Krempley Tema, Schmidt Elizabeth K
Nisonger Center, The Ohio State University, Columbus, Ohio, USA.
Sargent College, Department of Occupational Therapy, Boston University, Boston, Massachusetts, USA.
Autism Adulthood. 2021 Mar 1;3(1):37-51. doi: 10.1089/aut.2020.0042. Epub 2021 Mar 18.
Activities of daily living (ADLs) are activities that people engage in on a routine basis, such as brushing their teeth, preparing a meal, and caring for their child. Independence with ADLs is associated with better outcomes in independent living, education, employment, relationships, and mental health. Therefore, this perspective piece includes a review of the literature and assessment databases to identify and summarize ADL assessments for Autistic adults. These assessments were compared and analyzed using the neurodiversity paradigm. Specifically, we compared assessments using predetermined priorities the authors identified: (1) assessment type, (2) inclusivity, and (3) performance factors. We identified five unique norm-referenced measures, four performance-based measures, and a variety of checklists, surveys, questionnaires, and/or interviews used to assess ADL performance among Autistic adults. The authors present their perspectives regarding the challenges with the current assessments, including the high-frequency use of norm-referenced assessments, lack of inclusivity, and failure to consider performance factors (e.g., sensory, motor, and emotional), and the paucity of assessments designed specifically for Autistic adults older than 30 years. In response to these challenges, we recommend researchers partner with Autistic adults to develop a new assessment tool. If researchers or clinicians are using existing measures, we recommend that they utilize self-report over proxy-report and include methods to improve the accessibility of the assessment. We also recommend that clinicians and researchers offer breaks, comfort objects, or sensory modifications during the assessment to decrease anxiety; and ask follow-up questions to understand whether environment or emotional health are impacting one's ADL performance.
Activity of daily living (ADL) assessments are used to determine what Autistics can and cannot do in their day-to-day life, what services they may be eligible for, and to monitor gains. However, we struggled to find an assessment that was useful and relevant from an Autistic point-of-view. The purpose of this article was to review and evaluate current ADL assessments usefulness for Autistics and provide recommendations for improving the ADL assessment process. The first author is an Autistic social worker and the second author is an occupational therapist and postdoctoral fellow. The authors' perspective is based in the neurodiversity paradigm and social model of disability, which centers on respecting and acknowledging differences in the brain and their effects on Autistics' lives. We believe in strengths-based approaches versus deficit-based models. We found 17 measurement tools, some that compared Autistic ADL performance with neurotypical performance, a few that were observation-based meaning the researcher or clinician watched the Autistic person complete the ADLs, and many forms or guides that asked questions about ADL performance. Only six measures allowed Autistic people to respond to the questions themselves, whereas the rest of the measures had someone else respond for them. These measures did not include questions about how sensory differences (e.g., feeling upset by the feeling of jeans or the taste of minty toothpaste) or feeling sad or nervous may also impact ADL performance. We recommend that researchers partner with Autistic adults to make new ADL assessments. If researchers or clinicians are using previously made ADL assessments, we recommend that they use self-report and adapt the materials to make it easier to understand (e.g., using pictures). We also recommend that researchers and clinicians ask Autistics what they need or want to make the assessment easier and more comfortable for them. Finally, researchers and clinicians should ask follow-up questions about sensory differences and whether someone is feeling sad or nervous to know how this impacts their ability to do their ADL tasks. These recommendations will help Autistic adults be more involved in the evaluation process, which will make the assessments more trustworthy and relevant to Autistics. This also could help more Autistic people get services and supports that are useful to them. Finally, this may help researchers when monitoring if these supports or services actually work.
日常生活活动（ADLs）是人们日常进行的活动，如刷牙、做饭和照顾孩子。在日常生活活动中保持独立与在独立生活、教育、就业、人际关系和心理健康方面取得更好的结果相关。因此，这篇观点文章包括对文献和评估数据库进行综述，以识别和总结针对成年自闭症患者的日常生活活动评估。使用神经多样性范式对这些评估进行了比较和分析。具体而言，我们根据作者确定的预定优先级对评估进行了比较：（1）评估类型，（2）包容性，以及（3）表现因素。我们识别出五项独特的常模参照测量、四项基于表现的测量，以及用于评估成年自闭症患者日常生活活动表现的各种清单、调查、问卷和/或访谈。作者阐述了他们对当前评估所面临挑战的看法，包括常模参照评估的高频使用、缺乏包容性、未考虑表现因素（如感官、运动和情绪方面），以及专门为30岁以上成年自闭症患者设计的评估匮乏。针对这些挑战，我们建议研究人员与成年自闭症患者合作开发一种新的评估工具。如果研究人员或临床医生正在使用现有测量方法，我们建议他们采用自我报告而非代理报告，并纳入提高评估可及性的方法。我们还建议临床医生和研究人员在评估期间提供休息、安抚物品或感官调整以减轻焦虑；并询问后续问题以了解环境或情绪健康是否正在影响一个人的日常生活活动表现。
日常生活活动（ADL）评估用于确定自闭症患者在日常生活中能做什么和不能做什么、他们可能符合哪些服务条件以及监测进展情况。然而，我们很难找到从自闭症患者角度来看有用且相关的评估。本文的目的是回顾和评估当前ADL评估对自闭症患者的有用性，并为改进ADL评估过程提供建议。第一作者是一名自闭症社会工作者，第二作者是一名职业治疗师和博士后研究员。作者的观点基于神经多样性范式和残疾社会模型，该模型以尊重和承认大脑差异及其对自闭症患者生活的影响为核心。我们相信基于优势的方法而非基于缺陷的模型。我们找到了17种测量工具，一些将自闭症患者的ADL表现与神经典型表现进行比较，少数是基于观察的，即研究人员或临床医生观察自闭症患者完成ADL，还有许多询问ADL表现相关问题的表格或指南。只有六项测量允许自闭症患者自己回答问题，而其余测量则由其他人代为回答。这些测量没有包括关于感官差异（如因牛仔裤的感觉或薄荷味牙膏的味道而感到不适）或悲伤或紧张情绪如何也可能影响ADL表现的问题。我们建议研究人员与成年自闭症患者合作制作新的ADL评估。如果研究人员或临床医生正在使用以前制作的ADL评估，我们建议他们使用自我报告并调整材料使其更易于理解（如使用图片）。我们还建议研究人员和临床医生询问自闭症患者他们需要或想要什么以使评估对他们来说更容易和更舒适。最后，研究人员和临床医生应该询问关于感官差异以及某人是否感到悲伤或紧张的后续问题，以了解这如何影响他们完成ADL任务的能力。这些建议将有助于成年自闭症患者更多地参与评估过程，这将使评估对自闭症患者更具可信度和相关性。这也可能帮助更多自闭症患者获得对他们有用的服务和支持。最后，这在监测这些支持或服务是否真正有效时可能对研究人员有所帮助。
