Restricted accessResearch articleFirst published online 2018-5
How Taiwanese parents of children with autism spectrum disorder experience the process of obtaining a diagnosis: A descriptive phenomenological analysis
An autism spectrum disorder can result in considerable stress and confusion for parents as they attempt to understand their child’s problems and obtain a diagnosis. Few studies have explored the parental experience in the context of Chinese culture. The purpose of this study was to understand the experiences of parents in Taiwan of children diagnosed with autism spectrum disorder. In total, 15 parents, 1 father and 14 mothers, were recruited by purposive sampling. This qualitative study used semi-structured interviews and descriptive phenomenological analysis. The findings indicated that parents of children diagnosed with autism spectrum disorder underwent five coping experiences during the diagnostic process: (1) uncertainty and difficulty understanding their child’s behaviour, which occurred during the pre-diagnosis phase; (2) obligation to obtain professional services; (3) anxious searching for a second opinion, which occurred during the diagnosis phase; (4) acceptance and fortitude and (5) further adjustment during the post-diagnosis phase. Our findings add to our understanding of how parents experience the diagnostic process, which could improve medical professionals’ counselling and support for parents at the stage of obtaining a diagnosis for their children.
American Psychiatric Association (2013) Diagnostic and Statistical Manual of Mental Disorders: DSM-5.Washington, DC: American Psychiatric Association.
2.
BensonPR (2010) Coping, distress, and well-being in mothers of children with autism. Research in Autism Spectrum Disorders4(2): 217–228.
3.
CarlssonEMiniscalcoCKadesjoBet al. (2016) Negotiating knowledge: parents’ experience of the neuropsychiatric diagnostic process for children with autism. International Journal of Language & Communication Disorders51(3): 321–338.
ChamakBBonniauBOudayaLet al. (2011) The autism diagnostic experiences of French parents. Autism15(1): 83–97.
6.
ChenLSLiCWangCHet al. (2015) Autism spectrum disorders: perceptions of genetic etiology and recurrence risk among Taiwanese parents of affected children. Clinical Genetics88: 129–134.
7.
ChenTM (2003) Taiwan’s new national health insurance program: genesis and experience so far. Health Affairs22: 61–76.
8.
ChouYCPalleyHA (1998) The impact on the family of having a child with developmental disabilities in Taiwan: the interactional and social resource context. Social Development Issues20: 35–52.
9.
ChristensenDLBaioJBraunKVet al. (2016) Prevalence and characteristics of autism spectrum disorder among children aged 8 years – autism and developmental disabilities monitoring network, 11 sites, United States, 2012. Morbidity and Mortality Weekly Reports (MMWR). Available at: http://www.cdc.gov/mmwr/volumes/65/ss/ss6503a1.htm
10.
ColemanMGillbergC (2012) The Autisms. New York: Oxford University Press.
11.
CraneLChesterJWGoddardLet al. (2016) Experiences of autism diagnosis: a survey of over 1000 parents in the United Kingdom. Autism20(2): 153–162.
12.
EstesAMunsonJDawsonGet al. (2009) Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay. Autism13(4): 375–387.
13.
GiorgiA (2012) The descriptive phenomenological psychological method. Journal of Phenomenological Psychology43(1): 3–12.
14.
HarringtonJWPatrickPAEdwardsKSet al. (2006) Parental beliefs about autism: implications for the treating physician. Autism10(5): 452–462.
15.
HoHSYiHGriffithsSet al. (2014) ‘Do it yourself’ in the parent-professional partnership for the assessment and diagnosis of children with autism spectrum conditions in Hong Kong: a qualitative study. Autism18(7): 832–844.
16.
HowlinPMooreA (1997) Diagnosis in autism: a survey of over 1200 patients in the UK. Autism1(2): 135–162.
17.
HsuSWChiangPHLinLPet al. (2012) Disparity in autism spectrum disorder prevalence among Taiwan national health insurance enrollees: age, gender and urbanization effects. Research in Autism Spectrum Disorders6: 836–841.
18.
HsuYCTsaiSLHsiehMHet al. (2015) On my own: a qualitative phenomenological study of mothers of young children with autism spectrum disorder in Taiwan. Journal of Applied Research in Intellectual Disabilities. Epub ahead of print 3November2015. DOI: 10.1111/jar.12229.
19.
HuangCYYenHCTsengMHet al. (2014) Impacts of autistic behaviors, emotional and behavioral problems on parenting stress in caregivers of children with autism. Journal of Autism and Developmental Disorders44: 1383–1390.
