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

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Lee, J., Giwa Onaiwu, M., Boye, Y., Burks-Abbot, 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
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Auteurs

Auteur·ices des publications
12
Auteur·ices de la publication identifié·es comme autistes
2 / 12 (16,7 %)
  1. Jordan Lee
  2. Morénike Giwa Onaiwu *
  3. Yesenia Boye
  4. Gyasi Burks-Abbot
  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

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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 11:30.

Références citées
63
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
12 / 63 (19,0 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
22 / 229 (9,6 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 22 / 90 (24,4 %). Auteurices cité·es distinct·es identifié·es comme autistes : 17 / 210 (8,1 %).
Occurrences citées rattachées à la base AutiHub
90 / 229 (39,3 %)
Auteurices cité·es distinct·es rattaché·es : 73 / 210 (34,8 %)
Occurrences rattachées, non identifiées comme autistes
68 / 90 (75,6 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 68 / 229 (29,7 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 56 / 73 (76,7 %).
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