支持自閉症幼兒家庭的關係網絡

Support Networks for Families of Children with Autism

宋鴻燕(Hung-Yan Sung)

自閉症 ； 家庭關係 ； 正式社會支持系統 ； 非正式社會支持系統 ； 早期療育 ； autism ； family relations ； formal social support systems ； informal social support systems ； early interventions

應用心理研究

38期（2008 / 06 / 01）

173 - 207

繁體中文

研究者採用生態系統觀點探究自閉症幼兒的家庭關係，以母親所感知的社會支持網絡，呈現系統所發揮的功能。本研究以五名自閉症幼兒的母親為訪談對象，主要的目的在於了解以「幼兒為中心」所形成的支持網絡是否足以提供幼兒的特殊需求。家庭內部的關係為自閉症幼兒的非正式支持系統，包括父母、手足、祖父母、親戚與褓姆等不同關係的支持者。家庭外部因為自閉症幼兒的需求與醫療復健相關人士建立的關係，也是所謂的正式支持系統，由主治醫師、社工師、特教老師、心理學家以及治療師等人員所組成的專業團隊，搭建理想的療育網絡。本研究中的發現，透過母親積極地尋 求協助，正式或是非正式社會支持網絡並非不完整，而是提供協助的時效性仍待改善。訪談結果也發現父職參與的性質多為經濟與交通接送，父親表達對家人的情感需加以鼓勵，自閉症幼兒手足的應對與適應依其性別與年齡而有所不同。當家庭內部支持網絡隨著幼兒的成長擴大至家庭外部關係時，提供幼兒與其家庭健全的療育資 源網絡，在整合專業照顧資源的過程中，所謂「療育專家」的角色值得受到重視。文末建議未來制定相關政策時，應納入社區支持系統的角色與功能，使自閉症幼兒的家庭關係能夠更趨於多元化，進而發展以「家庭為中心」的支持網絡系統。

Family relations of children with autism perceived by mothers as social support networks were studied from an ecological systems perspective. Five mothers with autistic children were interviewed individually in order to reveal that, to what extent, the autistic child-centered support networks had provided with diverse resources. The significances of the internal family relationships between children and their parents, siblings, grandparents, relatives, and other caregivers were defined as the informal social support system. On the other hand, an ideal formal social support network was composed by a leading physician, with a team of members in social work, special education, as well as developmental psychology and therapies in all related fields. One of the major issues was to highlight the fullness of the support networks constructed by those members who were involved in the networks. The results revealed that mothers with autistic children were actively engaged in building up the extra-familial networks. However, the formal social support network was still unsatisfied with a lack of not satisfactory immediacy. It also indicated that father involvement was mainly related to the aspects of finance and transportation in family activities. Paternal care was encouraged to be expressive with genuine feelings and emotions towards the family. Siblings’ coping and adaptation to the situation were varied by their gender and age. As long as the relationship was outreached from the inner family to the outer family, with the construction of professional support resources ongoing, the role of the expert of the outsiders was critical. A closing note at the end suggests that any policies made in the future will be expected to include the community support systems in a fashion of muti-dimensional network for family-centered services.

