Parenting a Child with Asperger’s Syndrome

Sutiyah Nova Irawati
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Abstract

This study provides an interpretive description of parents’ experiences of raising a child with Asperger’s syndrome (AS). Thirteen parents (eight mothers; five fathers) from eight families participated. Data were com-prised of repeated semi-structured interviews with parents. The core concept of a ‘‘balancing act’’ was identified, and included two key themes: losing our footing and regaining our balance. Parents lost their footing when they experi-enced escalating challenges and lack of parenting success. They persevered over many years to find an answer to their children’s problems. The diagnosis of AS was a turning point that initiated the process of ‘‘regaining our balance,’’ enabling parents to better understand both their children and the condition. In this part of the process parents gradually experienced parenting success and rebuilt their confidence. The results of this study suggest that parenting a child with AS is a complex and evolving process in which parents struggle to find the right balance for themselves, their child with AS, and their family as a whole. Parenting encompassed joys and sorrows and an important part of finding balance included the ability to acknowledge both the positive qualities of their children and the challenges of managing the condition. Lack of professional recognition of AS, as well as blame and stigma, negatively affected these participants’ ability to parent and points to the critical need for further education of teaching and health professionals.
养育患有亚斯伯格综合症的孩子
本研究对父母抚养亚斯伯格综合症(AS)儿童的经历进行了解释性描述。13对父母(8位母亲;来自8个家庭的5位父亲参与了研究。数据由反复与家长进行的半结构化访谈组成。确定了“平衡行为”的核心概念,包括两个关键主题:失去立足点和恢复平衡。当父母经历不断升级的挑战和缺乏成功的育儿经验时,他们就会失去立足点。为了解决孩子们的问题,他们坚持了许多年。AS的诊断是一个转折点,开启了“恢复平衡”的过程,使父母能够更好地了解他们的孩子和病情。在这一过程中,父母们逐渐体验到育儿的成功,并重建了信心。这项研究的结果表明,养育一个患有AS的孩子是一个复杂而不断发展的过程,在这个过程中,父母努力为自己、孩子和整个家庭找到正确的平衡。为人父母包含了欢乐和悲伤,找到平衡的一个重要部分包括承认孩子的积极品质和管理条件的挑战的能力。缺乏对阿斯伯格综合症的专业认识,以及指责和污名,对这些参与者为人父母的能力产生了负面影响,这表明迫切需要对教学和卫生专业人员进行进一步教育。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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