Les expériences d'adultes autistes ayant précédemment reçu un diagnostic de trouble de la personnalité borderline ou émotionnellement instable : une étude phénoménologique

Titre original en anglais : The experiences of autistic adults who were previously diagnosed with borderline or emotionally unstable personality disorder: A phenomenological study

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Tamilson, B., Eccles, J., & Shaw, S. C. K. (2024). The experiences of autistic adults who were previously diagnosed with borderline or emotionally unstable personality disorder: A phenomenological study. Autism, 29(2), 504-517. https://doi.org/10.1177/13623613241276073

Date de publication: 11/09/2024 Ajout dans AutiHub: 06/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
3
Auteur·ices de la publication identifié·es comme autistes
1 / 3 (33,3 %)
  1. Bruce Tamilson
  2. Jessica Eccles
  3. Sebastian Charles Keith Shaw *

Résumé

Un nombre croissant d'études examine les liens entre l'autisme et le trouble de la personnalité borderline. Les études font état de différences qui se chevauchent et des difficultés à différencier ces deux étiquettes diagnostiques. En pratique, de nombreuses personnes, en particulier des femmes autistes, estiment avoir reçu à tort un diagnostic de trouble de la personnalité borderline. Cette étude visait à explorer les expériences d'adultes autistes ayant précédemment reçu un diagnostic de trouble de la personnalité borderline. Il s'agit d'une étude phénoménologique interprétative. Les données ont été recueillies au moyen d'entretiens individuels semi-structurés. Les enregistrements audio des entretiens ont été transcrits et analysés à l'aide d'une analyse phénoménologique interprétative. Dix personnes ont participé. Toutes se souvenaient de différences autistiques depuis l'enfance qui étaient passées inaperçues. Dans la plupart des cas, le trouble de la personnalité borderline a été considéré comme un diagnostic erroné. Ce diagnostic erroné était porteur de stigmatisation, a entraîné une occultation diagnostique et a conduit à des expériences préjudiciables pour nos participants. Bien qu'ils ne s'identifiaient pas à ce diagnostic, ils se sentaient impuissants à le contester. En revanche, recevoir un diagnostic d'autisme a été « un changement de vie ». Bien que cela n'ait pas tout résolu pour eux, cela a été profondément validant. Cela leur a également permis d'être leur véritable moi authentique, en déplaçant l'accent du « traitement » et du changement de ce qu'ils sont pour convenir aux autres, vers l'acceptation de leurs différences et de leur neurotype. Cela a considérablement amélioré leur santé mentale. Résumé grand public Les personnes autistes rencontrent de nombreux obstacles pour recevoir un diagnostic d'autisme. Souvent, elles peuvent à la place recevoir à tort un diagnostic de trouble de la personnalité borderline. Pour notre étude, nous avons interrogé 10 adultes autistes ayant précédemment reçu un diagnostic de trouble de la personnalité borderline. Cela nous a aidés à mieux comprendre leurs expériences. Ils ont expliqué que le trouble de la personnalité borderline est fortement stigmatisé et peut laisser entendre que les personnes sont responsables de leurs différences de comportement. Ils ont considéré comme préjudiciables les traitements qu'ils avaient dû essayer pour le trouble de la personnalité borderline. Par exemple, ces traitements encourageaient le « masking ». Des recherches antérieures ont montré que le masking peut être préjudiciable aux personnes autistes, en l'associant au risque de suicide. Ce diagnostic a également conduit les professionnels de santé à les négliger et à écarter leurs croyances. Une fois qu'ils avaient reçu un diagnostic de trouble de la personnalité borderline, il était difficile d'accéder à une évaluation de l'autisme. Lorsqu'ils ont reçu leurs diagnostics d'autisme, cela a été beaucoup plus positif. Ce diagnostic a été validant. Il a également amélioré leur santé mentale, car ils n'étaient plus censés pratiquer le masking : leurs différences étaient désormais acceptées. Ils estimaient toujours que l'autisme était stigmatisé dans la société. Cependant, cela était très différent de la stigmatisation entourant le trouble de la personnalité borderline. Ils estimaient que la stigmatisation de l'autisme concernait davantage leur compétence en tant que personnes, tandis que la stigmatisation du trouble de la personnalité borderline concernait le fait qu'ils étaient brisés et pouvaient être nuisibles aux autres. Cette étude est importante car elle permet à leurs histoires d'être entendues par les chercheurs et les professionnels de santé. Ajouter leurs voix contribue à les humaniser, en favorisant un changement positif dans les services de santé mentale. Davantage de recherches sont désormais nécessaires.

An increasing number of studies are investigating the links between autism and borderline personality disorder. Studies report overlapping differences and the challenges in differentiating between these two diagnostic labels. In practice, there are many people, especially autistic women, who feel that they were misdiagnosed with borderline personality disorder. This study aimed to explore the experiences of autistic adults who were previously diagnosed with borderline personality disorder. This is an interpretive phenomenological study. Data were collected using one-to-one, semi-structured interviews. Interview audio-recordings were transcribed and analysed using an interpretive phenomenological analysis. Ten people participated. All recalled autistic differences since childhood that went unnoticed. In most cases, borderline personality disorder was felt to have been a misdiagnosis. This misdiagnosis carried stigma, introduced diagnostic overshadowing and led to harmful experiences for our participants. While they did not identify with the diagnosis, they felt powerless to challenge it. In contrast, receiving an autism diagnosis was ‘life changing’. While this did not solve everything for them, it was deeply validating. It also allowed them to be their true authentic selves, shifting the focus away from ‘treatment’ and changing who they are to suit others, towards acceptance of their differences and neurotype. This significantly improved their mental health. Lay Abstract Autistic people face many barriers to receiving an autism diagnosis. Often, they may be misdiagnosed with borderline personality disorder instead. For our study, we interviewed 10 autistic adults who had previously been diagnosed with borderline personality disorder. This helped us to better understand their experiences. They explained how borderline personality disorder is quite stigmatised and may suggest that people are to blame for their differences in behaviour. They found the treatments they had to try for borderline personality disorder to be harmful. For example, these treatments promoted ‘masking’. Previous research showed that masking can be harmful for autistic people, linking it to risk of suicide. This diagnosis also led to healthcare professionals neglecting them and discounting their beliefs. Once they were diagnosed with borderline personality disorder, it was hard to access an autism assessment. When they did receive their autism diagnoses, this was much more positive. This diagnosis was validating. It also improved their mental health, as they were no longer expected to mask – their differences were now accepted. They still felt that autism was stigmatised in society. However, this was very different to the stigma around borderline personality disorder. They felt autism stigma was more about their competence as people, whereas borderline personality disorder stigma was about how they were broken and might be harmful to others. This study is important because it allows their stories to be heard by researchers and healthcare professionals alike. Adding their voices helps to humanise them, promoting positive change in mental health services. More research is now needed.

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
74
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
10 / 74 (13,5 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
44 / 270 (16,3 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 44 / 122 (36,1 %). Auteurices cité·es distinct·es identifié·es comme autistes : 32 / 237 (13,5 %).
Occurrences citées rattachées à la base AutiHub
122 / 270 (45,2 %)
Auteurices cité·es distinct·es rattaché·es : 93 / 237 (39,2 %)
Occurrences rattachées, non identifiées comme autistes
78 / 122 (63,9 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 78 / 270 (28,9 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 61 / 93 (65,6 %).
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