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被视为异类:家庭对外界对自闭症反应的看法,以及这些反应对家庭幸福感和人际关系的影响。

Made to feel different: Families perspectives on external responses to autism and the impacts on family well-being and relationships.

机构信息

Australian Catholic University, Australia.

出版信息

Autism. 2024 Aug;28(8):2120-2139. doi: 10.1177/13623613231221684. Epub 2024 Jan 19.

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.

摘要

在神经发育障碍(如自闭症)的背景下,环境对不同残疾人群体的影响很少被研究。本研究探讨了外界对自闭症的反应如何影响自闭症青少年及其家庭成员(包括兄弟姐妹和父母)的经历、结果和家庭关系。这项研究增加了对导致自闭症青少年及其家庭在社区中面临社会劣势和排斥的因素的认识。对来自有自闭症青少年家庭的 30 名参与者的访谈表明,外部因素极大地影响了自闭症青少年及其家庭的幸福感。学校环境,包括感官超负荷、欺凌和与教师的负面互动,被发现是对心理健康和家庭关系产生负面影响的关键因素。研究还表明,孤立和污名化是家庭的主要关注点,这表明需要开展公众宣传活动,以提高对自闭症的认识。此外,缺乏足够的支持和服务是家庭面临的重大挑战。该研究强调了采用以个人为中心的方法提供服务的重要性,这涉及让自闭症患者及其家人参与支持的设计和提供。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/0b4a/11301965/840ba48677af/10.1177_13623613231221684-fig1.jpg

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