« 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

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Heyworth, M., Brett, S., Houting, J. d., 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
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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

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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 11:30.

Références citées
86
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
9 / 86 (10,5 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
19 / 364 (5,2 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 19 / 132 (14,4 %). Auteurices cité·es distinct·es identifié·es comme autistes : 13 / 313 (4,2 %).
Occurrences citées rattachées à la base AutiHub
132 / 364 (36,3 %)
Auteurices cité·es distinct·es rattaché·es : 90 / 313 (28,8 %)
Occurrences rattachées, non identifiées comme autistes
113 / 132 (85,6 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 113 / 364 (31,0 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 77 / 90 (85,6 %).
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