女孩和女性自闭症临床诊断道路上的障碍和弯路：一项定性二次分析。
Roadblocks and detours on pathways to a clinical diagnosis of autism for girls and women: A qualitative secondary analysis.
机构信息
Centre for Addiction and Mental Health, Toronto, ON, Canada.
Department of Occupational Science and Occupational Therapy, Temerty Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
出版信息
Womens Health (Lond). 2023 Jan-Dec;19:17455057231163761. doi: 10.1177/17455057231163761.
BACKGROUND
Autism is not always considered for girls and women until later along their clinical diagnostic pathways. Misdiagnosis or late diagnosis can pose significant disadvantages with respect to accessing timely health and autism-related services and supports. Understanding what contributes to roadblocks and detours along clinical pathways to an autism diagnosis can shed light on missed opportunities for earlier recognition.
OBJECTIVE
Our objective was to examine what contributed to roadblocks, detours, and missed opportunities for earlier recognition and clinical diagnosis of autism for girls and women.
DESIGN
We conducted a qualitative secondary analysis using data from a Canadian primary study that examined the health and healthcare experiences of autistic girls and women through interviews and focus groups.
METHODS
Transcript data of 22 girls and women clinically diagnosed with autism and 15 parents were analysed, drawing on reflexive thematic analysis procedures. Techniques included coding data both inductively based on descriptions of roadblocks and detours and deductively based on conceptualizations of sex and gender. Patterns of ideas were categorized into themes and the 'story' of each theme was refined through writing and discussing analytic memos, reflecting on sex and gender assumptions, and creating a visual map of clinical pathways.
RESULTS
Contributing factors to roadblocks, detours, and missed opportunities for earlier recognition and diagnosis were categorized as follows: (1) age of pre-diagnosis 'red flags' and 'signals'; (2) 'non-autism' mental health diagnoses first; (3) narrow understandings of autism based on male stereotypes; and (4) unavailable and unaffordable diagnostic services.
CONCLUSION
Professionals providing developmental, mental health, educational, and/or employment supports can be more attuned to nuanced autism presentations. Research in collaboration with autistic girls and women and their childhood caregivers can help to identify examples of nuanced autistic features and how context plays a role in how these are experienced and navigated.
背景
自闭症在女孩和女性的临床诊断路径中往往直到后期才被考虑。误诊或延迟诊断可能会在获得及时的健康和自闭症相关服务和支持方面带来重大不利影响。了解导致自闭症临床诊断路径中的障碍和弯路的原因，可以揭示早期识别的错失机会。
目的
我们的目的是研究导致自闭症女孩和女性早期识别和临床诊断的障碍、弯路和错失机会的原因。
设计
我们使用加拿大一项主要研究的数据进行了定性二次分析，该研究通过访谈和焦点小组研究了自闭症女孩和女性的健康和医疗保健经历。
方法
对 22 名临床诊断为自闭症的女孩和女性以及 15 名家长的转录数据进行了分析，借鉴了反思主题分析程序。技术包括根据障碍和弯路的描述进行归纳编码，以及根据性别概念进行演绎编码。思想模式被分类为主题，通过撰写和讨论分析备忘录、反思性别假设以及创建临床路径的可视化地图，对每个主题的“故事”进行细化。
结果
导致早期识别和诊断的障碍、弯路和错失机会的因素可分为以下几类：（1）诊断前“红旗”和“信号”的年龄；（2）首先出现“非自闭症”心理健康诊断；（3）基于男性刻板印象的狭隘自闭症理解；以及（4）缺乏和负担不起的诊断服务。
结论
提供发育、心理健康、教育和/或就业支持的专业人员可以更好地关注微妙的自闭症表现。与自闭症女孩和女性及其儿童照顾者合作开展的研究可以帮助确定微妙的自闭症特征的示例，以及背景如何在这些特征的体验和应对中发挥作用。
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