Documenter les histoires méconnues d'adultes autistes diagnostiqués tardivement : protocole d'étude qualitative utilisant la méthodologie de l'histoire orale

Titre original en anglais : Documenting the untold histories of late-diagnosed autistic adults: a qualitative study protocol using oral history methodology

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Pellicano, E., Lawson, W., Hall, G., Mahony, J., Lilley, R., Davis, C., Arnold, S. R. C., Trollor, J. N., & Yudell, M. (2020). Documenting the untold histories of late-diagnosed autistic adults: a qualitative study protocol using oral history methodology. BMJ Open, 10(5), e037968. https://doi.org/10.1136/bmjopen-2020-037968

Date de publication: 01/05/2020 Ajout dans AutiHub: 05/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
9
Auteur·ices de la publication identifié·es comme autistes
2 / 9 (22,2 %)
  1. Elizabeth Pellicano
  2. Wenn Lawson *
  3. Gabrielle Hall *
  4. Joanne Mahony
  5. Rozanna Lilley
  1. Catherine Davis
  2. Samuel R. C. Arnold
  3. Julian N Trollor
  4. Michael Yudell

Résumé

INTRODUCTION : Recevoir un diagnostic d'autisme à l'âge adulte est de plus en plus fréquent pour un sous-groupe de personnes qui ont soit reçu un diagnostic erroné durant l'enfance, soit n'ont pas reçu de diagnostic du tout. Cette étude qualitative, coproduite avec des personnes autistes, invite des adultes autistes diagnostiqués tardivement à partager leurs histoires de vie afin de (1) mieux comprendre les conséquences de vivre sans diagnostic, (2) élucider ce qui précipite un diagnostic d'autisme au milieu ou à la fin de l'âge adulte et (3) identifier l'impact perçu de la réception de ce diagnostic. METHODES ET ANALYSE : Les histoires orales ont constitué un moyen efficace de mettre au jour des voix négligées et marginalisées. Nous adoptons donc, dans cette étude, une méthodologie qualitative d'histoire orale afin de comprendre les expériences de ces adultes, en particulier le fait de vivre à une époque où l'autisme était peu connu. Nous recruterons 24 participants qui (1) seront nés avant 1975, (2) auront reçu un diagnostic clinique d'autisme après l'âge de 35 ans, (3) parleront anglais et (4) auront passé la majeure partie de leur enfance et de leur âge adulte en Australie. Les participants prendront part à quatre séances, y compris l'entretien principal, qualitatif, d'histoire orale, dans une gamme de formats possibles afin de faciliter l'inclusion. Les données d'entretien seront analysées au moyen d'une analyse thématique réflexive. ETHIQUE ET DIFFUSION : Le protocole a reçu l'approbation éthique institutionnelle pour la recherche du Human Research Ethics Committee de la Macquarie University (Ref. : 52019556310562). Cette étude permettra de comprendre les expériences de vie des adultes autistes, en particulier des Australiens d'âge moyen et plus âgés, devrait éclairer des pratiques diagnostiques plus efficaces et fournir un aperçu des facteurs clés susceptibles de promouvoir la résilience et d'améliorer la qualité de vie des personnes autistes. Les résultats seront diffusés auprès des publics universitaires et cliniques par le biais d'articles de revues et de présentations lors de conférences, et auprès des communautés autistes et de l'autisme par le biais de rapports accessibles. Les entretiens seront également préparés pour un archivage numérique, ce qui permettra un accès continu aux générations et communautés futures.

INTRODUCTION: Receiving a diagnosis of autism in adulthood is increasingly common for a subset of individuals who were either misdiagnosed in childhood or missed out on a diagnosis altogether. This qualitative study, coproduced with autistic people, invites late-diagnosed autistic adults to share their life histories to (1) understand better the consequences of living without a diagnosis, (2) elucidate what precipitates an autism diagnosis in mid-to-late adulthood and (3) identify the perceived impact of receiving that diagnosis. METHODS AND ANALYSIS: Oral histories have been a successful way to uncover overlooked and marginalised voices. We therefore adopt qualitative, oral history methodology in this study to understand these adults' experiences, especially of living in an era when autism was not well known. We will recruit 24 participants who will (1) have been born before 1975, (2) have received a clinical, autism diagnosis after the age of 35, (3) be English-speaking and (4) have spent most of their childhood and adulthood living in Australia. Participants will take part in four sessions, including the main, qualitative, oral history interview, through a range of possible formats to facilitate inclusion. The interview data will be analysed using reflexive thematic analysis. ETHICS AND DISSEMINATION: The protocol has received institutional research ethics approval from Macquarie University's Human Research Ethics Committee (Ref.: 52019556310562). This study will yield understanding of the life experiences of autistic adults, especially middle-aged and older Australians, should inform more effective diagnostic practices and provide insight into the key factors that might promote resilience and enhance quality of life in autistic people. The findings will be disseminated to academic and clinical audiences through journal articles and conference presentations and to the autistic and autism communities through accessible reports. The interviews will also be prepared for digital archiving, which will enable ongoing access for future generations and communities.

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
67
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
8 / 67 (11,9 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
14 / 242 (5,8 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 14 / 134 (10,4 %). Auteurices cité·es distinct·es identifié·es comme autistes : 12 / 191 (6,3 %).
Occurrences citées rattachées à la base AutiHub
134 / 242 (55,4 %)
Auteurices cité·es distinct·es rattaché·es : 90 / 191 (47,1 %)
Occurrences rattachées, non identifiées comme autistes
120 / 134 (89,6 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 120 / 242 (49,6 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 78 / 90 (86,7 %).
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