自上世纪60年代以来,家庭在ASD儿童早期干预中的作用逐渐凸显,早期干预研究与实践的重心逐渐从职业治疗师转向自闭症儿童的原生家庭成员。一方面,作为个体成长过程中最重要的原生家庭成员,父母在ASD儿童早期干预过程中具有极高的参与水平,能够及时发现ASD相关症状并能早于职业治疗师对ASD儿童进行早期干预,有助于自闭症儿童的治疗;但在另一方面,父母参与ASD儿童的早期干预活动也存在着许多困难,包括经济压力、情绪压力、自信力决策力及身体健康受损、专业素养欠缺等等。在今后的研究中,如何扬长避短,体现父母在ASD儿童早期干预上的独特优势,是今后早期干预研究的一个重要方向。
Since the 1960s, the role of family in the early intervention of ASD children has become increa-singly prominent. The focus of early intervention research and practice has gradually shifted from occupational therapists to the original family members of autistic children. On one hand, as the most important original family members in the process of individual growth, parents have a high level of participation in the early intervention process of ASD children, can timely detect the symptoms related to ASD, and can carry out early intervention on ASD children earlier than occupational therapists, which is conducive to the treatment of autistic children; on the other hand, parents’ participation in early intervention activities of ASD children also exists many difficulties, including economic pressure, emotional pressure, self-confidence, decision-making ability and physical health damage, lack of professional quality and so on. In the future research, how to make full use of the advantages and avoid the disadvantages and reflect the unique advantages of parents in early intervention of ASD children is an important direction of early intervention research in the future.
自闭症,早期干预,家长参与, ASD Early Intervention Parents’ Participation摘要
Since the 1960s, the role of family in the early intervention of ASD children has become increasingly prominent. The focus of early intervention research and practice has gradually shifted from occupational therapists to the original family members of autistic children. On one hand, as the most important original family members in the process of individual growth, parents have a high level of participation in the early intervention process of ASD children, can timely detect the symptoms related to ASD, and can carry out early intervention on ASD children earlier than occupational therapists, which is conducive to the treatment of autistic children; on the other hand, parents’ participation in early intervention activities of ASD children also exists many difficulties, including economic pressure, emotional pressure, self-confidence, decision-making ability and physical health damage, lack of professional quality and so on. In the future research, how to make full use of the advantages and avoid the disadvantages and reflect the unique advantages of parents in early intervention of ASD children is an important direction of early intervention research in the future.
Keywords:ASD, Early Intervention, Parents’ Participation
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1. 引言
自闭症,也称孤独症,其全称为自闭症谱系障碍(Autism Spectrum Disorders,以下简称ASD),是一种严重的神经发育障碍,由美国儿童精神病学家Kanner于1943年首次报道。近几十年来ASD出现比例呈现上升趋势:在20世纪80年代,ASD的患病率仅为0.3‰到0.5‰;2000年上升至6.7‰;至2006年,ASD患病比例上升至9.0‰ [1];2014年3月,美国疾病控制与预防中心(The centers for disease control and prevention, CDC)公布的数据显示:美国8岁儿童中ASD患病率已经发展到14.7‰;截止2017年4月,世界卫生组织(World Health Organization, WHO)估计得出全球每160名儿童中有1名是自闭症儿童。在当前时代,ASD已不再仅仅是一种罕见病症,它已然超过了儿童白血病和艾滋病数量的总和。而在自闭症的干预治疗当中,早期干预是应用最为广泛的方式之一。
在家庭中心取向的干预模式中,专业人士与ASD儿童家长的关系发生了变化,在实施干预的过程中不再以专业人员为主导,而是让家长与专业人员建立合作关系,并向以家庭成员为干预的实施主体转变 [7]。2014年,美国国家自闭症干预专业发展中心(National Professional Development Center on Autism Spectrum Disorder)已经明确地将家长执行式干预作为自闭症循证实践的27种干预方法之一,并将其界定为家长通过系统培训并运用个性化干预手段来改善ASD儿童的沟通社交能力,减少各种行为问题。家长执行式干预需要满足两个实施条件:其一,家长是实施干预的主体;其二,必须经过系统培训后,家长才能对儿童展开干预训练 [8]。家长以及家庭参与已经成为自闭症早期干预的研究热点之一 [9]。
林浩云,王盼宁. 自闭症儿童早期干预中家长作用的研究综述Review on the Role of Parents in Early Intervention of Autistic Children[J]. 创新教育研究, 2020, 08(06): 1022-1029. https://doi.org/10.12677/CES.2020.86166
参考文献ReferencesVismara, L.A. and Rogers, S.J. (2008) The Early Start Denvermodela Case Study of an Innovative Practice. Journal of Early Intervention, 31, 91-108. <br>https://doi.org/10.1177/1053815108325578Odom, S.L., Collet-Klingenberg, L., Rogers, S.J. and Hatton, D.D. (2010) Evidence-Based Practices in Interventions for Children and Youth with Autism Spectrum Disorders. Preventing School Failure: Alternative Education for Children and Youth, 54, 275-282. <br>https://doi.org/10.1080/10459881003785506Matson, J.L. and Konst, M.J. (2014) Early Intervention for Autism: Who Provides Treatment and in What Settings. Research in Autism Spectrum Disorders, 8, 1585-1590. <br>https://doi.org/10.1016/j.rasd.2014.08.007Petermann, F., Shonkoff, J.P. and Meisels, S.J. (1990) Early Childhood Intervention: The Evolution of a Concept.Simpson, R.L. (2008) Children and Youth with Autism Spectrum Disorders: The Search for Effective Methods. Focus on Exceptional Children, 40, 14. <br>https://doi.org/10.17161/fec.v40i7.6832胡晓毅. 美国自闭症幼儿早期综合干预研究[J]. 中国特殊教育, 2013(7): 22-29+36.Dunst, C.J. (2002) Family-Centered Practices: Birth through High School. Journal of Special Education, 36, 141-149.
