Rabba Aspasia Stacey, Smith Jodie, Hall Gabrielle, Alexander Vanessa, Batty Kate, Datta Poulomee, Goodall Emma, Heyworth Melanie, Lamb Siobhan, Lawson Wenn, Lilley Rozanna, Reid Katy, Syeda Najeeba, Pellicano Elizabeth
Macquarie University, Australia.
Monash University, Australia.
Autism. 2025 Apr;29(4):1034-1046. doi: 10.1177/13623613241297223. Epub 2024 Nov 24.
Successful partnerships between families and schools can substantially improve children's success in and out of school. Yet parents of autistic children often report considerable challenges with their children's education. Almost no research, however, has examined autistic parents' own experiences. We, therefore, sought the views and experiences of autistic parents' interactions with schools for their autistic children. We conducted semi-structured interviews with 31 autistic mothers of autistic children engaged in education in Australia. We analysed the data using reflexive thematic analysis. Autistic mothers repeatedly expressed feeling like they were in a 'war zone', fighting ongoing battles to gain the necessary support for their autistic child and were 'sick of being [viewed as] the problem'. They also felt that their expertise as parents - and experiential expertise as autistic parents - was often overlooked or ignored. All of this had negative effects on their and their children's mental health. Despite these negative experiences, autistic mothers who had experienced positive interactions with schools highlighted the importance of mutual respect in establishing and maintaining successful school partnerships and how their own determination and self-advocacy helped to foster these relationships. This research sheds light on the critical ingredients of effective home-school partnerships for autistic families.Lay abstractGood relationships between families and schools make a difference to children's learning - and the same goes for autistic children. But parents of autistic children often find it very stressful interacting with teachers and school staff. In this study, we focused on autistic parents of autistic children. We wanted to know about their experiences of interacting with schools and the impact these had on them and their children. We spoke to 31 autistic mothers of autistic children about their experiences. They told us that they felt they were constantly fighting with schools to get the support needed for their autistic children and compared it to like being in a 'war zone'. They were 'sick of being [viewed as] the problem' and felt that their views and autistic expertise were not taken seriously by teachers and schools. This was damaging to their autistic children's mental health as well as their own. Autistic mothers did share some positive experiences too. They spoke about the value of mutual respect and its impact on successful school partnerships. Autistic mothers also spoke about standing up for themselves and their children and how this advocacy and self-advocacy helped them to build better relationships with schools. This research showed how difficult it can be for autistic families to interact with teachers and schools and the impact this can have on the whole family. It also showed us that strong, trusting relationships between school and families are possible - when autistic parents feel safe, and when their knowledge and lived experience are taken seriously by educators.
家庭与学校之间成功的合作关系能够显著提升孩子在学校内外的成就。然而,自闭症儿童的家长经常表示在孩子的教育过程中面临诸多挑战。然而,几乎没有研究考察过自闭症患儿家长自身的经历。因此,我们探寻了自闭症患儿家长与孩子学校互动的观点和经历。我们对澳大利亚31位参与孩子教育的自闭症患儿母亲进行了半结构化访谈。我们运用反思性主题分析法对数据进行了分析。自闭症患儿母亲们反复表达了她们感觉自己身处“战区”,为了给自闭症孩子争取必要的支持而持续斗争,并且“厌倦了被当作问题所在”。她们还觉得自己作为家长的专业知识——以及作为自闭症患儿家长的经验性专业知识——常常被忽视或无视。所有这些都对她们自己以及孩子的心理健康产生了负面影响。尽管有这些负面经历,但那些与学校有过积极互动的自闭症患儿母亲强调了相互尊重在建立和维持成功的家校合作关系中的重要性,以及她们自己的决心和自我倡导如何有助于促进这些关系。这项研究揭示了自闭症家庭有效家校合作关系的关键要素。
摘要
家庭与学校之间的良好关系对孩子的学习有重要影响——自闭症孩子也是如此。但自闭症患儿的家长常常发现与教师和学校工作人员互动压力很大。在这项研究中,我们聚焦于自闭症患儿的家长。我们想了解他们与学校互动的经历以及这些经历对他们自己和孩子的影响。我们与31位自闭症患儿的母亲交谈了她们的经历。她们告诉我们,她们感觉自己一直在与学校斗争,为自闭症孩子争取所需的支持,把这比作身处“战区”。她们“厌倦了被当作问题所在”,觉得教师和学校没有认真对待她们的观点和自闭症方面的专业知识。这对她们自闭症孩子的心理健康以及她们自己的心理健康都造成了损害。自闭症患儿母亲也分享了一些积极的经历。她们谈到了相互尊重的价值及其对成功的家校合作关系的影响。自闭症患儿母亲还谈到为自己和孩子挺身而出,以及这种倡导和自我倡导如何帮助她们与学校建立更好的关系。这项研究表明自闭症家庭与教师和学校互动有多困难,以及这对整个家庭会产生怎样的影响。它还向我们表明,当自闭症患儿家长感到安全,并且他们的知识和生活经验被教育工作者认真对待时,学校与家庭之间建立牢固、信任的关系是有可能的。