Autistic Adolescents' and Their Parents' Visions for the Future: How Aligned are They?
Autistic Adolescents' and Their Parents' Visions for the Future: How Aligned are They?
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DOI：
10.1089/aut.2020.0061
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发表时间：
2022-03
期刊：
影响因子：
--
通讯作者：
Henderson J
中科院分区：
文献类型：
--
作者：
Kirby AV;Diener ML;Dean EE;Darlington AN;Myers A;Henderson J
个人对未来的期望会影响他们为实现目标所做的决定。现有的研究表明，自闭症青少年的父母对未来的期望与他们在中学后取得的成果有很大关系。然而，关于青少年自己的期望以及自闭症青少年和他们的父母对未来达成一致的程度的研究较少。我们使用评分程序对半结构化采访数据进行量化，这些数据涉及46对青少年-父母二人组对自闭症青少年未来的展望，涉及成年后的三个领域(高等教育、就业和生活状况)。青少年年龄在13-19岁之间(85.1%为男性)，能够参加口头面试。我们对二人组的采访进行了评分，根据他们对青少年中等教育后的未来达成一致或不同意的程度，以及谁的期望更高(当他们不同时)。同意和不同意的比例没有显著差异，显示出适度的一致。值得注意的是，不到一半(37.0%-47.8%)的青少年及其父母部分或强烈地同意他们对这三个领域中每一个领域的未来的展望。只有17.4%的二人在所有三个领域部分或强烈同意，23.9%的人在任何领域都不同意。当青少年和父母的观点不同时，青少年在所有三个领域都有明显更高的期望(PS<；0.01)。未来的研究需要检验自闭症青少年和父母对未来愿景的差异，并探索干预措施，以支持家庭为共同的未来目标而努力。这项研究促进了越来越多的文献，强调在研究中纳入自闭症青少年的观点以及让他们在自己的过渡规划中发挥积极和实质性作用的重要性。研究表明，自闭症青少年和父母对未来的思考方式会影响他们成年后的生活。在为成年生活做准备时，家庭会根据他们的预期和希望(他们的“期望”)做出决定。然而，父母和青少年的期望可能并不相同。重要的是要知道这些预期有何相似之处和不同之处。在这项研究中，我们开始研究自闭症青少年在准备成年时对自己的期望，并将这些期望与他们父母的期望进行比较。我们关注了成人生活的三个方面的期望：高等教育、就业和生活安排。我们采访了46对父母和自闭症青少年。我们分别询问了每一位父母和青少年对成年的期望。然后，我们对这些信息进行评估，以确定父母和青少年之间的一致性有多大。我们发现，父母和青少年同意和不同意的次数大致相同。我们认为这是一个中等水平的协议。一些夫妇在所有三个领域(高等教育、就业、生活安排)都达成了一致。然而，大约四分之一的人在任何领域都不同意。在大多数情侣中，青少年希望他们在成年后比他们的父母更独立。其他研究着眼于父母和自闭症青年的视角，但这项研究直接比较了他们对未来的愿景，这是基于他们自己的语言描述。父母和子女之间的适度和谐在有残疾和没有残疾的青年家庭中都可以看到。我们的结果表明，自闭症青少年和家庭在这方面与其他家庭相似。早些时候的研究也得出结论，自闭症青少年比父母对自己的未来更乐观。我们测量了这一点，并确认大多数纳入的参与者都是如此。这项研究对46对父母-青少年的定性访谈文本进行了系统的研究。然而，我们没有足够的参与者来找出年龄或性别等特征是否影响了亲子之间的一致性。我们也没有询问青少年参与者是否同意他们父母的观点。我们通过口头访谈收集信息，其中排除了言语交流有限的参与者。我们的参与者在种族、民族或社会经济背景上也是相似的。需要对来自不同背景的参与者进行更多的研究。这项研究提供了证据，证明父母和青少年对成年的期望往往不同。重要的是，让青少年参与关于他们未来的讨论和规划。否则，提供者可能会把重点放在父母的期望上，这可能不会完全支持青少年。这些发现还表明，需要进行研究，帮助父母和自闭症青少年就他们对未来的目标和渴望进行沟通。
The expectations individuals hold about the future can influence the decisions they make toward achieving their goals. Existing research suggests parents of autistic adolescents hold expectations about the future that are significantly related to the postsecondary outcomes they achieve. However, less research exists about the adolescents’ own expectations and the extent to which autistic adolescents and their parents agree about the future. We used a scoring procedure to “quantitize” semi-structured interview data about what 46 adolescent-parent dyads envisioned for the future of the autistic adolescent across three areas of adulthood (postsecondary education, employment, and living situation). Adolescents ranged in age from 13-19 years (85.1% male) and were able to participate in a verbal interview. We scored the dyads’ interviews on the extent to which they agreed or disagreed about the postsecondary future of the adolescent, as well as whose expectations were higher (when they differed). Proportions of agreement and disagreement did not significantly differ, demonstrating moderate agreement. Notably, fewer than half (37.0-47.8%) of adolescents and their parents partly or strongly agreed about their visions for the future in each of the three areas. Only 17.4% of dyads partly or strongly agreed across all three areas, and 23.9% did not agree in any area. When adolescents’ and parents’ views differed, adolescents were significantly more likely to have a higher expectation across all three areas (ps < 0.01). Future research is needed to examine differences in autistic adolescents’ and parents’ visions of the future, and to explore interventions to support families to work toward shared goals for the future. This study contributes to a growing body of literature emphasizing the importance of including the perspectives of autistic adolescents in research and for them to have an active and substantial role in their own transition planning. Research shows that the ways that autistic adolescents and parents think about the future can affect their lives in adulthood. When preparing for adult life, families make decisions based on what they expect and want to happen (their “expectations”). However, parent and adolescent expectations may not be the same. It is important to know how those expectations are similar and different. In this study, we set out to examine what autistic adolescents expect for themselves as they prepare for adulthood and compare those to the expectations of their parents. We focused on expectations in three areas of adult life: higher education, employment, and living arrangements. We interviewed 46 pairs of parents and autistic adolescents. We asked each parent and adolescent separately about their expectations for adulthood. Then, we evaluated the information to determine how much agreement there was between parents and adolescents. We found that parents and adolescents agreed and disagreed about the same number of times. We consider this a moderate level of agreement. Some pairs agreed in all three areas (higher education, employment, living arrangements). However, about one-fourth of the pairs did not agree in any of the areas. In most pairs, adolescents expected they would be more independent in adulthood than their parents did. Other studies have looked at parent and autistic youth perspectives, but this study directly compared their visions of the future based on descriptions in their own words. Moderate agreement between parents and children is seen in families of youth with and without disabilities. Our results show that autistic youth and families are similar to other families in this way. Earlier studies have also concluded that autistic adolescents think more positively about their futures than parents do. We measured that, and confirmed it was true for most of the included participants. This study allowed for a structured look at qualitative interview text for 46 parent-adolescent pairs. However, we did not have enough participants to find out if characteristics such as age or gender influenced parent-adolescent agreement. We also did not ask adolescent participants whether they agreed with their parents. We collected information through spoken interviews, which excluded participants with limited speech communication. Our participants were also similar in their racial, ethnic, or socioeconomic backgrounds. More research is needed with participants from different backgrounds. This study provides evidence that parents and adolescents often have different expectations for adulthood. It is important that adolescents are included in discussions and planning about their future. Otherwise, providers may focus on parents’ expectations, which may not fully support the adolescent. These findings also point to the need for studies helping parents and autistic adolescents to communicate about their goals and desires for the future.
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