How Does a Western Approach to Autism Work within a Chinese Population? Service Provision for Children with Autism Spectrum Conditions in Hong Kong

Friday, May 16, 2014
Atrium Ballroom (Marriott Marquis Atlanta)
X. Sun1,2,3, C. Allison4, B. Auyeung3,5, S. Baron-Cohen3,6 and C. Brayne7, (1)Cambridge Institute of Pubic Health, University of Cambridge, Cambridge, United Kingdom, (2)The Jockey Club School of Public Health and Primary Care, The Chinese University of Hong Kong, Hong Kong, Hong Kong, (3)Autism Research Centre, University of Cambridge, Cambridge, United Kingdom, (4)Autism Research Centre, Department of Psychiatry, University of Cambridge, Cambridge, United Kingdom, (5)Department of Psychology, University of Edinburgh, Edinburgh, United Kingdom, (6)CLASS Clinic, Cambridgeshire and Peterborough NHS Foundation Trust, Cambridge, United Kingdom, (7)Cambridge Institute of Public Health, University of Cambridge, Cambridge, United Kingdom
Background: As a British colony between 1842-1997, Hong Kong (HK) adopted a British healthcare system. Originally part of mainland China, HK is thus a unique region in which Western and Eastern cultures combine to influence a small island. This affords an opportunity to examine how autism is recognized, understood, and supported, in a unique cultural context. Previous research in mainland China suggested underdeveloped services and delays in recognition of Autism Spectrum Conditions (ASC) partly due to certain beliefs about child development rooted in Chinese culture, such as late language being a positive attribute of a child. The cultural context of service provision for autism has not previously been explored in HK.

Objectives: (1) To investigate patterns of service provision for children with ASC in HK; (2) To investigate whether similar cultural issues found in mainland China also exist in HK.

Methods: Parents in the largest non-governmental organization in HK for preschool children with ASC were invited for participation. Thirty-four in-depth interviews were conducted using a semi-structured questionnaire (50 questions: from first awareness to intervention) developed from previous interviews in mainland China. Using a framework approach, seven themes were identified to summarize difficulties and perceptions into service development: 1) awareness and knowledge of ASC; 2) parenting patterns; 3) acceptance of diagnosis; 4) diagnostic confusion; 5) frustration along the pathway; 6) expectations of support; and 7) parental concerns.

Results: The identification and diagnostic service for ASC in HK uses a combination of early screening and multi-disciplinary assessments, based on a UK model. However, the majority of children were identified by parental initiation of referral (56%) and other check-ups (29%) rather than via screening. The mean age of children at first awareness of atypical development was 1.8 yrs (range: 1.4-3). There was a delay in diagnostic referral. Similar to mainland China, 17.7% families considered language delay a sign of child’s future success and did not seek help until later. The mean interval from first awareness to diagnosis was 9.3 months (SD = 6.9). The diagnostic process took an average of 4.6 months (SD = 4.5). Regarding intervention, children under 6 with ASC are entitled to receive intervention in government-supported non-profit rehabilitation centres. However, the mean time on the waiting list entering such centre was 14.8 months (SD = 5.4). More than half of the parents (56%) had never attended parent training courses to learn how to help their children outside the classroom. Similar to mainland China, there were no specific facilities for children with ASC older than 6.

Conclusions: Although adopting a more Western approach, this study highlights a perceived lack of professionals and rehabilitation services for ASC in HK, leading to long waiting times for services. Due to lack of knowledge of ASC, less than half of parents actively seek help, other than waiting. Although Western culture and system was adopted, similar cultural issues found in mainland China also exist in HK, which contribute to delays in the recognition of ASC. Further service development needs to be sensitive to the cultural context.

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