistic.

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 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 11:30.

Références citées
54
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
13 / 54 (24,1 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
34 / 341 (10,0 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 34 / 172 (19,8 %). Auteurices cité·es distinct·es identifié·es comme autistes : 24 / 276 (8,7 %).
Occurrences citées rattachées à la base AutiHub
172 / 341 (50,4 %)
Auteurices cité·es distinct·es rattaché·es : 124 / 276 (44,9 %)
Occurrences rattachées, non identifiées comme autistes
138 / 172 (80,2 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 138 / 341 (40,5 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 100 / 124 (80,6 %).
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