Principes directeurs et priorités de recherche pour la recherche sur les thérapies de l’autisme dans la petite enfance : résultats d’un projet impliquant la communauté

Titre original en anglais : Guiding Principles and Research Priorities for Early Childhood Autism Therapy Research: Results of a Community-Engaged Project

Cette publication est incluse dans le projet « Contributions académiques de personnes autistes sur l’autisme ». trois auteur·ices de cette publication sont identifié·es comme autistes dans le projet.

À propos de la mention auteur·ice autiste

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Lee, J., Onaiwu, M. G., Boye, Y., Burks-Abbott, G., Brandsen, S., Laurenti, L., Logan, R., Malone, E. R., Tam, M., Waqar, S., Wardlow, D., & Roberts, M. Y. (2025). Guiding Principles and Research Priorities for Early Childhood Autism Therapy Research: Results of a Community-Engaged Project. Neurodiversity, 3. https://doi.org/10.1177/27546330251338419

Date de publication: 27/04/2025 Ajout dans AutiHub: 05/07/2026 Type: Article Langue de l’article: Anglais
Source éditeur (DOI) Source OpenAlex

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Auteurs

Auteur·ices des publications
12
Auteur·ices de la publication identifié·es comme autistes
3 / 12 (25,0 %)
  1. Jordan Lee
  2. Morénike Giwa Onaiwu *
  3. Yesenia Boye
  4. Gyasi Burks-Abbott *
  1. Sam Brandsen *
  2. Lucia Laurenti
  3. Rebecca Logan
  4. Eva Richardson Malone
  1. Megan Tam
  2. Samar Waqar
  3. Deonna Wardlow
  4. Megan Y. Roberts

Résumé

De nombreux adultes autistes rapportent des conséquences négatives durables de leurs expériences thérapeutiques durant la petite enfance, appelant à des soutiens qui favorisent le développement et l’inclusion selon leurs façons naturelles d’apprendre et d’être, au lieu d’utiliser des normes développementales non autistes. Aux États-Unis (US), les jeunes enfants en situation de handicap reçoivent des services par l’intermédiaire de l’intervention précoce (EI), un programme mandaté au niveau fédéral qui vise à aider les familles à comprendre et à soutenir leur enfant ; toutefois, une grande partie de la recherche actuelle sur l’autisme est centrée sur l’enfant, ce qui limite sa capacité à répondre aux besoins essentiels de la pratique clinique. Ensemble, ces éléments démontrent le manque d’alignement de la recherche sur les thérapies de l’autisme avec les objectifs de nombreuses personnes autistes et de leurs aidants, ainsi qu’avec les exigences contextuelles de l’EI. Ce manuscrit présente les résultats d’un projet collaboratif dans lequel 17 adultes autistes, aidants autistes et aidants non autistes d’enfants autistes vivant aux US ont élaboré des principes directeurs et des priorités pour la future recherche sur l’autisme dans la petite enfance. Ce projet fournira une base aux chercheurs sur l’autisme pour élaborer des thérapies et des soutiens alignés sur les besoins et les priorités de la communauté, aboutissant à des pratiques plus équitables et plus efficaces pour les diverses familles bénéficiant de l’EI. La liste complète des principes directeurs et des priorités peut être consultée à l’adresse https://www.eicollab.northwestern.edu/research-priorities/.

Many autistic adults report negative long-lasting consequences of their early childhood therapy experiences, calling for supports that promote development and inclusion according to their natural ways of learning and being, instead of using non-autistic developmental standards. In the United States (US), young children with disabilities receive services through early intervention (EI), a federally-mandated program with a focus on helping families understand and support their child; however, much of current autism research is child-focused, limiting its ability to address key clinical practice needs. Together, this demonstrates the misalignment of autism therapy research with the goals of many autistic people and caregivers, and the contextual demands of EI. This manuscript reports the outputs of a collaborative project in which 17 autistic adults, autistic caregivers, and non-autistic caregivers of autistic children living in the US developed guiding principles and priorities for future early childhood autism research. This project will provide a foundation for autism researchers to develop therapies and supports that are aligned with community needs and priorities, resulting in more equitable and effective practices for the diverse families served through EI. The full list of guiding principles and priorities may be viewed at https://www.eicollab.northwestern.edu/research-priorities/.

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 : 02/10/2026 07:59.

Références citées
63
Avec un DOI
59
Sans DOI, à partir du texte brut de la bibliographie
4
14 / 63 (22,2 %) références citées comprennent au moins une personne identifiée comme autiste.
Références avec données à compléter
3 / 63 (4,8 %)
Références avec noms d’auteurices détectés
60 / 63 (95,2 %)
Sans nom d’auteurice détecté
3
Sans titre structuré
3
Sans identifiant stable
3
Références avec noms bruts d’auteurices restant à vérifier
3
Références avec problème de récupération des métadonnées externes
0
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
229
À partir du DOI ou de métadonnées externes
229
À partir du texte brut validé de la bibliographie
0
Noms bruts déjà validés
0
Noms bruts restant à vérifier
7
98 / 229 (42,8 %) noms sont associés à un·e auteurice déjà présent·e dans AutiHub. 131 / 229 (57,2 %) noms ne sont pas encore associés.
Noms associés à une personne identifiée comme autiste
31 / 229 (13,5 %)
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 : 31 / 98 (31,6 %). Personnes distinctes identifiées comme autistes : 26 / 210 (12,4 %).
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