Défis méthodologiques et possibilités lors de l'étude de la trajectoire de l'autisme

Titre original en anglais : Methodological challenges and opportunities when studying the course of autism

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Bal, V., Szatmári, P., Georgiades, S., Gentles, S. J., Girault, J. B., Howlin, P., Lai, M. C., Leno, V. C., Lord, C., Madgett, K., Sheinkopf, S. J., Simonoff, E., Williams, Z. J., Zwaigenbaum, L., & Halladay, A. (2025). Methodological challenges and opportunities when studying the course of autism. Autism, 29(10), 2618-2631. https://doi.org/10.1177/13623613251341012

Date de publication: 22/05/2025 Ajout dans AutiHub: 07/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
15
Auteur·ices de la publication identifié·es comme autistes
1 / 15 (6,7 %)
  1. Vanessa Bal
  2. Péter Szatmári
  3. Stelios Georgiades
  4. Stephen J. Gentles
  5. Jessica B. Girault
  1. Patricia Howlin
  2. Meng-Chuan Lai
  3. Virginia Carter Leno
  4. Catherine Lord
  5. Katie Madgett
  1. Stephen J. Sheinkopf
  2. Emily Simonoff
  3. Zachary J. Williams *
  4. Lonnie Zwaigenbaum
  5. Alycia Halladay

Résumé

La recherche longitudinale sur l'autisme a apporté une abondance de connaissances sur les facteurs étiologiques, le développement de l'enfance à l'âge adulte, les changements et les besoins au cours de la vie, ainsi que les résultats à plus long terme à l'âge adulte pour les personnes sur le spectre et les membres de leur famille. Cette recherche est essentielle pour mieux comprendre les besoins des personnes à mesure qu'elles vieillissent. Cependant, parallèlement aux possibilités encore non réalisées de comprendre une personne de manière plus nuancée au fil du temps, ce plan de recherche présente des défis qui devraient être pris en compte. Ceux-ci comprennent la diversité des échantillons et des mesures, le maintien des participants, les mesures des résultats, l'analyse et les considérations de financement. Cet article présente certains des défis les plus urgents ainsi que des solutions potentielles afin de maximiser la valeur des plans de recherche longitudinale qui peuvent aider à répondre aux questions hautement prioritaires pour la communauté de l'autisme. Résumé vulgarisé La recherche longitudinale a été essentielle pour comprendre le parcours de vie des personnes autistes, y compris les facteurs qui augmentent la probabilité d'un diagnostic d'autisme, l'émergence de marqueurs précoces, les troubles psychiatriques concomitants, la prédiction des futurs besoins éducatifs et de soutien durant l'enfance et à l'âge adulte, ainsi que la compréhension de ce qui rend chaque personne unique et contribue au bien-être des personnes autistes et de leurs familles. Cependant, ces études nécessitent du temps, de la patience et un investissement de la part des familles, des personnes et des scientifiques, et elles sont difficiles pour toutes les personnes concernées. Cet article présentera certains des problèmes survenus dans le passé et proposera des solutions potentielles pour améliorer la qualité de ces études au bénéfice des communautés scientifique et autiste. Ils comprennent la diversité des échantillons et des mesures, le maintien des participants, les mesures des résultats, l'analyse et les considérations de financement. Cette compréhension du domaine est importante tant pour la recherche scientifique que pour l'engagement communautaire dans les études qui incluent la communauté autiste.

Longitudinal research in autism has contributed a wealth of knowledge about etiological factors, development from childhood through adulthood, life course changes and needs, as well as longer-term adult outcomes for individuals on the spectrum and their family members. This research is essential to better understand the needs of individuals as they age. However, along with the as yet unrealized opportunities to understand an individual in more nuanced ways across time, there are challenges to utilizing this research design that should be considered. These include sample and measurement diversity, retention, outcome measures, analysis, and funding considerations. This article outlines some of the most pressing challenges together with potential solutions to maximize the value of longitudinal research designs that can help address questions that are of high priority to the autism community.Lay AbstractLongitudinal research has been critical to understand the life course of people with autism, including factors which increase the probability of an autism diagnosis, the emergence of early markers, co-occurring psychiatric conditions, predication of future educational and support needs across childhood and adulthood, and understanding what makes each person unique and contributes to the well-being of autistic people and their families. However, these studies take time, patience, investment of families and individuals, scientists and are challenging to all involved. This article will outline some of the issues that have occurred in the past and provide potential solutions to improve the quality of these studies to both the scientific and autistic communities. They include sample and measurement diversity, retention, outcome measures, analysis, and funding considerations. This understanding of the field is important for both scientific research and community engagement in the studies that include the autistic community.

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
91
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
7 / 91 (7,7 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
19 / 659 (2,9 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 19 / 186 (10,2 %). Auteurices cité·es distinct·es identifié·es comme autistes : 18 / 529 (3,4 %).
Occurrences citées rattachées à la base AutiHub
186 / 659 (28,2 %)
Auteurices cité·es distinct·es rattaché·es : 111 / 529 (21,0 %)
Occurrences rattachées, non identifiées comme autistes
167 / 186 (89,8 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 167 / 659 (25,3 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 93 / 111 (83,8 %).
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