Faire ressentir la différence : perspectives des familles sur les réponses externes à l’autisme et leurs répercussions sur le bien-être et les relations familiales

Titre original en anglais : Made to feel different: Families perspectives on external responses to autism and the impacts on family well-being and relationships

Cette publication est incluse dans le projet « Contributions académiques de personnes autistes sur l’autisme ». un auteur·ice de cette publication est identifié·e comme autiste dans le projet.

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Trew, S. (2024). Made to feel different: Families perspectives on external responses to autism and the impacts on family well-being and relationships. Autism, 28(8), 2120-2139. https://doi.org/10.1177/13623613231221684

Publication date: 19/01/2024 Ajout dans AutiHub: 16/09/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
1
Auteur·ices de la publication identifié·es comme autistes
1 / 1 (100,0 %)
  1. Sebastian Trew *

Résumé

Cette étude visait à examiner l’impact de facteurs externes sur les expériences et les relations familiales d’adolescents autistes et de leurs familles. Une approche qualitative a été utilisée, avec des entretiens approfondis menés auprès de 30 participants, dont des adolescents autistes, des frères et sœurs et des parents issus de familles comptant un adolescent autiste. Les résultats suggèrent que les facteurs externes influencent considérablement le bien-être des adolescents autistes et de leurs familles. L’environnement scolaire a été identifié comme un facteur important, la surcharge sensorielle, le harcèlement et les interactions défavorables avec les enseignants ayant une incidence négative sur la santé mentale et la qualité des relations familiales des participants. En outre, l’étude a mis en évidence que l’isolement et la stigmatisation constituaient des préoccupations majeures pour les familles, ce qui suggère la nécessité d’efforts publics visant à sensibiliser et à améliorer la compréhension de l’autisme. Le manque de soutien et de services appropriés a également été identifié comme un défi important auquel les familles sont confrontées. L’étude souligne la nécessité d’approches centrées sur la personne dans la prestation de services, ce qui implique d’inclure les adolescents autistes et leurs familles dans la conception et la mise en œuvre du soutien et des services. L’étude recommande une collaboration entre les écoles, les prestataires de services et les familles, ainsi que des efforts pour promouvoir des environnements favorables à l’autisme dans les écoles et la communauté au sens large. Résumé grand public L’influence de l’environnement sur différents groupes de personnes en situation de handicap a rarement été étudiée dans le contexte des troubles du neurodéveloppement, tels que l’autisme, à l’adolescence. Cette étude a examiné comment les réponses externes à l’autisme affectent les expériences, les résultats et les relations familiales des adolescents autistes et des membres de leur famille, notamment les frères et sœurs et les parents. Cette étude contribue aux connaissances sur les facteurs qui participent au désavantage social et à l’exclusion auxquels sont confrontés les adolescents autistes et leurs familles dans leurs communautés. Des entretiens avec 30 participants issus de familles comptant un adolescent autiste montrent que les facteurs externes ont une forte incidence sur le bien-être des adolescents autistes et de leurs familles. L’environnement scolaire, y compris la surcharge sensorielle, le harcèlement et les interactions négatives avec les enseignants, s’est révélé être un facteur clé influençant négativement la santé mentale et les relations familiales. L’étude a également révélé que l’isolement et la stigmatisation sont des préoccupations majeures pour les familles, indiquant l’importance de campagnes de sensibilisation du public pour améliorer la compréhension de l’autisme. En outre, le manque de soutien et de services adéquats a présenté des défis importants pour les familles. L’étude souligne l’importance d’approches centrées sur la personne pour la prestation de services, lesquelles impliquent d’inclure les personnes autistes et leurs familles dans la conception et la mise en œuvre du soutien.

This study aimed to investigate the impact of external factors on the experiences and family relationships of autistic adolescents and their families. A qualitative approach was used, with in-depth interviews conducted with 30 participants, including autistic adolescents, siblings and parents from within families with an autistic adolescent family member. The findings suggest that external factors significantly influence the well-being of autistic adolescents and their families. The school environment was identified as a significant factor, with sensory overload, bullying and adverse interactions with teachers having a negative impact on the mental health and quality of family relationships for participants. In addition, the study highlighted that isolation and stigma were major concerns for families, suggesting a need for public efforts to raise awareness and understanding of autism. The lack of appropriate support and services was also identified as a significant challenge that families face. The study highlights the need for person-centred approaches to service provision, which involves including autistic adolescents and their families in the design and delivery of support and services. The study recommends collaboration among schools, service providers, and families, as well as efforts to promote autism-friendly environments in schools and the broader community. Lay abstract The influence of the environment on different groups of people with disabilities has rarely been studied in the context of neurodevelopmental disabilities, such as autism, in adolescence. This study explored how external responses to autism affect the experiences, outcomes and family relationships of autistic adolescents and their family members, including siblings and parents. This study adds to the knowledge of factors that contribute to the social disadvantage and exclusion autistic adolescents and their families face in their communities. Interviews with 30 participants from families with an autistic adolescent show that external factors greatly impact the well-being of autistic adolescents and their families. The school environment, including sensory overload, bullying and negative interactions with teachers, was found to be a key factor that negatively influenced mental health and family relationships. The study also revealed that isolation and stigma are major concerns for families, indicating the importance of public awareness campaigns to increase understanding of autism. In addition, the lack of adequate support and services presented significant challenges for families. The study emphasises the importance of person-centred approaches to providing services, which involve including autistic individuals and their families in designing and delivering support.

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 : 19/09/2026 01:01.

Références citées
149
Avec un DOI
133
Sans DOI, à partir du texte brut de la bibliographie
12
9 / 149 (6,0 %) références citées comprennent au moins une personne identifiée comme autiste.
Références avec données à compléter
8 / 149 (5,4 %)
Références avec noms d’auteurices détectés
146 / 149 (98,0 %)
Sans nom d’auteurice détecté
3
Sans titre structuré
8
Sans identifiant stable
12
Références avec noms bruts d’auteurices restant à vérifier
3
Références avec problème de récupération des métadonnées externes
1
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
528
À partir du DOI ou de métadonnées externes
528
À partir du texte brut validé de la bibliographie
0
Noms bruts déjà validés
0
Noms bruts restant à vérifier
3
152 / 528 (28,8 %) noms sont associés à un·e auteurice déjà présent·e dans AutiHub. 376 / 528 (71,2 %) noms ne sont pas encore associés.
Noms associés à une personne identifiée comme autiste
17 / 528 (3,2 %)
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 : 17 / 152 (11,2 %). Personnes distinctes identifiées comme autistes : 15 / 491 (3,1 %).
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