<br>https://doi.org/10.1177/00224669020360030401Wong, C., Odom, S.L., Hume, K.A., et al. (2015) Evidence-Based Practices for Children, Youth, and Young Adults with Autism Spectrum Disorder: A Comprehensive Review. Journal of Autism and Developmental Disorders, 45, 1951-1966. <br>https://doi.org/10.1007/s10803-014-2351-z唐佳益, 王雁. 2010-2014年国际学界自闭症儿童早期干预研究热点——基于科学知识图谱的可视化分析[J]. 中国特殊教育, 2016(5): 35-42.Sameroff (1975) Transactional Models in Early Social Relations. Human Development, 18, 65-79.
<br>https://doi.org/10.1159/000271476Sameroff, A.J., Seifer, R. and Baldwin, B.C. (1993) Stability of Intelligence from Preschool to Adolescence: The Influence of Social and Family Risk Factors. Child Development, 64, 80-97. <br>https://doi.org/10.2307/1131438Bronfenbrenner, U. (1979) The Ecology of Human Development: Experiments by Nature and Design.Guralnick, M.J. and Bennett, F.C. (1987) The Effectiveness of Early Intervention for At-Risk and Handicapped Children.Rosin, P. (1996) Pathways: A Training & Resource Guide for Enhancing Skills in Early Intervention Service Coordination [Training Guide and Videotape].Murphy, D.L., Lee, I.M., Turnbull, A.P. and Turbiville, V. (1995) The Family-Centered Program Rating Scale: An Instrument for Program Evaluation and Change. Journal of Early Intervention, 19, 24-42.
<br>https://doi.org/10.1177/105381519501900104Simeonsson, R.J. and Bailey, D.B. (1990) Family Dimensions in Early Intervention. In: Meisels, S.J. and Shonkoff, J.P., Eds., Handbook of Early Childhood Intervention, Cambridge University Press, Cambridge, 428-444.National Research Council (2011) Educating Children with Autism. National Academy Press, Washington DC, 140-172.倪赤丹, 苏敏. 自闭症儿童家庭支持网的“理想模型”及其构建——对深圳120个自闭症儿童家庭的实证分析[J]. 社会工作, 2012(9): 46-50.黄辛隐, 张锐, 邢延清. 71例自闭症儿童的家庭需求及发展支持调查[J]. 中国特殊教育, 2009(11): 43-47.孙雯. 特殊儿童早期干预中家长参与和父母教养效能感研究[D]: [硕士学位论文]. 武汉: 华中师范大学, 2017.Strain, P.S., Schwartz, I.S. and Barton, E.E. (2011) Providing Interventions for Young Children with Autism Spectrum Disorders: What We Still Need to Accomplish. Journal of Early Intervention, 33, 321-332.
<br>https://doi.org/10.1177/1053815111429970Wood, J.J., Drahota, A., Sze, K., et al. (2009) Cognitive Behavioral Therapy for Anxiety in Children with Autism Spectrum Disorders: A Randomized, Controlled Trial. Journal of Child Psy-chology & Psychiatry, 50, 224-234.
<br>https://doi.org/10.1111/j.1469-7610.2008.01948.xKaiser, A.P., Hancock, T.B. and Nietfeld, J.P. (2000) The Effects of Parent-Implemented Enhanced Milieu Teaching on the Social Communication of Children Who Have Autism. Early Education and Development, 11, 423-446.
