Points de vue de la communauté sur l'évaluation et le diagnostic de l'autisme : principes destinés à orienter la pratique clinique

Titre original en anglais : Community views on the assessment and diagnosis of autism: Principles to guide clinical practice

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Sulek, R., Wicks, R., Hinze, E., Dargue, N., Dempsey, B., Goodall, E., Groves, L., Trembath, D., Waddington, H., Whitehouse, A., & Varcin, K. J. (2026). Community views on the assessment and diagnosis of autism: Principles to guide clinical practice. Autism, 30(3), 642-654. https://doi.org/10.1177/13623613251406094

Date de publication: 26/01/2026 Ajout dans AutiHub: 12/08/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
11
Auteur·ices de la publication identifié·es comme autistes
1 / 11 (9,1 %)
  1. Rhylee Sulek
  2. Rachelle Wicks
  3. Emma Hinze
  4. Nicole Dargue
  1. Briohny Dempsey
  2. Emma Goodall *
  3. Libby Groves
  4. David Trembath
  1. Hannah Waddington
  2. Andrew Whitehouse
  3. Kandice J. Varcin

Résumé

Cette étude visait à identifier des principes directeurs devant sous-tendre l'évaluation et le diagnostic de l'autisme afin d'améliorer la qualité, la cohérence et l'exactitude des services fournis aux personnes et à leurs familles. Une enquête en ligne et des groupes de discussion ont été utilisés pour recueillir les perspectives de membres des communautés australiennes autistes et de l'autisme. Au total, 871 personnes ont participé aux activités de recherche, notamment des personnes autistes (n = 253), des parents de personnes autistes (n = 344), des praticiens (n = 325) et des membres d'organisations s'intéressant à l'évaluation et/ou au diagnostic de l'autisme (n = 115). Trois thèmes généraux, comprenant 15 codes et représentant les principes qui devraient sous-tendre la pratique tout au long du processus d'évaluation et de diagnostic, ont été élaborés : (a) placer la personne au centre du processus ; (b) comprendre et valoriser la personne dans sa globalité ; et (c) améliorer la qualité et l'accès. L'évaluation et le diagnostic de l'autisme devraient aller au-delà de la prise de décision diagnostique pour inclure la compréhension des besoins individuels et l'identification des parcours de soutien. Les principes identifiés constituent une première étape pour orienter les praticiens dans leur approche, en veillant à ce qu'ils travaillent de manière à promouvoir les meilleures pratiques, à refléter les perspectives des personnes autistes et à produire des résultats significatifs pour les personnes et les familles, indépendamment de l'obtention d'une étiquette diagnostique. Résumé grand public Cette étude cherchait à identifier des principes de pratique susceptibles d'aider à améliorer les évaluations et les diagnostics de l'autisme pour les personnes autistes et leurs familles. Pour ce faire, les chercheurs ont demandé à des personnes de la communauté de l'autisme en Australie de partager leurs réflexions au moyen d'une enquête en ligne et de groupes de discussion. Au total, 871 personnes ont participé. Cela comprenait des adultes autistes, des parents d'enfants autistes, des professionnels tels que des psychologues et des orthophonistes, ainsi que des personnes issues d'organisations liées à l'autisme. À partir de ce que les personnes ont déclaré, trois idées principales se sont dégagées : (a) placer les personnes au centre du processus, (b) considérer la personne dans sa globalité et (c) améliorer la qualité et l'accès aux services. L'étude a montré que l'obtention d'un diagnostic n'est qu'une partie du processus. Il est également important d'utiliser l'évaluation pour aider les personnes à mieux se comprendre et à trouver le soutien approprié. Les principes mis en évidence dans cette étude peuvent aider à orienter les professionnels afin qu'ils réalisent un meilleur travail lors de l'évaluation de l'autisme. Ils encouragent des pratiques respectueuses, centrées sur la personne et fondées sur ce que les personnes autistes et leurs familles considèrent comme important. Cela peut conduire à de meilleurs résultats pour tous, qu'un diagnostic soit posé ou non.

This study aimed to identify guiding principles to underpin assessment and diagnosis of autism to improve the quality, consistency and accuracy of services provided to individuals and their families. An online survey and focus groups were used to capture community perspectives of members of the Australian autistic and autism communities. A total of 871 individuals participated across the research activities, including autistic individuals (n = 253), parents of autistic individuals (n = 344), practitioners (n = 325) and members of organisations with an interest in the assessment and/or diagnosis of autism (n = 115). Three overarching themes, encompassing 15 codes, representing the principles that should underpin practice across the assessment and diagnostic process were developed (a) placing the person at the centre of the process; (b) understanding and valuing the whole person and (c) improving quality and access. Assessment and diagnosis for autism should go beyond diagnostic decision-making to include understanding of individual needs and identifying support pathways. The principles identified serve as a first step to guiding practitioners in their approach, ensuring they work in ways that promote best practice, reflect the perspectives of autistic people and engender meaningful outcomes for individuals and families that are independent of receiving a diagnostic label. Lay Abstract This study looked to identify principles of practice that could help make autism assessments and diagnoses better for autistic people and their families. To do this, the researchers asked people from the autism community in Australia to share their thoughts through an online survey and focus groups. A total of 871 people took part. This included autistic adults, parents of autistic children, professionals like psychologists and speech pathologists and people from autism-related organisations. From what people said, three main ideas stood out: (a) putting people at the centre of the process, (b) looking at the whole person and (c) improving quality and access to services. The study found that getting a diagnosis is just one part of the process. It is also important to use the assessment to help people understand themselves better and find the right support. The principles highlighted in this study can help guide professionals to do a better job when assessing autism. They encourage practices that are respectful, person-focused and based on what autistic people and their families say is important. This can lead to better outcomes for everyone, no matter whether a diagnosis is given or not.

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
54
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
4 / 54 (7,4 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
8 / 208 (3,8 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 8 / 71 (11,3 %). Auteurices cité·es distinct·es identifié·es comme autistes : 6 / 197 (3,0 %).
Occurrences citées rattachées à la base AutiHub
71 / 208 (34,1 %)
Auteurices cité·es distinct·es rattaché·es : 64 / 197 (32,5 %)
Occurrences rattachées, non identifiées comme autistes
63 / 71 (88,7 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 63 / 208 (30,3 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 58 / 64 (90,6 %).
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