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Understanding Hong Kong Chinese Families’ Experiences of an Autism/ASD Diagnosis

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Abstract

Little is known about the experience of Chinese parents of children diagnosed with autism spectrum disorders (ASD) living in the Hong Kong Special Administrative Region. Seventy-five parents of children (aged 6 months–18 years) with ASD diagnoses completed the Family Quality of Life Scale. Forty-five parents from the original surveyed cohort, also participated in semi-structured interviews. Parents’ perceptions of their child’s disability were influenced both by their cultural background and by the limited and expensive, pre- and post-diagnostic services available. Longer waiting times to diagnosis were associated with lower emotional well-being and perceived disability-related support. Clinicians are encouraged to become part of the support network for parents of children with ASD, to help parents to adjust to caring for their child.

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Acknowledgments

The project was funded by a large Faculty Research Grant from the Hong Kong Baptist University and logistical support was provided by NGO disability organizations. The authors would like to thank family caregivers and the agencies for their time and we are grateful to contributors for taking the time to share their perceptions and experiences with us.

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Authors and Affiliations

  1. Faculty of Human Sciences, Macquarie University Special Education Centre, Institute of Early Childhood, Macquarie University, Building X5A Room 209, North Ryde, Sydney, NSW, 2109, Australia

    Kathleen Tait

  2. Faculty of Education, University of Hong Kong, Room 219, 2/F, Runme Shaw Building, Pok Fu Lam, Hong Kong SAR

    Francis Fung

  3. School of Education Studies, Hong Kong Baptist University, AAB 844, 8/F, Academic & Admin. Building, 15# Baptist University Road, Kowloon Tong, Hong Kong SAR

    Aihua Hu

  4. Department of Psychology, Macquarie University, Sydney, NSW, 2109, Australia

    Naomi Sweller

  5. Northeast Forestry University, Economic Management Building, Harbin, Mainland China

    Wei Wang

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  1. Kathleen Tait
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Correspondence to Kathleen Tait.

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Appendix: Semi-structured questions asked during the interview sessions

Appendix: Semi-structured questions asked during the interview sessions

1 Who first suspected that there might be a concern about the child’s development?

2. How old was the child when you (other) were first concerned?

3. After a concern was raised (by you/other)—what happened next?

4. Where did you first take the child for assessment?

5. Did you obtain a confirmed diagnosis there?

6. Did you go anywhere else for an assessment?

7. Who made the final diagnosis?

8. How old was your child when the final diagnosis was made?

9. Can you describe your reaction at the time of the diagnosis?

10. What types of support, advice, and information were you given about understanding ASD at the time of the diagnosis?

11. Tell me about your experience in the period immediately after you received your child’s diagnosis of ASD?

12. What would have been helpful to you after you received the diagnosis for your child?

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Tait, K., Fung, F., Hu, A. et al. Understanding Hong Kong Chinese Families’ Experiences of an Autism/ASD Diagnosis. J Autism Dev Disord 46, 1164–1183 (2016). https://doi.org/10.1007/s10803-015-2650-z

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