« Je ne pense pas qu’ils comprennent la réalité de l’autisme » : les expériences vécues d’adultes autistes au Japon

Titre original en anglais : ‘I don’t think they understand the reality of autism’: The lived experiences of autistic adults in Japan

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Harada, N., Pellicano, E., Kumagaya, S., Ayaya, S., Asada, K., & Senju, A. (2025). ‘I don’t think they understand the reality of autism’: The lived experiences of autistic adults in Japan. Autism, 29(11), 2715-2726. https://doi.org/10.1177/13623613251355303

Date de publication: 20/07/2025 Ajout dans AutiHub: 06/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
6
Auteur·ices de la publication identifié·es comme autistes
1 / 6 (16,7 %)
  1. Nanami Harada
  2. Elizabeth Pellicano
  3. Shinichiro Kumagaya
  1. Satsuki Ayaya *
  2. Kosuke Asada
  3. Atsushi Senju

Résumé

La plupart des recherches sur l’autisme ont été menées dans des contextes occidentaux, ce qui signifie que nous savons peu de choses sur les expériences vécues des adultes autistes dans un large éventail de contextes socioculturels et de pays. Cette étude est, à notre connaissance, la première à examiner les expériences vécues d’adultes japonais autistes, en recueillant leurs expériences de grandir en étant autistes depuis l’école primaire jusqu’au moment de l’entretien. Nous avons mené des entretiens semi-structurés avec sept adultes japonais autistes, qui avaient reçu un diagnostic clinique dans leur vingtaine et leur trentaine. Au moyen d’une analyse thématique réflexive, nous avons identifié quatre thèmes, notamment : (1) des personnes se sentant différentes et incomprises, (2) les livres, les médecins ou d’autres personnes autistes facilitant le parcours vers le diagnostic, (3) les nombreuses émotions mêlées émanant du diagnostic et (4) un fort désir d’être accepté. Toutes les personnes interrogées ont connu des difficultés importantes tout au long de leur vie, y compris un manque d’acceptation de leur diagnostic par leurs familles. Bien que cela ait pesé sur la santé mentale des personnes interrogées, elles souhaitaient être comprises par les autres et lutter contre la stigmatisation. Davantage d’efforts sont nécessaires pour accroître les connaissances, la compréhension et l’acceptation de l’autisme au Japon à travers le prisme de la neurodiversité et avec la contribution de la communauté autiste. Résumé simplifié Nous en savons de plus en plus sur ce que signifie être autiste et sur les expériences des personnes autistes à l’école et au travail. Mais la plupart des études proviennent de cultures occidentales, en particulier du Royaume-Uni et des États-Unis, ce qui signifie que nous savons peu de choses sur ce que signifie être autiste dans d’autres cultures, y compris les cultures d’Asie de l’Est. Dans cette étude, pour la première fois, nous avons étudié les expériences de vie, de l’école à l’emploi, d’adultes japonais autistes. Nous avons interrogé sept adultes japonais autistes, qui avaient reçu leur diagnostic clinique dans leur vingtaine et leur trentaine, sur leurs expériences selon leur propre point de vue. Nous avons relevé quatre idées principales ou « thèmes » : (1) des personnes se sentant différentes et incomprises, (2) les livres, les médecins ou d’autres personnes autistes facilitant le parcours vers le diagnostic, (3) les nombreuses émotions mêlées résultant de l’obtention d’un diagnostic d’autisme et (4) un fort désir d’être accepté. Tous les participants ont subi du harcèlement et se sont sentis différents des autres autour d’eux dès leur plus jeune âge. Certains participants étaient heureux de recevoir leur diagnostic d’autisme, qui leur permettait de mieux se comprendre, tandis que d’autres éprouvaient des sentiments mitigés, tels qu’un sentiment de désespoir parce que l’autisme n’a pas de remède. Nos résultats concordent avec les recherches occidentales antérieures. Nous avons également constaté certaines expériences distinctives chez les participants japonais, qui ont été confrontés à une stigmatisation importante, potentiellement en raison d’attitudes négatives envers l’autisme et le handicap, ainsi que des attentes et règles sociales japonaises. Les recherches futures devraient se concentrer sur les besoins des personnes autistes au Japon et travailler avec elles afin d’accroître la compréhension, la sensibilisation et l’acceptation de l’autisme.

Most autism research has been conducted in Western settings, which means that we know little about the lived experiences of autistic adults across a wide range of sociocultural contexts and countries. This study is, to our knowledge, the first to examine the lived experiences of autistic Japanese adults, eliciting their experiences of growing up autistic from their time at elementary school to the time of interview. We used semi-structured interviews with seven autistic Japanese adults, who had been clinically diagnosed in their 20s and 30s. Using reflexive thematic analysis, we identified four themes, including (1) people feeling different and misunderstood, (2) the books, doctors or other autistic people enabling the journey towards diagnosis, (3) the many and mixed emotions that emanated from the diagnosis and (4) a strong desire to be accepted. All interviewees experienced significant hardship throughout their lives, including a lack of acceptance of their diagnosis from their families. While this took its toll on the interviewees' mental health, they desired to be understood by others and to address stigma. More efforts are needed to increase the knowledge, understanding and acceptance of autism in Japan through the lens of neurodiversity and with the input of the autistic community.Lay AbstractWe know more and more about what it's like to be autistic and autistic people's experiences at school and at work. But most studies are from Western cultures, especially the United Kingdom and the United States, which means we know little about what it's like to be autistic in other cultures, including East Asian cultures. In this study, for the first time, we investigated the life experiences from school to employment of Japanese autistic adults. We asked seven Japanese autistic adults, who had received their clinical diagnosis in their 20s and 30s, about their experiences from their own perspective. We found four major ideas or 'themes': (1) people feeling different and misunderstood, (2) the books, doctors or other autistic people enabling the journey towards diagnosis, (3) the many, mixed emotions that came from getting an autism diagnosis and (4) a strong desire to be accepted. All participants experienced bullying and felt different from others around them from an early age. Some participants were happy to receive their autism diagnosis, which made them understand themselves better, while others had mixed feelings - such as feeling hopeless because autism has no cure. Our findings are consistent with previous Western research. We also found some distinctive experiences from Japanese participants, who faced a significant amount of stigma, potentially because of negative attitudes towards autism/disability and Japanese social expectations and rules. Future research should focus on the needs of autistic people in Japan and work with them to increase understanding, awareness and acceptance of autism.

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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
64
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
13 / 64 (20,3 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
29 / 248 (11,7 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 29 / 120 (24,2 %). Auteurices cité·es distinct·es identifié·es comme autistes : 23 / 212 (10,8 %).
Occurrences citées rattachées à la base AutiHub
120 / 248 (48,4 %)
Auteurices cité·es distinct·es rattaché·es : 87 / 212 (41,0 %)
Occurrences rattachées, non identifiées comme autistes
91 / 120 (75,8 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 91 / 248 (36,7 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 64 / 87 (73,6 %).
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