孤独症家长需求分析与对策建议-中国残疾人联合会.pdfVIP

. . Monographic Study ASD / 专题研究 孤独症谱系障碍/ 孤独症家长需求分析与对策建议 ■郭德华 邓学易 赵 琦 温 洪 黄晶晶 【摘要】 为了解孤独症家长的客观现状和基本需求，为相关部门出台和实施孤独症相关政策提 供科学依据，中国精神残疾人及亲友协会通过自编的《中国孤独症家长需求调查问卷》和结构式访 谈，采用立意抽样方法结合方便取样原则，在全国 30 个省市自治区调查孤独症家长 3867 人，从 家长及家庭信息、孤独症患者信息、家庭现状评价和家长需求四个方面进行调查。以家长需求为视 角，分析现状和探讨对策。结果表明，现阶段我国孤独症家长的客观需求与薄弱的社会支持体系之 间的矛盾非常突出，孤独症家庭生态环境与家长生存状态不容乐观，应引起政府和社会的足够重视。 以期构建有效的社会支持体系，改善现状，为孤独症儿童的成长提供良好的家庭环境。 【关键词】 孤独症 ；家长需求 ；调查报告 Investigations and Analysis on the Needs of Parents of Children with Autism GUO De-hua, DENG Xue-yi, ZHAO Qi, WEN Hong, HUANG jing-jing 【 】This paper aimed to understand the objective situation and basic needs of parents of Abstract children with autism and provide scientific basis for the relevant departments issuing and implementing autism related policy. Directed by “the needs questionnaire for parents of children with autism, using purposive sampling method based on the principle of convenience, it conducted a survey of 3,867 parents of autistic children and structured interviews in 30 provinces and autonomous regions.Also it investigated four aspects from the parents / family information, autistic patient information, autism family status evaluation and parents demand. To parents demand perspective, analysis of the current situation and countermeasures, the results showed that currently the contradiction between the objective demand of parents of children with autism in China and the weak social support system is very outstanding; autism family environment and parents living condition are not optimistic. To improve the present situation, it is urgent and necessary to construct an effective social support system. This should cause enough attention of the government and the society. 【