COVID-19, isolement social et santé mentale des personnes autistes et de leurs familles : une étude qualitative

Titre original en anglais : COVID-19, social isolation and the mental health of autistic people and their families: A qualitative study

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Pellicano, E., Brett, S., Houting, J. d., Heyworth, M., Magiati, I., Steward, R., Urbanowicz, A., & Stears, M. (2021). COVID-19, social isolation and the mental health of autistic people and their families: A qualitative study. Autism, 26(4), 914-927. https://doi.org/10.1177/13623613211035936

Date de publication: 06/08/2021 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
3 / 8 (37,5 %)
  1. Elizabeth Pellicano
  2. Simon Brett
  3. Jacquiline den Houting *
  4. Melanie Heyworth *
  1. Iliana Magiati
  2. Robyn Steward *
  3. Anna Urbanowicz
  4. Marc Stears

Résumé

La pandémie de COVID-19 et les réponses politiques qui y ont été apportées ont eu un effet néfaste sur la santé mentale de millions de personnes. Nous étudions ici son impact sur les personnes autistes et leurs familles à l’aide de méthodes qualitatives. Plus précisément, nous avons examiné les questions suivantes : comment les personnes autistes ont-elles vécu l’augmentation de l’isolement social durant le confinement initial ? Et comment leur santé mentale a-t-elle été affectée par le confinement ? Des chercheurs autistes et non autistes ont mené 144 entretiens semi-structurés avec des adultes autistes (n = 44), des parents d’enfants autistes (n = 84), y compris des parents autistes, et des jeunes autistes (n = 16). Nous avons utilisé une analyse thématique afin d’identifier les principaux thèmes. L’isolement social accru accompagnant la pandémie a eu un impact grave et préjudiciable sur la santé mentale et le bien-être subjectif des personnes autistes. Elles ont parlé du manque intense de leurs amis et de formes plus fortuites de lien social. Elles ont également rapporté une insatisfaction intense face au remplacement, dans les services de santé, des liens incarnés, de personne à personne, par des alternatives en ligne ou téléphoniques, parfois accompagné de graves conséquences négatives. Ces résultats révèlent l’importance fondamentale d’aider les personnes autistes à maintenir des contacts sociaux directs et fortuits pendant la pandémie et au-delà. Ils vont à l’encontre des théories établies qui minimisent le besoin de lien humain des personnes autistes et l’ampleur à laquelle elles ont été affectées par l’isolement social pendant les confinements. Résumé grand public Dans cette étude, nous montrons que les personnes autistes et leurs familles ont trouvé très difficile de faire face aux confinements pendant la pandémie de COVID-19. Des chercheurs autistes et non autistes ont parlé à 144 personnes, dont 44 adultes autistes, 84 parents d’enfants autistes et 16 jeunes autistes (âgés de 12 à 18 ans). Nous leur avons posé des questions sur leur vie quotidienne et leur santé mentale pendant le confinement. Les personnes nous ont dit qu’elles appréciaient d’avoir moins d’obligations et d’exigences par rapport à la vie avant la COVID-19. Elles avaient le sentiment que la vie était plus tranquille et plus calme. Mais elles nous ont également dit, encore et encore, à quel point rencontrer des personnes dans la vie réelle leur manquait, en particulier leurs amis, ainsi que leurs thérapeutes et intervenants de soutien. Les personnes nous ont dit que leur santé mentale avait souffert parce qu’elles n’avaient pas de contact avec leurs amis et les services. Fait important, de nombreuses personnes, y compris des chercheurs, pensent que les personnes autistes ne veulent pas d’amis ni être entourées de personnes. Mais nos résultats montrent que ce n’est pas vrai. De nombreuses personnes autistes veulent effectivement avoir des amis et être avec d’autres personnes. La santé mentale de certaines personnes a été affectée par le fait de ne pas pouvoir voir de personnes pendant la COVID-19. Les personnes autistes ont besoin de soutien dans de nombreux domaines de la vie afin de pouvoir continuer à socialiser et à voir leurs amis même pendant des périodes difficiles, comme les pandémies.

The COVID-19 pandemic and its policy responses have had a detrimental effect on millions of people’s mental health. Here, we investigate its impact on autistic people and their families using qualitative methods. Specifically, we addressed: how did autistic people experience an increase in social isolation during the initial lockdown? And how was their mental health impacted by lockdown? Autistic and non-autistic researchers conducted 144 semi-structured interviews with autistic adults (n = 44), parents of autistic children (n = 84) including autistic parents and autistic young people (n = 16). We deployed thematic analysis to identify key themes. The enhanced social isolation accompanying the pandemic had a serious and damaging impact on autistic people’s mental health and subjective wellbeing. They spoke of intensely missing friends and more incidental forms of social connection. They also reported intense dissatisfaction with the substitution of embodied, person-to-person connection in health services by online/telephone-based alternatives, sometimes accompanied by serious negative consequences. These findings reveal the fundamental importance of supporting autistic people to maintain direct and incidental social contact during the pandemic and beyond. They speak against established theories that downplay autistic people’s need for human connection and the extent to which they have been affected by social isolation during lockdowns. Lay abstract In this study, we show that autistic people and their families have found it very difficult to deal with the lockdowns during the COVID-19 pandemic. Autistic and non-autistic researchers spoke to 144 people, including 44 autistic adults, 84 parents of autistic children and 16 autistic young people (12–18 years old). We asked them about their everyday lives and mental health during lockdown. People told us that they enjoyed having fewer obligations and demands compared to pre-COVID-19 life. They felt that life was quieter and calmer. But people also told us again and again how much they missed meeting people in real life, especially their friends, and their therapists and support workers. People told us that their mental health suffered because they did not have contact with their friends and services. Importantly, many people (including researchers) think that autistic people do not want friends or to be around people. But our results show that is not true. Many autistic people do want friends and to be around other people. Some people’s mental health has been damaged by not being able to see people during COVID-19. Autistic people need support in many areas of life so they can keep socialising and seeing their friends even through difficult times, like pandemics.

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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 11:30.

Références citées
65
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
4 / 65 (6,2 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
13 / 331 (3,9 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 13 / 105 (12,4 %). Auteurices cité·es distinct·es identifié·es comme autistes : 11 / 310 (3,5 %).
Occurrences citées rattachées à la base AutiHub
105 / 331 (31,7 %)
Auteurices cité·es distinct·es rattaché·es : 86 / 310 (27,7 %)
Occurrences rattachées, non identifiées comme autistes
92 / 105 (87,6 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 92 / 331 (27,8 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 75 / 86 (87,2 %).
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