« Vous devenez vous-même, votre moi complet, le vrai moi » : une revue systématique des expériences d’adultes neurodivergents concernant la reconstruction identitaire après un diagnostic d’autisme et/ou de TDAH à l’âge adulte

Titre original en anglais : “You Become Yourself, Your Full Self, the True Self”: A Systematic Review of Neurodivergent Adults’ Experiences of Identity Reconstruction Following Diagnosis of Autism and/or ADHD in Adulthood

Cette publication est incluse dans le projet « Contributions académiques de personnes autistes sur l’autisme ». un auteur·ice de cette publication est identifié·e comme autiste dans le projet.

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Meldrum, P., Johnson, B. P., Lo, B. C. Y., Bedelis, M. L., & Rabba, A. S. (2026). “You Become Yourself, Your Full Self, the True Self”: A Systematic Review of Neurodivergent Adults’ Experiences of Identity Reconstruction Following Diagnosis of Autism and/or ADHD in Adulthood. Autism in Adulthood. https://doi.org/10.1177/25739581261427260

Date de publication: 14/03/2026 Ajout dans AutiHub: 23/08/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
5
Auteur·ices de la publication identifié·es comme autistes
1 / 5 (20,0 %)
  1. Phoebe Meldrum *
  2. Beth P. Johnson
  3. Barbara Chuen Yee Lo
  4. Meagan Louise Bedelis
  5. Aspasia Stacey Rabba

Résumé

Contexte : Un nombre croissant d’adultes reçoivent tardivement dans leur vie un diagnostic d’autisme ou de TDAH, ce qui entraîne diverses réponses émotionnelles et interrogations autour de l’identité. Cette revue explore le processus de reconstruction identitaire chez des adultes autistes et avec TDAH diagnostiqués tardivement, en examinant à la fois les aspects communs et distincts de l’identité dans chaque groupe, afin de mieux comprendre comment le diagnostic affecte la perception de soi et d’orienter le futur soutien post-diagnostic. Méthodes : Conformément aux lignes directrices Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) et du Joanna Briggs Institute (JBI), nous avons saisi dans plusieurs bases de données des termes de recherche pertinents relatifs à l’autisme, au TDAH, au diagnostic tardif et à l’identité. Après le dépistage des titres et des résumés, deux évaluateurs ont examiné les articles en texte intégral afin de déterminer leur inclusion, avec une fiabilité inter-évaluateurs substantielle. Nous avons extrait et codé les données qualitatives, les thèmes ayant été identifiés au moyen d’une analyse thématique. Résultats : La stratégie de recherche a identifié un total de 6894 articles, dont 5470 étaient des doublons. Les évaluateurs ont dépisté 1423 articles. Un ensemble final de 25 articles a été identifié, dont 12 exploraient les diagnostics de TDAH et 13 les diagnostics d’autisme. Notre analyse thématique des articles suggère que les individus connaissent une réévaluation profonde de leur identité après un diagnostic à l’âge adulte. Trois thèmes généraux ont été identifiés, reflétant des expériences partagées entre l’autisme et le TDAH, ainsi que des distinctions propres à chaque condition : 1. Reconfigurer le soi ; 2. Trouver le soi à travers les autres ; et 3. Intégration émotionnelle du soi. Les participants ont été confrontés à la confusion, à la réinterprétation d’expériences passées et ont développé un sentiment de soi plus authentique, un processus facilité par le fait de trouver un sentiment d’appartenance parmi des pairs neurodivergents. Sur le plan émotionnel, ce processus nécessitait de composer avec le deuil, la stigmatisation intériorisée et des perceptions négatives de soi. Le diagnostic a été transformateur, apportant validation et autonomisation aux participants. Globalement, le processus de diagnostic semble favoriser une évolution vers une identité plus intégrée. Conclusions : Les résultats de cette revue mettent en évidence des répercussions sur l’identité à la fois communes et spécifiques à chaque condition, soulignant la nécessité d’un soutien post-diagnostic qui reconnaisse les répercussions du diagnostic sur l’identité dans l’autisme comme dans le TDAH. Les données actuelles reflètent largement des populations majoritaires, mettant en évidence une lacune dans la compréhension de la manière dont des groupes insuffisamment desservis, tels que les minorités ethniques, vivent et négocient leur identité après le diagnostic. Les cliniciens devraient être conscients de la nécessité d’un lien avec la communauté, de l’acceptation de soi et d’une prise de décision éclairée concernant la divulgation, et fournir des soins affirmatifs et adaptés après le diagnostic.

