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“它是为非我之人设计的”:对英国65岁及以上自闭症成年人未满足的医疗保健支持需求的反思性主题分析

'It's designed for someone who is not me': A reflexive thematic analysis of the unmet healthcare support needs in UK autistic adults aged 65 years and over.

作者信息

Mansour Hassan, Gillions Amy, Brown Jude, Pattenden Anoushka, Hartley Susan, Patel Sarifa, James Stephanie, Styles Martin, Mandy Will, Stott Joshua, O'Nions Elizabeth

机构信息

University College London, UK.

National Autistic Society, UK.

出版信息

Autism. 2025 Mar;29(3):754-765. doi: 10.1177/13623613241291081. Epub 2024 Oct 29.

Abstract

Autistic people are more likely to experience physical and mental health difficulties across the lifespan, leading to an increased risk of premature mortality likely due to health disparities. At present, little is known about the healthcare experiences of autistic older adults. Semi-structured interviews were conducted with 19 autistic adults aged 65 years or over living in the United Kingdom. Reflexive thematic analysis produced these themes: (1) A lifetime of being misunderstood; (2) Autistic people falling between the gaps; (3) Processing autism diagnosis in later life; (4) Concerns about service pressures and scarce resources; (5) Lack of continuity of care, empathy and understanding; (6) Anxiety, alexithymia and sensory overload; and (7) Reduced social support and concerns for the future. Some of the challenges autistic older adults faced were like those experienced by younger or middle-aged autistic adults. However, they also reported additional difficulties related to ageing and lifelong experiences of social exclusion. These difficulties were made worse by increased service pressures. A comprehensive approach is needed, including enhanced staff training, personalised care, targeted support and policy changes. Services should also consult with autistic older adults so they can advocate for their care, shape policy and co-design services.Lay abstractAutistic people often face both physical and mental health challenges throughout their lives, which can lead to a higher risk of premature death due to health inequalities. However, we know very little about the healthcare experiences of autistic older adults. In this study, we talked with 19 autistic adults aged 65 years or above living in the United Kingdom. We found these main themes: (1) A lifetime of being misunderstood; (2) Autistic people falling between the gaps; (3) Processing autism diagnosis in later life; (4) Concerns about service pressures and scarce resources; (5) Lack of continuity of care, empathy and understanding; (6) Anxiety, alexithymia and sensory overload; and (7) Reduced social support and concerns for the future. Themes show that autistic older adults face unique healthcare access challenges because services don't consider their lifelong experiences of social exclusion. Participants also worried about age-related decline coupled with reduced social support, which makes it harder for them to get support. To address these challenges, healthcare services should provide more targeted support, make policies and funding consistent, and improve healthcare provision by providing staff training. Importantly, they must also speak with autistic older adults so they can advocate for their current and future care.

摘要

自闭症患者在其一生中更有可能经历身心健康问题,这可能由于健康差距导致过早死亡的风险增加。目前,对于老年自闭症成年人的医疗保健经历知之甚少。我们对居住在英国的19名65岁及以上的自闭症成年人进行了半结构化访谈。反思性主题分析得出了以下主题:(1)一生被误解;(2)自闭症患者处于缝隙之中;(3)在晚年接受自闭症诊断;(4)对服务压力和资源稀缺的担忧;(5)缺乏护理的连续性、同理心和理解;(6)焦虑、述情障碍和感官过载;(7)社会支持减少和对未来的担忧。老年自闭症成年人面临的一些挑战与年轻或中年自闭症成年人所经历的挑战相似。然而,他们也报告了与老龄化以及社会排斥的终身经历相关的额外困难。服务压力的增加使这些困难更加恶化。需要一种全面的方法,包括加强员工培训、个性化护理、有针对性的支持和政策变革。服务机构还应与老年自闭症成年人协商,以便他们能够为自己的护理发声、塑造政策并共同设计服务。

摘要

自闭症患者在其一生中常常面临身心健康挑战,这可能因健康不平等导致过早死亡的风险更高。然而,我们对老年自闭症成年人的医疗保健经历了解甚少。在这项研究中,我们与居住在英国的19名65岁及以上的自闭症成年人进行了交谈。我们发现了这些主要主题:(1)一生被误解;(2)自闭症患者处于缝隙之中;(3)在晚年接受自闭症诊断;(4)对服务压力和资源稀缺的担忧;(5)缺乏护理的连续性、同理心和理解;(6)焦虑、述情障碍和感官过载;(7)社会支持减少和对未来的担忧。这些主题表明,老年自闭症成年人面临独特的医疗保健获取挑战,因为服务机构没有考虑到他们终身的社会排斥经历。参与者还担心与年龄相关的衰退以及社会支持的减少,这使得他们更难获得支持。为应对这些挑战,医疗保健服务机构应提供更有针对性的支持,使政策和资金保持一致,并通过提供员工培训来改善医疗保健服务。重要的是,他们还必须与老年自闭症成年人交谈,以便他们能够为自己当前和未来的护理发声。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/1453/11894832/7686c39e8e10/10.1177_13623613241291081-fig1.jpg

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