McMaster University, Canada.
University of Calgary, Canada.
Autism. 2020 Feb;24(2):470-483. doi: 10.1177/1362361319874647. Epub 2019 Sep 11.
Parents of children with autism often learn about their child's autism before diagnosis and can spend long periods seeking care (including assessment) before receiving a diagnosis. Meanwhile, parents' readiness to engage in care at this early stage can vary from parent to parent. This study revealed how parents come to understand their child has autism-on their own terms, rather than from just talking to professionals. It also explained how parents' growing awareness of their child's autism leads them to feel more motivated to engage in care by seeking information and pursuing services. Four "optional steps" described how parents' growing readiness to engage in care at this early stage can vary, depending on their personal process. The results suggest ways that professionals can be more sensitive (a) to parents' varying awareness of autism and (b) to their varying readiness for being involved in early care. They also suggest ways to tailor parent supports to their individual situation and design care that is more family centered. Not all parents want high levels of involvement. Depending on their personal process, some parents may need care and support that is directed at them before feeling ready for professionals to engage them in care directed at the child.
自闭症儿童的父母通常在诊断前就了解到孩子的自闭症，可以在接受诊断前花费很长时间寻求治疗（包括评估）。同时，父母在这个早期阶段接受治疗的准备程度也因人而异。这项研究揭示了父母如何根据自己的理解来了解孩子患有自闭症，而不仅仅是与专业人士交谈。它还解释了父母对孩子自闭症的认识不断提高，如何使他们更有动力通过寻求信息和寻求服务来参与治疗。四个“可选步骤”描述了父母在这个早期阶段接受治疗的准备程度如何因个人过程而异。研究结果表明，专业人员可以更加敏感地（a）了解父母对自闭症的不同认识，以及（b）了解他们对早期参与的不同准备程度。它们还提出了一些方法，可以根据父母的个人情况来调整家长支持，并设计以家庭为中心的护理。并非所有父母都希望高度参与。根据他们的个人过程，一些父母可能需要在感到准备好让专业人士参与针对孩子的护理之前，接受针对他们的护理和支持。
