Lam Gary Yu Hin, Chow Constance Kit Ching, Chan Sibyl Wai
The Chinese University of Hong Kong, Hong Kong.
Autism. 2025 Apr;29(4):1047-1057. doi: 10.1177/13623613241295318. Epub 2024 Dec 20.
There are fewer females than males diagnosed with autism, but autistic females are said to be under-identified and underrepresented in the existing diagnostic and service systems. The gender discrepancy may potentially be attributed to the lack of accurate understanding of autistic females and their needs. Emerging research has begun to document the experiences of autistic women in Western countries, but their experience in Eastern cultures is almost unknown. This study aimed to investigate the lived experience of autistic women in Hong Kong. Thirteen formally diagnosed or self-diagnosed autistic women completed semi-structured interviews, discussing how they identified with autism, their diagnostic experience, and their understanding of autism. Results based on thematic analysis revealed Hong Kong autistic women commonly experienced emotional problems and encountered autistic models on the way they came to identify with autism, despite often being dismissed by families and professionals. They found an autism diagnosis or identity meaningful to their self-understanding. Societal misunderstanding toward autism had a great impact on their self-identity as an autistic female. Findings can inform improved services for autistic women in Hong Kong and provide insights to enhance understanding of autism in Chinese culture.Lay abstractThere are more males than females with autism. One of the reasons can be that we do not understand autistic females well. Some research in Western cultures has begun to document the lived experience of autistic females, but no such studies are conducted with Chinese autistic females. This study explored the first-person experience of living with autism in Hong Kong autistic women. We conducted qualitative interviews with 13 women with a formal diagnosis of autism or self-diagnosed as autistic. We used semi-structured interviews to discuss how they came to recognize or identify with autism, their diagnostic experience, and their understanding of autistic females. We summarized several broad themes that depicted their experience. Participants recognized autism in themselves when seeing other autistic people. They indicated mental health challenges that led them to seek help from professionals, who might sometimes reject their concerns about autism. Participants found it meaningful to have an autism diagnosis or identity, but other people's judgment would affect their self-understanding. Participants also described themselves different from the stereotypes of autism, not the same as autistic males, and were perceived by others as not autistic enough. Our findings suggested autistic women in Hong Kong faced challenges in identity development and support services. There is a need to increase awareness and knowledge about autism in professionals and the public. Understanding how unique cultural factors that influence the identity of autistic women or individuals in Chinese cultures is important to promote their well-being.
被诊断患有自闭症的女性比男性少,但据说自闭症女性在现有的诊断和服务体系中未得到充分识别和体现。这种性别差异可能归因于对自闭症女性及其需求缺乏准确的了解。新兴研究已开始记录西方国家自闭症女性的经历,但她们在东方文化中的经历几乎无人知晓。本研究旨在调查香港自闭症女性的生活经历。13名经正式诊断或自我诊断为自闭症的女性完成了半结构化访谈,讨论她们如何认同自闭症、她们的诊断经历以及她们对自闭症的理解。基于主题分析的结果显示,香港自闭症女性在认同自闭症的过程中普遍经历情绪问题并遇到自闭症榜样,尽管她们常常被家人和专业人士忽视。她们发现自闭症诊断或身份对自我认知有意义。社会对自闭症的误解对她们作为自闭症女性的自我认同有很大影响。研究结果可为改善香港自闭症女性的服务提供参考,并为增进对中国文化中自闭症的理解提供见解。
患自闭症的男性比女性多。原因之一可能是我们对自闭症女性了解不足。西方文化中的一些研究已开始记录自闭症女性的生活经历,但尚未对中国自闭症女性进行此类研究。本研究探索了香港自闭症女性患自闭症的第一人称经历。我们对13名经正式诊断为自闭症或自我诊断为自闭症的女性进行了定性访谈。我们使用半结构化访谈来讨论她们如何开始认识或认同自闭症、她们的诊断经历以及她们对自闭症女性的理解。我们总结了几个描述她们经历的广泛主题。参与者在看到其他自闭症患者时认识到自己患有自闭症。她们指出心理健康方面的挑战促使她们向专业人士寻求帮助,而专业人士有时可能会忽视她们对自闭症的担忧。参与者发现自闭症诊断或身份有意义,但他人的评判会影响她们的自我认知。参与者还描述自己与自闭症的刻板印象不同,与自闭症男性不一样,且被他人认为不够自闭。我们的研究结果表明,香港自闭症女性在身份认同发展和支持服务方面面临挑战。有必要提高专业人士和公众对自闭症的认识和了解。了解影响中国文化中自闭症女性或个体身份认同的独特文化因素对于促进她们的福祉很重要。