ABSTRACT The aging process for parental caregivers of adult children with autism spectrum disorder (ASD) can be complicated and filled with worry about the unknown. This qualitative phenomenological study examined concerns and barriers of these parents that could inhibit their future planning. One-on-one interviews were conducted with 51 parents of adult children with ASD. Parents were older than age 50 years and their children were older than age 18 years. During the interview process, parents discussed future-oriented concerns related to their adult child’s care. Based on results of the content analysis from interview responses, four themes emerged from interview responses related to parents’ fears for the future, including difficulty identifying caregiving support for the future, barriers to making plans/decisions, fear of the unknown, and feeling the need to make plans and decisions now. Although many parents understood that plans for the future were needed, they often experienced difficulty in initiating the process. Some of their concerns caused stress that further inhibited their planning. To assist parents in planning, social workers need to be educated regarding parents’ unique needs to help them work through the planning, separate planning into manageable pieces, and provide support at each step of the process.

中文翻译：

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“我担心他的未来！” 成人自闭症儿童未来计划面临的挑战

摘要自闭症谱系障碍（ASD）的成年子女的父母照顾者的衰老过程可能很复杂，并且充满了对未知事物的担忧。这项定性的现象学研究考察了这些父母的担忧和障碍，这些障碍和障碍可能会阻碍他们的未来计划。与51名成年儿童的自闭症父母进行了一对一的访谈。父母年龄大于50岁，子女年龄大于18岁。在面试过程中，父母讨论了与成年子女的照料有关的面向未来的问题。根据访谈答复的内容分析结果，访谈答复中出现了与父母对未来的恐惧有关的四个主题，包括难以确定对未来的看护支持，制定计划/决定的障碍，对未知事物的恐惧，并感到现在需要制定计划和决策。尽管许多父母都知道需要将来的计划，但他们在启动该程序时常常遇到困难。他们的一些担忧导致压力，进一步限制了他们的计划。为了帮助父母进行计划，需要教育社会工作者有关父母的独特需求，以帮助他们完成计划，将计划分为可管理的部分并在过程的每个步骤中提供支持。