A Pilot Study: Daily Experiences and Sibling Relationship among Siblings of Adolescents and Adults with Autism Spectrum Disorders in Taiwan

前驅研究：青少年和成年自閉症者兄弟姐妹之日常生活經驗與手足關係

10.30072/JDR.201209.0001

林玲伊(Ling-Yi Lin)

手足關係 ； 共同參與活動 ； 自閉症 ； Autism ； shared activities ； sibling relationships

身心障礙研究季刊

10卷3期（2012 / 09 / 01）

163 - 178

英文

手足關係在華人家庭中是相當重要的一種家庭關係，對自閉症者來說，手足在其一生中扮演極重要角色。然而，目前國內相關文獻對於青少年和成年自閉症者手足之生活經驗的研究仍付之闕如。本研究的目的是探討台灣青少年和成年自閉症者兄弟姐妹的生活經驗以及如何看待他們的手足關係。本研究使用橫斷性研究，採取立意取樣的方式，從自閉症協進會以及自閉症基金會的會員為取樣的對象。我們招募了29位有一個兄弟或姊妹為自閉症者的手足（年齡介於11至27歲）。參與者完成自填正向情感量表、流行病學研究中心憂鬱量表及共同參與活動等相關問卷。量化的資料以描述性統計分析。過去一年中，手足與自閉症者共同參與的活動包括：出去餐廳吃飯（93.1%）、去購物或出去辦事（93.1%）、去拜訪親友或聚會（93.1%）、渡假（75.9%）、從事娛樂活動（72.4%）以及去看醫生或醫院門診（62.1%）。手足自陳對於自閉症兄弟姊妹的正向情感明顯高於感受來自兄弟或姊妹對自己的正向情感。手足關係中的正向情感在同性別與不同性別的手足之間有顯著的差異。有58.6％的手足超過憂鬱症篩檢切分點（16分或以上）。超過七成（71.4%）的成年手足之憂鬱程度達到憂鬱症篩檢切分點。探討自閉症者手足其生活經驗與手足關係，能提醒父母重視正常手足的調適。而成年手足罹患憂鬱症狀的風險較高，此研究結果值得進一步擴大研究樣本。

No other familial relationship lasts longer than the sibling relationship. Sibling relationships are one of the most important family relationships in Chinese families. However, there is no published research on the experiences of Taiwanese siblings who have a brother or sister with an autism spectrum disorder (ASD). The purpose of this study was to examine how siblings of adolescents and adults with an ASD in Taiwan view the relationships with their siblings. We recruited 29 Taiwanese siblings (age ranged from 11 to 27) who had a brother or sister with an ASD. Self-reported written questionnaires were completed by the sibling and included ratings of positive affect in the sibling relationship, depressive symptoms, and a report of whether or not siblings engaged in six shared activities over the past year. Data were presented by descriptive statistics. Taiwanese siblings engaged in several shared activities over the past year. The most frequent activities were meal (93.1%), shopping (93.1%), and visit activities (93.1%). The next frequent activities were vacation (75.9%), recreation (72.4%), and medical (62.1%) activities. Siblings perceived significantly lower levels of positive affect from their brother or sister with an ASD compared to their positive affect toward their brother or sister with an ASD. Positive affect in the sibling relationship differed between the same-gender and mixed gender sibling dyads among Taiwanese siblings. Over half of siblings (58.6%) reported a high level of depression as the cut-off score of 16 has been used. The majority of examined adult siblings (71.4%) indicated that they had a high level of depression. Siblings experienced both positive and negative feelings when living with their brother or sister with an ASD. Parents should pay attention on siblings' adjustment. Adult siblings may have at increased risk of depressive symptoms, which may be worth replicating with larger samples.

