Strömberg Maria, Liman Lina, Bang Peter, Igelström Kajsa
Division of Neurobiology, Department of Biomedical and Clinical Sciences, Linköping University, University Hospital Campus, Linköping, Sweden.
Autism Adulthood. 2022 Mar 1;4(1):66-75. doi: 10.1089/aut.2020.0074. Epub 2022 Mar 9.
Autistic adults have an elevated risk of many health problems compared with the general population, making health care access extra critical. Unfortunately, autistic people often find health care settings quite aversive, and many medical providers report feeling unsure about how to interact with autistic patients. We aimed at characterizing specific challenges regarding sensory experiences and communicative barriers in health care settings.
We recruited adults to complete an anonymous online questionnaire on the topic of improving health care experiences for everyone. The questions covered demographics, sensory experiences in medical settings, and communication with health care providers. We quantified the associations between autism diagnosis and experiences of sensory discomfort and communication barriers in health care settings. We also did a qualitative analysis of text responses to questions on how to improve sensory environments and communication with providers.
Swedish adults (62 autistic and 36 nonautistic) participated in the study. The cohort was well educated, and autistic participants received their autism diagnosis late in life (median age 36 years, range 13-57). Compared with nonautistic participants, autistic participants reported greater discomfort with background sound levels in health care settings and felt more misunderstood by health care providers. Thematic analyses showed that auditory stimuli and proximity to other people were particularly bothersome for autistic participants, causing stress or avoidance and affecting the ability to interact with providers. Providers contributed to communication barriers by failing to recognize the need for individualized information, especially when respondents' difficulties were not visible or taken seriously. Participants requested greater clarity and supplementary written information. Providers also misunderstood autistic adults' body language or eye contact patterns, as they interpreted their clients through the lens of neurotypical expectations.
Our results extend previous research by emphasizing sensory aspects of health care settings and suggesting specific and reasonable adaptations. The results also highlight how the provider's implicit expectations of nonverbal communication caused misinterpretations of autistic people who were socially skilled but did not use typical body language. Based on the data, we suggest specific adaptations, many of which may also benefit nonautistic people.
与普通人群相比，成年自闭症患者面临多种健康问题的风险更高，因此获得医疗保健服务格外关键。不幸的是，自闭症患者常常觉得医疗保健场所非常令人厌恶，而且许多医疗服务提供者表示不确定如何与自闭症患者互动。我们旨在描述医疗保健场所中感官体验和沟通障碍方面的具体挑战。
我们招募成年人完成一份关于改善所有人医疗保健体验主题的匿名在线问卷。问题涵盖人口统计学信息、医疗场所中的感官体验以及与医疗服务提供者的沟通。我们对自闭症诊断与医疗保健场所中感官不适体验和沟通障碍之间的关联进行了量化。我们还对关于如何改善感官环境以及与医疗服务提供者沟通的问题的文本回复进行了定性分析。
瑞典成年人（62名自闭症患者和36名非自闭症患者）参与了该研究。该队列受教育程度较高，自闭症参与者在晚年才被诊断为自闭症（中位年龄36岁，范围13 - 57岁）。与非自闭症参与者相比，自闭症参与者表示在医疗保健场所对背景声音水平更感不适，并且感觉更容易被医疗服务提供者误解。主题分析表明，听觉刺激和与他人的近距离接触对自闭症参与者尤其困扰，会导致压力或回避行为，并影响与医疗服务提供者互动的能力。医疗服务提供者因未认识到提供个性化信息的必要性而造成沟通障碍，尤其是当受访者的困难不明显或未被认真对待时。参与者要求信息更清晰并提供补充书面信息。医疗服务提供者还误解了成年自闭症患者的肢体语言或眼神交流模式，因为他们是通过典型神经模式的期望来解读自己的客户。
我们的研究结果通过强调医疗保健场所的感官方面并提出具体合理的调整建议，扩展了先前的研究。研究结果还凸显了医疗服务提供者对非言语沟通的隐性期望如何导致对社交技能良好但不使用典型肢体语言的自闭症患者产生误解。基于这些数据，我们提出了具体的调整建议，其中许多建议可能对非自闭症患者也有益。
