« Je suis le maître de cérémonie et le jongleur de la famille » : expériences parentales de parents autistes pendant la pandémie de COVID-19

Titre original en anglais : “I'm the Family Ringmaster and Juggler”: Autistic Parents' Experiences of Parenting During the COVID-19 Pandemic

Cette publication est incluse dans le projet « Contributions académiques de personnes autistes sur l’autisme ». trois auteur·ices de cette publication sont identifié·es comme autistes dans le projet.

À propos de la mention auteur·ice autiste

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Heyworth, M., Brett, S., den Houting, J., Magiati, I., Steward, R., Urbanowicz, A., Stears, M., & Pellicano, E. (2022). “I'm the Family Ringmaster and Juggler”: Autistic Parents' Experiences of Parenting During the COVID-19 Pandemic. Autism in Adulthood, 5(1), 24-36. https://doi.org/10.1089/aut.2021.0097

Date de publication: 12/05/2022 Ajout dans AutiHub: 05/07/2026 Type: Article Langue de l’article: Anglais
Source éditeur (DOI) Texte intégral Source OpenAlex

Cette publication est intégrée dans AutiHub via :

Auteurs

Auteur·ices des publications
8
Auteur·ices de la publication identifié·es comme autistes
3 / 8 (37,5 %)
  1. Melanie Heyworth *
  2. Simon Brett
  3. Jacquiline den Houting *
  4. Iliana Magiati
  1. Robyn Steward *
  2. Anna Urbanowicz
  3. Marc Stears
  4. Elizabeth Pellicano

Résumé

Contexte : On sait peu de choses sur la parentalité autiste. La littérature existante suggère que les parents autistes peuvent trouver difficile de gérer les exigences quotidiennes de la parentalité et de la vie domestique. Bien que des recherches émergentes aient également mis en évidence des expériences parentales plus positives, une meilleure compréhension de la parentalité autiste est nécessaire. Objectif : Cette étude visait à comprendre les expériences parentales de parents autistes pendant la phase initiale de la pandémie de COVID-19. Méthodes : Trente-cinq parents autistes australiens (95 % de femmes) d'enfants autistes (âgés de 4 à 25 ans) ont participé à des entretiens semi-structurés conçus pour recueillir leurs expériences de vie pendant le confinement. Nous avons utilisé une analyse thématique réflexive selon une approche inductive (ascendante) afin d'identifier des significations récurrentes au sein de l'ensemble de données. Résultats : Les parents autistes ont évoqué à plusieurs reprises le fait que le confinement avait initialement apporté un certain soulagement face à l'intensité de leur vie habituelle consacrée aux soins de leurs enfants. Néanmoins, la plupart des parents autistes ont estimé que le « stress cumulatif » lié au fait d'essayer de tout concilier pendant le confinement s'était avéré très difficile, ce qui a finalement pesé sur la santé mentale des parents. Les parents savaient qu'ils avaient besoin de soutien, mais trouvaient difficile de solliciter l'aide de leurs soutiens sociaux habituels (y compris leurs amis autistes), et les soutiens formels étaient pratiquement inexistants. Par conséquent, ils se sentaient « très largement oubliés ». Néanmoins, ils ont décrit comment leurs liens avec leurs enfants se sont renforcés pendant le confinement, alors qu'ils se concentraient sur le fait de placer la « santé mentale avant toute autre chose » de leurs enfants. Conclusions : Notre analyse montre à quel point la vie conventionnelle peut être difficile pour les parents autistes. La parentalité exige de composer avec un ensemble distinctif d'exigences, qui sont habituellement partiellement gérables grâce aux soutiens informels sur lesquels de nombreux parents autistes s'appuient. L'absence relative de soutiens informels pendant la pandémie les a toutefois laissés dépendants de soutiens plus formels, qui n'ont pas été fournis. Des recherches sont nécessaires de toute urgence afin d'identifier les soutiens formels les plus efficaces pour les parents autistes, idéalement en partenariat avec les parents autistes eux-mêmes.

Background: Little is known about autistic parenthood. The literature that exists suggests that autistic parents can find it difficult to manage the everyday demands of parenting and domestic life. While emerging research has also highlighted more positive parenting experiences, greater understanding of autistic parenthood is needed. Objective: This study sought to understand autistic parents' parenting experiences during the initial phase of the COVID-19 pandemic. Methods: Thirty-five Australian autistic parents (95% women) of autistic children (aged 4-25 years) took part in semi-structured interviews designed to elicit their experiences of life during lockdown. We used reflexive thematic analysis using an inductive (bottom-up) approach to identify patterned meanings within the data set. Results: Autistic parents repeatedly spoke of how the lockdown brought some initial relief from the intensity of their usual lives caring for their children. Nevertheless, most autistic parents felt that the "cumulative stress" of trying to juggle everything during lockdown proved very challenging, which eventually took its toll on parents' mental health. Parents were aware that they needed support but found it difficult to reach out to their usual social supports (including autistic friends) for help, and formal supports were virtually nonexistent. Consequently, they felt "very much forgotten." Nevertheless, they described how their connections with their children grew stronger over lockdown as they focused on nurturing their children's "mental health ahead of everything else." Conclusions: Our analysis shows how challenging conventional life can be for autistic parents. Parenting requires grappling with a distinctive set of demands, which are usually partially manageable through the informal supports many autistic parents draw upon. The relative absence of informal supports during the pandemic, however, left them reliant on more formal supports, which were not forthcoming. Research is urgently needed to identify the most effective formal supports for autistic parents, ideally in partnership with autistic parents themselves.

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 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 : 02/10/2026 13:59.

Références citées
86
Avec un DOI
64
Sans DOI, à partir du texte brut de la bibliographie
22
12 / 86 (14,0 %) références citées comprennent au moins une personne identifiée comme autiste.
Références avec données à compléter
18 / 86 (20,9 %)
Références avec noms d’auteurices détectés
81 / 86 (94,2 %)
Sans nom d’auteurice détecté
5
Sans titre structuré
18
Sans identifiant stable
22
Références avec noms bruts d’auteurices restant à vérifier
5
Références avec problème de récupération des métadonnées externes
0
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
364
À partir du DOI ou de métadonnées externes
364
À partir du texte brut validé de la bibliographie
0
Noms bruts déjà validés
0
Noms bruts restant à vérifier
12
163 / 364 (44,8 %) noms sont associés à un·e auteurice déjà présent·e dans AutiHub. 201 / 364 (55,2 %) noms ne sont pas encore associés.
Noms associés à une personne identifiée comme autiste
26 / 364 (7,1 %)
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 : 26 / 163 (16,0 %). Personnes distinctes identifiées comme autistes : 19 / 311 (6,1 %).
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