社会工作与管理 ›› 2018, Vol. 18 ›› Issue (4): 34-39.

• 社会工作 • 上一篇    下一篇

自闭症儿童对家庭的影响及家庭应对策略:基于文献回顾的理解框架

李学会   

  1. 复旦大学社会发展与公共政策学院, 上海, 200433
  • 收稿日期:2018-03-20 出版日期:2018-07-15 发布日期:2018-07-13
  • 作者简介:李学会(1987-),男,汉族,博士研究生;主要研究方向:残障社会学,社会政策,社会组织治理。

The Influence of Autistic Children on Families and the Coping Strategies: An Understanding Framework Based on Literature Review

Li Xuehui   

  1. School of Social Development and Public Policy, Fudan University, Shanghai, 200433, China
  • Received:2018-03-20 Online:2018-07-15 Published:2018-07-13

摘要: 儿童被诊断为自闭症是引发压力的家庭事件,其影响持续而深远的。自闭症儿童给父母带来精神压力与角色压力,并进一步影响夫妻关系、亲子关系以及兄弟姐妹关系。家庭的应对策略包括:在家庭内部,家长调整对儿童的期望以及夫妻关系、家庭分工的调整;在家庭外部,家长寻求社会支持、进行政策倡导或者寻求组织化的努力等。在分析自闭症儿童对家庭及其成员的影响及家庭照顾和应对策略的基础上,构建了自闭症儿童对家庭影响的理解框架,这一框架同样对社会工作实务具有启发意义。

关键词: 自闭症儿童, 家庭成员, 应对策略, 家庭压力

Abstract: Children diagnosed with autism will bring stress to the families, and the effects are sustained and far-reaching. Autistic children bring mental pressure and role stress to their parents, and further affect the relationship between husband and wife, parent-child relationship, and sibling relationship. The family coping strategy can be executed from two aspects:internally, adjustment of the relationship between husband and wife, adaption of expectations for the children, re-planning family division within the family; and externally, families can seek social support, doing policy advocacy or seeking organization. Based on the above analysis, a framework is built to understand the influence to families, which is also useful for social work in the practical work process.

Key words: autistic children, family members, coping strategies, family stress

中图分类号: 

