Expériences des parents autistes, de la conception à l'éducation d'enfants adultes : une revue systématique de la littérature

Titre original en anglais : Experiences of Autistic Parents, from Conception to Raising Adult Children: A Systematic Review of the Literature

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Thom-Jones, S., Brownlow, C., & Abel, S. (2024). Experiences of Autistic Parents, from Conception to Raising Adult Children: A Systematic Review of the Literature. Autism in Adulthood, 8(3), 284-304. https://doi.org/10.1089/aut.2024.0181

Date de publication: 22/10/2024 Ajout dans AutiHub: 06/07/2026 Type: Article Langue de l’article: Anglais
Source OpenAlex Source éditeur (DOI) Texte intégral

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Auteurs

Auteur·ices des publications
3
Auteur·ices de la publication identifié·es comme autistes
1 / 3 (33,3 %)
  1. Sandra Thom-Jones *
  2. Charlotte Brownlow
  3. Susan Abel

Résumé

Contexte : L'objectif de cette revue était d'explorer les expériences autistes de la parentalité, telles que décrites par des personnes autistes, de la conception aux relations avec des enfants adultes. En outre, nous avons cherché à déterminer si certains aspects de la parentalité et/ou certains groupes de parents sont sous-représentés dans la littérature déjà limitée sur la parentalité autiste. Méthodes : Nous avons effectué des recherches dans 10 bases de données clés afin de trouver des articles rapportant des données sur les perspectives et/ou les expériences de personnes autistes (ayant reçu un diagnostic formel ou s'identifiant elles-mêmes comme autistes) à n'importe quelle étape du parcours parental. Après la recherche initiale, nous avons entrepris un processus itératif de recherche en aval et en amont jusqu'à ce qu'aucun article pertinent supplémentaire ne soit identifié. Résultats : Nous avons identifié un total de 167 articles et inclus 44 articles dans la revue après l'examen des titres et résumés et l'examen des textes intégraux. Cela comprenait quatre articles de revue, 12 articles rapportant des études quantitatives et 28 rapportant des études qualitatives, 28 des 44 articles inclus ayant été publiés au cours des 3 dernières années. Des difficultés de communication ont été mises en évidence dans la majorité des études, en particulier concernant la communication avec les soins de santé et d'autres services en lien avec les enfants des participants. Les problèmes sensoriels associés à la grossesse, à l'accouchement et à la parentalité étaient également des thèmes fréquents. Cependant, les études ont également identifié des forces chez les parents autistes, notamment l'empathie envers leur(s) enfant(s), ainsi qu'un degré élevé de concentration et d'engagement envers le bien-être de l'enfant et de la famille. La majorité des participants aux études étaient des mères, des personnes blanches et des parents de bébés ou de jeunes enfants. Conclusions : Un thème cohérent dans l'ensemble des études était la nature externe de nombreux défis de la parentalité autiste et la nature interne de nombreuses forces. Ce n'est peut-être pas le fait d'être un parent autiste qui est en soi difficile, mais plutôt la manière dont les parents autistes sont mal compris et insuffisamment soutenus par des systèmes conçus pour des parents neurotypiques.

Background: The objective of this review was to explore autistic experiences of parenthood, as described by autistic people, from conception to relationships with adult children. In addition, we sought to identify whether particular aspects of parenting and/or particular groups of parents are underrepresented in the already sparse literature on autistic parenting. Methods: We searched 10 key databases for articles that reported data on the perspectives and/or experiences of autistic people (formally diagnosed or self-identifying) at any stage of the parenting journey. Following the initial search, we undertook an iterative process of forward and backward searching until no additional relevant articles were identified. Results: We identified a total of 167 articles and included 44 articles in the review following title and abstract review and full-text review. This consisted of four review articles, 12 articles that reported on quantitative studies, and 28 that reported on qualitative studies, with 28 of the 44 included articles published in the past 3 years. Communication challenges were highlighted across the majority of the studies, particularly in relation to communication with health care and other services in relation to participants’ children. Sensory issues associated with pregnancy, childbirth, and parenting were also common themes. However, studies also identified strengths of autistic parents including empathy with their child(ren), and a high degree of focus and commitment to child and family well-being. The majority of study participants were mothers, White, and parenting babies or young children. Conclusions: A consistent theme across the studies was the external nature of many of the challenges of autistic parenting and the internal nature of many of the strengths. It is perhaps not being an autistic parent that is in itself challenging, but rather the way that autistic parents are (mis)understood and (un)supported by systems designed for neurotypical parents.

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 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
80
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
10 / 80 (12,5 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
21 / 305 (6,9 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 21 / 115 (18,3 %). Auteurices cité·es distinct·es identifié·es comme autistes : 12 / 250 (4,8 %).
Occurrences citées rattachées à la base AutiHub
115 / 305 (37,7 %)
Auteurices cité·es distinct·es rattaché·es : 65 / 250 (26,0 %)
Occurrences rattachées, non identifiées comme autistes
94 / 115 (81,7 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 94 / 305 (30,8 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 53 / 65 (81,5 %).
2 entrées de bibliographie citée n’ont pas pu être entièrement enrichies à partir des métadonnées DOI.
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