当前位置: X-MOL 学术Autism › 论文详情
Our official English website, www.x-mol.net, welcomes your feedback! (Note: you will need to create a separate account there.)
Short report: Autistic parents’ views and experiences of talking about autism with their autistic children
Autism ( IF 6.684 ) Pub Date : 2021-01-04 , DOI: 10.1177/1362361320981317
Laura Crane 1 , Lok Man Lui 1 , Jade Davies 1 , Elizabeth Pellicano 2
Affiliation  

Little is known about how parents talk about autism with their autistic children, particularly among families in which both a parent and child are autistic. Using an online survey, we gathered quantitative and qualitative data from 34 autistic parents (most of whom had told their children about their diagnosis) to address this knowledge gap. There was considerable overlap between the views and experiences of the autistic parents in this study and the largely non-autistic parent samples in previous research. Specifically, parents emphasised the importance of being open and honest about the diagnosis, disclosing the diagnosis as early as possible, individualising discussions to children’s needs and framing the diagnosis positively. There were, however, areas in which the views and experiences of the current sample differed from previous research on non-autistic samples. First, our sample of autistic parents outlined the benefits of their own experiential expertise, which they felt resulted in heightened understanding and empathy with their children. Second, our sample tended not to express concerns about disclosure potentially having a negative impact. Finally, our participants did not express a want or need for professional support with disclosure. Instead, they reported feeling well equipped to support their children using their own knowledge and lived experience.

Lay abstract

Previous research examining how parents talk about autism with their children has tended to focus on parents who are not autistic themselves. We collected information on this topic from 34 autistic parents of autistic children (most of whom had told their children about their diagnosis). We found similarities, but also differences, between the views and experiences of autistic parents in this research and those reported in previous research (in studies of largely non-autistic parents). Similarities include the following: it is important to be open and honest about the diagnosis; the diagnosis should be introduced/discussed as early as possible; discussions should be tailored to each individual child’s needs; and we should not overlook the challenges associated with autism, but it is important to focus on positive aspects too. Differences include the following: autistic parents used personal experiences in conversations about autism, which was felt to result in increased understanding and empathy with their children; autistic parents overwhelmingly focused on more positive aspects of an autism diagnosis; our sample did not express concerns that discussions could have negative consequences too (e.g. making children more anxious); and autistic parents did not want or need professional support to talk about autism with their children (instead, they felt confident in using their own knowledge/experiences to guide discussions).



中文翻译:

简短报告:自闭症父母与自闭症孩子谈论自闭症的观点和经验

对于父母如何与自闭症孩子谈论自闭症,人们知之甚少,尤其是在父母和孩子都是自闭症的家庭中。通过在线调查,我们从34位自闭症父母那里收集了定量和定性数据(其中大多数人已经将诊断告知了他们的孩子)来解决这一知识鸿沟。在这项研究中,自闭症父母的观点和经验与先前研究中的大部分非自闭症父母样本之间存在相当多的重叠。尤其是,父母强调了对诊断坦诚相待,尽早披露诊断,针对儿童需求进行个性化讨论并积极制定诊断的重要性。但是,有 当前样本的观点和经验与以前对非孤独症样本的研究有所不同的领域。首先,我们的自闭症父母样本概述了他们自己的经验专业知识的好处,他们认为这会增强他们对孩子的理解和同理心。其次,我们的样本倾向于不表达对可能产生负面影响的披露的担忧。最后,我们的参与者没有表达出对专业支持的需求。相反,他们报告说自己有足够的条件来利用自己的知识和生活经验来支持自己的孩子。我们的样本倾向于不表达对可能产生负面影响的信息披露的担忧。最后,我们的参与者没有表达出对专业支持的需求。相反,他们报告说自己有足够的条件来利用自己的知识和生活经验来支持孩子。我们的样本倾向于不表达对可能产生负面影响的信息披露的担忧。最后,我们的参与者没有表达出对专业支持的需求。相反,他们报告说自己有足够的条件来利用自己的知识和生活经验来支持自己的孩子。

放置摘要

先前研究父母如何与孩子谈论自闭症的研究倾向于将重点放在本身不是自闭症的父母身上。我们从34位自闭症儿童的自闭症父母那里收集了有关此主题的信息(其中大多数人已将其诊断告知孩子)。我们发现自闭症父母在本研究中的观点和经验与先前研究(在大部分非自闭症父母的研究中)报道的观点和经验之间存在相似之处,但也存在差异。相似之处包括以下几点:对诊断要公开和诚实很重要;诊断应尽早引入/讨论;讨论应适合每个孩子的需求;我们不应该忽视与自闭症相关的挑战,但是也必须关注积极方面。差异包括以下几点:自闭症父母在关于自闭症的对话中使用了个人经验,这被认为会导致他们对孩子的理解和同情心增加;自闭症父母非常关注自闭症诊断的更多积极方面;我们的样本并未表示担心讨论也会带来负面影响(例如,使孩子更加焦虑);自闭症父母不希望或需要专业支持与孩子谈论自闭症(相反,他们对使用自己的知识/经验来引导讨论充满信心)。自闭症父母非常关注自闭症诊断的更多积极方面;我们的样本并未表示担心讨论也会带来负面影响(例如,使孩子更加焦虑);自闭症父母不希望或需要专业支持与孩子谈论自闭症(相反,他们对使用自己的知识/经验来引导讨论充满信心)。自闭症父母非常关注自闭症诊断的更多积极方面;我们的样本并未表示担心讨论也会带来负面影响(例如,使孩子更加焦虑);自闭症父母不希望或需要专业支持与孩子谈论自闭症(相反,他们对使用自己的知识/经验来引导讨论充满信心)。

更新日期:2021-01-06
down
wechat
bug