1. 徐澄清(2004)。發展遲緩兒童之早期發展與療育：Ⅱ早期文化剝奪之影響。台灣精神醫學，3，155-171。
   連結：
2. Addison, S.(2004).The role and responsibilities of the service coordinator in early intervention.The Exceptional Parent,34,38-40.
3. Alvarez, A.,Reid, S.(1999).Autism and personality: Findings from the Tavistock Autism Workshop.London:Routledge.
4. American Psychiatric Association(2000).Diagnostic and statistical manual of mental disorders.Washington, DC:APA.
5. Bronfenbrenner, U.(1986).Ecology of the family as a context for human development: Research perspectives.Developmental Psychology,22,723-742.
6. Dunlap, G.,Fox, L.(1999).Supporting families of young children with autism.Infants and Young Children,12,48-54.
7. Freedman, R. I.,Boyer, N. C.(2000).The power to choose: Supports for families caring for individuals with developmental disabilities.Health and Social Work,1,59-74.
8. Haber, J. S.(2000).Early diagnosis and referral of children with developmental disabilities.American Family Physician,1,132-140.
9. Hauser-Cram, P.,Warfield, M. E.,Shonkoff, J. P.,Krauss, M. W.(2001).Monographs of the Society for Research in Child Development.MA:Blackwell.
10. Healy, A.(1991).Early intervention services for infants with disabilities.American Family Physician,1,102-103.
11. Kalmanson, B.,Seligman, S.(1992).Family-provider relationships: The basis of all interventions.Infants and Young Children,4,46-52.
12. MacLean, J. E.,Szatmari, P.,Johnes, M. B.,Bryson, S. E.,Mahoney, W. J.,Bartolucci, G.,Tuff, L.(1999).Familial factors influence level of functioning in pervasive developmental disorder.Journal of the American Academy of Child and Adolescent Psychiatry,6,746-753.
13. Ponder, M. J.(1991).The family physician's role in early intervention.American Family Physician,1,103-104.
14. Powers, M. D.(1989).Children with autism: A parents guide.MD:Bethesda, Woodbine House.
15. Rogers, S. J.,Ozonoff, S.,Maslin-Cole. C.(1993).Developmental aspects of attachment behavior in young children with pervasive developmental disorders.Journal of the American Academy of Child and Adolescent Psychiatry,6,1274-1282.
16. Schilmoeller, G. L.,Baranowski, M. D.(1998).Intergenerational support in families with disabilities: grandparents' perspectives.Families in Society: The Journal of Contemporary Human Services,5,465-476.
17. Shonkoff, J. P.(2000).Science, policy, and practice: Three cultures in search of a shared mission.Child Development,71,181-187.
18. Shonkoff, J.P.,Meisels S.(2000).Handbook of early childhood intervention.Cambridge University Press.
19. Trepagnier, C.(1999).Families with autism.Infants and Young Children,12,37-47.
20. Young, W. C.(1997).Families and the handicapped in northern Jordan.Journal of Comparative Family Studies,2,151-169.
21. 何友暉、陳淑娟、趙志裕、楊國樞、黃光國主編(1991)。中國人的心理與行爲。台北:桂冠。
22. 何華國(2006)。特殊幼兒早期療育。台北:五南出版社。
23. 利翠珊(1999)。家庭心理學的系統觀點與研究。應用心理研究，2，21-40。
24. 利慶松(1991)。東海大學社會工作研究所。
25. 吳伊雯(2001)。東吳大學社會工作學系。
26. 汪麗真(1995)。自閉症兒童母親教養壓力、親職角色適應與教養服務需求之研究。德育學報，11，105-125。
27. 林伯威(2000)。兒童發展遲緩比例略高於國際。中時晚報。
28. 邱毓玲(2001)。東海大學社會工作學系。
29. 施怡廷(1998)。東海大學社會工作研究所。
30. 倪志琳(1995)。自閉症兒童與其家庭。特殊教育季刊，56，16-22。
31. 徐畢卿(1995)。自閉症的遺傳研究。醫學繼續教育，5，649-653。
32. 張淑芳(2000)。自閉兒童家庭的壓力。台東特教簡訊，11，57-63。
33. 郭芳嫻(1998)。中國文化大學兒童福利研究所。
34. 陳一蓉(1992)。中正大學心理學系。
35. 陳麗如(2004)。特殊教育論題與趨勢。台北:心理出版社。
36. 陶瑜(2004)。系統觀點對自閉症兒童的家庭需求之研究。特殊教育暨創造思考研究，1，105-131。
37. 黃郁菁(1995)。陽明大學公共衛生研究所。
38. 黃麗娥(1998)。中國文化大學兒童福利研究所。
39. 楊國樞、黃光國主編(1991)。中國人的心理與行爲。台北:桂冠出版社。
40. 鄭偉琪(1993)。臺灣師範大學特殊教育研究所。
41. 蕭美珠(2004)。屏東師範學院國民教育研究所。
42. 鍾莉娟總校閱(2004)。早期療育手冊。台北:心理出版社。
43. 顏瑞隆(2002)。自閉症兒童行爲問題家庭介入方案實施探究。東臺灣特殊教育學報，4，237-264。

1. 古思潔(2016)。家庭復原力與父母身心健康狀況之相關研究:以發展遲緩兒童家庭為例。長榮大學社會工作學系（所）學位論文。2016。1-101。