20.
Kubler-RossE (2005) On Grief and Grieving: Finding the Meaning of Grief through the Five Stages of Loss. New York: Simon & Schuster.
21.
LamAGZaneNWS (2004) Ethnic differences in coping with interpersonal stressors. Journal of Cross-Cultural Psychology35: 446–459.
22.
LamLWMackenzieAE (2002) Coping with a child with Down syndrome: the experiences of mothers in Hong Kong. Qualitative Health Research12(2): 223–237.
23.
LazarusRSFolkmanS (1984/2011) Stress, Appraisal and Coping. New York: Springer Publishing.
24.
LinCRTsaiYFChangHL (2008) Coping mechanisms of parents of children recently diagnosed with autism in Taiwan: a qualitative study. Journal of Clinical Nursing17(20): 2733–2740.
25.
LincolnYSGubaEG (1985) Naturalistic Inquiry. Newbury Park, CA: SAGE.
26.
LiuGZ (2001) Chinese Culture and Disability: Information for U.S. Service Providers. Buffalo, NY: Center for International Rehabilitation Research Information and Exchange (CIRRIE).
27.
LudlowASkellyCRohlederP (2011) Challenges faced by parents of children diagnosed with autism spectrum disorder. Journal of Health Psychology17(5): 702–711.
28.
LuiPPRollockD (2013) Tiger mother: popular and psychological scientific perspectives on Asian culture and parenting. American Journal of Orthopsychiatry83(4): 450–456.
29.
MackintoshVHGoin-KochelRPMyersBJ (2012) ‘What do you like/dislike about the treatments you’re currently using?’: a qualitative study of parents of children with autism spectrum disorders. Focus on Autism and Other Developmental Disabilities27(1): 51–60.
30.
MancilGRBoydBABedesemP (2009) Parental stress and autism: are there useful coping strategies?Education and Training in Developmental Disabilities44(4): 523–537.
31.
MansellWMorrisK (2004) A survey of parents’ reactions to the diagnosis of an autistic spectrum disorder by a local service. Autism8: 387–407.
32.
MednickLCogenFHendersonCet al. (2007) Hope more, worry less: hope as a potential resilience factor in mothers of very young children with type 1 diabetes. Children’s Health Care36: 385–396.
33.
OsborneLAReedP (2008) Parents’ perceptions of communication with professionals during the diagnosis of autism. Autism12(3): 309–324.
34.
ShyuYITsaiJLTsaiWC (2010) Explaining and selecting treatments for autism: parental explanatory models in Taiwan. Journal of Autism and Developmental Disorders40(11): 1323–1331.
35.
SiklosSKernsKA (2007) Assessing the diagnostic experiences of a small sample of parents of children with autism spectrum disorders. Research in Developmental Disabilities28(1): 9–22.
36.
Sleeboom-FaulknerM (2010) Frameworks of Choices: Predictive and Genetic Testing in Asia. Amsterdam: Amsterdam University Press.
37.
SpiegelbergH (1975) Doing Phenomenology. Dordrecht: Martinus Nijhoff.
38.
StraussACorbinJ (1998) Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory. 2nd ed.Thousand Oaks, CA: SAGE.
39.
TaitKMundiaLFungF (2014) Raising young children with autism spectrum disorders in Hong Kong: the impact of cultural values and stigma on Chinese parents’ coping strategies. International Journal Advances in Social Science and Humanities2(1): 7–15.
40.
Taiwan Society of Child and Adolescent Psychiatry (TSCAP) (2016) Official announcement from Taiwan society of child and adolescent psychiatry. Available at: http://www.tscap.org.tw
41.
WangJLeeLCChenYS (2012) Assessing autistic traits in a Taiwan preschool population: cultural validation of the social responsiveness scale. Journal of Autism and Developmental Disorders42: 2450–2459.
42.
WangPMichaelsCADayMS (2011) Stresses and coping strategies of Chinese families with children with autism and other developmental disabilities. Journal of Autism and Developmental Disorders41(6): 783–795.
43.
WebbSJJonesEJHKellyJet al. (2014) The motivation for very early intervention for infants at high risk for autism spectrum disorder. International Journal of Speech Language Pathology16(1): 36–42.
44.
WongV (2009) Use of complementary and alternative medicine (CAM) in autism spectrum disorder (ASD): comparison of Chinese and western culture (part A). Journal of Autism and Developmental Disorders39(3): 454–463.
Supplementary Material
Please find the following supplemental material available below.
For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.
For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.
