自闭症儿童母亲在养育儿童过程中的需求调查

A Survey on the Support Needed by Mothers of Autistic Children in China

本研究的目的是了解中国大陆的自闭症儿童的母亲在养育儿童的过程中需要什么样的支援。这次调查考虑到我国的地域性差异,选出了5个地区的具有代表性的民间疗育机构,对机构内接受指导的200名母亲(每个机构40名,平均年龄33.6岁)进行问卷式问答。这些机构都设立在大中城市。结果发现在中国还没有专门进行自闭症儿童的诊断、治疗、咨询、疗育、保育、教育的医院、机构、学校。而且,自闭症儿童的母亲们对孩子的养育和教育,以及对儿童的将来有极大的不安,却找不到可以咨询的机构和机会。这是造成母亲们育儿苦恼的最大原因。另外,造成母亲们苦恼的因素还有经济负担,这和政府机构所提供的支持有很大关系。

The purpose of the research was to clarify the support needed by mothers of autistic children when bringing up the children in China's Mainland. Given the regional disparity in the country,local childcare institutions in five typical regions and 200 mothers （40 mothers per institution with average age of 33.6 years old）,who had received nursing guidance, were selected to answer the questionnaires. The institutions were all located in big or medium-sized cities, such as Shanghai, Beijing, Xi＇ an, Chengdu and Qingdao. According to the results of survey, the authors found that there were few specialized hospitals, institutions and schools that were responsible for the diagnosis/ treatment, consultation, nursing/childcare and education for autistic children in China. Lacking opportunities to consult with, mothers were worrying about the education, even the future of the children and this contributed to the main reason for their anxiety. In addition ,economic burdens, another cause of the mothers＇ uneasiness, were greatly related to the support of the government.