<br>https://doi.org/10.1207/s15566935eed1104_4Mcconachie, H. and Diggle, T. (2007) Parent Implemented Early Intervention for Young Children with Autism Spectrum Disorder: A Systematic Review. Journal of Evaluation in Clinical Practice, 13, 120-129.
<br>https://doi.org/10.1111/j.1365-2753.2006.00674.xLang, R., Machalicek, W., Rispoli, M., et al. (2009) Training Parents to Implement Communication Interventions for Children with Autism Spectrum Disorders (ASD): A Systematic Review. Evidence-Based Communication Assessment and Intervention, 3, 174-190. <br>https://doi.org/10.1080/17489530903338861Kasari, C., Siller, M., Huynh, L.N., Shih, W., Swanson, M., Hellemann, G.S., et al. (2014) Randomized Controlled Trial of Parental Responsiveness Intervention for Toddlers at High Risk for Autism. Infant Behavior and Development, 37, 711-721. <br>https://doi.org/10.1016/j.infbeh.2014.08.007Shapiro, C.J., Kilburn, J. and Hardin, J.W. (2014) Prevention of Behavior Problems in a Selected Population: Stepping Stones Triple p for Parents of Young Children with Disabilities. Research in Developmental Disabilities, 35, 2958- 2975. <br>https://doi.org/10.1016/j.ridd.2014.07.036Brown, J.A. and Woods, J.J. (2016) Parent-Implemented Communication Intervention: Sequential Analysis of Triadic Relationships. Topics in Early Childhood Special Education, 31, 208-215. <br>https://doi.org/10.1177/0271121416628200罗玲. 成都地区自闭症儿童家庭生活质量研究[D]: [硕士学位论文]. 成都: 四川师范大学, 2014.熊妮娜, 杨丽, 于洋, 等. 孤独症、肢体残疾、智力残疾儿童家庭经济负担调查[J]. 中国康复理论与实践, 2010(8): 91-94.Leigh, J.P. and Du, J. (2015) Brief Report: Forecasting the Economic Burden of Autism in 2015 and 2025 in the United States. Journal of Autism and Developmental Disorders, 45, 4135-4139. <br>https://doi.org/10.1007/s10803-015-2521-7Brown, R.I., Hong, K., Shearer, J., Wang, M. and Wang, S.Y. (2011) Family Quality of Life in Several Countries: Results and Discussion of Satisfaction in Families Where There Is a Child with a Disability. In: Enhancing the Quality of Life of People with Intellectual Disabilities, Springer, Berlin, 377-398. <br>https://doi.org/10.1007/978-90-481-9650-0_20Cohrs, A.C. and Leslie, D.L. (2017) Depression in Parents of Children Diagnosed with Autism Spectrum Disorder: A Claims-Based Analysis. Journal of Autism and Developmental Disorders, 47, 1416-1422.
<br>https://doi.org/10.1007/s10803-017-3063-yLarson, E. (2010) Ever Vigilant: Maternal Support of Participation in Daily Life for Boys with Autism. Physical & Occupational Therapy in Pediatrics, 30, 16-27. <br>https://doi.org/10.3109/01942630903297227朱瑞. 自闭谱系障碍儿童家庭早期干预的个案研究[D]: [硕士学位论文]. 上海: 华东师范大学, 2012.Mcgee, G.G., Morrier, M.J. and Daly, T. (1999) An Incidental Teaching Approach to Early Intervention for Toddlers with Autism. Research and Practice for Persons with Severe Disabilities, 24, 133-146.
<br>https://doi.org/10.2511/rpsd.24.3.133Kim, K.H. and Turnbull, A. (2004) Transition to Adulthood for Students with Severe Intellectual Disabilities: Shifting toward Person-Family Interdependent Planning. Research and Practice for Persons with Severe Disabilities, 29, 53-57.Rogers, S.J., Vismara, L., Wagner, A.L., Mccormick, C., Young, G. and Ozonoff, S. (2014) Autism Treatment in the First Year of Life: A Pilot Study of Infant Start, a Parent-Implemented Intervention for Symptomatic Infants. Journal of Autism and Developmental Disorders, 44, 2981-2995. <br>https://doi.org/10.1007/s10803-014-2202-ySolomon, R., Van Egeren, L.A., Mahoney, G., Quon Huber, M.S. and Zimmerman, P. (2014) Play Project Home Consultation Intervention Program for Young Children with Autism Spectrum Disorders: A Randomized Controlled Trial. Journal of Developmental & Behavioral Pediatrics, 35, 475-485. <br>https://doi.org/10.1097/DBP.0000000000000096徐云, 徐晨欣, 朱旻芮. 家长执行式干预在自闭症儿童家庭中的应用[J]. 中国临床心理学杂志, 2019, 27(3): 634-637+612.