A qualitative exploration of the experience of autistic females in Hong Kong.

Journal: Autism : The International Journal Of Research And Practice
Published:
Abstract

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.

Authors
Gary Yu Lam, Constance Kit Chow, Sibyl Chan
Relevant Conditions

Autism Spectrum Disorder