Background: Growing numbers of adults are being diagnosed as autistic or having ADHD later in life, leading to a range of emotional responses and queries around identity. This review explores the process of identity reconstruction in late-diagnosed autistic and ADHD adults, examining both shared and distinct aspects of identity in each group, to better understand how diagnosis affects self-perception and to guide future post-diagnostic support. Methods: Following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) and Joanna Briggs Institute (JBI) guidelines, we entered search terms relevant to autism, ADHD, delayed diagnosis, and identity into multiple databases. After screening titles and abstracts, two raters reviewed full-text articles to determine their inclusion with substantial inter-rater reliability. We extracted and coded qualitative data, with themes identified through thematic analysis. Results: The search strategy identified a total of 6894 articles, of which 5470 were duplicates. Reviewers screened 1423 articles. A final set of 25 articles was identified, with 12 articles exploring ADHD diagnoses and 13 articles exploring autism diagnoses. Our thematic analysis of the articles suggests that individuals experience a profound reevaluation of their identity following diagnosis in adulthood. Three overarching themes were identified, reflecting experiences shared across autism and ADHD, as well as distinctions unique to each condition: 1. Reconfiguring the self; 2. Finding the self through others; and 3. Emotional integration of the self. Participants grappled with confusion, reinterpretation of past experiences, and developed a more authentic sense of self, a process that was facilitated through finding belonging among neurodivergent peers. Emotionally, this process required navigating grief, internalized stigma, and negative self-perceptions. Diagnosis was transformative, offering validation and empowerment to participants. Overall, the process of diagnosis appears to foster growth toward a more integrated identity. Conclusions: Findings from this review highlight both shared and condition-specific impacts on identity, highlighting a need for post-diagnostic support that acknowledges the identity-related impacts of diagnosis in both autism and ADHD. Current evidence largely reflects majority populations, highlighting a gap in understanding of how underserved groups, such as ethnic minorities, experience and negotiate identity after diagnosis. Clinicians should be aware of the need for community connection, self-acceptance, and informed decision-making about disclosure, and provide affirming, tailored care following diagnosis.

Bibliographie citée par cette référence

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Vue d’ensemble de la bibliographie citée

Ces indicateurs décrivent la bibliographie citée par cette publication. Un nom d’auteurice est compté chaque fois qu’il apparaît dans une référence citée : une même personne peut donc être comptée plusieurs fois. Les noms qui ne sont pas encore associés à un·e auteurice déjà présent·e dans AutiHub sont traités comme inconnus, pas comme non autistes. Dernier calcul : 12/09/2026 18:16.

Références citées
91
Avec un DOI
85
Sans DOI, à partir du texte brut de la bibliographie
6
10 / 91 (11,0 %) références citées comprennent au moins une personne identifiée comme autiste.
Références avec données à compléter
3 / 91 (3,3 %)
Références avec noms d’auteurices détectés
88 / 91 (96,7 %)
Sans nom d’auteurice détecté
3
Sans titre structuré
2
Sans identifiant stable
6
Références avec noms bruts d’auteurices restant à vérifier
0
Références avec problème de récupération des métadonnées externes
1
Ces indicateurs portent sur les références citées affichées sur cette page, après fusion des doublons techniques. Une référence sans DOI peut quand même soutenir les statistiques d’auteurices lorsqu’un titre et des noms d’auteurices sont disponibles.
Noms d’auteurices détectés dans la bibliographie citée
365
À partir du DOI ou de métadonnées externes
365
À partir du texte brut validé de la bibliographie
0
Noms bruts déjà validés
0
Noms bruts restant à vérifier
1
97 / 365 (26,6 %) noms sont associés à un·e auteurice déjà présent·e dans AutiHub. 268 / 365 (73,4 %) noms ne sont pas encore associés.
Noms associés à une personne identifiée comme autiste
19 / 365 (5,2 %)
Calculé sur l’ensemble des noms d’auteurices détectés dans la bibliographie citée. Parmi les noms associés à un·e auteurice déjà présent·e dans AutiHub : 19 / 97 (19,6 %). Personnes distinctes identifiées comme autistes : 15 / 340 (4,4 %).
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