  • C916
[1] 樊越波, 揭晓锋, 邹小兵. 孤独症患病率回顾[J]. 中国儿童保健杂志, 2008(4):439-440.
[2] 李敬, 程为敏. 透视自闭症:本土家庭实证研究与海外经验[M]. 北京:研究出版社, 2011.
[3] 五彩鹿儿童行为矫正中心. 中国自闭症教育康复行业发展状况报告[M]. 北京:北京师范大学出版社, 2015.
[4] 中国精神残疾人及亲友协会. 中国孤独症家庭需求蓝皮书[M]. 北京:华夏出版社, 2014.
[5] 刘艳虹, 等. 自闭症研究七十年——基于国内外研究现状与前沿的可视化分析[M]. 北京:中国轻工业出版社, 2016.
[6] 倪赤丹, 苏敏. 自闭症家庭的需求与社会工作介入——来自深圳120个自闭症家庭的报告[J]. 广东工业大学学报(社会科学版)2012(5):36-41.
[7] KEARNEY P M, GRIFFIN T. Between joy and sorrow:being a parent of a child with developmental disability[J]. Journal of Advanced Nursing, 2001(34):582-592.
[8] LANDSMAN G. Mothers and models of disability[J]. Journal of Medical Humanities, 2005, 26(2/3):121-139.
[9] YOU H K, MCGRAW L A. The intersection of motherhood and disability:being a "good" Korean mother to an "imperfect" child[J]. Journal of Comparative Family Studies, 2011, 42(4), 579-598.
[10] WADDINGTON S R, BUSCHROSSNAGEL N A. The influence of a child's disability on mother's role functioning and psychological well-being[J]. Genetic Social & General Psychology Monographs, 1992, 118(3), 293-311.
[11] TAYLOR N E, WALL S M, LIEBOW H, et al. Mother and soldier:raising a child with a disability in a low-income military family[J]. Exceptional Children, 2005, 71(1), 83-99.
[12] BOYD B A, MCCARTY C H, SETHI C. Families of children with autism:a synthesis of family routines literature[J]. Journal of Occupational Science, 2014, 21(3), 322-333.
[13] EISENHOWER A S, BAKER B L, BLACHER J. Preschool children with intellectual disability:syndrome specificity, behaviour problems, and maternal well-being[J]. Journal of Intellectual Disability Research, 2005, 49(9), 657-71.
[14] ISENHOUR J A. Experiences and perceptions of fatherhood among fathers with sons who have autism spectrum disorders[D]. Boone, NC:NAppalachian State University, 2010.
[15] PELCHAT D, LEFEBVRE H, PERREAULT M. Differences and similarities between mothers' and fathers' experiences of parenting a child with a disability[J]. Journal of child health care 2003, 7(4), 231-247.
[16] 尚晓援. 中国残疾儿童家庭经验研究[M]. 北京:社会科学文献出版社, 2013.
[17] DAVIS N O, CARTER A S. Parenting stress in mothers and fathers of toddlers with autism spectrum disorders:associations with child characteristics[J]. Journal of Autism & Developmental Disorders, 2008, 38(7), 1278-1291.
[18] MOES D, KOEGEL R L, SCHREIBMAN L, et al. Stress profiles for mothers and fathers of children with autism.[J]. Psychological Reports, 1992, 71(2):1272-4.
[19] LATTA A, RAMPTON T, ROSEMANN J, et al. Snapshots reflecting the lives of siblings of children with autism spectrum disorders[J]. Child Care Health & Development, 2014, 40(4), 515-524.
[20] Macks R J, Reeve R E. The adjustment of non-disabled siblings of children with autism[J]. Journal of Autism & Developmental Disorders 2007, 37(6), 1060-1067.
[21] PETALAS M A, HASTINGS R P, NASH S, et al. Emotional and behavioral adjustment in siblings of children with intellectual disability with and without autism. Autism[J]. 2009, 13(5):471-83.
[22] FISHWIC V R. A literature review into parents' experiences of raising a child with a disability, and research exploring mothers' experiences of receiving a diagnosis of monosomy deletion syndrome for their child[D]. University of Birmingham, 2009.
[23] 陈瑜, 裴涛, 张宁. 自闭症谱系障碍患儿父母的复原力与心理健康[J]. 中国特殊教育, 2015(2):53-58.
[24] 深圳市自闭症研究会. 中国自闭症人士服务现状调查(华南地区)[M]. 北京:华夏出版社, 2013.
[25] O'CONNELL T, O'HALLORAN M, DOODY O. Raising a child with disability and dealing with life events:a mother's journey[J]. Journal of Intellectual Disabilities 2013, 17(4), 376-386.
[26] 年华. 星星点灯:一位自闭症孩子母亲的心灵独白[M]. 上海:上海锦绣文章出版社, 2013.
[27] HILLMAN J. Grandparents of children with autism:a review with recommendations for education, practice, and policy[J]. Educational Gerontology, 2007, 33(6), 513-527.
[28] KRUMINS J. 12 way to make a differente for you grandchild with Autism[J]. Exceptianal Parent. 2008(38):20-21.
[29] 张恒豪. 障碍者权利运动的策略与组织变迁:提供服务作为社会运动的手段?[C]//何明修, 林秀幸. 社会运动的年代:晚近二十年来的台湾行动主义. 台北:群学出版社, 2011.
[30] FÁVERO MARIA ÂNGELA BRAVO, SANTOS MANOEL ANTÔNIO DOS. Infantile autism and familiar stress:a systematic review of literature/autismo infantil e estresse familiar:uma revis o sistemática da literatura[J]. Psicologia Reflexão E Crítica. 2005, 18(18), 358-369.
[31] DARLING NANCY. Ecological Systems Theory:The Person in the Center of the Circles[J]. Research in Human Development. 2007(3-4), 203-217.
[32] NORTON P, DREW C. Autism and potential family stressors[J]. American Journal of Family Therapy, 1994(1), 67-76.
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