1. Taiwan Department of Health. (2011). Statistical Data, http://www.doh.gov.tw/ (2011/7/4)
2. Taiwan Ministry of the Interior. (2008). Statistical Yearbook of Interior, http://sowf.moi.gov.tw/stat/week/list.htm (2011/7/4).
3. Taiwan Ministry of the Interior. (2012). Statistical Yearbook of Interior, http://sowf.moi.gov.tw/stat/month/list.htm (2012/6/1).
4. American Psychiatric Association(2000).Diagnostic and statistical manual of mental disorders.Washington, DC:American Psychiatric Association.
5. Baltes, P.(Ed.),Schaie, W.(Ed.)(1973).Life-span development psychology: personality and socialization.New York:Academic Press.
6. Centers for Disease Control and Prevention(2010).Prevalence of autism spectrum disorders-autism and developmental disabilities monitoring network, United States, 2006.MMWR Surveillance Summaries,59(30),956.
7. Chen, C.-M.(2007).Taipei,College of Medicine, National Taiwan University.
8. Cheng, C.-P.,Yen, C.-F.,Ko, C.-H.,Yen, J.-Y.(2012).Factor structure of the center for epidemiologic studies depression scale in Taiwanese adolescents.Comprehensive Psychiatry,53(3),299-307.
9. Chien, C. P.,Cheng, T. A.(1985).Depression in Taiwan: Epidemiological survey utilizing CES-D.Psychiatria et Neurologia Japonica,87(5),334-338.
10. Cicirelli, V. G.(1995).Sibling relationships across the life span.New York:Plenum Press.
11. DeGrace, B. W.(2004).The everyday occupation of families with children with autism.American Journal of Occupational Therapy,58(5),543-550.
12. Doherty, N. A.,Feeney, J. A.(2004).The composition of attachment networks throughout the adult years.Personal Relationships,11(4),469-488.
13. Gatz, M.,Hurwicz, M.(1990).Are older people more depressed? Cross-sectional data on the CES-D scale factors.Psychology and Aging,5(2),284-290.
14. Greenberg, J. S.,Seltzer, M. M.,Orsmond, G. I.,Krauss, M.W.(1999).Siblings of adults with mental illness or mental retardation: Current involvement and expectation of future caregiving.Psychiatric Services,50(9),1214-1219.
15. Hastings, R. P.(2003).Behavioral adjustment of siblings of children with autism.Journal of Autism and Developmental Disorders,33(2),99-104.
16. Hastings, R. P.(2007).Longitudinal relationships between sibling behavioral adjustment and behavior problems of children with developmental disabilities.Journal of Autism and Developmental Disorders,37(8),1485-1492.
17. Hastings, R. P.(2003).Behavioral adjustment of siblings of children with autism engaged in applied behavior analysis early intervention programs: The moderating role of social support.Journal of Autism and Developmental Disorders,33(2),141-150.
18. Hsu, H. C.,Chang, M. C.(2004).Successful aging and active aging in Taiwan: A multi-level analysis.Taiwanese Journal of Social Welfare,3(2),1-36.
19. Kaminsky, L.,Dewey, D.(2002).Psychosocial adjustment in siblings of children with autism.Journal of Child Psychology and Psychiatry,43(2),225-232.
20. Lempers, J. D.,Lempers-Clark, D. S.(1992).Young, middle, and late adolescents comparisons of the functional importance of five significant relationships.Journal of Youth and Adolescence,21(1),53-96.
21. Lin, N.(1989).Measuring depressive symptomatology in China.Journal of Nervous and Mental Disease,177(3),121-131.
22. Lin. J.-D.,Lin, L.-P.,Wu, J.-L.(2009).Administrative prevalence of autism spectrum disorders based on national disability registers in Taiwan.Research in Autism Spectrum Disorders,3(1),269-274.
23. Liu, Y.-L.(1998).Family support, peer support and adolescents' coping with different stressors.Journal of National Taitung Teachers College,9,37-60.
24. Mchale, S. M.,Sloan, J.,Simeonsson, R. J.(1986).Sibling relationships of children with autistic, mentally retarded, and nonhandicapped brothers and sisters.Journal of Autism and Developmental Disorders,16(4),399-413.
25. Orsmond, G. I.,Kuo, H.,Seltzer, M. M.(2009).Siblings of individuals with autism spectrum disorder: Sibling relationships and well-being in adolescence and adulthood.Autism,13(1),59-80.
26. Orsmond, G. I.,Seltzer, M. M.(2000).Brothers and sisters of adults with mental retardation: Gendered nature of the sibling relationship.American Journal on Mental Retardation,105(6),486-508.
27. Orsmond, G. I.,Seltzer, M. M.(2007).Siblings of individuals with autism or Down syndrome: Effects on adult lives.Journal of Intellectual Disability Research,51(9),682-696.
28. Orsmond, G. I.,Seltzer, M. M.(2009).Adolescent siblings of individuals with an autism spectrum disorder: Testing a diathesis-stress model of sibling well-being.Journal of Autism and Developmental Disorders,39(7),1053-1065.
29. Phillips, M. R.,West, C. L.,Shen, Q.,Zheng, Y.(1998).Comparison of schizophrenic patients' families and normal families in China, using Chinese versions of FACES-II and the Family Environment Scales.Family Process,37(1),95-106.
30. Pilowsky, T.,Yirmiya, N.,Doppelt, O.(2004).Social and emotional adjustment of siblings of children with autism.Journal of Child Psychology and Psychiatry,45(4),855-865.
31. Procidano, M. E.,Heller, K.(1983).Measures of perceived social support from friends and from family: Three validation studies.American Journal of Community Psychology,11(1),1-24.
32. Radloff, L.(1977).The CES-D scale: A self-report depression scale for research in the general population.Applied Psychological Measurement,1(3),385-401.
33. Rivers, J. W.,Stoneman, Z.(2003).Sibling relationships when a child has autism: Marital stress and support coping.Journal of Autism and Developmental Disorders,33(4),383-394.
34. Roeyers, H.,Mycke, K.(1995).Siblings of a child with autism, with mental retardation and with a normal development.Child: Care, Health and Development,21(5),305-319.
35. Ross, P.,Cuskelly, M.(2006).Adjustment, sibling problems and coping strategies of brothers and sisters of children with autistic spectrum disorder.Journal of Intellectual & Developmental Disability,31(2),77-86.
36. Seltzer, M. M.,Greenberg, J. S.,Krauss, M. W.(1997).Siblings of adults with mental retardation or mental illness: Effects on lifestyle and psychological well-being.Family Relations,46(4),395-405.
37. Smetena, J. G.,Campione-Barr, N.,Metzger, A.(2006).Adolescent development in interpersonal and societal contexts.Annual Review of Psychology,57,255-284.
38. Verte, S.,Roeyers, H.,Buysse, A.(2003).Behavioural problems, social competence and self-concept in siblings of children with autism.Child: Care, Health and Development,29(3),193-205.
39. Yirmiya, N.,Gamliel, I.,Pilowsky, T.,Feldman, R.,Baron-Cohen, S.,Sigman, M.(2006).The development of siblings of children with autism at 4 and 14 months: Social engagement, communication, and cognition.Journal of Child Psychology and Psychiatry,47(5),511-523.

1. 鄭凱芸、葉文虎(2018)。翻牆的記憶－身心障礙者的手足關係。臺灣社會工作學刊，20，41-73。