Lerner Juliette E, Schiltz Hillary, Schisterman Noa, Ziegler Sonja, Lord Catherine
Semel Institute for Neuroscience and Human Behavior, University of California, Los Angeles, 760 Westwood Plaza, Suite 68-217, Los Angeles, CA, 90024, USA.
Department of Pediatrics in the Institute on Human Development and Disability, University of Washington, 1701 NE Columbia Road, Seattle, WA, 98195, USA.
J Autism Dev Disord. 2025 Mar 27. doi: 10.1007/s10803-025-06800-4.
Few studies have asked autistic adults and caregivers directly about what has most positively and negatively impacted their lives. This study sought to: (a) identify positive and negative factors experienced by autistic adults and caregivers; (b) test for within-subject differences in endorsement of promotive factors reported specific to four stages of development; and (c) test for differences in factors between adults with varying cognitive ability (i.e., less cognitively able [LCA; verbal IQ < 70] and more cognitively able [MCA; verbal IQ ≥ 70]). Participants included 91 autistic adults and caregivers. Autistic adults' VIQs ranged from 4 to 139. Participants completed a modified version of the Social/Emotional Functioning Interview which consists of open-ended questions about positive and negative factors experienced across development. Autistic adults and caregivers, regardless of cognitive abilities, frequently reported people supports as more helpful than specific services, aspects of education, or generative activities from early childhood through adulthood. For both cognitive groups, generative activities were increasingly important after childhood. Services were more frequently identified as helpful by LCA caregivers in adulthood, while education was reported more by MCA caregivers and autistic adults. Differences by cognitive ability in negative factors included that more LCA caregivers reported poorly prepared professionals/caregivers as disruptive, while more MCA caregivers and autistic adults reported family conflict and bullying. Positive and negative factors identified through interviews of lived experiences can inform targeted care based on strengths and needs across cognitive abilities and life stages.
很少有研究直接询问成年自闭症患者及其照顾者，什么对他们的生活产生了最积极和最消极的影响。本研究旨在：(a) 确定成年自闭症患者及其照顾者所经历的积极和消极因素；(b) 测试在报告的针对四个发展阶段的促进因素的认可方面的个体内差异；以及 (c) 测试不同认知能力的成年人（即认知能力较低 [LCA；言语智商<70] 和认知能力较高 [MCA；言语智商≥70]）之间在因素上的差异。参与者包括91名成年自闭症患者及其照顾者。成年自闭症患者的言语智商范围为4至139。参与者完成了一份修改版的社会/情感功能访谈，该访谈由关于在整个发展过程中经历的积极和消极因素的开放式问题组成。成年自闭症患者及其照顾者，无论认知能力如何，经常报告人际支持比特定服务、教育方面或从幼儿期到成年期的创造性活动更有帮助。对于两个认知组来说，创造性活动在童年之后越来越重要。LCA照顾者在成年期更频繁地认为服务有帮助，而MCA照顾者和成年自闭症患者更多地报告了教育方面的帮助。在消极因素方面，认知能力的差异包括更多LCA照顾者报告准备不足的专业人员/照顾者具有破坏性，而更多MCA照顾者和成年自闭症患者报告了家庭冲突和欺凌。通过对生活经历的访谈确定的积极和消极因素可以为基于不同认知能力和生命阶段的优势和需求的针对性护理提供信息。
