S’identifier comme autiste sans diagnostic formel : qui s’auto-identifie comme autiste et pourquoi ?

Titre original en anglais : Identifying as Autistic Without a Formal Diagnosis: Who Self-Identifies as Autistic and Why?

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Ahuvia, I., Gürbüz, E., Cuda, J., Kapp, S. K., Houck, A. P., Gates, J. A., Schleider, J. L., & Gurba, A. (2026). Identifying as Autistic Without a Formal Diagnosis: Who Self-Identifies as Autistic and Why? Autism in Adulthood. https://doi.org/10.1177/25739581251409920

Date de publication: 22/01/2026 Ajout dans AutiHub: 05/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
8
Auteur·ices de la publication identifié·es comme autistes
2 / 8 (25,0 %)
  1. Isaac Ahuvia
  2. Emine Gürbüz
  3. Josephine Cuda
  4. Steven K. Kapp *
  1. Abigail P. Houck
  2. Jacquelyn A. Gates
  3. Jessica L. Schleider
  4. Ava Gurba *

Résumé

Contexte : Les adultes s’auto-identifient de plus en plus comme autistes sans diagnostic formel, mais peu de recherches ont systématiquement examiné (a) les caractéristiques, expériences et besoins uniques des adultes qui s’auto-identifient et (b) leurs préférences concernant le diagnostic. Comprendre les besoins et préférences uniques des adultes qui s’auto-identifient est nécessaire pour mieux les soutenir. Méthode : Nous avons mené une étude transversale à méthodes mixtes auprès d’adultes autistes aux États-Unis qui soit s’auto-identifiaient comme autistes (n = 147), soit disposaient d’un diagnostic formel d’autisme (n = 115), recrutés via la plateforme d’enquête Prolific. Les participants ont été comparés selon (a) les caractéristiques démographiques, (b) les traits et expériences autistiques, (c) les résultats psychosociaux, (d) les besoins de soutien et (e) les croyances concernant l’autisme. En outre, les participants qui s’auto-identifiaient ont indiqué s’ils souhaitaient un diagnostic, pourquoi ou pourquoi pas, et les obstacles auxquels ils étaient confrontés. Résultats : Les adultes autistes qui s’auto-identifiaient étaient similaires aux adultes diagnostiqués quant aux traits autistiques, y compris les traits diagnostiques (>93 % des deux groupes ont obtenu un score ≥14 au Ritvo Autism and Asperger Diagnostic Scale-14 Screen). Toutefois, les adultes autistes qui s’auto-identifiaient différaient des adultes diagnostiqués de manière significative. Les adultes qui s’auto-identifiaient étaient plus susceptibles d’être des femmes cisgenres (53,5 % contre 27,0 %), présentaient un moins bon bien-être mental (d s = −0,41), étaient plus susceptibles d’avoir des besoins de soutien non satisfaits (71,4 % contre 47,0 %), et rencontraient des obstacles uniques pour recevoir du soutien (le plus fréquemment un manque de ressources). La majorité (68,7 %) des adultes qui s’auto-identifiaient souhaitaient un diagnostic formel, mais se heurtaient à des obstacles pour l’obtenir. Les adultes qui s’auto-identifiaient ont cité plusieurs raisons de vouloir un diagnostic (p. ex., validation, accès à certains services), mais également des motifs d’hésitation (p. ex., crainte de la stigmatisation et de la discrimination). Conclusion : Les adultes qui s’auto-identifient comme autistes sont similaires aux adultes diagnostiqués quant à leurs traits autistiques, mais rencontrent davantage d’obstacles pour accéder aux services et peuvent être particulièrement vulnérables à des résultats psychosociaux défavorables. Les résultats psychosociaux chez les adultes autistes qui s’auto-identifient pourraient être améliorés en augmentant l’accès au diagnostic et/ou aux services psychosociaux.

Background: Adults increasingly self-identify as autistic without a formal diagnosis, yet little research has systematically investigated (a) the unique characteristics, experiences, and needs of self-identifying adults and (b) their preferences regarding diagnosis. Understanding the unique needs and preferences of self-identifying adults is necessary to better support them. Method: We conducted a cross-sectional, mixed-methods study of U.S. autistic adults who either self-identified as autistic ( n = 147) or had a formal autism diagnosis ( n = 115), recruited via the survey platform Prolific. Participants were compared on (a) demographic characteristics, (b) autistic traits and experiences, (c) psychosocial outcomes, (d) support needs, and (e) beliefs about autism. Moreover, self-identifying participants reported whether they wanted a diagnosis, why or why not, and what barriers they faced. Results: Self-identifying autistic adults were similar to diagnosed adults in autistic traits, including diagnostic traits (>93% of both groups scored ≥14 on the Ritvo Autism and Asperger Diagnostic Scale-14 Screen). However, self-identifying autistic adults differed from diagnosed adults in significant ways. Self-identifying adults were more likely to be cisgender female (53.5% vs. 27.0%), experienced worse mental well-being ( d s = −0.41), were more likely to experience unmet support needs (71.4% vs. 47.0%), and faced unique barriers to receiving support (most frequently a lack of resources). The majority (68.7%) of self-identifying adults wanted a formal diagnosis but faced barriers in doing so. Self-identifying adults named a number of reasons for wanting a diagnosis (e.g., validation, access to certain services), but also grounds for hesitation (e.g., fear of stigma and discrimination). Conclusion: Adults who self-identify as autistic are similar to diagnosed adults in their autistic traits but face more barriers to accessing services and may be uniquely vulnerable to experiencing adverse psychosocial outcomes. Psychosocial outcomes in self-identifying autistic adults may be improved by increasing access to diagnosis and/or psychosocial services.

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
60
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
12 / 60 (20,0 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
25 / 252 (9,9 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 25 / 114 (21,9 %). Auteurices cité·es distinct·es identifié·es comme autistes : 13 / 221 (5,9 %).
Occurrences citées rattachées à la base AutiHub
114 / 252 (45,2 %)
Auteurices cité·es distinct·es rattaché·es : 84 / 221 (38,0 %)
Occurrences rattachées, non identifiées comme autistes
89 / 114 (78,1 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 89 / 252 (35,3 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 71 / 84 (84,5 %).
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